Welcome!
Boston Children’s Answers: Raising Celiac is a podcast from the Celiac Disease Program at Boston Children’s Hospital dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. Hosted by Education Director Vanessa Weisbrod, each month the podcast will feature experts from across the United States and around the world to discuss the complexities of this chronic genetic condition and how it intertwines with so many other autoimmune diseases.
Accreditation
Every episode of the Boston Children’s Answers: Raising Celiac podcast is accredited by the Boston Children’s Hospital’s Continuing Education Department for 0.5 AMA PRA Category 1 Credits ™ for physicians, 0.5 contact hours for nurses, 0.5 ACE CE continuing education credits for social workers, and 0.5 CEUs for Registered Dietitians. To claim credits, please listen to the episodes below and complete the brief corresponding survey for each episode.
Episodes
12/15 Episode 1: History of Celiac Disease: Does Gluten Really Cause so Many Problems?
Expert Guest: Dr. Dascha Weir, Boston Children’s Hospital
Learning objectives:
1.) Describe celiac disease and the proper diagnosis techniques
2.) Identify common and uncommon symptoms of celiac disease
3.) Explain common errors in celiac disease diagnosis
To claim credit, please register for an account on our course website and complete a podcast survey here.
[00:00:00] Host: Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the Education Director of the Celiac Program at Boston [00:00:15] Children’s Hospital, and each month on the podcast, we will invite leading experts to dive into a condition related to Celiac. And look at how it impacts a patient family. The latest research and offers suggestions for health providers to manage these [00:00:30] complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA category one credits for physicians. 0.5 contact hours for nurses. 0.5 ACE CCE Continuing education credits for social workers and 0.5 CEUs for registered dieticians claim your credits for listening to today’s episode, please visit [00:01:00] dme.hospital.org/raising celiac. Let’s get started with this month’s Raising Celiac story.
[00:01:09] Guest: Peter was a pretty normal toddler. He giggled all the time, played joyfully with his family and [00:01:15] friends, and loved every food his mom put in front of him, especially avocados, broccoli, and snicker doodle cookies. His mom lovingly referred to him as her chubby little munch. Until just before his third birthday when he seemed to thin out all around but not get [00:01:30] any taller. His preschool class photo came in and he was a full head shorter than the other kids in the class. Despite being one of the oldest, something had to be up right.
[00:01:41] Host: Celiac disease is a chronic genetic autoimmune condition that can [00:01:45] affect any system of the body. The only treatment is a lifelong gluten-free diet. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing important nutrients from food and cause a variety of symptoms like [00:02:00] abdominal pain, nausea, diarrhea, vomiting, fatigue, weight loss, mouth ulcers, and growth issues to name a few.
[00:02:08] Guest: Peter’s parents took him to the pediatrician. One of the first tests they ran was for celiac disease. It was [00:02:15] positive. Peter’s parents were both surprised and not surprised at the same. They were aware of this condition because Peter’s grandmother also had celiac disease. Though her main symptoms were diarrhea and vomiting. She never had issues growing. How could [00:02:30] Peter have the same disease but not obviously react when eating the foods that made Grandma so physically ill?
[00:02:35] Host: Celiac disease can affect patients in very different. Some might have very obvious physical symptoms, while others may be more subtle or even none at all, [00:02:45] regardless of the symptoms, the reaction in the body is the same. When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with vii, tiny finger-like projections that [00:03:00] absorb nutrients from the food passing. in celiac disease, gluten damages the intestines and causes the villa to break down, leaving a smooth lining that can no longer absorb nutrient. It’s.
[00:03:11] Guest: As Peter’s parents dove into researching everything about [00:03:15] celiac disease, they quickly learned that the rest of the family needed to be tested and that symptoms could impact any system of the body. Peter’s dad had spent his entire life with crippling neuropathy in his hands and feet. He also tested positive for celiac [00:03:30] disease. Then a few months later, his aunt tested positive after seeing a dermatologist for a blistery rash on her elbows. Oddly enough, Peter’s cousin also tested positive for celiac disease but had no distinguishable symptoms and was only tested [00:03:45] because he also had type one diabetes. Were all of these differing symptoms really related to eating gluten and as Celiac really so common that several family members all have it.
[00:03:55] Host: Not to give it all away, but the answer is yes. All of these different [00:04:00] symptoms and many more can be related to gluten. As Peter’s family quickly learned, celiac disease is far from uncommon. An estimated 1% of people in North America are affected by this autoimmune disease. Typically more girls than boys [00:04:15] and many are undiagnosed, and Celiac is also closely related to many other chronic diseases including type one diabetes and thyroid disease. So this season on Raising Celiac, we’re going to explore why we’ll talk to [00:04:30] experts across the United States and around the world to discuss why celiac disease is so complicated and how better understanding it may be the key to learning more about other autoimmune conditions. So let’s start raising Celiac.
[00:04:43] Today we talk about the history [00:04:45] of celiac disease with Dr. Dosha Weir, the clinical director of the Celiac disease Program at Boston Children’s Hospital. Dr. Weir first became interested in celiac disease during her medical training and is now a board-certified pediatric gastroenterologist with [00:05:00] expertise in celiac disease in children. Dr. Weir’s recent research has focused on non-responsive celiac disease in children, and she is a champion for supporting food insecure families with celiac disease. Dr. Weir sits on the executive committee of the Harvard Medical School [00:05:15] Celiac Research Program and the Board of the Celiac Kids Connection.
[00:05:18] Welcome Dr. Weir to Raising Celiac.
[00:05:21] Thank you so much for having me. It’s really a pleasure to be here.
[00:05:25] So before we talk more about Peter’s family story, I wanna talk about the history of [00:05:30] celiac disease. When and how was it discovered?
[00:05:33] Celiac disease is not a new thing, even though many of us have only just started to hear about it more regularly. It actually was first described by a physician back in the Roman [00:05:45] Times, around a hundred to 200 a d and he described, um, You know, he described patients who had problems with digestion and absorption, and actually called it celiac affection at that point in time.
[00:05:58] Celiac is [00:06:00] actually from the Greek word belly, which makes reference to one of the classical symptoms that we sometimes see with celiac disease of, of a vi, a big, distended belly. So, it really does go way back. Um, and then it was mentioned in the medical [00:06:15] literature as far back as the 16 hundreds and through the 18 hundreds and the 19 early 19 hundreds European, British, and American physicians identified and discussed celiac disease.
[00:06:27] And trialed various dietary treatments without [00:06:30] the understanding that gluten was triggering celiac disease, which is really interesting to look back at how that piece was fit into the, to understand celiac disease. Um, in 1920s there was an American physician named Dr. [00:06:45] Haas, and he noticed, um, in, in Puerto Rico that in the city where people ate bread, there was more suffering of celiac. While the farmers who lived in the country and [00:07:00] mostly ate bananas, rarely suffered from celiac disease. And he made that observation and decided that the key to treating celiac disease was bananas. He did not pick up that the gluten, perhaps it was the absence of gluten. That was really, was really the key [00:07:15] there. Um, and he, he really developed a banana-based diet that did have some success in treating kids. Celiac disease back in the early 19 hundreds. Um, so it’s just kind of interesting because he really was prescribing the diet without realizing [00:07:30] exactly what he was doing.
[00:07:31] That’s so interesting.
[00:07:33] Yeah, I thought it was really interesting. And they call people who had celiac disease in that era and survived, uh, banana babies actually, It wasn’t until after World War II when the connection was made between [00:07:45] celiac disease and the trigger of gluten, of ingested gluten, and there was a Dutch pediatrician whose name was William Carl Dickey, who observed that during the war when there was no bread available, that Dutch children with celiac [00:08:00] disease got better and that they were not dying. And he really noticed that there was this big improvement in kids with celiac disease and then when the bread returned, they started getting sick again. And that really, that really helped him make that connection which was obviously a huge breakthrough in the [00:08:15] treatment of celiac disease
[00:08:16] and that advancement was in the 1950s when we started being able to do small bowel biopsies and that really paved the way. For us to be able to confirm celiac disease by the characteristic inflammation [00:08:30] and damage that we see when someone with celiac disease is consuming gluten. And then the last piece was, um, the advent of serologic tests. So ttg IGA is a blood test that we have that we really rely on a lot to [00:08:45] help us figure out who has celiac disease. And that was really only recognized as a marker of celiac disease, um, in 1997. So that was another really big step that helped us understand celiac disease and recognize celiac disease [00:09:00] much better than we had done previous.
[00:09:02] it’s been amazing to see over the last, you know, 20 years how much we’ve learned and how far our community has come.
[00:09:09] It really is amazing, isn’t it?
[00:09:11] Absolutely. So as we heard from Peter’s family, [00:09:15] celiac disease affects people in many ways if there are so many symptoms. How can doctors know when the right time is to screen for celiac? Should they always just be testing no matter what the ailment?
[00:09:25] It’s a really good question because you’re right. The range of how people show up with celiac [00:09:30] disease is so broad. There are so many different ways people can show us that they have celiac disease. Um, and, and what’s really tricky about it is some of those symptoms are really common symptoms of, of being human, you know, and they’re not always linked to [00:09:45] celiac disease. And so, um, It can be really tricky to figure out who to screen. There’s really two groups that we think about who need screening. One are people who have a variety of symptoms, you know, including gastrointestinal symptoms, growth issues, and, and many, [00:10:00] many other symptoms as we’ve sort of outlined in Peter’s case. I think we should have a really low threshold to sending blood work to look for celiac disease. So There’s another group though, that we also need to think about, and that’s kids. Kids that are if you have a first degree family member with celiac disease, [00:10:15] for example, or you have another disorder like an autoimmune disease such as thyroid disease or type one diabetes, your risk of having celiac disease is higher than the average population. And so we should be thinking as a medical community about [00:10:30] actively screening those patients as well.
[00:10:32] Can you tell our listeners what some of the more common symptoms of celiac disease are?
[00:10:38] some of the common symptoms that we see in celiac disease are gastrointestinal symptoms like abdominal [00:10:45] pain, nausea. Some people will have changes in stool and it doesn’t just have to be diarrhea. It can also be constipation. Um, another big way that we see children presenting with celiac disease is not growing well, and that might be that their linear growth, their [00:11:00] height is stunted, and that they have something that we call short. Or it might be that they are not gaining weight well or are actually losing weight. Those symptoms in kids are red flags, that there is something going on in the body. And it turns out that celiac [00:11:15] disease is, is a very major cause of those symptoms in kids. Um, but there’s other non GI symptoms that are relatively common. Iron deficiency anemia is another big one that can be a sign of celiac disease. Um, and uh, fatigue [00:11:30] is another one that I actually see quite a.
[00:11:33] So is it really possible to have no symptoms at all, but still test positive for Celia?
[00:11:39] It is. So we keep track of the diagnosis of celiac disease in our program [00:11:45] and we’ve gone, we’ve been doing that since, you know, 2001. And when we look at the numbers of kids that we’ve diagnosed, we see that a a little bit under 10% of patients, uh, don’t have identifiable symptoms before the diagnosis. Um, which is [00:12:00] really surprising to families when they find themselves, you know, thinking about this diagnosis and a kid that they really were not worried about prior to, prior to the blood test that was sent.
[00:12:09] But one of the things that I think is really interesting is that I, I. Over the [00:12:15] years have become a little more reluctant to calling that asymptomatic celiac disease because I’ve had so many experiences where kids, we’ve identified that they have celiac disease, they go on a gluten-free diet, they come back for follow up, and there is something that’s better that they hadn’t [00:12:30] identified beforehand is off. Often it’s, Oh, my kid has so much more energy. Or sometimes kids will verbal. , I, I did have abdominal pain and now it’s gone. I think kids are so resilient that I think sometimes they don’t realize that they have a symptom until it’s [00:12:45] not there. Or they don’t realize that a symptom might not be normal that everybody else feels until it’s not there. So I, I, I hesitate a little bit to use asymptomatic, um, the asymptomatic label on patients. I can tell you that there are absolutely [00:13:00] people who do not have symptoms and do not feel better on a gluten-free diet. And it, and it can be a hard thing for families and patients to wrap their heads around.
[00:13:07] So let’s say you have a patient who is seemingly asymptomatic or you know, doesn’t have any obvious noticeable symptoms to themselves, [00:13:15] um, and they go in the gluten-free diet and they’re not feeling better, why should they stick to that gluten-free diet?
[00:13:20] There are a lot of good reasons to treat celiac disease. Even if you don’t have symptoms. Obviously, if you have symptoms, that’s a really big motivating factor to everybody. Um, but if [00:13:30] you don’t have symptoms, you still have the inflammation and damage in your intestine and, and long term inflammation in your intestinal tract is not a healthy thing.
[00:13:38] It can predispose you to nutritional deficiencies, which can have health. Including bone density [00:13:45] problems and osteopenia or osteoporosis, which is like a, um, um, a lack of bone density in weak bones. Um, he can also lead to things like infertility and there are descriptions in adults with untreated celiac disease who have certain [00:14:00] malignancies of the small intestine, um, which, uh, are associated with untreated celiac disease.
[00:14:05] so the stakes are really high. The other piece that is particularly relevant to the, like children and the pediatric population is growth. You [00:14:15] know, kids may not grow to their full potential and when they hit their growth spurt, they may not grow, as tall as they should be, and they won’t realize it until it’s too late.
[00:14:24] So that’s another big reason.
[00:14:26] All very good reasons
[00:14:28] We think so[00:14:30]
[00:14:31] Ad Break: The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases. Through research, education, and awareness, while supporting multidisciplinary approaches to health,[00:14:45] we are thrilled to support the production of this educational.
[00:14:50] welcome back. So, Dr. Weir, we hear all the time that it can take years for a patient to be correctly diagnosed with celiac disease. Why does it take so long in some.[00:15:00]
[00:15:01] I think a lot of this. Is because of the variety of how patients show up with celiac disease. And sometimes the symptoms can be very subtle or the symptoms can be atypical. I think, um, a [00:15:15] lot of people in the medical field and outside of the medical field, Note about the classic presentation of celiac disease.
[00:15:22] The young child who has failure to thrive, a big swollen belly might be throwing up or having diarrhea. tend to get [00:15:30] diagnosed, uh, very quickly. Okay. But what is actually more common is to be, to be less dramatic and to be older. So in our, in our program, the average age of diagnosis is about 10.
[00:15:42] And these patients may have some [00:15:45] abdominal pain, they may have some fatigue. And, and like I referenced before, a lot of these symptoms are very frequent symptoms of, of childhood and of adolescence, and can be explained away for other reasons, either by the family and not coming to present. Care, you know, [00:16:00] not asking for help and sorting out the, the, the symptoms, but also the physicians may, may not think to send, um, the celiac testing, the celiac serology testing.
[00:16:11] So I think, I think that the reason why it takes so long, or historically [00:16:15] why the reason why it has taken so long is because it, it, it, it can be, it can be complicated and tricky and I don’t think it’s always been on everybody. Um, radar to think about it in those more subtle, in those most more subtle cases.
[00:16:28] I, I like to think that [00:16:30] we’ve gotten better through the years, um, and identifying it. Um, but I think there are still people who have symptoms for longer than they should before we figure it out.
[00:16:38] so just so we’re setting the record straight, can you tell our listeners what are the correct tests for celiac disease [00:16:45] and what would you see on those tests come back where the pediatrician should refer to a gastroenterologist?
[00:16:51] Absolutely. Our best blood test is something called tissue transaminase. Which is a mouthful iga, we call it ttg IGA for [00:17:00] short, sort of a short way to say it. Um, so that test is a really helpful test, um, when you’re worried about someone having celiac disease, and we recommend sending it with a total iga.
[00:17:11] So immunoglobulin A is one of the components of our immune [00:17:15] system, and it’s a building block of the antibodies. And so you need to have enough IGA in your body in order to make the TTG IGA antibody that we see with celiac disease. And what’s interesting is that patients with celiac [00:17:30] disease have a. Risk of having something called an IGA deficiency where your body doesn’t make enough of that immunoglobulin.
[00:17:37] And so you need to know if your patient, if that person has enough IGA to have a positive test. So it’s really [00:17:45] important to send the ttg iga and the total iga now. If someone doesn’t have enough iga, um, there are other tests that we can send. Um, and the best test is something called the de contaminated GL and peptide, I g G, [00:18:00] and that’s the, that’s a really good test to send in someone who doesn’t have enough iga, to mount a positive response.
[00:18:07] So if they have a negative TTG level, but uh, only a positive iga, would they still be referred to gastroenter? [00:18:15] Um,
[00:18:16] They probably would be. Yes. Um, there are, like you’re referencing, there are other tasks that can be sent, um, looking for celiac disease and some of them are better than others. You know, I, I think the bottom line is that, um, some of the [00:18:30] tasks that are out. Are not as good. Um, but if they’re positive, they’re really hard to ignore.
[00:18:35] And we know that celiac disease doesn’t always follow the rules. And sometimes we have people with celiac disease who don’t have the typical blood test positive. You know? So if there’s [00:18:45] something that doesn’t seem right, whether that’s a lab, whether that’s an IgG based lab or something about your patient, even if the blood work comes back for celiac disease and it’s normal, if you’re worried about that.
[00:18:56] You know, most gastroenterologists will be happy to see them [00:19:00] and to help sort it out because we know that sometimes celiac disease can, can be difficult to diagnose.
[00:19:06] So the biopsy is something that happens once they get to the gastroenterologist, but it’s not something that all parents are comfortable with. Especially now that there’s more [00:19:15] knowledge about the European guidelines that aren’t always requiring the biopsy for diagnosis. Can you talk about how gastroenterologists evaluate if a biopsy is the right choice for a patient?
[00:19:24] Of course, this is another conversation. We have a lot with our, with our families and our patients. [00:19:30] Um, we’re lucky that we have the European guidelines that outline a subset of patients with celiac disease who might not need the biopsies because that has given us a lot of flexibility and how we make the D.[00:19:45]
[00:19:45] But the gold standard or what we have always thought of as sort of the gold standard or the best way to diagnose celiac diseases with biopsies. Um, and, and there’s a good reason for that. It is, it is a very clear way of knowing if somebody has celiac disease, because [00:20:00] we know the blood work isn’t right a hundred percent.
[00:20:01] So I think there’s a lot of value to getting small bowel biopsies to really know where you’re starting. I, there is data that shows kids who have biopsy confirmed disease do better long term on the [00:20:15] diet. Um, I think that that is true in some cases. I have other patients who have not been biopsy confirmed to do beautifully on the diet.
[00:20:22] Um, so that piece isn’t, isn’t a, a big convincing factor to me, but it is something that I mention to families. Um, [00:20:30] the other piece is that by having biopsy confirmed disease, I think it opens doors for you in the future in terms of being.
[00:20:37] Oh.
[00:20:38] Facilitating involvement in future clinical trial trials or having access to new medications that we [00:20:45] hope, or treatments that will, will come out to treat celiac disease.
[00:20:47] So, you know, I, I think that, we sort of go through the reasons why biopsies are helpful, but we also discuss the serologic guidelines if somebody does fit into that. And there are some kids who a [00:21:00] biopsy is not the right choice, you know, some. Have already put their child on a gluten-free diet, and, and if you do the biopsies on a gluten-free diet, you don’t get a good answer.
[00:21:09] Um, so if someone’s already on a gluten-free diet and feeling a lot better, it can, The idea of going back on [00:21:15] gluten for biopsies can be very difficult. Um, so that might be a, a patient that you would, you would not do the biopsies, and there’s some patients who have medical concerns that make the sedation and the procedure itself more dangerous.
[00:21:28: we break it down and, and, and in the end it comes down to shared decision making between the patient, their family, and us, you know, and deciding what the next best step is.
[00:21:39] So we can’t leave celiac testing without at least touching on genetics. Does a positive genetic test mean that they [00:21:45] have celiac disease or will get celiac disease?
[00:21:48] No, it’s a great question. So there are genetic tests for other diseases where if you have this gene, you will in your lifetime develop this disease. That is not what we have currently for celiac.
[00:21:58] So when you [00:22:00] look across the population, um, about 40% of people will have one of the HLA markers that we see with celiac disease, either D Q two or D Q eight. That’s a lot of people we know there’s a [00:22:15] lot of celiac disease out there, but it is certainly not 40% of the population.
[00:22:18] Our estimate is it’s about 1% of the population has celiac disease. Interestingly, if you take that group of people who have one of those HLA markers, only about 4% of them develop celiac [00:22:30] disease in their lifetime. So certainly having one of those markers makes your risk higher of developing celiac disease, but it is not a slam dunk diagnosis.
[00:22:39] And if you get a little more complicated, there are certain patterns of HLA typing that can, that can happen, [00:22:45] that give you even higher risk. So it, it, it is a helpful piece of information, but it does not seal the deal of the celiac diagnosis.
[00:22:54] So we know that a gluten-free diet eliminating all forms of wheat, Ry barley is the only treatment for celiac [00:23:00] disease. What is the best way for a patient family to learn how to adapt to this lifelong diet?
[00:23:07] It can be a complicated diet and we highly recommend that patients see a [00:23:15] specialized dietician who understands the gluten-free diet to really learn the nitty gritty details about where you need to be careful and where you don’t need to be careful. I think that is one of the most important steps that patients can, can do for themselves when they get the [00:23:30] diagnosis of celiac disease.
[00:23:31] so I think, I think you need, you need some education from a specialized dietician, and then you need to just plow forward and practice and, and Perfect, perfect. Your label reading.
[00:23:43] So let’s switch gears and talk about related [00:23:45] conditions. You touched on this a little bit in the beginning, but I wanna talk about it in more depth. We know there are a lot of other autoimmune diseases that are related to celiac. What are the most common.
[00:23:54] there’s so many different autoimmune diseases and I, you know, we see patients with celiac disease with many other [00:24:00] things like psoriasis or uh, inflammatory bowel disease, but I think the most common are diabetes and thyroiditis.
[00:24:06] So should someone who’s newly diagnosed with celiac disease be tested at the point of diagnosis for these coexisting conditions, or when is the right time to test,
[00:24:14] That’s a [00:24:15] great question. So certainly. When we make the diagnosis of celiac disease, if someone is having other symptoms that point towards another disorder, like an autoimmune thyroid condition or an autoimmune skin condition or diabetes, [00:24:30] certainly we would do testing and evaluation at that point in time.
[00:24:33] Um, and. It’s interesting. There are some of these autoimmune diseases that we can screen for with a blood test. Like it’s very easy to test someone’s thyroid function, uh, by a blood test. But some of the other, [00:24:45] um, some of the other autoimmune diseases is they’re not as easy to screen for and it’s really more of a clinical diagnosis.
[00:24:51] But we do absolutely recommend screening patients either with blood work or with close careful clinical monitoring by [00:25:00] asking questions and, and seeing how they’re. Um, Absolutely. And we do that from the moment they’re diagnosed. And importantly, we recommend continuing to do that through the years on a gluten-free diet.
[00:25:12] Is this something that you would test for at every annual follow up [00:25:15] visit?
[00:25:17] Yes, depending on the family history. Otherwise, you would do it certainly within the first year of diagnosis, and then maybe every other year, depending on your level of concern.
[00:25:29] Is there a [00:25:30] way to prevent developing a related condition or predicting if someone will get one?
[00:25:34] Not yet, but we’re really hopeful that we’ll have the science to be able to better predict that. And certainly if we’re able to prevent it, that would be amazing and I look forward to that [00:25:45] day. But right now, no. The best thing that we can do is to address the Celiac disease. Treat the celiac disease. Heal the intestine and try to promote health in every way possible to prevent other diseases.
[00:25:57] But it, but we don’t have a specific way [00:26:00] of, preventing autoimmune disease at this time.
[00:26:03] Well, thank you Dr. Weir so much for all of the wisdom you have shared today. This is really going to tee up the rest of the season of our podcast so nicely as we talk more about celiac disease and all of these different [00:26:15] conditions that are related to it. So now let’s find out where Peter and his family are today.
[00:26:21] Guest: It’s been almost seven years since Peter was diagnosed with celiac disease. Today he is a thriving fourth [00:26:30] grader, one of the tallest in his class. He’s an active member of the Celiac Kids Connection at Boston Children’s Hospital and loves attending gluten-free cooking classes. Gluten-free spaghetti with bona and tacos are his favorite foods. His [00:26:45] family has rallied together and adapted to gluten-free. vacations look a little different. They do lots of research in advance, but always find great food in the destinations they visit. In Peter’s words, I don’t mind being gluten free. It makes me [00:27:00] healthy and special.
[00:27:01] Host: Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible, A reminder to all physicians, nurses, social workers, and dieticians to [00:27:15] claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac and complete the short survey attached to this.
[00:27:26] If you like what you heard, be sure to write a review, like and [00:27:30] subscribe wherever you get your podcasts. For more information, check us out on social at at Boston Children’s Celiac, on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids’ Connection on Instagram. Join us next month when we discuss the relationship between celiac disease [00:27:45] and inflammatory bowel Disease with Dr.
[00:27:47] Ines Pinto Sanchez from McMaster University in Hamilton Health Sciences. Have a great month.
1/19 Episode 2: The Intersection of Celiac Disease and Inflammatory Bowel Disease
Learning objectives:
1.) Describe current research on the link between celiac disease and inflammatory bowel disease 2.) Explain appropriate testing procedures for a celiac patient with ongoing symptoms 3.) Identify treatment options for patients with a dual diagnosis of celiac and inflammatory bowel disease To claim credit, please register for an account on our course website and complete a podcast survey here.[00:00:00] Host: Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the Education Director of the Celiac Program at Boston [00:00:15] Children’s Hospital, and each month on the podcast, we will invite leading experts to dive into a condition related to Celiac. And look at how it impacts a patient family. The latest research and offers suggestions for health providers to manage these [00:00:30] complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA category one credits for physicians. 0.5 contact hours for nurses. 0.5 ACE CCE Continuing education credits for social workers and 0.5 CEUs for registered dieticians claim your credits for listening to today’s episode, please visit [00:01:00] dme.hospital.org/raising celiac. Let’s get started with this month’s Raising Celiac story.
[00:01:09] Guest: Peter was a pretty normal toddler. He giggled all the time, played joyfully with his family and [00:01:15] friends, and loved every food his mom put in front of him, especially avocados, broccoli, and snicker doodle cookies. His mom lovingly referred to him as her chubby little munch. Until just before his third birthday when he seemed to thin out all around but not get [00:01:30] any taller. His preschool class photo came in and he was a full head shorter than the other kids in the class. Despite being one of the oldest, something had to be up right.
[00:01:41] Host: Celiac disease is a chronic genetic autoimmune condition that can [00:01:45] affect any system of the body. The only treatment is a lifelong gluten-free diet. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing important nutrients from food and cause a variety of symptoms like [00:02:00] abdominal pain, nausea, diarrhea, vomiting, fatigue, weight loss, mouth ulcers, and growth issues to name a few.
[00:02:08] Guest: Peter’s parents took him to the pediatrician. One of the first tests they ran was for celiac disease. It was [00:02:15] positive. Peter’s parents were both surprised and not surprised at the same. They were aware of this condition because Peter’s grandmother also had celiac disease. Though her main symptoms were diarrhea and vomiting. She never had issues growing. How could [00:02:30] Peter have the same disease but not obviously react when eating the foods that made Grandma so physically ill?
[00:02:35] Host: Celiac disease can affect patients in very different. Some might have very obvious physical symptoms, while others may be more subtle or even none at all, [00:02:45] regardless of the symptoms, the reaction in the body is the same. When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with vii, tiny finger-like projections that [00:03:00] absorb nutrients from the food passing. in celiac disease, gluten damages the intestines and causes the villa to break down, leaving a smooth lining that can no longer absorb nutrient. It’s.
[00:03:11] Guest: As Peter’s parents dove into researching everything about [00:03:15] celiac disease, they quickly learned that the rest of the family needed to be tested and that symptoms could impact any system of the body. Peter’s dad had spent his entire life with crippling neuropathy in his hands and feet. He also tested positive for celiac [00:03:30] disease. Then a few months later, his aunt tested positive after seeing a dermatologist for a blistery rash on her elbows. Oddly enough, Peter’s cousin also tested positive for celiac disease but had no distinguishable symptoms and was only tested [00:03:45] because he also had type one diabetes. Were all of these differing symptoms really related to eating gluten and as Celiac really so common that several family members all have it.
[00:03:55] Host: Not to give it all away, but the answer is yes. All of these different [00:04:00] symptoms and many more can be related to gluten. As Peter’s family quickly learned, celiac disease is far from uncommon. An estimated 1% of people in North America are affected by this autoimmune disease. Typically more girls than boys [00:04:15] and many are undiagnosed, and Celiac is also closely related to many other chronic diseases including type one diabetes and thyroid disease. So this season on Raising Celiac, we’re going to explore why we’ll talk to [00:04:30] experts across the United States and around the world to discuss why celiac disease is so complicated and how better understanding it may be the key to learning more about other autoimmune conditions. So let’s start raising Celiac.
[00:04:43] Today we talk about the history [00:04:45] of celiac disease with Dr. Dosha Weir, the clinical director of the Celiac disease Program at Boston Children’s Hospital. Dr. Weir first became interested in celiac disease during her medical training and is now a board-certified pediatric gastroenterologist with [00:05:00] expertise in celiac disease in children. Dr. Weir’s recent research has focused on non-responsive celiac disease in children, and she is a champion for supporting food insecure families with celiac disease. Dr. Weir sits on the executive committee of the Harvard Medical School [00:05:15] Celiac Research Program and the Board of the Celiac Kids Connection.
[00:05:18] Welcome Dr. Weir to Raising Celiac.
[00:05:21] Thank you so much for having me. It’s really a pleasure to be here.
[00:05:25] So before we talk more about Peter’s family story, I wanna talk about the history of [00:05:30] celiac disease. When and how was it discovered?
[00:05:33] Celiac disease is not a new thing, even though many of us have only just started to hear about it more regularly. It actually was first described by a physician back in the Roman [00:05:45] Times, around a hundred to 200 a d and he described, um, You know, he described patients who had problems with digestion and absorption, and actually called it celiac affection at that point in time.
[00:05:58] Celiac is [00:06:00] actually from the Greek word belly, which makes reference to one of the classical symptoms that we sometimes see with celiac disease of, of a vi, a big, distended belly. So, it really does go way back. Um, and then it was mentioned in the medical [00:06:15] literature as far back as the 16 hundreds and through the 18 hundreds and the 19 early 19 hundreds European, British, and American physicians identified and discussed celiac disease.
[00:06:27] And trialed various dietary treatments without [00:06:30] the understanding that gluten was triggering celiac disease, which is really interesting to look back at how that piece was fit into the, to understand celiac disease. Um, in 1920s there was an American physician named Dr. [00:06:45] Haas, and he noticed, um, in, in Puerto Rico that in the city where people ate bread, there was more suffering of celiac. While the farmers who lived in the country and [00:07:00] mostly ate bananas, rarely suffered from celiac disease. And he made that observation and decided that the key to treating celiac disease was bananas. He did not pick up that the gluten, perhaps it was the absence of gluten. That was really, was really the key [00:07:15] there. Um, and he, he really developed a banana-based diet that did have some success in treating kids. Celiac disease back in the early 19 hundreds. Um, so it’s just kind of interesting because he really was prescribing the diet without realizing [00:07:30] exactly what he was doing.
[00:07:31] That’s so interesting.
[00:07:33] Yeah, I thought it was really interesting. And they call people who had celiac disease in that era and survived, uh, banana babies actually, It wasn’t until after World War II when the connection was made between [00:07:45] celiac disease and the trigger of gluten, of ingested gluten, and there was a Dutch pediatrician whose name was William Carl Dickey, who observed that during the war when there was no bread available, that Dutch children with celiac [00:08:00] disease got better and that they were not dying. And he really noticed that there was this big improvement in kids with celiac disease and then when the bread returned, they started getting sick again. And that really, that really helped him make that connection which was obviously a huge breakthrough in the [00:08:15] treatment of celiac disease
[00:08:16] and that advancement was in the 1950s when we started being able to do small bowel biopsies and that really paved the way. For us to be able to confirm celiac disease by the characteristic inflammation [00:08:30] and damage that we see when someone with celiac disease is consuming gluten. And then the last piece was, um, the advent of serologic tests. So ttg IGA is a blood test that we have that we really rely on a lot to [00:08:45] help us figure out who has celiac disease. And that was really only recognized as a marker of celiac disease, um, in 1997. So that was another really big step that helped us understand celiac disease and recognize celiac disease [00:09:00] much better than we had done previous.
[00:09:02] it’s been amazing to see over the last, you know, 20 years how much we’ve learned and how far our community has come.
[00:09:09] It really is amazing, isn’t it?
[00:09:11] Absolutely. So as we heard from Peter’s family, [00:09:15] celiac disease affects people in many ways if there are so many symptoms. How can doctors know when the right time is to screen for celiac? Should they always just be testing no matter what the ailment?
[00:09:25] It’s a really good question because you’re right. The range of how people show up with celiac [00:09:30] disease is so broad. There are so many different ways people can show us that they have celiac disease. Um, and, and what’s really tricky about it is some of those symptoms are really common symptoms of, of being human, you know, and they’re not always linked to [00:09:45] celiac disease. And so, um, It can be really tricky to figure out who to screen. There’s really two groups that we think about who need screening. One are people who have a variety of symptoms, you know, including gastrointestinal symptoms, growth issues, and, and many, [00:10:00] many other symptoms as we’ve sort of outlined in Peter’s case. I think we should have a really low threshold to sending blood work to look for celiac disease. So There’s another group though, that we also need to think about, and that’s kids. Kids that are if you have a first degree family member with celiac disease, [00:10:15] for example, or you have another disorder like an autoimmune disease such as thyroid disease or type one diabetes, your risk of having celiac disease is higher than the average population. And so we should be thinking as a medical community about [00:10:30] actively screening those patients as well.
[00:10:32] Can you tell our listeners what some of the more common symptoms of celiac disease are?
[00:10:38] some of the common symptoms that we see in celiac disease are gastrointestinal symptoms like abdominal [00:10:45] pain, nausea. Some people will have changes in stool and it doesn’t just have to be diarrhea. It can also be constipation. Um, another big way that we see children presenting with celiac disease is not growing well, and that might be that their linear growth, their [00:11:00] height is stunted, and that they have something that we call short. Or it might be that they are not gaining weight well or are actually losing weight. Those symptoms in kids are red flags, that there is something going on in the body. And it turns out that celiac [00:11:15] disease is, is a very major cause of those symptoms in kids. Um, but there’s other non GI symptoms that are relatively common. Iron deficiency anemia is another big one that can be a sign of celiac disease. Um, and uh, fatigue [00:11:30] is another one that I actually see quite a.
[00:11:33] So is it really possible to have no symptoms at all, but still test positive for Celia?
[00:11:39] It is. So we keep track of the diagnosis of celiac disease in our program [00:11:45] and we’ve gone, we’ve been doing that since, you know, 2001. And when we look at the numbers of kids that we’ve diagnosed, we see that a a little bit under 10% of patients, uh, don’t have identifiable symptoms before the diagnosis. Um, which is [00:12:00] really surprising to families when they find themselves, you know, thinking about this diagnosis and a kid that they really were not worried about prior to, prior to the blood test that was sent.
[00:12:09] But one of the things that I think is really interesting is that I, I. Over the [00:12:15] years have become a little more reluctant to calling that asymptomatic celiac disease because I’ve had so many experiences where kids, we’ve identified that they have celiac disease, they go on a gluten-free diet, they come back for follow up, and there is something that’s better that they hadn’t [00:12:30] identified beforehand is off. Often it’s, Oh, my kid has so much more energy. Or sometimes kids will verbal. , I, I did have abdominal pain and now it’s gone. I think kids are so resilient that I think sometimes they don’t realize that they have a symptom until it’s [00:12:45] not there. Or they don’t realize that a symptom might not be normal that everybody else feels until it’s not there. So I, I, I hesitate a little bit to use asymptomatic, um, the asymptomatic label on patients. I can tell you that there are absolutely [00:13:00] people who do not have symptoms and do not feel better on a gluten-free diet. And it, and it can be a hard thing for families and patients to wrap their heads around.
[00:13:07] So let’s say you have a patient who is seemingly asymptomatic or you know, doesn’t have any obvious noticeable symptoms to themselves, [00:13:15] um, and they go in the gluten-free diet and they’re not feeling better, why should they stick to that gluten-free diet?
[00:13:20] There are a lot of good reasons to treat celiac disease. Even if you don’t have symptoms. Obviously, if you have symptoms, that’s a really big motivating factor to everybody. Um, but if [00:13:30] you don’t have symptoms, you still have the inflammation and damage in your intestine and, and long term inflammation in your intestinal tract is not a healthy thing.
[00:13:38] It can predispose you to nutritional deficiencies, which can have health. Including bone density [00:13:45] problems and osteopenia or osteoporosis, which is like a, um, um, a lack of bone density in weak bones. Um, he can also lead to things like infertility and there are descriptions in adults with untreated celiac disease who have certain [00:14:00] malignancies of the small intestine, um, which, uh, are associated with untreated celiac disease.
[00:14:05] so the stakes are really high. The other piece that is particularly relevant to the, like children and the pediatric population is growth. You [00:14:15] know, kids may not grow to their full potential and when they hit their growth spurt, they may not grow, as tall as they should be, and they won’t realize it until it’s too late.
[00:14:24] So that’s another big reason.
[00:14:26] All very good reasons
[00:14:28] We think so[00:14:30]
[00:14:31] Ad Break: The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases. Through research, education, and awareness, while supporting multidisciplinary approaches to health,[00:14:45] we are thrilled to support the production of this educational.
[00:14:50] welcome back. So, Dr. Weir, we hear all the time that it can take years for a patient to be correctly diagnosed with celiac disease. Why does it take so long in some.[00:15:00]
[00:15:01] I think a lot of this. Is because of the variety of how patients show up with celiac disease. And sometimes the symptoms can be very subtle or the symptoms can be atypical. I think, um, a [00:15:15] lot of people in the medical field and outside of the medical field, Note about the classic presentation of celiac disease.
[00:15:22] The young child who has failure to thrive, a big swollen belly might be throwing up or having diarrhea. tend to get [00:15:30] diagnosed, uh, very quickly. Okay. But what is actually more common is to be, to be less dramatic and to be older. So in our, in our program, the average age of diagnosis is about 10.
[00:15:42] And these patients may have some [00:15:45] abdominal pain, they may have some fatigue. And, and like I referenced before, a lot of these symptoms are very frequent symptoms of, of childhood and of adolescence, and can be explained away for other reasons, either by the family and not coming to present. Care, you know, [00:16:00] not asking for help and sorting out the, the, the symptoms, but also the physicians may, may not think to send, um, the celiac testing, the celiac serology testing.
[00:16:11] So I think, I think that the reason why it takes so long, or historically [00:16:15] why the reason why it has taken so long is because it, it, it, it can be, it can be complicated and tricky and I don’t think it’s always been on everybody. Um, radar to think about it in those more subtle, in those most more subtle cases.
[00:16:28] I, I like to think that [00:16:30] we’ve gotten better through the years, um, and identifying it. Um, but I think there are still people who have symptoms for longer than they should before we figure it out.
[00:16:38] so just so we’re setting the record straight, can you tell our listeners what are the correct tests for celiac disease [00:16:45] and what would you see on those tests come back where the pediatrician should refer to a gastroenterologist?
[00:16:51] Absolutely. Our best blood test is something called tissue transaminase. Which is a mouthful iga, we call it ttg IGA for [00:17:00] short, sort of a short way to say it. Um, so that test is a really helpful test, um, when you’re worried about someone having celiac disease, and we recommend sending it with a total iga.
[00:17:11] So immunoglobulin A is one of the components of our immune [00:17:15] system, and it’s a building block of the antibodies. And so you need to have enough IGA in your body in order to make the TTG IGA antibody that we see with celiac disease. And what’s interesting is that patients with celiac [00:17:30] disease have a. Risk of having something called an IGA deficiency where your body doesn’t make enough of that immunoglobulin.
[00:17:37] And so you need to know if your patient, if that person has enough IGA to have a positive test. So it’s really [00:17:45] important to send the ttg iga and the total iga now. If someone doesn’t have enough iga, um, there are other tests that we can send. Um, and the best test is something called the de contaminated GL and peptide, I g G, [00:18:00] and that’s the, that’s a really good test to send in someone who doesn’t have enough iga, to mount a positive response.
[00:18:07] So if they have a negative TTG level, but uh, only a positive iga, would they still be referred to gastroenter? [00:18:15] Um,
[00:18:16] They probably would be. Yes. Um, there are, like you’re referencing, there are other tasks that can be sent, um, looking for celiac disease and some of them are better than others. You know, I, I think the bottom line is that, um, some of the [00:18:30] tasks that are out. Are not as good. Um, but if they’re positive, they’re really hard to ignore.
[00:18:35] And we know that celiac disease doesn’t always follow the rules. And sometimes we have people with celiac disease who don’t have the typical blood test positive. You know? So if there’s [00:18:45] something that doesn’t seem right, whether that’s a lab, whether that’s an IgG based lab or something about your patient, even if the blood work comes back for celiac disease and it’s normal, if you’re worried about that.
[00:18:56] You know, most gastroenterologists will be happy to see them [00:19:00] and to help sort it out because we know that sometimes celiac disease can, can be difficult to diagnose.
[00:19:06] So the biopsy is something that happens once they get to the gastroenterologist, but it’s not something that all parents are comfortable with. Especially now that there’s more [00:19:15] knowledge about the European guidelines that aren’t always requiring the biopsy for diagnosis. Can you talk about how gastroenterologists evaluate if a biopsy is the right choice for a patient?
[00:19:24] Of course, this is another conversation. We have a lot with our, with our families and our patients. [00:19:30] Um, we’re lucky that we have the European guidelines that outline a subset of patients with celiac disease who might not need the biopsies because that has given us a lot of flexibility and how we make the D.[00:19:45]
[00:19:45] But the gold standard or what we have always thought of as sort of the gold standard or the best way to diagnose celiac diseases with biopsies. Um, and, and there’s a good reason for that. It is, it is a very clear way of knowing if somebody has celiac disease, because [00:20:00] we know the blood work isn’t right a hundred percent.
[00:20:01] So I think there’s a lot of value to getting small bowel biopsies to really know where you’re starting. I, there is data that shows kids who have biopsy confirmed disease do better long term on the [00:20:15] diet. Um, I think that that is true in some cases. I have other patients who have not been biopsy confirmed to do beautifully on the diet.
[00:20:22] Um, so that piece isn’t, isn’t a, a big convincing factor to me, but it is something that I mention to families. Um, [00:20:30] the other piece is that by having biopsy confirmed disease, I think it opens doors for you in the future in terms of being.
[00:20:37] Oh.
[00:20:38] Facilitating involvement in future clinical trial trials or having access to new medications that we [00:20:45] hope, or treatments that will, will come out to treat celiac disease.
[00:20:47] So, you know, I, I think that, we sort of go through the reasons why biopsies are helpful, but we also discuss the serologic guidelines if somebody does fit into that. And there are some kids who a [00:21:00] biopsy is not the right choice, you know, some. Have already put their child on a gluten-free diet, and, and if you do the biopsies on a gluten-free diet, you don’t get a good answer.
[00:21:09] Um, so if someone’s already on a gluten-free diet and feeling a lot better, it can, The idea of going back on [00:21:15] gluten for biopsies can be very difficult. Um, so that might be a, a patient that you would, you would not do the biopsies, and there’s some patients who have medical concerns that make the sedation and the procedure itself more dangerous.
[00:21:28: we break it down and, and, and in the end it comes down to shared decision making between the patient, their family, and us, you know, and deciding what the next best step is.
[00:21:39] So we can’t leave celiac testing without at least touching on genetics. Does a positive genetic test mean that they [00:21:45] have celiac disease or will get celiac disease?
[00:21:48] No, it’s a great question. So there are genetic tests for other diseases where if you have this gene, you will in your lifetime develop this disease. That is not what we have currently for celiac.
[00:21:58] So when you [00:22:00] look across the population, um, about 40% of people will have one of the HLA markers that we see with celiac disease, either D Q two or D Q eight. That’s a lot of people we know there’s a [00:22:15] lot of celiac disease out there, but it is certainly not 40% of the population.
[00:22:18] Our estimate is it’s about 1% of the population has celiac disease. Interestingly, if you take that group of people who have one of those HLA markers, only about 4% of them develop celiac [00:22:30] disease in their lifetime. So certainly having one of those markers makes your risk higher of developing celiac disease, but it is not a slam dunk diagnosis.
[00:22:39] And if you get a little more complicated, there are certain patterns of HLA typing that can, that can happen, [00:22:45] that give you even higher risk. So it, it, it is a helpful piece of information, but it does not seal the deal of the celiac diagnosis.
[00:22:54] So we know that a gluten-free diet eliminating all forms of wheat, Ry barley is the only treatment for celiac [00:23:00] disease. What is the best way for a patient family to learn how to adapt to this lifelong diet?
[00:23:07] It can be a complicated diet and we highly recommend that patients see a [00:23:15] specialized dietician who understands the gluten-free diet to really learn the nitty gritty details about where you need to be careful and where you don’t need to be careful. I think that is one of the most important steps that patients can, can do for themselves when they get the [00:23:30] diagnosis of celiac disease.
[00:23:31] so I think, I think you need, you need some education from a specialized dietician, and then you need to just plow forward and practice and, and Perfect, perfect. Your label reading.
[00:23:43] So let’s switch gears and talk about related [00:23:45] conditions. You touched on this a little bit in the beginning, but I wanna talk about it in more depth. We know there are a lot of other autoimmune diseases that are related to celiac. What are the most common.
[00:23:54] there’s so many different autoimmune diseases and I, you know, we see patients with celiac disease with many other [00:24:00] things like psoriasis or uh, inflammatory bowel disease, but I think the most common are diabetes and thyroiditis.
[00:24:06] So should someone who’s newly diagnosed with celiac disease be tested at the point of diagnosis for these coexisting conditions, or when is the right time to test,
[00:24:14] That’s a [00:24:15] great question. So certainly. When we make the diagnosis of celiac disease, if someone is having other symptoms that point towards another disorder, like an autoimmune thyroid condition or an autoimmune skin condition or diabetes, [00:24:30] certainly we would do testing and evaluation at that point in time.
[00:24:33] Um, and. It’s interesting. There are some of these autoimmune diseases that we can screen for with a blood test. Like it’s very easy to test someone’s thyroid function, uh, by a blood test. But some of the other, [00:24:45] um, some of the other autoimmune diseases is they’re not as easy to screen for and it’s really more of a clinical diagnosis.
[00:24:51] But we do absolutely recommend screening patients either with blood work or with close careful clinical monitoring by [00:25:00] asking questions and, and seeing how they’re. Um, Absolutely. And we do that from the moment they’re diagnosed. And importantly, we recommend continuing to do that through the years on a gluten-free diet.
[00:25:12] Is this something that you would test for at every annual follow up [00:25:15] visit?
[00:25:17] Yes, depending on the family history. Otherwise, you would do it certainly within the first year of diagnosis, and then maybe every other year, depending on your level of concern.
[00:25:29] Is there a [00:25:30] way to prevent developing a related condition or predicting if someone will get one?
[00:25:34] Not yet, but we’re really hopeful that we’ll have the science to be able to better predict that. And certainly if we’re able to prevent it, that would be amazing and I look forward to that [00:25:45] day. But right now, no. The best thing that we can do is to address the Celiac disease. Treat the celiac disease. Heal the intestine and try to promote health in every way possible to prevent other diseases.
[00:25:57] But it, but we don’t have a specific way [00:26:00] of, preventing autoimmune disease at this time.
[00:26:03] Well, thank you Dr. Weir so much for all of the wisdom you have shared today. This is really going to tee up the rest of the season of our podcast so nicely as we talk more about celiac disease and all of these different [00:26:15] conditions that are related to it. So now let’s find out where Peter and his family are today.
[00:26:21] Guest: It’s been almost seven years since Peter was diagnosed with celiac disease. Today he is a thriving fourth [00:26:30] grader, one of the tallest in his class. He’s an active member of the Celiac Kids Connection at Boston Children’s Hospital and loves attending gluten-free cooking classes. Gluten-free spaghetti with bona and tacos are his favorite foods. His [00:26:45] family has rallied together and adapted to gluten-free. vacations look a little different. They do lots of research in advance, but always find great food in the destinations they visit. In Peter’s words, I don’t mind being gluten free. It makes me [00:27:00] healthy and special.
[00:27:01] Host: Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible, A reminder to all physicians, nurses, social workers, and dieticians to [00:27:15] claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac and complete the short survey attached to this.
[00:27:26] If you like what you heard, be sure to write a review, like and [00:27:30] subscribe wherever you get your podcasts. For more information, check us out on social at at Boston Children’s Celiac, on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids’ Connection on Instagram. Join us next month when we discuss the relationship between celiac disease [00:27:45] and inflammatory bowel Disease with Dr.
[00:27:47] Ines Pinto Sanchez from McMaster University in Hamilton Health Sciences. Have a great month.
2/16 Episode 3: What Came First Celiac, or Type 1 Diabetes?
Learning objectives:
1.) Describe the current protocols for screening for celiac disease in patients with type 1 diabetes
2.) Identify common challenges of the gluten-free diet for patients with a dual diagnosis of celiac disease and type 1 diabetes
3.) Explain common school lunch foods that are suitable for a patient with celiac disease and type 1 diabetes
To claim credit, please register for an account on our course website and complete a podcast survey here
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the Celiac program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac Podcast is accredited by the Boston Children’s Hospital Continuing Education Department for physicians, nurses, social workers, and dieticians. To claim your credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Janis Arnold:
Sophia was a happy and vibrant four-year-old who loved hosting tea parties with her stuffed animals, especially Bella, her rainbow unicorn. She made all her family members join the parties, even her two older brothers who rolled their eyes every time she asked. She always asked her mom to fill the tea cups with pink lemonade to match the pink of the circus animal sprinkled cookies she served on her white tea plates. As the tea parties went on, Sophia’s mom started to notice that her dainty sips of tea shifted to gulping down the liquid and quickly refilling the cup. Her brothers joked she was addicted to the sugary lemonade, but was she?
Vanessa Weisbrod:
Type one diabetes is an autoimmune disease. Doctors don’t know the exact cause, but believe it is triggered by a combination of genetic and environmental factors. In a patient with type one diabetes, the body’s immune system attacks and destroys the cells in the pancreas that make insulin. As a result, the body is unable to produce enough insulin, a hormone that regulates the amount of sugar in the blood. Type one diabetes can cause blood glucose to be too high, which can cause long-term damage to the kidneys, eyes and nerves.
Janis Arnold:
Drinking too much lemonade during tea parties wasn’t the only thing that seemed off. Sophia’s preschool teacher reached out to her mom because she started asking for water very frequently. She was drinking her entire water bottle by 9:00 AM and refilling it multiple times during the day. She was using the bathroom several times an hour and falling asleep at the table during lunch. Mom made an appointment with the pediatrician where they learned Sophia had lost nearly three pounds since her last well child visit. Sophia’s doctor ordered lab work, including a blood sugar test, hemoglobin A1c, an autoantibodies panel, as well as a urine test. All came back indicating type one diabetes.
Vanessa Weisbrod:
There is a well-established link between type one diabetes and celiac disease that was first discovered over 60 years ago. The estimated prevalence of celiac in patients with type one diabetes is approximately 8% compared to about 1% in the general population. Due to the significantly higher prevalence of celiac disease in diabetes patients, many physicians recommend getting screened for celiac after a diagnosis of type one diabetes and vice versa.
Janis Arnold:
And this is exactly what Sophia’s endocrinologist did at her first appointment even though Sophia reported no obvious symptoms of celiac disease. The test was positive. Sophia’s parents felt helpless and overwhelmed. In a matter of a few weeks, they went from having few worries in the world to having a daughter with two autoimmune diseases, both that required major lifestyle changes. How would they manage a strict gluten-free diet on top of constant blood sugar monitoring and giving insulin? It all seemed like too much to handle.
Vanessa Weisbrod:
The goal of type one diabetes treatment is to control glucose levels and prevent the patient’s blood sugar from being too high. The ideal diabetes management regimen includes insulin therapy, glucose and ketone monitoring, regular active exercise and healthy eating. Understanding how food impacts blood glucose is critically important for the management of type one diabetes. Food causes blood glucose to go up. Insulin causes blood glucose to go down. Too much food with not enough insulin can cause blood glucose to go too high. Not enough food with too much insulin can cause blood glucose to go too low. And the amount and type of food affects how much and how quickly the glucose levels go up.
Janis Arnold:
Sophia’s family attended a getting started class at their local hospital to learn about balancing food and insulin. They studied food labels and started having Sophia try out new foods that were richer in fiber and whole grain. But as they started perusing the gluten-free isles of the grocery store, they quickly noticed a problem with many starchy gluten-free products like bread, crackers, cereal, pasta. They were all higher in carbohydrate content than their gluten containing counterparts and contained highly refined starches and sugars. A quick internet search told them these refined ingredients were used in gluten-free foods to mimic the mouth feel and texture of gluten. Yikes. Now what?
Vanessa Weisbrod:
Carbohydrates are an important source of energy. They are also the main nutrient the body turns into blood sugar. It’s important to eat good for you carbohydrates that are high in fiber like whole grains, fruits and vegetables. These carbohydrates slow digestion and help make you feel full for longer. High fiber foods also reduce spikes in blood glucose after eating. Many gluten-free foods at grocery stores are considered processed carbohydrates. They’re low in fiber and if not closely monitored, can raise blood sugars too high. So how does a family with a child with a dual diagnosis of celiac disease and type one diabetes manage the dietary considerations of both conditions? Does going on a strict gluten-free diet help with managing diabetes? How do these patients manage their nutritional needs when eating outside of the home, like at school or in a restaurant? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about celiac disease and type one diabetes with two leading experts. First, we talk to Dr. Katharine Garvey, the Clinical Chief of Diabetes and the Director of the Diabetes Program at Boston Children’s Hospital. Then we’ll be joined by Sharon Weston, a Senior Clinical Nutrition Specialist at Boston Children’s Hospital who runs the nutrition education classes for patients with celiac disease and type one diabetes. Welcome to Raising Celiac.
Dr. Garvey:
Thank you so much. I’m so happy to be here.
Vanessa Weisbrod:
So Dr. Garvey, we know that celiac disease and type one diabetes share several common risk factors including genetics, environment and immune dysregulation. Can you tell our listeners more about these commonalities and why the conditions are so closely related?
Dr. Garvey:
Yes, of course. So I think the major predominant driving factor is absolutely genetic commonalities. The fact of the matter is that there is a shared genetic susceptibility with certain alleles that we call HLA haplotype. Specifically, there’s an HLA, I think it’s DQ2 and DQ8 that are found in celiac disease and in most individuals with type one diabetes. And in fact, it’s common enough when you have type one diabetes to have those alleles that we don’t even recommend necessarily screening the genetics to determine that because you’re going to find it. And approximately 5% to 10% of people with type one diabetes have positive antibodies for celiac. And I think it’s around 5% or so, maybe a little higher of people who have biopsy-proven celiac disease. And so it’s a pretty significant chunk and significant enough that we do execute routine screening for people with type one diabetes to check if they have celiac.
Vanessa Weisbrod:
Is there an understanding of which disease comes first or does one cause the other?
Dr. Garvey:
Yeah, that’s a really good question and it’s a little bit confounded by the fact that we routinely screen people with type one diabetes for celiac. And as we might get to later, most people with type one diabetes who are diagnosed with celiac are not coming in leading with celiac symptoms and so would’ve had no reason to be screened prior. And so maybe it’s not surprising given that the vast majority in research as we currently understand it have diabetes diagnosed first. I think in most studies, somewhere on the order of 80% to 90%, but I have patients who were diagnosed with celiac first. We definitely see it, just not as commonly.
Vanessa Weisbrod:
So are all kids diagnosed with type one diabetes automatically screened for celiac disease? Is this a standard protocol?
Dr. Garvey:
Yeah, that’s a great question too. So we follow the American Diabetes Association screening recommendations and the current guidelines are to screen soon after the diagnosis of type one diabetes and that’s tough. If we just think about that. We don’t screen exactly at the moment of diagnosis at our center, although some centers do. We screen for that first time about six to eight weeks out from diagnosis. But still, they’re adjusting to the new world of having type one diabetes and everything that comes with that and everything that carries. And then we’re going to add celiac disease to that? It’s really important to consider what the screening may bring. However, the recommendations are to do it soon after the diagnosis and then if it’s negative, two years later. And if it’s a negative then, five years later, so diagnosis two years and five years. And then after that, if it’s negative at that five year mark, I think the recommendation is if people have any signs or symptoms or we may change the plan if they have a first through degree relative who also has celiac.
Vanessa Weisbrod:
So the biopsy to confirm a celiac diagnosis is still the gold standard in North America. Do kids with type one diabetes also need the biopsy to confirm a celiac diagnosis?
Dr. Garvey:
Yeah, so people with type one diabetes who screen positive are sent to gastroenterology who would help them explore whether or not biopsy is right for them. And I know there are the European guidelines where if your tTG is 10 times above the upper limit or whatever it is, they may not need a biopsy. And as far as I know, the recommendation would be the same in people with type one, where biopsy is the gold standard, but if it’s so obvious based on their antibody results and other criteria that they may be offered to proceed without it. Many people with type one diabetes don’t have classical symptoms of celiac. And so just given the huge significance and challenge of implementing a gluten-free diet, I think it does make sense to go after a biopsy just to make sure it’s truly necessary. As with the European guidelines, I think many people would potentially want to forego it if their results are that high for screening.
Vanessa Weisbrod:
Absolutely. So you mentioned that kids with both conditions might not have the classic symptoms like diarrhea, vomiting, weight loss, and growth issues. What are the symptoms that you see in the kids with type one diabetes, if any?
Dr. Garvey:
Yeah, so many children with type one diabetes and celiac do not have the classical symptoms that you mentioned. Some do, but the most common thing that I see clinically is more of an after the fact. They don’t have any obvious symptoms, but after the fact will notice that some things have improved. And in fact, one of those is glucose variability. So just to take a step back and remind listeners that in type one diabetes what we’re dealing with is essentially an absolute insulin deficiency, and it’s normal to some extent to have glycemic variability or glucose variability because we’re giving back insulin with a very imperfect method by putting it under the skin and injections. But much of the way we do that is by matching carbohydrate intake and trying to quantify a carbohydrate intake and insulin and saying, okay, if you are eating something, let’s say it’s an apple, actually let’s say bread because we’re talking about celiac disease, so if we say two slices of bread has 30 grams of carbohydrate and your prescribed carbohydrate ratio is one unit for 15 grams, then you’ll take two units of insulin for that bread.
Now, if you have unpredictable erratic absorption of your nutrients because you have undiagnosed celiac disease, then you might not digest that bread the way that you did yesterday or the way you will tomorrow. It all depends on what part of the small bowel it’s hitting, and it’s quite possible that we would give the insulin and then the food would not be appropriately digested and that would result in a low glucose. Maybe we would change the carb ratio to accommodate for that variability, but then the next time you try it, your glucose will be high after. And so we see a lot of unpredictable glucose measurements, recurrent lows, overall poor control with the diabetes management. And often when we find out that they have celiac disease and appropriately treat that, we find that it’s much easier to control the diabetes.
Vanessa Weisbrod:
So that’s a good outcome, but then toss in the changes of gluten-free ingredients and it might go the other way. So how does the gluten-free diet really impact the treatment for a child with type one diabetes?
Dr. Garvey:
Exactly. So on the one hand, you have an improvement from a healed gut and improved intestinal absorption of nutrients. But on the other hand, you have gluten-free carbohydrates, which can be extremely challenging. And I know that you’ll be talking with Sharon Weston, who is an absolute expert, and I defer all things to Sharon on this, but many of the carbohydrates used in gluten-free diet are very high glycemic index, so rapidly digested things that are used instead of gluten to try to provide the texture and the experience of eating things like bread. So these might have ingredients such as tapioca starch or rice flour or things that are going to hit hard and create a potentially rapid increase in glucose.
And that’s really challenging to manage with insulin. Also, it can be really challenging to manage if you mix it with fat. So if you mix a gluten-free carbohydrate such as pizza crust with cheese, the cheese is going to delay the absorption maybe for a long time and then it will all hit hours later. How do you cover that with insulin if you already gave the insulin when you ate it? So it’s very complicated and it’s more predictable once they’re diagnosed. But covering gluten-free carbohydrates with insulin is much harder than standard.
Vanessa Weisbrod:
All the more need for a really good dietician when you’re managing both conditions.
Dr. Garvey:
Exactly. Critical part of the team.
Vanessa Weisbrod:
So a recent study assessed quality of life in patients diagnosed with both type one diabetes and celiac disease and found lower scores than in matched patients with diabetes alone, especially in respect to social functioning and general health perception. As you heard from Sophia’s family, it was a challenging emotional adjustment for them. How do you help families cope with these major life changes?
Dr. Garvey:
Yeah, what an important point. I think that data are somewhat contradictory in this area. Studies like the one you cited have shown results in adults who have decreased quality of life with a dual diagnosis. In children, there are some other studies showing that there is a minimal impact of the double diagnosis, although parents felt that their children function lower socially. I’m not sure the data in this area really capture how incredibly challenging the dual diagnosis is. I personally think the studies are small, there aren’t enough pediatric studies, and we need more data to really help us understand and bring a voice to the immense challenge. You’re taking an incredibly burdensome condition with type one diabetes where you have to calculate and give insulin three, four, five, up to 10 times a day on top of intensive glucose monitoring adjustments for exercise and different dietary content. And then you add to that the restrictions and the challenges of gluten-free.
And to me, it’s a no-brainer that this is tremendously impactful on patient and family experience. And I think many children who have a dual diagnosis would say that the celiac is the harder of the two, which is so important and interesting, and it’s something I think we need to understand better, just the social impact of celiac and how incredibly hard that is. So in terms of how I help them cope, I think first of all, just by bringing voice to this experience and when you’re in a diabetes visit, it’s very easy to focus only on diabetes and to really get into the weeds of the numbers and the ratios and the insulin doses and the rates and what they’re doing and how we can improve the glucose trends. And sometimes it’s very matter of fact about celiac. Oh yeah, these gluten-free carbs are harder to cover.
But just to take a pause and say, “What you’re dealing with, the challenges of this dual diagnosis, this is really hard. And the fact that you are doing it, that you are doing the gluten-free diet is huge and you deserve a lot of credit for that. And it’s not just an additional line on your problem list. It is a really big accomplishment to be doing it.” So I try to bring voice to that. I try to send people back to nutrition and also encourage them to take advantage of mental health resources and community resources for these conditions. The other point I wanted to make is just that there are data showing that as challenging as quality of life is in a dual diagnosis, it’s even lower in people who have a dual diagnosis but don’t treat the celiac. And I think that’s a really important situation that I do see in my clinical practice.
And I don’t think it’s as noted in the celiac program because they don’t come. They’re not coming to the celiac program because they’re not treating their celiac disease. And I do have families who say, “You know what? We can’t deal with the gluten-free diet on top of diabetes management.” And I think there are data that tell us this is concerning for quality of life, it’s concerning for bone health, it’s concerning for diabetes control. There are a lot of reasons to treat celiac disease. And I just try to encourage those people to come back and keep having open conversations with gastroenterology and really make sure that their eyes are wide open in terms of knowing what they’re doing by not treating the celiac.
Vanessa Weisbrod:
That’s a really good point. And we’ve heard so many of the same things from families coming into the Celiac Kids Connection, and we now have a couple of parents who serve as the diabetes liaisons to really make sure that those families have an extra layer of support with families who are going through the experience of a dual diagnosis too. And I agree, it’s really challenging.
Dr. Garvey:
Oh, that’s so wonderful. Yeah, I think it’s really wonderful to have peer mentors and family mentors because I think the dual diagnosis is so overwhelming. And if you think about things like celiac camp or gluten-free conventions where you go and stop at all the tables that have gluten-free things and a lot of them are desserts or gluten-free bakeries, which are all so incredible for people living with celiac, those things are an absolute nightmare for insulin management. And it’s just important to own that and try to help people come up with strategies. Not that their kids can’t have that stuff, but how do we plan for it and how do we address it? Because it is really difficult, a whole other can of worms.
Vanessa Weisbrod:
And that’s how the whole diabetes liaison came to be was families coming to the holiday party for the Celiac Kids Connection and saying, “Oh my goodness, there’s frosting and cookies and cupcakes everywhere, and this is really hard to add into the day.” And so I think we’re a lot more conscious of that now and making sure that we’re thinking about those things in advance and having food items that work for everybody, and also giving parents the nutritional information ahead of time so that they can prepare for those types of events.
Dr. Garvey:
I think that’s a great idea. And then are there any ways, and I’d be really curious to hear what Sharon says about this, that there are some lower glycemic options that are still really satisfying to the patient and the child living with this, and that’s not easy to find in celiac, but it is out there.
Vanessa Weisbrod:
Well, thank you so much Dr. Garvey, for all of this wonderful information. We’re going to take a quick break and when we come back we’ll have our Boston Children’s Hospital dietician, Sharon Weston here to talk to us about nutritional considerations for patients with a dual diagnosis.
Dr. Garvey:
Thank you so much.
Speaker 4:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Welcome back, everyone. I’m now excited to welcome Sharon Weston, our dietician to the podcast. Welcome, Sharon.
Sharon Weston:
Thank you.
Vanessa Weisbrod:
So many of our listeners are very familiar with the gluten-free diet, but just in case, can you tell them what it means to be gluten-free?
Sharon Weston:
Sure. Well, first off, we know that adhering to a gluten-free diet is the only currently known treatment for celiac disease. And a gluten-free diet really means that we’re avoiding all sources of gluten, which show up in wheat, barley, rye, and oats and oats, especially, we have to focus on because we want to make sure that we’re just choosing oats that are gluten-free. Following a gluten-free diet means carefully reading food labels for all ingredients and also avoiding cross-contamination from foods that contain gluten.
Vanessa Weisbrod:
So now we add in a diagnosis of type one diabetes. Tell our listeners how the added diagnosis changes things nutritionally.
Sharon Weston:
Yeah, so when we add in the diagnosis of type one diabetes, now we have to not only think about choosing foods that are gluten-free, but we also really need to pay attention to how the foods eaten impact blood glucose levels. So looking at the macronutrients, which are our carbohydrates and protein and fat, and understanding how different types of carbohydrates impact blood glucose levels plays an important role nutritionally.
Vanessa Weisbrod:
Sophia’s family felt quite overwhelmed when they went to the grocery store for the first time to look at gluten-free food. How do you counsel patients newly diagnosed with both type one diabetes and celiac disease on approaching food choices, especially the carb-heavy products?
Sharon Weston:
Yeah, so first off, I try to encourage families to take advantage of all the naturally gluten-free foods that are out there, so focusing on fruits and vegetables, meat, poultry, fish, milk, yogurt, cheese, nuts and seeds and nut butters, and those gluten-free whole grains. And these are not only wholesome food choices, but they also tend to be lower in carbohydrates, especially high glycemic carbohydrates, and that can help moderate blood glucose levels or blood glucose spikes. Choosing less highly processed carbohydrates, even if they are gluten-free, will help to decrease the intake of those fast acting carbohydrates, increase fiber intake, and also increase the quality nutrition wise.
Vanessa Weisbrod:
For sure. I mean, it can be a lot to think about for families. So as you’re working with these families, what are the key elements that you tell them they always have to think about when they’re cooking meals for their child with the dual diagnosis?
Sharon Weston:
Yeah, so I just really try to keep it simple. I like to focus on the basics. The main messages are really to encourage balanced meals, choose paired snacks, and that means really snacks that are a balance of carbohydrates and protein or fat and minimize juice and sugary drinks, gluten-free balanced plate model, which promotes half the plate being fruits and vegetables balanced with a quarter of the plate as protein and a quarter of the plate as gluten-free carbohydrates. It’s just a simple model to think about. And healthy fats can also round out that balanced plate model, gluten-free paired snacks, balance, again, carbohydrates with some protein or fat, like I said, are very helpful to satisfy appetite in between meals, acting like a bridge between two meals. It provides a balanced source of fuel and that can help moderate blood glucose rise and falls and act as a more sustaining source of food fuel.
And then also encouraging water or plain milk or plain milk alternatives that are gluten-free can also help maintain hydration and also provide key nutrients without excess sugar. Another key element to helping families follow these main messages is to just help with planning and planning ahead for meals and snacks, and using an organized grocery shopping list that goes along with a game plan for meals can lead to success and minimize the need to fall back on takeout food or fast food and learning to prepare home cooked gluten-free meals and they don’t have to be fancy. Also, it just helps with minimizing the risk for cross-contamination. And also, we know that improves nutritional quality just in terms of eating more fruits and vegetables and less sodium and just less junk.
Vanessa Weisbrod:
So getting away from the junky snacks that we think of that little kids love, what are some snacks that you recommend for kids with celiac and diabetes? Just some practical everyday snacks.
Sharon Weston:
I think that some practical snacks are first, step one, choose a fruit or a vegetable. And then step two, really balance it with something that’s a good protein source or a protein source that has a little fat in it. An apple and a piece of cheese is a great paired snack or sliced carrots and cucumbers and hummus is a great snack. Just falling back on those fruits and vegetables as part of a snack is a great way and then adding in that protein will make that snack more longer-lasting.
Vanessa Weisbrod:
What about nut butters? Are those good things to add in?
Sharon Weston:
Sure. Nut butters are a great thing, and nut butter by itself is a great snack. If you just need something on the go and you have a jar of peanut butter in the car and a plastic spoon and just eat a spoonful of peanut butter, that’s a great long-lasting fuel that is a balance of carbohydrates that are gluten-free, protein and fat.
Vanessa Weisbrod:
What about baking for gluten-free? We know a lot of these gluten-free baking mixes are really heavy in white rice flour, corn starch. For these dual diagnoses, are there better flowers to use for baking?
Sharon Weston:
I think that when you look at the different ingredients for those boxed baked recipe ingredients, you’re going to look at the types of gluten-free flowers that are in there. And so almond flour is a great more sustainable fuel because it’s got that protein and that fat in it, as compared to things that are just fast-acting carbohydrates with no protein or fat. So when you look on the food label and you just look at the protein and fat content, not only the carbs, you can look at those choices that are a little more balanced.
Vanessa Weisbrod:
Great. So one of the things I’ve always been so impressed with you about is how you’ve worked with so many school food service providers to help them serve safe gluten-free meals to students with a dual diagnosis. Can you tell us about some of the challenges you’ve seen with school meal programs for these kids and how you’ve helped them overcome these?
Sharon Weston:
Yeah, that is a big challenge. And I think just educating the school’s food service team about the basics of glycemic index and the importance of balanced meals and paired snacks can help. And one challenge I’ve seen frequently really relates to just trying to stick to that balanced plate concept, especially for those meals that are the backup meal options for school, so the things that are served on like school bus trips when they’re going on a field day. So offering a gluten-free bagel and a higher sugar, gluten-free yogurt with applesauce and fruit chew gummies is something that’s gluten-free, but that carb amount and quality of those carbohydrates is not going to be ideal in preventing just a huge spike in blood sugar.
So some simple solutions to reduce high glycemic, gluten-free carbohydrates and balance them with protein and healthy fats includes just using gluten-free whole grain breads with maybe SunButter or cheese, or offering a hard-boiled egg, different types of deli meats, offering plain milk, lower sugar, Greek yogurts for simple protein sources, adding in fresh fruit instead of processed fruit, and even including some healthy fats like olives would be an easy way to just change that macronutrient profile of that easy meal.
And then breakfast is another challenge at school that I frequently see because higher sugar cereals are often used, and even things like gluten-free muffins that are high glycemic and low in fiber, adding in juice, adding in chocolate milk, those are all things that are used frequently. And again, educating the food service team to come up with easy guidelines to follow. So for example, offering a gluten-free cereal with six or less grams of sugar per serving and balancing that with plain milk and offering fresh fruit would help.
Vanessa Weisbrod:
So you heard Sophia’s family attended a nutrition class, which focused on carbohydrate counseling at their local hospital, but as you heard, many of the lessons they learned became more difficult to follow when they started the gluten-free diet. Can you tell our listeners about the class you’ve started at Boston Children’s Hospital for dual diagnosis patients and touch on how other dieticians might get a similar course up and running at their institution?
Sharon Weston:
Sure. So the class that we offer at Boston Children’s provides a comprehensive overview of learning the gluten-free diet, but in the context of type one diabetes. And so before instructing the details of the gluten-free diet, first I review the basics about glycemic index and we go over different ingredients, different grains, gums, et cetera, that show up in different gluten-free food labels and talk about how eating a gluten-free version of a food that they in the past had eaten, that gluten containing version, may now result in different unexpected changes in blood glucose levels. And so we talk about ideas for balanced meals. We talk, again, about paired snacks that are gluten-free, and we touch on strategies to think about with just modifying insulin delivery as well.
Vanessa Weisbrod:
So how did you get this class going and is it possible to be implemented elsewhere?
Sharon Weston:
The class we taught originally just focuses on going gluten-free, but we know that we have so many children now with the dual diagnosis that I just really incorporated principles that are related to type one diabetes in the class, and so we just offer it once a month. It’s done virtually by Zoom. It’s really important to just make it well-known among all of the providers, GI and endocrine, that there is a dual diagnosis class. And that, I think, is one of the challenges that we had getting it started, was just awareness that there is a class, but now most people know and I think that it’s actually better utilized now.
Vanessa Weisbrod:
That’s great. So many families have very busy afterschool schedules, especially if there are multiple kids in the family. What are some strategies to help families provide meals and snacks that work with both celiac and diabetes?
Sharon Weston:
Yeah, again, planning is such a key element to success, and so having a game plan for meals and snacks helps reduce frustration at meal and snack times. And some families decide to go gluten-free for everyone, some just do a combination of gluten-containing and gluten-free foods. And regardless, there are plenty of options for the whole family that are naturally gluten-free and also lower in sugar and lower in just using highly processed carbohydrates. I encourage families to take advantage of batch cooking so that when a gluten-free meal is made, some of it can be frozen or stored, so that is easy access to pull out for future meals when you’re rushed. And so cooking a larger batch of rice or making a double batch of gluten-free chili, having some gluten-free frozen nut-based cookies, for example, all in the freezer in individual containers or Ziploc bags, super easy to just pull those out from the freezer and use quickly when you’ve got these busy family schedules going on.
Again, remember that meals don’t have to be fancy, so just scrambling an egg or opening a can of tuna fish or using a gluten-free veggie burger are superfast easy options. And for go-to snacks, again, just keeping it simple will reduce stress. So like I said before, having a jar of peanut butter or some kind of nuts in the car, having some easy individually wrapped cheese sticks or just a bag of apples, easy things that are easy to grab and go and can be part of balanced meals and healthy snacks.
Vanessa Weisbrod:
For sure. And I love what you said about just being simple, that often simple is best both nutritionally and taste wise, especially when kids are involved. We recently had a dinner where there was somebody who had both celiac and type one diabetes, and I went as simple as I could come up with. And we had delicious grilled chicken. We had roasted broccoli, roasted sweet potatoes, which were delicious, my kids love sweet potatoes. And for dessert, I gave my kids both some options and we landed on just sliced strawberries with almond butter, which is sweet and satisfied everyone’s sweet craving, and also was good for everybody around the table.
Sharon Weston:
And you just pulled off a very balanced meal and a paired snack all in that.
Vanessa Weisbrod:
And dessert according to the kids.
Sharon Weston:
Yep.
Vanessa Weisbrod:
Well, thank you so much Sharon and Dr. Garvey for all the wisdom that you shared with our listeners today. And now my favorite part of Raising Celiac, let’s find out where Sophia is today.
Janis Arnold:
It’s been almost four years since Sophia was diagnosed with type one diabetes and celiac disease. Today, she is a thriving third-grader and loves playing soccer and the piano. She uses an insulin pump and continuous glucose monitor device that measures her blood sugar with a subcutaneous glucose sensor that reports a value every five minutes. Her mom gets the readings on a smartphone app so she can watch over her while she’s at school. Sophia’s school cafeteria has worked hard to include her in the normal lunch routine and serves foods like grilled chicken, hard-boiled eggs, cheese sticks, hummus, Greek yogurt, multi-grain crackers, gluten-free pretzels, and fresh cup vegetables. In her own words, “Sometimes it’s really hard to be gluten-free, but I know that eating good foods will keep me strong and healthy.”
Vanessa Weisbrod:
Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, and dieticians, to claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at @BostonChildrensCeliac on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Join us next month when we discuss the relationship between celiac disease and eosinophilic esophagitis. Have a great month.
3/16 Episode 4: Eosinophilic Esophagitis and Celiac Disease. What Can I Eat?
Expert Guest: Dr. Erin Syverson and Tara McCarthy, MS, RD, LDN
Learning objectives:
1.) Describe the relationship between celiac disease and eosinophilic esophagitis
2.) Identify indicators to test a patient with celiac disease for eosinophilic esophagitis
3.) Explain nutritional challenges for patients with a dual diagnosis of celiac disease and eosinophilic esophagitis
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the celiac program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac disease and look at how it impacts a patient family, the latest research, and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Speaker 2:
The year was 1992, and all Dave wanted was to be your average college male, going to classes, dating and enjoying the typical university nightlife. But, his college experience was far from that. Instead of being the life of the party, Dave found himself with frequent bloating and heartburn and earning the nickname in his social group of, quote, Puking Dave. Dave referred to himself as a Tums addict, and by early 2005, found himself throwing up after nearly every meal. He went to the doctor and was diagnosed with acid reflux. He was given a prescription medication, but it didn’t really help. He went back to the doctor and was given a motility test to track how food moved in his body. The test showed normal digestion speed and gave no answers as to why Dave couldn’t eat normally.
Vanessa Weisbrod:
Eosinophilic esophagitis, or EOE, is an autoimmune disease that causes inflammation and damage to the esophagus, the muscular tube that connects the mouth to the stomach. It is usually caused by a food allergy and can affect one’s ability to eat both physically and psychologically. Damaged esophageal tissue can lead to difficulty swallowing or cause foods to get stuck when you swallow. This can cause a great deal of anxiety for patients at every meal. Testing procedures for EOE can be complex and many aspects of the diagnostic criteria aren’t standardized. EOE symptoms can look a lot like those of other conditions making a diagnosis sometimes a long road for patients.
Speaker 2:
And a long road. It was for Dave. By now, Dave was so frustrated with the lack of answers he was getting from his doctor that he felt ready to give up and just try to accept that eating would never feel normal again. He lived this way until 2010 when his symptoms got worse and he started having major difficulty swallowing and food getting stuck in his throat. He started a list and began to see a pattern of this happening whenever he ate eggs, beef, broccoli, apples, potatoes, pork, chicken, and salmon. Around the same time, Dave started getting severely constipated and experiencing numbness in his hands and feet. He had a burning sensation in his left calf and pain in his knees, hips, shoulders, and back. He was always cold and his mind was consistently foggy.
Vanessa Weisbrod:
Celiac disease can be difficult to diagnose because symptoms can vary greatly from patient to patient. Anemia, osteoporosis, loss of dental enamel, heartburn, headaches, tingling hands, joint pain, or a blistery skin rash. Among one of the hardest symptoms to pinpoint and connect to celiac disease is brain fog. Diagnosis gets even more challenging when there are multiple autoimmune diseases affecting the patient all at the same time.
Speaker 2:
In 2016, more than 20 years after symptoms started, Dave saw a new doctor and got his first diagnosis of Hashimoto autoimmune thyroid disease. He started taking levothyroxine daily, which helped his constipation and numbness in the extremities. But the heartburn, bloating, and regular vomiting did not get any better. So Dave did what any person does these days and turned to Google. With a little bit of research, he learned about the strong connection between Hashimoto’s and celiac disease. Armed with his research, he returned to the doctor and asked for a celiac blood test. It was positive.
Vanessa Weisbrod:
The prevalence of autoimmune thyroid disease in patients with celiac disease is four times greater than that in the general population and is likely due to a shared genetic predisposition. The symptoms of the two conditions overlap greatly, but the treatments are different. With celiac disease, the only treatment is a strict gluten-free diet. Hashimoto is treated with the drug levothyroxine, a synthetic hormone that works like the T4 hormone naturally produced by the thyroid. Both the gluten-free diet and levothyroxine are lifelong treatments.
Speaker 2:
Armed with his positive blood test for celiac, Dave immediately started a gluten-free diet and felt confident that paired with the levothyroxine, he was on the path to being well for the first time in decades. It took about four months to start noticing a difference. He says it was like, “Someone flipped a light switch.” The day he woke up and his mind wasn’t foggy and his heartburn and bloating subsided, he finally felt hopeful that he could lead a normal life. But, despite his rigorous efforts with the gluten-free diet, he was still choking on food when he ate. So he did what he does best, started doing more research and made another appointment with his doctor. An upper endoscopy later he had his answer. A third autoimmune disease added to the list. Eosinophilic esophagitis.
Vanessa Weisbrod:
The association between eosinophilic esophagitis and celiac disease is still controversial and its prevalence is highly variable. Like celiac disease, one of the treatments for EOE is the elimination of specific food groups from the diet. But, unlike celiac disease where the known trigger is gluten, with EOE it takes some deeper investigation. It’s fair to say it’s complicated. So how does a patient with celiac disease and EOE manage the dietary considerations of both diseases? How do they handle the anxiety at mealtimes? Does a gluten-free diet help with the EOE symptoms? Would Dave’s story have turned out differently if he had gotten biopsy confirmation of celiac disease? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about celiac disease and EOE with Dr. Erin Syverson, the associate director of the Eosinophilic Gastrointestinal Disease Program at Boston Children’s Hospital. Then we’ll be joined by Tara McCarthy, a clinical nutrition specialist at Boston Children’s Hospital, who specializes in working with families with celiac disease and EOE. Welcome to you both to Raising Celiac.
Erin Syverson:
Thanks. Happy to be here.
Vanessa Weisbrod:
Dr. Syverson, let’s start at the beginning. Dave’s story is really complicated and it took him many years to get a dual diagnosis of celiac and EOE. Can you talk to our listeners about the current diagnostic process for celiac and EOE and how you get to that dual diagnosis?
Erin Syverson:
Ultimately, the diagnostic process for both of these diagnoses are pretty similar. We can look with an upper endoscopy or EGD. So when we suspect celiac disease in a patient, we often use a blood test first to get more information. Typically, if that blood test is positive or if we have a strong suspicion for celiac disease in a patient will do an upper endoscopy or an EGD to confirm. Unfortunately, in EOE we don’t have a similar blood test as a screening tool, so we have to have a pretty high suspicion for EOE. We have to suspect it based on symptoms alone. And then, at that point, we’d recommend getting an EGD to take a look further.
Vanessa Weisbrod:
Dave did not have a biopsy to confirm his celiac disease. How could his story have changed if he’d had that procedure?
Erin Syverson:
A lot of that depends on the timeline. It sounds like he struggled with symptoms for quite a long time. If he had done an upper endoscopy right after he had that celiac blood test, it’s possible they may have seen some inflammation in the esophagus to suggest EOE also, and so we would’ve potentially gotten a dual diagnosis at the same time. That being said, we don’t have a good sense of when these symptoms or when these diagnoses develop in relation to one another. It’s always possible, maybe we would’ve just seen celiac diseases at that time and we’d have to revisit later.
Vanessa Weisbrod:
If you have a patient with celiac disease, what would be an indication to test them for EOE?
Erin Syverson:
I think a lot of that depends on where in someone’s journey they are in terms of their celiac diagnosis. For instance, someone has a known diagnosis of celiac disease and they’ve been compliant with their gluten-free diet and despite that they’re still having persistent symptoms or other symptoms come to light that don’t really fit with the way they initially presented, it’s important to take a step back and to reevaluate what’s going on with that patient. Do they need additional workup or evaluation for other diagnoses?
Vanessa Weisbrod:
How long would you expect a celiac patient to follow a strict gluten-free diet before you consider their symptoms are being caused by another condition?
Erin Syverson:
That’s a hard question to answer. All patients are different. We know that this varies a lot, patient to patient. Some of this depends on compliance and how quickly a patient and their family is able to really pick up on compliance with a gluten-free diet. But, everyone has a little bit of a different timeline. What I find most reassuring, as the clinician, is if someone’s symptoms are showing gradual improvement over time, I think that’s overall reassuring. If it feels like we’re stalling or we’ve gotten to a point where someone seemed like they were feeling good and now we’ve backtracked, that’s oftentimes when I want to reassess things and I become a little bit more suspicious for maybe the possibility of something else going on.
Vanessa Weisbrod:
Is it always celiac that’s diagnosed first and then EOE? Or have you seen patients that are diagnosed with EOE first and then celiac disease?
Erin Syverson:
There is no clear pattern that I’m aware of or anything that’s really been published. I think there’s a little bit of a bias here where celiac disease, we have a screening tool. The majority of patients are coming in with GI symptoms. At some point, if things are not lining up and they’re not improving with whatever treatments we try out first, they’re going to end up with a celiac test in their workup. If that test is positive, most of them, at least in the pediatric population, are headed toward an upper endoscopy to confirm that diagnosis. The flip side is that patients with EOE, we’re not going to have a screening test. The pretest probability is lower for EOE headed into a scope as opposed to someone with celiac disease. That’s going to bias your results.
Vanessa Weisbrod:
Is this an argument for why, at least in kids, we should keep doing a biopsy?
Erin Syverson:
As a pediatric gastroenterologist, I definitely have a bias there. I think kids, depending on the age that they’re presenting symptoms, may not be super reliable. In EEO specifically, the symptoms change a lot, as kids get older. In younger kids, we can see really subtle non-specific symptoms. As kids get older, we start to see that more classic textbook presentation that was described for Dave where food’s sticking in the esophagus, vomiting, heartburn. But, young kids sometimes don’t present that way, so we have to be alert and aware.
Vanessa Weisbrod:
What do you see more commonly in young kids?
Erin Syverson:
Really depends on how young. The little kiddos, thinking like toddler age, we can see trouble with advancing with solids. Moving from more formula-based diet to more solids and more textured foods. Feeding refusal and feeding difficulties. Vomiting is more prevalent in younger kids. We hear vague complaints, belly aches, which is so non-specific, so that can be hard. As kids get older, we’ll start to hear more about belly aches and heartburn. Kids can start to describe that feeling of heartburn that maybe like a three or four year old might not be able to. And then as we head toward those middle school to high school years, that’s when we start to hear more about food sticking, heartburn. We may still see some vomiting then, too.
Vanessa Weisbrod:
Almost every study you read about the connection between celiac and EOE starts with, the link is controversial. Why is this?
Erin Syverson:
It’s a great question. I think really what it comes down to is the controversy is the fact that the studies that are out there report such a wide range of how common it is to have both diagnoses. They range from not having any relationship at all to really high percentages. That’s really where the controversy comes from. I can say just anecdotally, I do feel like we see it more, the two diagnoses together, as compared to one versus the other. I think that’s really where it stems from.
Vanessa Weisbrod:
Is there any evidence suggesting that when you biopsy a patient for celiac disease that you should also look for EOE while they’re having that procedure?
Erin Syverson:
When someone’s going in for an upper endoscopy for celiac disease, we are looking everywhere. We’re looking at the esophagus. We’re looking at the stomach. We’re looking at the small intestine, the duodenum, that first part. That’s where we’re looking for celiac disease. We’re looking in there. Sometimes we can see features that suggest celiac disease. Sometimes we don’t, to the naked eye. When we’re looking for celiac disease, we’re always taking biopsies or little tissue samples to look at under the microscope to confirm. Everyone’s practice varies, but I think a large percentage of pediatric gastroenterologists are probably taking biopsies in most areas. That would also include, in addition to the small bowel, the stomach and the esophagus. If that is the case, we’re, by default, evaluating for EOE among a number of other diagnoses. We’re also looking to see what things look like. If things look off, we’re definitely taking biopsies there.
Vanessa Weisbrod:
You’ve diagnosed a patient with celiac and EOE. What happens next? Do they go for allergy testing to determines which food they need to eliminate?
Erin Syverson:
That is also something that has changed a lot in the past decade or so. We have found that specific allergy testing, like skin testing, blood testing, really does not pan out well for figuring out what someone’s trigger is in EOE. After a few studies were published looking at that, many people have transitioned over to what we call empiric food elimination, if we’re going to do dietary treatment for EOE, which means we know what the top triggers are in EOE, and so we look at that list and say, “Where do we want to start?” In patients who have a diagnosis of both celiac disease and EOE, your hands are a little bit tied a bit more because we have to eliminate gluten to treat the celiac disease. Then we can see where things fall into place after that in terms of how someone responds for treatment of their EOE.
Vanessa Weisbrod:
Talk to us about the treatment options for EOE, both dietary and adding in a medication.
Erin Syverson:
I think of this as two big categories. We can either go with diet elimination or we can go with medication. Diet, which I touched on just a little bit ago, we will take a look and if someone has both EOE and celiac, we’ve cut out the gluten. In terms of other foods that we may or may not need to also pull out, we know that the top offending agent in EOE is dairy. That is followed by, in someone who’s already got gluten out of their diet, followed by egg, soy, peanut, tree nut, fish, shellfish. We have a top list there. It’s a lot of shared decision making with a family about how we want to address someone’s EOE, if we’re looking past just cutting out the gluten. Do we pull out milk also? Do we pull out milk and egg?
There’s not a right or a wrong in this. It’s really tailored to families. When it comes to medications, there’s three big categories of medications that we use for EOE. One is proton pump inhibitors. They’re a special antacid that’s been shown to help in eosinophilic esophagitis. That’s medications like omeprazole, Prevacid, those kind of things. That works in about 50% of patients. There’s swallowed steroids that come in a variety of different forms which can treat the inflammation on contact when a patient swallows the medication. Works in up to about 70% of patients. And then there’s a new medication that was the first FDA approved medication for EOE just approved in May of last year called dupilumab or Dupixent, which is a biologic and it’s an injection that’s weekly for patients who are 12 and up.
Vanessa Weisbrod:
What is the deciding factor for adding in a medication?
Erin Syverson:
Tends to be a very personal decision for families and their physician. I think the first thing to figure out is, once someone’s cut gluten out of their diet for the treatment, clear treatment of their celiac disease, is their EOE going to also respond? If it does, awesome. We’ve killed your birds with one stone and we can move forward. And when I say respond, we’re thinking both symptom improvement, like for Dave, but also, unfortunately, repeating a scope at some point, seeing if the inflammation has gone away. Then moving on from there. When, I think at that point, we’ve cut out the gluten, say someone’s EOE is still active, that’s when we have to make that decision. Do we pull more foods out of the diet or do we add in a medication? There’s not a right or wrong, and a lot of this depends on a patient’s age, lifestyle, and family preferences.
Vanessa Weisbrod:
It’s obviously challenging to cut out gluten. It’s challenging to cut out more foods. Does adding in the medication allow the patient to eat whatever they want? Obviously, gluten-free diet continues on, but for the EOE symptoms.
Erin Syverson:
I think in medicine, we would never say, “Yes, always.” That’s not always a simple answer. But for the most part, adding in medication should allow for a lot more flexibility with diet, a lot more flexibility. Yeah, one could argue that that could be a better way to go for a family who is having trouble with restrictions and the idea of pulling another food group out of their diet is an overwhelming thing.
Vanessa Weisbrod:
Does having celiac disease impact any of the decision making around the treatment for EOE?
Erin Syverson:
Yeah, it does. It does. I think from the very first step, what we’ve talked about. You clearly have an intervention you need to do, when you get both of these diagnoses. I think the most clear cut thing is that we have to cut out the gluten first. I personally don’t like to be overly restrictive with diet if we don’t need to. There are no clear, I think this is an important part, is there are no clear guidelines about how we do this. There’s not a step-by-step way that everyone is following when you get a patient who has celiac disease and EOE about how we’re going about management. It’s a little bit stylistic, physician to physician, but, in the end, we’re really talking to families about what’s going to work best for them.
Vanessa Weisbrod:
A study from the University of Chicago Celiac Center looked at the reintroduction of certain foods once the gut is healed. Can you talk a little bit about this study and how likely it is for a dual diagnosis patient to be able to add back in common foods like dairy?
Erin Syverson:
The study that we’re talking about is the authors looked at the medical records of 350 patients who had been diagnosed with celiac disease. They found that 6% had both celiac disease and EOE when they looked back at records. There were 17 patients in this group who had repeat scopes. The sample size was small and that needs to be considered. But just to give you a sense, just under 25% of those patients, of those 17 patients, had resolution of their EOE on a gluten-free diet alone. Just under 60% needed to eliminate other food groups for their EOE to resolve. And then when they looked at what food groups they pulled foods out and then they reintroduce foods. And when they tried to reintroduce foods back into the diet, they saw that, this is a gross oversimplification, but they found that about about 50% could tolerate reintroduction of dairy or eggs or nuts into the diet, whereas 100% tolerated reintroduction of soy into the diet.
One of the conclusions that they pulled from this is, when we’re reintroducing foods into diet for patient, maybe we start with soy and then go from there, which I think is not unreasonable, for sure. This pattern of tolerance isn’t unlike what we see in patients with EOE alone. If we’re going to go and pull a bunch of foods out of someone’s diet and then try to reintroduce, we do try to start with the less likely offenders. We’re just looking at that list of top ones. I’m always adding in dairy last. It’s consistent what we’re thinking about in patients with EOE alone. But, I think this was a really interesting study. And something to keep in mind though, is it generalizable to the entire population that has both celiac and EOE? I don’t know if we can say that just yet because it’s a pretty small study, but well done.
Vanessa Weisbrod:
Really interesting, especially, so many gluten-free products have dairy added to them. I know for patients with celiac disease, it’s something that would be ideal to be able to add back in. As you heard from Dave, quality of life is severely impacted for patients living with these conditions. How do you address the quality of life issues in your clinic? And is it different for younger kids than for college students like Dave was?
Erin Syverson:
It’s so important, but so underappreciated. I try to think about that regularly for families. Cutting anything our from the diet is really hard. Gluten-free diet alone is really hard. And then if you’re going to go tell someone now you have to cut dairy, it’s a lot. It’s a lot. Regardless of a patient’s age, I’m trying to keep these things in mind. The age really can impact it. I’m always mindful that when we’re cutting a number of foods out of, say like a young child’s diet, a toddler, what kind of relationship are they developing with food at that same time? These are really important times in a kid’s life where they’re trying new foods. We want it to be a positive experience. I don’t ever want kids to feel like food is a bad thing. Food is the enemy.
Food is always associated with negative connotations. I try to be really thoughtful about that when we’re talking about restricting a young child’s diet. On the flip side, you can think about someone, like Dave, who’s in college, and what is lifestyle like there. If you’re in a dorm and you’re on the school meal plan, what are your options? I want to set someone up for success. But, if your options are limited and you’re eating in the school cafeteria, maybe that’s not going to be the best option. It very much depends on the kid though. If someone’s living on their own, they’re a college student, they want to cook for themselves, they have the time. That’s great. But, that’s not everyone. It’s really very much a personal decision.
Vanessa Weisbrod:
Thank you so much Dr. Syverson, for all of this wonderful information. We’re going to take a quick break and when we come back, we’ll have our Boston Children’s Hospital dietician, Tara McCarthy, here to talk to us about nutritional support for patients with a dual diagnosis.
We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.
Speaker 4:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Welcome back and welcome Tara to the podcast.
Tara McCarthy:
Thanks for having me.
Vanessa Weisbrod:
Living with both celiac disease and EOE can be very challenging. Where do you start in nutritional counseling for dual diagnosis patients?
Tara McCarthy:
That’s a great question. I think it really depends on what came first, the celiac or the EOE. If they’ve been on a gluten-free diet and now they’re asked to follow another elimination diet, they’ve already been used to it and they’re probably watching cross contact and things like that. Adding a few things, they feel okay, but sometimes they also know how difficult it was just to eliminate gluten. And then they remember or look at all their packages that they like and they realize, “Oh my gosh, those other foods are now in there, so now my favorite products are gone.” It is difficult. I really try to meet patients where they are and really involve them with what the treatment is going to be, as well. I know Dr. Syverson was talking about really getting the family on board of what is good for them at that time.
There are some families who just can’t think about doing another elimination after they already have done gluten-free. If they’re diagnosed with EOE and then celiac, I think sometimes wheat is part of one of the things we might take away. They might have already even been taking away wheat and now we’re just going a little bit deeper dive with celiac disease, avoiding the other things. So it really just depends. I think though when you have EOE and then you’re diagnosed with celiac disease, the cross contact is much bigger with celiac disease and the gluten-free diet. That’s the piece that really families struggle with.
Vanessa Weisbrod:
If a patient comes to you with celiac disease and they’re still having symptoms despite reporting vigilance with the gluten-free diet, how do you determine if they’re inadvertently getting gluten in their diet or if something else could be going on?
Tara McCarthy:
We get this question a lot. I get a lot of patients like, “Help. We think there’s gluten still in the diet.” This is where put on my detective hat and really deep dive into what the patient is eating. We ask the families to do a three-day food record with really details about the products, where they got them, what’s on the label, and then looking for other things and ask them tons of questions about everything from, do you eat gluten on purpose? Do you eat gluten to be polite? Do you ever take the cheese off of pizza? Because the cheese, maybe think that’s okay. All of those things. There’s a ton of questions. I have this whole big list that I say to families, “I’m going to ask you a ton of questions and some I know are not relevant for you, but we really just want to be consistent when we’re looking for gluten and how it’s getting in.”
Vanessa Weisbrod:
What are the most common foods, besides dairy, that we know of that we have to eliminate on top of gluten for these dual diagnosis patients?
Tara McCarthy:
Really the top four I would say now are dairy, wheat, egg, and soy. In the past, we definitely have eliminated nuts and tree nuts and shellfish. Fish, however, we do that a lot less now.
Vanessa Weisbrod:
Gluten is eliminated from the diet. And for some of these patients, so are many other common foods. What is your approach to helping these patients find food that excites them and participate in their everyday social activities like going to school, out to dinner, and family gatherings?
Tara McCarthy:
The most important thing, I think that I can bring to the table, is really telling the families what they can eat because they hear, “You can’t have gluten. You can’t have dairy. You can’t have eggs.” Really, telling them all the foods that they can eat. All fruits, all vegetables, all meats, legumes, seeds. There’s lots of foods out there that are naturally gluten-free and also free of the top eight. I think that’s really where I start. I also tend to look at what they’re eating now and see how difficult it’s going to be. Really, what foods are they going to miss and try to figure out some other foods that might work for them.
Vanessa Weisbrod:
Gluten-free foods, as well as foods free of other common allergens, are really expensive. What suggestions do you have for maintaining good dietary adherence while being mindful of the budget?
Tara McCarthy:
This happens for so many families. We really talk about it right in the beginning when we’re talking about any elimination diet. Again, I go back to the whole natural foods. I do tell people, I say, “I’m a dietician, but I’m also a mother of three, so I understand we’re not all going to eat whole natural foods.” But, really that’s where the cost adds up is when you have processed foods. Really thinking about a bag of potatoes is going to be a lot less money than a box of gluten-free pasta. Just being mindful of where you’re going to spend your money on those different things. You are going to have to buy a gluten-free bread. Then you might want to make some other choices for some other foods.
Vanessa Weisbrod:
We all know how important it is to find a dietician who specializes in celiac disease and EOE. We know that not every hospital has many readily available to see patients. Can you talk to our listeners about how they might find a dietician who specializes in dual diagnosis in their own community?
Tara McCarthy:
First, I always say, ask your GI for a recommendation. The Academy of Nutrition and Dietetics has a resource of providers. Many local children’s hospitals also have dieticians that specialize in both. And then I also tell people to look on their social media feeds because when someone has a really good provider, they’re usually happy to share that. That’s usually the best place.
Vanessa Weisbrod:
You bring up social media, and I can’t let you leave the studio today without talking about some of this negativity we’ve seen online recently about meeting with dieticians to help with things like celiac disease. I think meeting with a dietician should be the gold standard of treatment for celiac disease. It’s really the place where you learn so much. Can you talk to our listeners about why it’s important to see a dietician and how you can really help them have a better quality of life?
Tara McCarthy:
I would say it’s just like any provider. If you start off and you’re not enjoying the experience, then you need to switch providers. It is so important, the diet in both of these diagnoses. I think taking the word diet out sometimes is really important, and really talking about a lifestyle and not bringing to the table the negativity of, you can’t, you can’t, you can’t. But, really encouraging people to the, you can, you can, you can. There’s so many delicious, wonderful foods out there that families can eat.
Really trying to turn the tables on looking at what is important. A dietician is really important because these are lifelong. It changes. You might have a three-year-old that you’re able to feed everything and they’re meeting their needs. And then you might have a teenager who is walking home and getting things at the corner store. They’re very different, as the child is in different milestones. I think it’s important to keep the dietician in their life. But, really find a provider that you click with, someone that you connect with, someone that you feel comfortable with asking questions and really enjoy the experience.
Vanessa Weisbrod:
For sure. Thank you so much, Tara and Dr. Syverson, for all of the wisdom that you shared today. Now, let’s find out where Dave is today.
Speaker 2:
It’s been decades since Dave began his journey to getting a diagnosis. He now lives on a strict gluten-free and dairy-free diet and feels healthy most of the time. However, he lives every day with major food anxiety issues, and rarely eats outside of his home unless he’s at a well-established, gluten-free eatery. Dave has learned to love cooking and is having fun discovering how to modify recipes to prepare his favorite meals at home. In 2018, his sons helped him create an Instagram account to post his gluten-free recipe photos. It’s now become his hobby. In his own words, “I turned 50 last January and I feel like a new person. I don’t think I knew how sick I was until I felt normal. My best advice? Don’t stop advocating for yourself because you might just find yourself feeling well.”
Vanessa Weisbrod:
Thanks for listening to this episode of Raising Celiac. Special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like, and subscribe wherever you get your podcasts. For more information, check us out on social at @BostonChildren’sCeliac on TikTok, @Children’sCeliac on Twitter, or @CeliacKidsConnection on Instagram. Join us next month when we discuss the relationship between celiac disease and dermatologic issues. Have a great month.
4/20 Episode 5: Did Gluten Cause My Headache?
Expert Guest: Dr. Samuel A. Frank, neurologist at Beth Israel Deaconess Medical Center and Associate Professor of Neurology at Harvard Medical School
Learning objectives:
1.) Describe the relationship between celiac disease and headaches
2.) Explain treatment options for patients whose primary symptom of celiac disease is headaches
3.) Identify key indicators for screening a patient with neurological symptoms for celiac disease
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Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the celiac program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient family, the latest research and offers suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5, AMA PRA category 1 credits for physicians. 0.5 contact hours for nurses. 0.5 ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Speaker 2:
Vincent was an extremely active child. He grew up just outside of Boston and his parents knew they were in for an athletic kid when he was scoring goals on the soccer field in his preschool league. At age 10, Vincent started playing on his town’s competitive travel soccer team, and during the winter months, he tore up the mountains in New England on a competitive ski racing team. He was also a good student and loved reading and writing stories about his adventures in sports. He was an all-around talented kid and extremely kind too.
Just after Vincent’s 15th birthday, he was at a ski race in Vermont. He was waiting on his turn to race through the slalom gates when he felt the strange wave come over him. His eyes felt blurry with small flashes of light and he felt tingling in his hands and cheeks. He clicked out of his skis and sat down on the snow opening his eyes sent a stabbing pain through his head, so he pulled down his goggles to block out the sun. Within a few minutes, he got what he describes as the “worst headache of his life.” Just moments later, his race number was called and it was his turn to fly down the icy mountain. He did what he thought was expected of him and started the race. He made it down safely, but was disappointed with his time. He found his mom and told her he had a headache. She took Vincent into the lodge, got him some water and Excedrin and told him to close his eyes. He did it as he was told, and about an hour later he was feeling much better. He grabbed his skis and headed back up the chairlift he finished second that day.
Vanessa Weisbrod:
A migraine is a headache that can affect both kids and adults and causes severe throbbing pain usually directed at one side of the head. Migraine headaches can be accompanied by nausea, vomiting, and a severe sensitivity to light and sound. Attacks can last for a few hours or up to several days at a time. In some cases, migraine pain can be so intense it interferes with daily life activities. In some patients with migraines, the experience a warning sign that the headache is coming called an aura. The aura may cause visual disturbances like blind spots, flashes of light or tingling in the extremities or face.
Speaker 2:
Vincent returned home from that weekend’s ski race hopeful that the headache he got was caused from not drinking enough water that morning, but much to his dismay the next day and several days after the headaches returned. Some days he got severely nauseous with the headaches and vomited. Other days he had no headaches at all or they were less painful or he felt better with Excedrin. This went on for months.
After several spells of headaches, Vincent’s mom made an appointment with the pediatrician to hopefully get some answers. The pediatrician’s first impression was that Vincent was running himself ragged with two competitive sports teams and a demanding course load at school. His sleep was irregular and he didn’t always eat consistently throughout the day. He recommended that Vincent’s scale back and build in more time for rest and proper hydration. If things didn’t get better in a few weeks, he would make a referral to a neurologist for additional testing.
Vanessa Weisbrod:
The exact cause of migraine headaches isn’t fully understood. Though it’s thought that genetics and environmental factors like diet appears to play a role. Triggers of migraines vary by individual, so keeping a headache diary can be a helpful way to identify a consistent trigger. Some common food triggers include aged cheeses, alcohol, coffee, nuts, pizza or tomato-based foods, smoked or dried fish, onions, nitrate containing meats like hotdogs, sausage, bacon and lunch meats, and mono sodium glutamate or MSG.
Speaker 2:
Vincent’s mom gave rest about two weeks before she went ahead and scheduled an appointment for her son to see a neurologist. She had recently seen a webinar where experts were discussing the link between celiac disease and headaches. She herself had been diagnosed with celiac disease years ago. Despite her gastroenterologist recommending the entire family get screened, she never made the time for them all to have blood work done. She had a sneaking suspicion that gluten might be causing these headaches. She also started a food diary to see if she could link his headaches to meals from that day. Unfortunately, keeping track of everything a teenage boy ate all day while out of the house was trickier than she had imagined.
Vanessa Weisbrod:
There’s an increased risk of experiencing headaches with celiac disease. One study found the prevalence of headaches in adults with celiac was 26% and in children with Celiac 18%. The good news was that the gluten-free diet appeared to help the headaches with up to 75% of adult patients reporting that their headaches improved when they followed the gluten-free diet. In children with celiac, headaches resolved in more than 70% of the study group.
Speaker 2:
Vincent’s neurologist did not agree with his mom’s suspicion about celiac disease. He started by ordering an MRI. It took several weeks to get the appointment and the scan came back noting some minor changes in white matter, but nothing significant. The neurologist recommended starting Vincent on a combination of medications to knock out the headaches, the blood pressuring lowering medication, verapamil and anti-seizure drug, Topamax. He also prescribed sumatriptan pills to help abort the headaches when they started. He told Vincent to expect the drugs to take several weeks to take effect and to just “Hang in there in the meantime.”
Vincent reliably took the medications, but quite quickly he started thinking that the medications were making him feel sicker than the headaches. He was severely constipated and felt as though he couldn’t find his words. Where he used to be sharp at school, he felt in a haze where he couldn’t remember what was coming next. This went on for about six months before mom called it quits and went back to the pediatrician. She demanded a blood test for celiac disease. It was positive.
One week later, he was in to see a gastroenterologist at the local children’s hospital and a biopsy confirmed the diagnosis. Within three months of starting a strict gluten-free diet, Vincent felt like a new person. He vividly remembers waking up one morning and feeling like the haze was gone and he was himself again. He had weaned off all the medications and was getting back to his normal life. While Vincent felt happy and relieved, mom felt angry. She had watched her son lose more than a year of his life, fall behind in school and need to pull back from the competitive sports he loved. She was mad at herself for not getting him tested for celiac disease sooner and frustrated that her concerns weren’t taken seriously In the beginning.
Vanessa Weisbrod:
The incidence of celiac diseases rising and as more patients are diagnosed, clinicians are seeing an increased rate of atypical presentations of this autoimmune disease. Less than half of patients experience the classic celiac symptoms like abdominal pain, chronic diarrhea, vomiting, or failure to thrive. Today our clinicians are seeing patients with celiac disease present with anemia or iron deficiency, constipation, epilepsy, headaches, neuropathy, and many other symptoms. To treat them effectively, they must have a close working relationship with colleagues across all medical disciplines.
Now let’s get back to Vincent. How could eating gluten cause such severe headaches? Once diagnosed on a gluten-free diet? Will a single gluten exposure lead to a headache attack? What other neurological issues are related to celiac disease and are they reversible? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about celiac disease and neurological issues with Dr. Samuel Frank, a neurologist at Beth Israel Deaconess Medical Center and Associate Professor of Neurology at Harvard Medical School. Dr. Frank is a member of the Harvard Medical School Celiac Research Program and specializes in treating patients with neurological conditions related to celiac disease. Welcome Dr. Frank to Raising Celiac.
Dr Samuel Frank:
Thank you. Thank you so much for having me. It’s a pleasure to be on.
Vanessa Weisbrod:
So can we start by talking about the different types of headaches and when to seek medical attention versus relying on over-the-counter medications?
Dr Samuel Frank:
Absolutely. Well, in full disclosure, I’m not a headache specialist. I am a neurologist. But in general, the types of headaches that we in groups classify, there’s migraine, there’s cluster, there’s tension, and then what we call secondary headaches. Secondary headaches are things caused by something else, like you need glasses and you’re not wearing them do you have something going on from a dental perspective that needs to be fixed or you have neck problems or sinus disease.
So usually people will try and address headaches themselves with over-the-counter medications, rest, making sure they’re drinking enough, having a little bit of caffeine, but not too much. So these are the types of things and when it becomes refractory or interferes with any of your functioning, when it’s severe, those are the times to seek help, certainly. But we always start with our primary care providers and if there are any focal neurologic findings, weakness anywhere, numbness or tingling, lopsidedness in terms of… Those are definitely times where you want to go more urgently to either urgent care, emergency department or seek neurologic care.
Vanessa Weisbrod:
So Vincent’s headache started amidst a very strenuous time in his life where he was competing at a high level in sports and academically. How does a neurologist determine the root cause of headaches in a patient like Vincent?
Dr Samuel Frank:
For all patients, we start off by getting their story, taking a history of what the event was and what’s the timeline. We also want to get certain details that may be clues in terms of what types of headaches they have and what may be exacerbating or [inaudible 00:10:43] factors. So for example, caffeine, if people are drinking a lot of caffeine, going through two bottles of two liter sodas a day… That’s not good for you in many ways, but it certainly can give you too much caffeine and trigger headaches. Sleep is a really important aspect when it comes to headaches too and family history, sometimes there’s a family history of very clear migraines and sometimes not. So we start off with that.
Usually with patients who have migraines or other types of headaches, we do some limited blood tests. That’s not what we rely on, but I always make sure that I’m checking a thyroid panel, usually iron studies and blood counts and a celiac panel, but I’m biased that way. And imaging people think that we can see what the problem is. When it comes to headaches, we typically cannot. Imaging is usually very normal and it’s indicated if there’s an abnormal neurological examination or if we suspect a secondary cause. If people have bad neck issues that is giving them a headache on the back and going up, we may image their neck for example. But in run-of-the-mill tension headache or migraine, we typically don’t need imaging. So that’s the overall pathway that we think about in terms of the evaluation of a headache.
Vanessa Weisbrod:
Can you explain why celiac disease could cause headaches?
Dr Samuel Frank:
I wish I could explain what causes most headaches, but I don’t think that we fully understand why that connection is there. There may be underlying medical issues, so for example, patients with thyroid issues, it’s more common in people with celiac and those can certainly contribute to headaches. There is a thought that general inflammation can do it. Micronutrient issues may trigger migraines. Migraines specifically, there’s this thought of involvement of the surface of the brain similar to seizures or epilepsy and so there could be some overlap there, but I think these are all speculation. I don’t think that we really know why people with celiac get migraines and I think often we don’t understand why people get headaches or migraines to begin with.
Vanessa Weisbrod:
So I know that you’re biased and you believe in testing, but for others, what would be a key indicator to test a patient with headaches for celiac disease?
Dr Samuel Frank:
Usually I will test all patients with a pretty classic migraine for celiac disease. Now, I think I am definitely in the minority of providers that do that for patients. I also use family history as a guide because most of the time true migraines actually run in families, and so you’ll get a history that my grandmother had migraines and my dad had migraines and now I have migraines. And so it’s really in every generation, it’s multiple. But if migraines don’t really run in the family, then that’s a clue that this may be another cause and my suspicion of something like celiac goes up. So specifically if there’s no family history of classic migraines, those are the patients that I will check.
Vanessa Weisbrod:
Can a headache be the only symptom of celiac disease that someone experiences or is it likely there are other symptoms as well?
Dr Samuel Frank:
Well, neurologically, there can be many neurological manifestations in celiac disease. Fortunately, most of the more serious ones that you may read about or in review articles are rare, but we do see some that are much more common than others. People do describe a vague sense in terms of their thinking not quite right. Brain fog is the common term that’s used for that, although we don’t have a true medical term for that. And neuropathy I think are the most common neuropathy is just damage of the nerves in the arms and legs to either the nerves that provide sensation to the brain or provide motor signals out to muscles. There can be other signs like coordination issues, what we call ataxia, and as part of my training, that was how I learned about celiac disease, epilepsy, dementia, and other muscle issues. I think that depression and anxiety are commonly put into this category too, and they can certainly be part of the neurological manifestation. They can be separate as well.
Vanessa Weisbrod:
So how long might it take for a headaches to resolve after starting the gluten-free diet?
Dr Samuel Frank:
I usually tell people that they might start to feel better within a few weeks or a month, but it really can take about six months for them to reach their best in terms of any neurologic issues and specifically migraines in general, I try to under promise and over-deliver. So if they feel better sooner, then that’s great, but I think it’s a matter of weeks to months, it’s not going to be instantaneous and it certainly shouldn’t be years.
Vanessa Weisbrod:
I think that’s really good advice. We often hear about people who start a gluten-free diet and a week later they’re not seeing any changes and then they’re like, “Ugh, maybe I just go back to gluten.” So I do think it’s really important to set that as expectations in the beginning, that it’s not an overnight fix.
Dr Samuel Frank:
We live in an overnight and instant world with all different kinds of messaging and expect people to… But the human body has not evolved to keep up with our technology. So I think our expectations of what’s around us is a little different than what the human body is capable of. I agree.
Vanessa Weisbrod:
Absolutely. So if a patient’s primary symptom of celiac disease was headaches, if they’re exposed to gluten, will they always get a headache or could their symptoms evolve down the road?
Dr Samuel Frank:
I don’t think that this is studied very well. So let me start off with that. So my response is really based on anecdotal evidence or anecdotes I should say, in terms of what patients have told me. Patients with celiac obviously know when they feel different when they get exposed to gluten after they’ve been on a gluten-free diet. And many patients with migraines, they’re still going to get headaches every once in a while, like a usual person might if they don’t sleep well, they sleep funny and their neck is… But if they get a different kind of a headache when they get exposed to gluten, let’s say they only get migraines when they’re exposed to gluten. They may note that they can have that migraine within hours of that exposure. So obviously if people are chronically exposed, that increases the risk for other neurologic complications beyond migraines. But usually people know pretty quickly if they’ve been on a gluten-free diet and they get exposed to gluten that that they’ve had that because of their migraine.
Vanessa Weisbrod:
Are there particular preventative or abortive medications for migraines that are more effective for patients with celiac disease?
Dr Samuel Frank:
A gluten-free diet? That’s really obviously the core, and I know that that’s obvious, but I think that there are people that think that they can get away with a little bit of gluten. They can’t. And I just think that that needs to be emphasized. So it’s obviously the mainstay of treatment and there are many people that are on multiple drugs for headaches and they can get off of almost all of them or all of them once they stick with a gluten-free diet. So that’s really the key.
Before people get to that point. Let’s say it takes six months, once they get diagnosed and they’re on a gluten-free diet, they continue to get migraines. We do use the usual migraine type of medications and they’re really in two classes. One is to prevent a migraine from happening, and that’s a medication that you take every day or in some cases every other day or a shot that you give yourself to prevent the migraine. And then there are medications that we use to stop the headaches once they start and with a migraine, the earlier you take a medication, the more effective it is and the less disabled people are going to be because of that migraine.
I also want to emphasize that with every medication you want to check to make sure that there are no gluten containing ingredients and there are more and more newer medications, and particularly when it comes to migraine because nausea and vomiting can be associated with it. Some of those medications are wafers, and so it’s not just a usual tablet or capsule. Of course the pharmacy is going to have all the listing of the inactive ingredients. You can check before they dispense it to you.
Vanessa Weisbrod:
That’s a really, really good point to always double check those. So what does follow-up care look like for a celiac patient whose primary symptoms was headaches? Do they see their neurologist or gastroenterologist regularly or both?
Dr Samuel Frank:
They’re going to need to see both, especially when they’re first diagnosed, if the neurologic issues are ongoing. And it kind of depends on the neurologic issue in general. If it’s migraine, I do check in with people just to make sure things stay the same. There is an evolution of migraines over someone’s lifetime, particularly when their lifestyle changes. There can be hormonal influences, particularly in women over the course of their lifetime. So I will check in with people. It doesn’t have to be very often, but just to make sure that their migraines are stable and remain under good control. And of course, good GI care is a key component of managing celiac disease.
Vanessa Weisbrod:
Absolutely. So where is the research right now on looking at the connection between celiac disease and headaches? What are the big questions that our community needs to address to better understand the relationship?
Dr Samuel Frank:
I specifically did a clinical trials research thinking about this question and looking at what’s out there, and there’s really not a whole lot of research. There are some observational studies to add to what we already know, and I think those are really important. But the question that you asked, what do we use to treat migraines when it’s related to celiac disease? Is it more effective? Is it less effective in terms of our usual medications? These are questions, as many others, that we don’t have the answer to. That we could if we had the neurologist, headache specialists, researchers that ask these questions and had people to volunteer for them. So I think that there are many questions from a neurologic perspective, many related to migraines that are out there that we don’t have an answer to and aren’t being investigated. So I would say from a patient community perspective, I would say advocate that celiac disease can have neurologic complications and we need to understand it better and look at whether the existing therapies work in people with celiac disease.
Vanessa Weisbrod:
And I hope people listening will write letters and ask for more research to happen on this because it’s such an important topic and it’s really an area where we see so many patients sharing their stories about, and so it would be good to learn more in this area. So this has been so helpful talking about headaches. When we come back, we’ll discuss other neurological issues related to celiac disease.
We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.
Sponsor:
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Vanessa Weisbrod:
Welcome back. So we’ve talked a lot about headaches, but I don’t want to forget that there are other neurological issues that can come with having celiac disease. One that we hear about frequently is brain fog. Can you talk to our listeners about brain fog and how it relates to celiac?
Dr Samuel Frank:
Yeah, I think you’ve heard so far that I have an interest beyond migraine when it comes to neurological involvement of celiac disease. So I’m glad that we’re talking about that in this segment. In terms of brain fog, as I said it’s a non-specific term. It doesn’t really pinpoint to anything specific related to a diagnosis or disease. It’s a common sense that people have and I think there’s even more awareness since it commonly is associated with COVID infections too. So I think the general population gets it more now than they ever have.
One thing I want to be clear is that brain fog is not the same thing as dementia. Those are two very different things. Dementia is significant cognitive issues that result in functional decline, and that is not what we’re talking about when it comes to brain fog. It is pretty common, but it really has not been well characterized neuropsychologically with detailed tests about what are people struggling with, what are their strengths when they have brain fog? So we don’t really understand that the underlying etiology. Is it due to poor attention? Is it because of poor sleep quality? Is it because of nutrient deficiencies? I think there are many questions around this, more questions than answers for this remarkably common symptom related to celiac disease.
Vanessa Weisbrod:
So does the brain fog clear up quickly after starting the gluten-free diet?
Dr Samuel Frank:
There’s very limited data on this. So let me start off with that. It is variable in terms of what patients report. Similar to other symptoms, again, I would not expect it within days. I would not expect this one to be even be weeks. This is going to be months. And there was one study that suggested it can take up to five years to completely clear. I think that’s a little on the long side. Usually people have a clearing long before that, but I think that that’s the exception rather than the rule in terms of years. So like many other aspects of autoimmune disease, assuming that it’s adequately treated, we’re talking on the order of months for most of it to clear.
Vanessa Weisbrod:
I love hearing stories from patients just like Vincent’s, where they just remember the day in which they woke up and felt clear for the first time. And it’s almost as though they describe it as a new beginning or the starting of their life being healthy.
Dr Samuel Frank:
Yeah, it’s true. And it can feel like it’s overnight like that because all of a sudden they’re much more aware. I do wonder if there’s some type of sensory change that makes that happen, that’s part of the brain fog too.
Vanessa Weisbrod:
Another research question to ask, right?
Dr Samuel Frank:
Completely.
Vanessa Weisbrod:
So let’s switch gears and talk about peripheral neuropathy. So this is commonly discussed in the celiac community. Can you tell our listeners what peripheral neuropathy is and what the symptoms a patient might experience?
Dr Samuel Frank:
Sure. Peripheral neuropathy is really referring to damage to the nerves in the arms and the legs. So peripheral stands for the peripheral nervous system versus the central nervous system. When we talk about the central nervous system, we’re talking about the brain and spinal cord. The peripheral nervous system is nerves that go out to the muscles and back from sensory structures. There’s also the autonomic nervous system, which is a third nervous system that can be impacted in celiac disease two. It’s often lumped together with peripheral neuropathy because it’s out in the limbs, but this is what controls automatic functions of the body like blood pressure and heart rate, sweating, the GI system, pupils, things like that. And so most often when people have peripheral neuropathy, they have numbness or tingling or pain or zinging sensation when we’re talking about the sensory nerves that are impacted and weakness or muscle twitching, when it’s the muscle types of nerves that are impacted.
Vanessa Weisbrod:
So do all of these symptoms with peripheral neuropathy resolve with the gluten-free diet or are other treatments necessary as well?
Dr Samuel Frank:
Most of the time it does resolve, and we do see that it has to be identified, which is the first part and often a challenge, but especially if it’s due to nutrient deficiencies, which there’s still debate if peripheral neuropathy is due to direct immune attack or if it’s secondary to nutrient deficiencies. But let’s say vitamin B12 is low, which is common in celiac disease, that is a clear cause of peripheral neuropathy. And so if we can replace the vitamin B12, we might improve the neuropathy. And I’ve seen a few patients with celiac disease that presented with B12 deficiency, their B12 was repleted, and then they show up years later with neuropathy and it’s because their B12 declined again because they weren’t absorbing it because of their celiac disease and that’s when they get diagnosed. And so that’s the type of story that we might hear.
Vanessa Weisbrod:
So several studies have shown that patients with epilepsy have an increased risk of developing celiac disease. Why is this?
Dr Samuel Frank:
Again, another opportunity to understand Celia disease and the impact on the brain? Because I have yet to hear a good explanation. There is one small family, mostly in southern Italy that has epilepsy and these strange calcium deposits in the brain. But that’s a very limited number of people that have that. I think most of the time it’s not clear exactly why there’s an increased risk of epilepsy in patients with untreated celiac disease. In people with known epilepsy. It makes a little bit more sense why they may have more seizures because they may not be absorbing their medications as well as they need to. And people with epilepsy can be sensitive to small changes in their medication levels. Electrolytes can have an impact on the surface of the brain and that can be altered in some patients with celiac disease. But I think that we don’t fully understand all the mechanisms that go into either nutrients, medications, the surface of the brain irritability, which is what is the underlying issue in epilepsy or other mechanisms. So again, another opportunity for observation and better understanding through research.
Vanessa Weisbrod:
So once they’re diagnosed with celiac disease, does the gluten-free diet help or stop or prevent the seizures from happening?
Dr Samuel Frank:
So let me answer that in two parts. One is there are all kinds of diets that are out there for patients with epilepsy and for the general population who does not have celiac disease, the gluten-free diet is not going to alter seizure frequency. There is a special diet that we sometimes use in children with severe epilepsy, the ketogenic diet, but we don’t recommend that just for patients with celiac disease who have epilepsy. So treating the celiac disease with a gluten-free diet so that the medications get absorbed, micronutrients are absorbed, electrolytes are easier to manage. I think all of that is really the underlying key to controlling what we know may impact epilepsy and celiac disease. I think that it’s never going to hurt to have an autoimmune disease less active when it comes to the brain, and I think that includes epilepsy, but I think there are other pathways that may improve epilepsy too.
Vanessa Weisbrod:
Great. So how does Parkinson’s disease, multiple sclerosis, Huntington’s disease or other progressive primary brain disorders, are any of these linked to celiac disease?
Dr Samuel Frank:
Now we’re getting into an area where I spent about 20 years of my life because I do Parkinson’s and Huntington’s disease and other primary progressive brain disorders, and we don’t know that there’s a link directly, that there isn’t, when we look at this. There are some cases of patients who have an Alzheimer’s like picture and when they have underlying celiac disease and when that gets treated, they’re in extreme… A few, very small number of cases. A few cases have shown dramatic improvement in their cognition. Now, these are likely people that have had celiac for many decades and may have something else happening like vitamin B12 deficiency which can also look like Alzheimer’s disease. So these cases are not well laid out. In general, we do not think that there is an association between celiac disease and progressive disorders. That being said, there is a clear component of GI issues in Parkinson’s disease, in Huntington’s disease, and tissue transglutaminase, which is one of the main markers in celiac disease, may actually be involved in other neurodegenerative diseases too, like ataxia and Huntington’s disease, and that’s being explored. But other than that, we don’t know of any direct connection between those.
Vanessa Weisbrod:
I know that you’re very protesting for celiac disease. Do you think that celiac screenings should be a part of neurological exams when there’s a question if a nutrient deficiency or other things could be related to celiac disease?
Dr Samuel Frank:
Well, my threshold for checking is exceedingly low. How’s that? I think if we have any symptom that is part of a disease that’s unexplained or more refractory or is just not well characterized, then those are the cases that I will often check for celiac disease. I think the residents laugh at me because I check it so often, but we find it, and I think that at least as a screening tool, we start off with just a blood test. We’re going to be getting blood for other things anyway, so we might as well. We also know specifically in patients with peripheral neuropathy that 10% of cases that are otherwise undiagnosed turn out to be Celtic disease. That’s a huge percentage. So I think it does depend on why someone’s coming to the neurologist, whether we should screen everyone or not. Neuropathy, 100%. Someone with Parkinson’s disease, there’s no connection that we know of. So unless there’s something atypical or unusual, I don’t usually. So it depends on the diagnosis and symptoms whether we should screen patients with neurologic issues for celiac disease.
Vanessa Weisbrod:
So let’s talk about gluten-free dietary compliance. How important is the strict gluten-free diet for patients with neurological complications of celiac disease and does it vary by condition?
Dr Samuel Frank:
Celiac disease only has a treatment of gluten-free diet. And so what I say to my patients with neurologic issues is you have control of reducing inflammation in your body by going on a gluten-free diet and sticking with it. And I think you get the idea that we don’t know everything about the brain, we don’t know everything about inflammation, but this is something that is within our control. And so I always should say highly recommend that people stick with the gluten-free diet to control something that they can. That they know will cause problems if they don’t stick to the gluten-free diet. So I do think it is really always important to adhere to if you have celiac disease.
Vanessa Weisbrod:
So as you heard from Vincent, and I know you’re well aware from the many patients that you treat, quality of life is severely impacted by all of these conditions. How do you address patient quality of life in your clinic?
Dr Samuel Frank:
I mean, function and quality of life are really what I focus on with all of my patients. And so I think every recommendation that we make, whether it’s related to dietary changes, medications that we start or stop it all should have the goal of improving quality of life and functioning. And patients with neurologic issues or complications of celiac disease are no exception. Also, with that goal, I’m always open to listening to patients and families and won’t discount anything because they’re the ones that have to live with the disease and the symptoms that they’re experiencing. And so until we have a cure, it’s worth exploring all avenues to see what we can do to reduce pain, improve quality of life, and maintain or improve functioning.
Vanessa Weisbrod:
Very well said. So thank you so much, Dr. Frank, for all of the wisdom that you shared today. Now let’s find out where Vincent is today.
Speaker 2:
Today Vincent is 26 years old and lives abroad coaching an international soccer team. He played division one soccer in college and led his team to compete in the national tournaments. Having celiac disease never phased him. He says that he felt relief knowing that by simply modifying his diet, he could be healthy and strong and perform at a competitive level. Vincent knows that he hated taking the medications for his headaches, so he found the gluten-free diet to be a much more satisfactory treatment. He admits it wasn’t always easy finding gluten-free options on the road, but credits his mom with being a terrific advocate for him along the way.
In his own words, “Having celiac disease has felt like no big deal. There were moments I missed things, like at our team’s spaghetti dinners, but pretty quickly my mom started hosting these events and just made the spaghetti gluten-free for everyone. My teammates were always supportive and felt like a part of my family. I think this had a lot to do with my mom pushing me to be open and honest about having celiac disease. This allowed my team to find easy ways to include me in gatherings. Today, I’m as strong as can be and hope that down the road I can help other young people with celiac disease realize they can be too.”
Vanessa Weisbrod:
Thanks for listening to today’s episode of Raising Celiac.
A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible.
A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode.
If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts.
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Join us next month when we discuss the relationship between celiac disease and mental health. Have a great month.
5/18 Episode 6: Crossroads of Dermatitis Herpetiformis and Celiac Disease
Expert Guests:
- Dr. Shadi Kourosh, board-certified dermatologist at Mass General Hospital and Assistant Professor of Dermatology at Harvard Medical School
- Janis Arnold, MSW, LICSW, Clinical Social Worker, Division of Gastroenterology, Hepatology and Nutrition, Boston Children’s Hospital
Learning objectives:
1.) Describe the relationship between celiac disease and dermatitis herpetiformis
2.) Explain the best practices for diagnosing celiac disease in patients with dermatitis herpetiformis
3.) Identify treatment options beyond the gluten-free diet for patients with a dual diagnosis of celiac disease and dermatitis herpetiformis
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Vanessa Weisbrod, the education director of the Celiac Program at Boston Children’s Hospital. At each month on the podcast, we will invite leading experts to dive into a condition related to Celiac and look at how it impacts a patient family, the latest research and offers suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA category one credits for physicians, 0.5 contact hours for nurses, 0.5, ACE, CE continuing education credits for social workers and 0.5 CEUs for registered dieticians.
To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Janis Arnold:
Molly had a wonderful childhood. Her family lived on a quiet cul-de-sac with lots of other families with kids. She spent her afternoons with friends, riding her bike, playing soccer and swimming on her town swim team. Health-wise, she had a very simple history, the annual common cold that went around her classroom and the occasional case of strep throat. Her mom would call her the “Remarkably healthy child.” Her younger brother had been diagnosed with celiac disease at the age of eight, so he was the one who typically got the attention with health stuff. It wasn’t until Molly’s first year of college that things started seeming a little bit off. Molly worked tirelessly in high school to become a competitive swimmer and was recruited to swim on her university swim team.
She dreamed of going to the Olympics one day and winning a medal for teen USA in the women’s 400-meter freestyle race. Shortly after she started practicing with her college swim team, she noticed herself itching every single day. At first, she thought it was from a different type of chlorine used in the training pool. She used over-the-counter anti-itch creams and moisturizers and pressed on for months until she just couldn’t take it anymore.
Vanessa Weisbrod:
Dermatitis herpetiformis is an intensely itchy skin condition caused by a reaction to gluten ingestion. Most patients with dermatitis herpetiformis, called DH for short also have celiac disease. With DH, extremely itchy bumps or blisters can appear on both sides of the body, most often on the forearms near the elbows, as well as on knees and buttocks and along the hairline. DH is diagnosed via a skin punch biopsy, but it often takes finding a physician who recognizes the condition to get the right tests done. A blood test and endoscopy for celiac disease may also be performed. Though the reliability of these tests in patients with DH is questionable.
Janis Arnold:
Now experiencing severe discomfort, Molly went to the university health center and was diagnosed with eczema. She was prescribed a cream to put on her skin each night. It helped a little bit, but she found herself losing focus in her classes and feeling as though she couldn’t keep up with the demands of competitive college swimming. Molly now had extremely itchy bumps and blisters lining in both elbows and knees, and along her hairline. It was starting to get embarrassing. She no longer wanted her body exposed at swim practice, and she felt self-conscious participating in the typical college social life with the rash inching down along her forehead. She knew she needed a doctor. So, she gave in and called her mom to ask for help. Up until now, she didn’t want to worry her parents with the rash, but it was time to get some help.
Molly’s mom sprang into action by calling their pediatrician to ask for a recommendation for a dermatologist near her university. Thankfully, she went to a school affiliated with a large teaching hospital and was able to get an appointment just a week later.
Vanessa Weisbrod:
DH bumps and blisters resemble herpes lesions, hence the name herpetiformis, but are not actually caused by the herpes virus. DH is caused by a sensitivity or intolerance to gluten, the protein found in wheat, rye and barley. When a patient with DH eats foods with gluten, it triggers an immune reaction causing IgA antibodies to be deposited in the skin. Oddly enough, DH patients sometimes have a normal intestinal biopsy and normal celiac blood test, but will still respond to a gluten-free diet. About 15% of people with celiac disease also have DH. Though this population tends to not experience the more classic gastrointestinal symptoms like diarrhea, vomiting and bloating. DH can appear at any age in life, though it’s most commonly diagnosed between the ages of 30 and 40 years old.
Janis Arnold:
Molly’s mom drove up to meet her for the appointment with the dermatologist. While the physician was taking down Molly’s medical history, she asked about any conditions her family may have, including gastrointestinal diseases. When she mentioned that her brother had celiac disease, a light bulb went on for the dermatologist and things started moving very quickly. That same day, she had a skin biopsy as well as blood work, and a few days later her doctor called to confirm the suspected diagnosis of dermatitis herpetiformis, and celiac disease. Both the skin biopsy and tissue transglutaminase antibody tests were positive.
Vanessa Weisbrod:
The treatment for DH and celiac disease is the same, a strict lifelong gluten-free diet. However, for patients with severe cases of DH, the drug Dapsone may be used to suppress the skin response and quickly improve symptoms. It can work in just a few days.
Janis Arnold:
Molly’s rash was quite severe, so she started Dapsone and began the journey of converting to a gluten-free diet. She started feeling better quite quickly and within about two weeks felt like she was getting back to her normal routine. The Dapsone rapidly helped her rash disappear, but getting onto a strict gluten-free diet was a struggle. She was 18 years old, living in a shared dorm room, trying to came up with a competitive sports schedule and struggled to find the right resources on campus to get gluten-free food. Her younger brother had celiac disease, but there was an eight-year age gap between them. So by the time he was on a gluten-free diet, it was almost time for Molly to head off to college. She admits she barely paid attention to the gluten-free diet for her little brother because her mom just took care of it. Molly did her best with her new diagnosis, but her gluten-free diet was far from free of all gluten.
Vanessa Weisbrod:
Oftentimes, a positive skin biopsy and a positive antibody test for celiac disease is where the medical diagnosis journey ends for a patient living with both DH and celiac. Because the diagnosis is clear and an endoscopy isn’t always deemed necessary, sometimes these patients are not referred to see a gastroenterologist who specializes in celiac disease. This means the patients may not get a referral to a skilled dietician and other valuable resources for navigating the gluten-free diet. This is exactly what happened to Molly. So how does a patient with celiac disease and DH manage the gluten-free diet at home, at school and on the go? Does touching gluten cause their rash to come back? If they don’t have GI symptoms, how strict of a gluten-free diet do they need to be on? Does it make a difference if they have a small bowel biopsy or not?
We’ll discuss this and more on today’s episode of Raising Celiac. Today we talked about celiac disease and dermatitis herpetiformis with Dr. Shadi Kourosh, a board certified dermatologist at Mass General Hospital and assistant professor of dermatology at Harvard Medical School. Then we’ll be joined by Janice Arnold, a clinical social worker at Boston Children’s Hospital to talk about setting up resources for managing the gluten-free diet in colleges. Welcome you both to raising Celiac. So Dr. Kourosh, let’s start with you. The majority of patients with DH also have celiac disease. Is DH a manifestation of celiac or its own condition?
Dr. Shadi Kourosh:
I think it’s a good idea to think of dermatitis herpetiformis or DH as a manifestation of celiac because there’s really a relationship between the gut and the skin as we see in a variety of conditions. And some people have celiac as we know, and they may not have any skin manifestations, but pretty much everyone that has dermatitis herpetiformis has gluten sensitivity.
Vanessa Weisbrod:
Absolutely, so why does some patients with DH have negative tTg-IgA antibody tests and normal intestinal biopsies?
Dr. Shadi Kourosh:
That’s a great question, Vanessa, and it’s a question that patients ask all the time and it’s a very good one, and the answer is that antibodies can wax and wane in a person’s body. So it’s really a question of perfect timing to get the testing at that perfect snapshot in time when the antibodies are triggered. So for example, if a person has been on a gluten-free diet for a long period of time, you’re probably going to have a hard time finding any antibodies. It really has to be triggered by gluten or something like that in the system for a person to have a good chance of catching it on an antibody test.
Vanessa Weisbrod:
Do we have any understanding of what comes first, celiac disease or DH?
Dr. Shadi Kourosh:
Well, because we think of DH really on a spectrum of celiac disease, I think it’s helpful to think of everybody that has DH as having this underlying gluten sensitivity, which we find that people may have for years sometimes before they’re diagnosed. It could be that it hasn’t been as severe. So a lot of people we find fly under the radar with their condition for years just feeling less healthy when they have gluten but not having really obvious symptoms. And then, there comes a point in time where the symptoms or whether that’s skin manifestations or symptoms that they’re having in their gut become more obvious, which prompts people to go and see the doctor and hopefully then, get diagnosed.
Vanessa Weisbrod:
How does an autoimmune disease that causes damage to the small intestine show up on your skin?
Dr. Shadi Kourosh:
Well, first, I will say that dermatitis herpetiformis or DH is not the only skin condition that is triggered by factors in the gut. And I think that we are learning more and more about that gut skin relationship, but in the case of DH, I’ll just explain at a very sort of brief high level that certain antibodies are made in the body by the immune system when a person is exposed to gluten who has this sensitivity, and then those antibodies circulate in the blood, and then, there are little tiny blood vessels in the skin where sometimes those antibodies deposit in the skin or they kind of get stuck from those little tiny blood vessels that are depositing them in the skin.
Then, those antibodies cause an immune reaction when they get deposited in the skin, which manifests as the skin signs of dermatitis herpetiformis, which for anyone that’s seen it in real life or seen photos of it, looks like little tiny bumps on the elbows, knees, back, sometimes the buttock. We call this in medicine, the extensor surfaces of the skin, so the elbow side of the arms or on the knees, the part of the arm or leg that extends the limb rather than flexes it. So there are certain skin conditions that present on the flexor surface of the skin, but dermatitis herpetiformis classically presents on the other side, on the extensor surface of the skin. So knees, elbows, back, sometimes buttock and there are itchy bumps and in some people, they can be very itchy. So we really have to give them medicine to help control their inflammation and itching of their skin when that happens.
Vanessa Weisbrod:
So tell us about the punch biopsy used to diagnose DH. What are the best practices for selecting the spot to biopsy?
Dr. Shadi Kourosh:
Yeah, I mean that’s a great question and that can be a challenge to really get it perfect in real life because as I mentioned, this is a condition, dermatitis herpetiformis that waxes and wanes, right? So it waxes and wanes on the skin as it is waxing and waning sometimes in the blood. Now, sometimes it stays on the skin much longer. So sometimes there’s an initial trigger in the blood than it stays on the skin much longer, but the trouble is the antibodies can kind of wax and wane, and so it’s important if a person has skin findings that they are concerned might be dermatitis herpetiformis or DH, to go to the doctor promptly, to go to the dermatologist promptly and have a biopsy, because our best chance of really getting a slam dunk diagnosis is to biopsy the skin lesions when they’re fresh, as soon as possible.
You want to find the newest spots if possible because those are the more likely ones to have the classic signs in the biopsy of the certain pattern of inflammation and antibodies that would help us make the diagnosis. Generally, two small punch biopsies, so these are little four millimeter circular blades that take a little hole punch, size of a hole punch, piece of skin for the biopsy. So this is … honestly, it’s smaller than the size of a pencil eraser each one. So it’s not a lot of skin, but it’s important that we get a good sample and that we actually get two. The reason is because one of these samples is set for normal standard pathology where the pathologist will just look at the pattern of inflammation, immune cells, things like that under the skin.
Then, the second one is sent for something called immunofluorescence, where there are special stains that are done for the specific antibodies of DH. So really having both of those biopsies can be really important in getting the diagnosis right.
Vanessa Weisbrod:
Great. So Can you talk to our listeners about the treatment options for DH? Is the gluten-free diet required or can it be treated with medication alone?
Dr. Shadi Kourosh:
Well, I would say the first intervention and really the gold standard is a gluten-free diet, because we do have medications and we can give people medications, but if a person is still exposing their body to the trigger that causes this problem, we’re really just chasing our tail and it’s really hard to make people better without the elimination of gluten. From my friends who are GI doctors, who are really experts on celiac disease, I’ve learned a lot about really doing a gluten-free diet successfully, and it can be very challenging. I mean, there are things that were really news to me that contain gluten, like certain medications, certain vitamins, supplements have gluten in them. So things that I didn’t necessarily know, things that contain gluten, but the idea is doing it well, is actually pretty difficult.
I’ve learned about websites and resources that I share with my patients, like there is a website called www.glutenfreedrugs.com. There’s another one that’s a database to search for ingredients that is medlineplus.gov/druginformation.html. Also, the National Psoriasis Foundation can be really helpful because there is a variant of psoriasis … as I mentioned, there’s other conditions that have a gut skin connection and there’s a variant of psoriasis, another skin condition that is actually gluten sensitive. So there is a percentage of people that have this other skin condition psoriasis that actually get better if they follow a gluten-free diet. So we’re learning a lot more about this in dermatology, but I really think that the first step and the first pillar of treatment is avoidance of triggers.
I mean, and this is an important concept for many conditions, that to first identify the causes and do our best to avoid them. Then, once we really understand that and commit ourselves to that, then we see how severe is a person’s condition once they’ve eliminated gluten. Some folks have a really severe case and even after following a gluten-free diet as best as they can, they still require medicine. There are a variety of medicines, the most classic and traditional treatment for dermatitis herpetiformis that has been around for decades and can be very effective is a medication called Dapsone. That is an antibiotic, as I mentioned, that’s been around for many years and it can be very helpful and effective. However, a person needs to get lab tests when they’re on Dapsone because it can have certain possible side effects in the body.
So it’s really important to establish care with a doctor such as a dermatologist, if a person has this condition and they need medication therapy because they may need lab monitoring for certain medicines, and Dapsone is one of those medicines that requires regular checkups and lab monitoring. Then, there’s also topical therapies for people that are less severe, such as topical steroids, cortisone, but also stronger versions of that that are prescription strength, topical steroids. Those can really help with itching and the skin lesions. Then, there are other systemic therapies as well, but those would really need to be discussed in consultation with a specialist.
Vanessa Weisbrod:
So if they’re following a gluten-free diet strictly, about how long would it take before they could expect to see their rashes getting better?
Dr. Shadi Kourosh:
I found that to be really variable between patients in real life, in terms of once they have a flare because they maybe were exposed to gluten, how long it takes, whether it takes weeks or over a month, it really depends on how severe of a case the person has themselves and also, how quickly medicine is started. So if they have a good medication regimen, systemic or even topical medicines like topical steroids, they can help that flare get better much faster. I also think that if a person’s been following a really good regimen of eliminating gluten from all these different aspects of their life, which as we discussed could be tricky because sometimes it’s hidden in things like medicines or vitamin supplements or soy sauce or things that we might not expect, but if a person has done a really good job of eliminating the gluten trigger from all these different aspects of their environment, I find that they tend to have less flares overall.
Vanessa Weisbrod:
So we’re talking about flares. Will every single exposure with gluten lead to a flare of DH, like somebody who has GI symptoms might vomit or have diarrhea after being exposed to gluten?
Dr. Shadi Kourosh:
Again, Vanessa, I feel like this is … in my experience, this has been really individual between patients. There are some people that they might be exposed to a little bit of gluten and nothing bad may happen, and it may take a larger exposure to actually trigger a flare in them, and there are some people that even a small amount can cause them to have symptoms, whether that’s gut symptoms or skin symptoms. So I think that for each individual person that’s dealing with this condition, it’s really about learning their body and what it can tolerate.
Vanessa Weisbrod:
Is touching gluten a problem for patients with DH?
Dr. Shadi Kourosh:
That’s a really good question, and I think that there is research that’s being done into that, but I’m not sure that it’s a trigger for everyone. Certainly, there is a relationship between gut allergies and skin allergies, so I wouldn’t be surprised if there are some people that might need to be sensitive to that, and I’ve heard of certain skincare products having to be gluten-free because of that.
Vanessa Weisbrod:
What is the proper routine medical care for a patient with celiac disease and DH? Should they regularly see a dermatologist, gastroenterologist and a dietician or just one of them?
Dr. Shadi Kourosh:
I think that the most important doctor for a patient with celiac disease is their GI doctor. And I’m fortunate here at Massachusetts General Hospital to have really wonderful colleagues in the gastroenterology department who are experts in celiac disease and we work together. Some of them are experts in other gut conditions, as I mentioned, conditions of the intestines, that also cause skin problems. So I think that that relationship of teamwork between these specialists is very important. I think that the first step is really establishing care with a gastroenterologist because that person is going to be really important in making the diagnosis, which as we discussed earlier, can be tricky because the antibodies go up and down, they wax and wane in the body.
So they may not always be present. So I’ve seen people with celiac disease actually take months or years to really get an official diagnosis because they’ve established care. Sometimes it takes some time to find the right doctor and then, even when they establish care with the right doctor, it can take time for all the timing to line up for the test to be done at the right time when we can find the antibodies. I think that the gastroenterologist and really finding one who is an expert, like we have a wonderful one at Massachusetts General Hospital. Her name is Dr. Maureen Leonard and I have shared patients with her and learned a lot from her, she’s a real expert. She has helped a lot of people get diagnosed and a lot of education around this condition for patients and even for her colleagues like me. So I think that that relationship is really, really important, really the first step.
Then oftentimes, these gastroenterologists, when people come to them and figure out their diagnosis and realize that they have celiac disease, then if they have skin symptoms, then they usually establish care with a dermatologist. So that’s often the way it goes, but in some cases it has gone in the opposite direction where a patient has come in to a dermatology clinic like mine with a rash and the person may not have any idea what’s causing their rash. They just say, “I have this itchy rash often on the elbows, knees or back.” And the dermatologist recognizes this pattern and says, “Well, there’s something that this could be, and it could be related to gluten sensitivity. Let’s do a biopsy.” And then sometimes the biopsy is what helps make the diagnosis and then, the dermatologist refers the patient to a gastroenterologist, a GI doctor.
So it definitely has gone both ways, but the thing is not everybody that has celiac disease has skin findings. So that can be tricky too, and this is why a lot of these folks sometimes go for years with just these non-specific or kind of vague symptoms in their intestines, like discomfort or difficulty with digestion, and they may not know what they have. So I really encourage people that if they are having these gut symptoms and they’re not sure what’s wrong, to go ahead and see a gastroenterologist because these specialists can really be game changers for a lot of people in figuring out what’s wrong.
Vanessa Weisbrod:
Absolutely, and I’m really happy to hear about your strong feelings on this. I think that a lot of times patients don’t get that referral, and that was what happened to our patient that we talked about in our story today. Molly didn’t get to the gastroenterologist or to see the dietician, and I think that really led to her struggling to get situated with the gluten-free diet. So how common is it do you think for dermatologists to make that referral to the gastroenterologist or subsequently to a dietician for help with the gluten-free diet?
Dr. Shadi Kourosh:
Gosh. Well, I do it for every single person. If they don’t already have that care, because as I mentioned, I think the gastroenterologist is really, really critical to help manage that disease because I really think that they’re the quarterback in managing the disease overall. I mean, I think dermatologists, we are often helpful to other specialties because let’s say the diseases and conditions of many organ systems actually manifest on the skin. So sometimes people will come in with a rash and a dermatologist will say, “This is actually a manifestation of something that’s going on in your gut or something that’s going on in your liver or your kidneys or your blood.” So dermatologists are often helpful in making that diagnosis, but because I think that this fundamentally comes from an internal condition, I think that GI doctor is really critical.
I think the dietician is a wonderful addition because as we discussed earlier, it’s really hard to do a great job at following a gluten-free diet. So even I as a specialist that’s made the diagnosis of the disease have really been surprised and had these eye-opening moments about all the places where gluten is hidden in foods and medicines and supplements. So I think having an expert like a dietician really sits someone down at the beginning and educate them, could be so helpful in how they manage their disease.
Vanessa Weisbrod:
Absolutely, so do you have opinions on whether or not these patients with celiac and DH should get the small intestine biopsy if they’ve already had a positive tTg antibody and the positive skin punch biopsy?
Dr. Shadi Kourosh:
I think that’s really a question for the GI doctor. This is where, as a dermatologist, I really trust and rely on my good colleagues in an interdisciplinary team of care. So I think it would be great to ask a GI doctor that question because to me, if a person is diagnosed, then from my standpoint, I’ve helped them sort of reach an answer and then, I just focus on managing their skin and then I send them to the GI doctor for sorting out everything else that’s going on the inside of their body.
Vanessa Weisbrod:
So we know that there’s a genetic component to celiac disease and then, it can be passed through families. Is there a risk of DH being passed from a parent to a child?
Dr. Shadi Kourosh:
Yes. I mean, it’s not necessarily a very clear prediction of whether it will be or not. It’s not one of these things where if one of your parents has it, then you’ll definitely have it as well. We know that there are certain genes as you mentioned, that are associated with it, and it’s estimated that about 10 to 15% of people that have dermatitis herpetiformis have a first degree relative that has it as well. There’s certain genes where it’s estimated that like 90% of people that have celiac disease have a certain gene, which is the HLA DQ2 and then, there’s another one that’s DQ8 that’s less common. So there are genes that have been identified that are predictive. It has been seen in some people that if they have a first degree relative, but that’s not 100% prediction. So what we generally counsel people is if they have it or if someone in their family, a first degree relative has it, then there’s a chance that they’ll have it.
Then, what that means effectively is that they should just be on the lookout and they should monitor themselves for, if they’re exposed to gluten, if they have symptoms in their gut or in their skin. If that happens, then they should be checked, but it’s definitely not a given. So I mean, some people may have a first degree relative and go on with their life and have nothing happen and be totally fine. So I think it’s more of an indicator if that family history or that genetics is there to just keep a closer watch on a person.
Vanessa Weisbrod:
So as we heard from our patient, Molly, her quality of life in college was severely impacted by having the DH rush. She was so concerned about her appearance and felt very self-conscious. How do you address these issues with patients in your clinic?
Dr. Shadi Kourosh:
I think that’s a really great question, and I think that that’s where a multidisciplinary team is really important, like here where I practice at Massachusetts General Hospital, I have wonderful colleagues in the psychiatry department and in some cases, we’ve even written books for patients that have skin diseases to live successfully with their skin disease, and we talk about that mind-body balance and we talk about the psychological and mental health aspects of living with the skin disease, and I think that that’s super important. So making sure that people feel comfortable, seeking out mental health services, emotional support of various kinds, and for me as a doctor, working to destigmatize that and normalize that and help people understand that it’s perfectly normal to have a therapist and it can be a really great and life-changing aspect of someone’s life to have a therapist.
So I try to really normalize that and encourage that because I think that there are people also in the psychiatry and psychology community that are experts in this, in helping people live with certain chronic conditions, and I think they can be great.
Vanessa Weisbrod:
Well, thank you Dr. Kourosh so much for all of this wonderful information. We’re going to take a quick break and when we come back, we’ll have our Boston Children’s Hospital social worker, Janis Arnold, here to talk to us about setting up accommodations for the gluten-free diet in college.
Speaker 4:
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Vanessa Weisbrod:
Welcome back and welcome Janis to the podcast. You might recognize Janice’s voice as she is our regular voice of the patient, but I’m so happy to have you here this month to share your expertise on navigating college with celiac disease. Welcome, Janis.
Janis Arnold:
Thank you so much. It’s a pleasure to be here in this capacity as well.
Vanessa Weisbrod:
So Molly found adopting to the gluten-free diet to be very challenging in the college setting. In a perfect world, what resources would’ve been helpful to her at the point of diagnosis?
Janis Arnold:
It’s a great question. First and foremost, to figure out how you’re going to navigate life with a gluten-free diagnosis, you need to know what is gluten-free and how to read labels and how to navigate shopping. So I think an appointment with a nutritionist who specializes in celiac disease would’ve been the first most helpful resource to Molly, then she could figure out what additional resources she needed, where she was getting kind of tricked up when going grocery shopping, what replacement she needed to find for foods that were already beloved. In addition, having access to other college-aged youth who are navigating this kind of young adulthood transition and have been managing celiac for quite some time would’ve been a wonderful mutual aid connection so that she didn’t feel as lost and lonely
Vanessa Weisbrod:
For sure. So at Boston Children’s Hospital, how do you help patients heading off to college adapt to the gluten-free diet? How do they get accommodations at their university?
Janis Arnold:
It’s really a two-pronged approach. The first bucket of preparation we want to do are the logistical pragmatic preparations, which I’ll get to regarding advocating at the university. The second kind of bucket of preparations are really the emotional social ones, anticipating social scenarios right down to maybe even role playing, what you would do in a social scenario that maybe you would otherwise, feel excluded from or would want to make sure you have a safe option from. In terms of anticipating transition to the university and getting the accommodations necessary, it always starts with the Office of Disability Services, and this is often called something different on different campuses, maybe the Dean of Students with Disabilities or Student Access Center. Essentially, this is where students can go to make sure to put in writing and on file, setting the precedent that celiac disease qualifies them for accommodations.
We know that under the federal law, celiac is a chronic health impairment that impacts a major life activity and is going to last more than 12 months. So by virtue of those criteria, students even at the collegiate level are entitled to accommodations. Then, what it comes down to is anticipating the different categories of accommodations. We want to think about the academic protections, the things that help protect our students academically so that they’re not penalized for anything that’s beyond their control and accidental ingestion, unknown cross-contamination that leads to symptoms. Then, the other category of accommodations are those environmental accommodations. The things that really help our college-aged students move about a campus and live comfortably and have access to what they need.
That’s where the accommodations for residential life and dorm living come in, but it’s much harder to get those accommodations if someone hasn’t already gone on file to establish eligibility through their Office of Disability Services.
Vanessa Weisbrod:
So what happens if the college says that gluten-free options just aren’t available in the dining halls? Are they obligated to accommodate?
Janis Arnold:
It’s a great question and unfortunately, we do hear that. We’re hearing it less and less as time goes on and there’s increased awareness, but colleges are indeed obligated to accommodate. They have to make available a nutritious and nutritionally complete meal that is gluten-free available for purchase for any student who has celiac disease. It can get tricky because what colleges don’t have to do is make that meal delicious or appetizing. So sometimes it does take a lot of conversation and problem-solving so that we can make sure our students have access to what they need and what we know that they’ll eat to stay nourished. So if a college says that they don’t have access to these products, then that’s when we know we need to have meetings set up with head of dining services and food services individual managers for the individual dining halls that we anticipate our student might eat at, right down to the dietician and nutritionist consultant that the university surely has on staff.
Vanessa Weisbrod:
I know you’ve helped many celiac patients with housing requests for kitchens. Talk to our listeners about how to request a room with a kitchen or other potential items like a personal refrigerator or microwave.
Janis Arnold:
This is a really common request and it can make all the difference in our patients’ lives at college, being able to have access to safe foods and navigate their academics and feel healthy while doing it. The first step is getting documentation from a GI provider that really lays out the facts of celiac disease. A lot of universities don’t understand what it is. They sometimes think it’s very similar to an allergy. They don’t understand the delayed reaction, the cumulative reaction, the invisibility of it. So the letters that really document what this is and how strict lifelong exclusion is truly the only treatment for this disease, and also, a letter that outlines what the consequences are medically, if this is not followed, then that sets the platform to be able to advocate for why access to standard kitchen appliances is critical and crucial for our students who might need to eat at odd hours of the day or night based on their own schedule or study groups.
Why our students need the ability to safely prepare and store foods that they are positive, are free from cross-contamination and cross contact if they’ve continued to try dining hall food and despite these selections continue to get sick or find that there’s just not foods that they enjoy and are likely to eat at the dining halls at the given times they’re there.
Vanessa Weisbrod:
Sometimes we hear from patients that their university says they have gluten-free food options available, but they keep getting sick from likely cross contact. How do you help patient families navigate these situations?
Janis Arnold:
That’s a great question. We often find that university staff are very invested and interested and want to learn and just haven’t figured out how to execute this appropriately and consistently yet. In those situations, we try to remind everyone to have an open mind and open heart, assume the best intentions in the food service staff, and it goes back to having educational sessions with the folks who are actually doing the food prep. Early on, I mentioned that sometimes we’re setting up meetings with the directors or managers of the dining halls, and if this situation were to keep happening, this inadvertent cross contact, despite efforts to serve gluten-free food, it would tell us that the food preparation is not happening consistently and safely.
So, it means that we need to bring in the folks who are actually doing the food prep at the times the dining halls are open or food is being packaged, and make sure that they’re getting education from a consultant on safe preparation.
Vanessa Weisbrod:
So let’s talk for a second about risky behaviors. We know that sometimes there can be peer pressure to have just a little bit of gluten or just have it this once. How do you help college-aged students handle these types of situations?
Janis Arnold:
This is a great question because it is so much integrated into the very developmental stage that our patients are managing, and it’s hard because aside from just peer pressure, there’s actual desire to participate in things that feel like they’re the hallmarks of kind of a college experience. So it comes back as all things do, to the facts, making sure that we’re helping young adults understand the risks of all of the risk taking behavior, whether it’s intentional ingestion or ingesting something that maybe is harmful for many other reasons than just the gluten containing product like alcohol. So we want to help students and young adults think through what the consequences could be. Usually, the aim of participating is to be a part of things, to be connected.
So helping students realize that should they get sick, they’re actually going to be more disconnected than had they just withheld their temptations from participating the prior night because they’re likely to get quite ill, miss class, not be able to go out on subsequent nights with their friends. So it comes down to kind of a cost benefit so that young adults can feel like there’s alternatives so that they can participate and stay connected, but make safe choices while they’re doing it.
Vanessa Weisbrod:
Starting a gluten-free diet can be challenging at any point in life, but even more challenging when it’s the same time as adapting to college life. How do you counsel patients like Molly on ways to make the transition easier when they feel it’s an impossible hurdle to overcome?
Janis Arnold:
I think the first approach is to really acknowledge and honor that it does feel impossible to these young adults that they are going through a tremendous life stage pivot, both developmentally moving to college or attending college and being on a campus and meeting new folks and a tremendous life stage pivot to overhaul their diet and lifestyle to be entirely gluten-free. So I always want to make sure we don’t leapfrog over that because there’s some real work to be done, just acknowledging and accepting that and kind of making peace with the reality of what’s going to come. Beyond that, it really comes down to anticipating, educating and communicating. I find that if those three actions are done, that most anything can be accomplished. We also want to help our young adults understand that the word transition exists for a reason. It is a transition because things can be incremental, there can be baby steps.
You just start right where you are right now and the next step will come. That also helps us be able to look at where there’s kind of like minor difficulties and incremental changes that are proving more painful, more socially painful, more emotionally painful, and then, we can kind of fine tune how to cope with those specifically. I find that at this age it’s a little bit harder than maybe our patients whose parents are managing a household at age eight and doing an entire kitchen overhaul. At this age, we’re really saying it’s almost a harm reduction model. Any next best decision you can make is going to make you more healthy and feel better, and we’ll go from there.
Vanessa Weisbrod:
Well, this was so helpful, Janis. Thank you so much for all of these wise tips and to Dr. Kourosh for all the wisdom that you both shared today. So now, let’s switch gears and find out where Molly is today.
Janis Arnold:
Today, Molly is 29 years old and thriving, living with celiac disease and DH. It took her some time to get to this point, and she still refers to her first two years of college as the most challenging of her life. It wasn’t until she was randomly seated next to a nutritionist also living with celiac disease on an airplane that she realized how many resources were available to patients with celiac disease. This was two years post-diagnosis. When she returned to her college dorm, she called her mom, who once again jumped into action and set up an appointment with a dietician near her university. That first meeting completely changed her life. Molly’s skin lesions have long been under control, and she is in the throes of planning her wedding.
On the big day, she plans to wear a strapless dress that she feels completely comfortable in showing her bare arms. Molly didn’t make it to the Summer Olympics, but she currently coaches a youth swim team in her town where the kids are her pride and joy. In her own words, “My biggest mistake in my health journey was not relying more on my parents and family for support when I started getting symptoms. When I went to college, I thought I had to do it all on my own and just figure it out, but what I really needed was help getting the right doctors and the right resources to get myself on the right path to being a normal college kid.”
Vanessa Weisbrod:
Thanks for listening to today’s episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible, a reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe, wherever you get your podcasts. For more information, check us out on social at @bostonchildrensceliac on TikTok, @ChildrensCeliac on Twitter or @celiackidsconnection on Instagram. Join us next month when we discuss the relationship between celiac disease and mental health. Have a great month.
6/15 Episode 7: Impact of Chronic Disease on Quality of Life
- Dr. Ritu Verma, Chief, Section of Pediatric Gastroenterology, Hepatology, and Nutrition Medical Director, Celiac Disease Center
- Jessica Lebovits, RD, CDN, CNSC, Clinical Dietitian, Center for Celiac Disease at Columbia University
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the Education Director of the Celiac program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient’s family, the latest research, and offer suggestions for health providers to manage these complex cases.
Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA Category 1 Credits for physicians, 0.5 contact hours for nurses, 0.5 ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Speaker 2:
Asher was a super chubby baby. His parents joked that he looked like the Pillsbury Doughboy at just four months old. Everyone who held him commented on how big and heavy he was for a baby, but instantly fell in love with his very rosy, kissable cheeks. Asher stayed plump until around the age of five, when he very quickly thinned out. He grew a little bit, but went from being in the 99th percentile for height and weight to below the 20th percentile for both in just one year. The sudden drop raised a red flag for his pediatrician. So at his annual physical, the doctor recommended running some lab work to investigate what may have caused the dramatic drop on the growth chart. The testing involved an antibody test for celiac disease.
Vanessa Weisbrod:
Many children with celiac disease are first screened for this autoimmune condition because they have growth and weight issues. It’s typically picked up at an annual well child visit with their pediatrician. Poor growth is one of the most common symptoms of celiac disease seen in children. Pediatricians can easily screen for celiac by ordering the tissue transglutaminase IgA antibody test, plus a total IgA, in order to ensure that the patient generates enough of this antibody to render the celiac disease test accurate. All blood testing for celiac requires that the patient be on a gluten containing diet, to be accurate.
Speaker 2:
Three days after the physical, Asher’s pediatrician got the report back and the celiac antibody test was more than 10 times the upper limit of normal. He provided Asher’s parents with a referral to a gastroenterologist at their local children’s hospital to get a small bowel biopsy. Two weeks later, Asher saw the gastroenterologist, and one week later he had a positive biopsy confirming the diagnosis. His family immediately adopted a strict gluten-free diet in their home, and within a year, Asher was back on a normal growth trajectory. Life seemed to be going well.
Vanessa Weisbrod:
The good news is that once the child is on a strict gluten-free diet and the intestine heals, they typically catch up on growth and weight. It can happen very quickly for some children, but for others, it can take longer than two years to see substantial growth.
Children with celiac should have regular visits with a gastroenterologist and dietician who specialize in celiac disease and the gluten-free diet. They will monitor for weight gain and growth, screen for coexisting autoimmune conditions, and check for vitamin and nutrient deficiencies. Follow-up visits with the gastroenterologist are recommended at two months, six months, and 12 months after diagnosis, and then annually thereafter. It’s important to continue these follow-up visits as life celiac disease changes with different life stages and development.
Speaker 2:
Things felt pretty okay on the gluten-free diet for Asher until he got to high school and he found himself longing to go out to eat with friends at local hangout spots, and attend normal teenage activities like prom, sleepaway camp, and class trips. But his parents were very worried that attending any of these types of events may lead to a gluten exposure, so they typically didn’t allow him to go unless they brought food for him from home.
In the 11 years since his celiac diagnosis, he had accidentally been exposed to gluten four times, and with each exposure, his parents got stricter about what they would allow him to do outside of the home. There were only two restaurants he was allowed to eat at, and he was never allowed to eat food at a friend’s house. He missed his middle school outdoor education trip and a class trip to Washington DC because his parents couldn’t miss work to chaperone, and they didn’t trust the food service provider to get the gluten-free diet right. Asher missed the dinner with his friends before his junior prom. He ate dinner at home while his date ate with the rest of their group at a local restaurant. The restaurant had a gluten-free menu, but not a dedicated gluten-free kitchen, so he wasn’t allowed to go.
Asher hated his social life and always felt left out. Just before his senior year in high school, he decided he was old enough to take matters into his own hands. He started telling his parents he was staying after school for a study group, when in fact he was going to a local coffee shop with his friends. He drank iced coffee, and occasionally ate a gluten-containing pastry. He didn’t feel sick after the first time, so he did it on occasion.
Vanessa Weisbrod:
It’s well established that some children and teens with celiac disease do not follow a strict gluten-free diet. Most often, they stray when with their peers. Intentional gluten exposures can happen at lunchtime, class celebrations, group trips, and social activities. We also know that sometimes teens with celiac disease are excluded from everyday life activities, and that those who feel less integrated into their social circles are less likely to succeed on the gluten-free diet. Non-adherence can lead to negative short and long-term health consequences.
Speaker 2:
Asher’s cheating on his gluten-free diet went on for months, until his father happened to walk into the coffee shop while he was there and saw him eating the chocolate-filled croissant. For the rest of high school, his parents drove him to and from school every day.
Asher graduated high school with few close friends and feeling angry towards his parents. He couldn’t wait to leave for college, though he was already resentful that his parents played a large role in selecting the college that he would attend. They pushed him to go with his third choice college because they felt comfortable with the food service provider having a dedicated gluten-free zone in the dining hall. Asher knew deep down that his relationship with his parents and with the gluten-free diet weren’t good, but he had no idea how to fix the complicated mess he lived with every single day.
Vanessa Weisbrod:
Living with a chronic disease is extremely challenging, especially when every single bite of food every single day of your life requires thought and care. Hypervigilance in relation to celiac is when someone is severely afraid of gluten exposure, and may go beyond the necessary measures to prevent contact with gluten. It can lead to extreme anxiety, depression, and social isolation. Sometimes the patient with celiac disease exhibit signs of hypervigilance, but for a child, their parent may act hypervigilantly in how they manage their child’s condition. It can be difficult to find the right balance of avoiding gluten while still living a full life.
So how does a child with celiac disease navigate the complexities of being a teenager, going to college, dating, and progressing through life in a way that feels normal? How should parents approach the gluten-free diet with their child in a way that doesn’t lead to hypervigilance? What do researchers know about the impact of chronic disease on quality of life, and how can clinicians help their patients improve it? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about celiac disease and quality of life with Dr. Ritu Verma from the University of Chicago Celiac Disease Center. Dr. Verma is the chief of the section of pediatric gastroenterology, hepatology, and nutrition at the University of Chicago Comer Children’s Hospital, and the Medical Director of the Celiac Disease Center. She is also the President of the Society for the Study of Celiac Disease. Then we’ll talk about the impact of celiac disease on dating and relationships with Jessica Lebovits, a dietician at the Celiac Center of Columbia University. Welcome, you both, to Raising Celiac.
Dr. Ritu Verma:
Thank you, Vanessa. What an honor. Thank you.
Vanessa Weisbrod:
Dr. Verma, I am so happy to have you here today, because you truly get it. Not only are you one of the leading experts in the world on celiac disease, but you’re also a mom to two young adults with celiac. I can’t think of anyone who gets it more than you do. So let’s dive right in. For our listeners who aren’t familiar with the term quality of life, can you tell them what this means?
Dr. Ritu Verma:
Absolutely. And I think we use the term “quality of life” in many different ways, and I think perhaps what we can talk about is it’s truly, it’s just a perceived quality of an individual’s daily life. So in the world of celiac disease, anything that affects you on a daily level is affecting your quality of life, and I also think it’s different for different people. For some people, a particular thing is more important, and that’s important, for us to think about that as affecting their quality of life.
Vanessa Weisbrod:
How does celiac disease impact quality of life? Let’s talk about it from the patient perspective first.
Dr. Ritu Verma:
So if we sit back and think about food, food is the center of everyone’s existence. And when we think about it from a patient standpoint, so I am a pediatric gastroenterologist, so for me, my patients are the children. So I think about if we sit back and say, “Okay, here’s a child. Where all do they touch food in their life?” So they touch food at home, and I think the quality of life for some people at home gets affected because they think about the expense of the food. They think about how much of a burden they are for their parents. Then you have school. There’s school lunches. There’s school snacks. There’s after school activities. Everybody brings in pizza. That affects their quality of life. And then you think about their social relationships. You’re going out with somebody, there’s always food involved. There’s never a time that people would say, “All right, we’ll just go out for a walk, and socialize, and hang out, and there will be no food.” You’ll still be carrying a bag of food even if you go on a walk.
So I think from that standpoint for the children. And if you think about adults, if you have board meetings, or if you have a luncheon at work, there’s always a lunch at work, or you have a meeting, it’s a breakfast meeting. So what happens? There’s food. So it truly affects your life. Even if you don’t think about food as being a very important part of your life, unfortunately, it becomes a part of your life. And if you have celiac disease, then you have to think 100 times, “Is there going to be food for me? Shall I just eat? Am I a burden on somebody? Or is there going to be no food?” And all those things that go along with any sort of food-related activities.
Vanessa Weisbrod:
How is quality of life impacted for parents of a child with celiac disease, and perhaps the entire family?
Dr. Ritu Verma:
From a parent standpoint, and I’ll tell you from my own standpoint, and I hope my children don’t listen to this podcast. Well, they do listen to the podcast. But I have two children who have celiac disease, and one who does not. And I remember from the time, my youngest was six when he was diagnosed, you didn’t go anywhere without a bag of food. There was always a thought, “I need to carry a bag of food with me.” And of course when you’re younger, you’re always carrying a bag of food for your children, or you’re carrying diaper bags and things like that. But as kids get older, as parents, you don’t carry food around, or you shouldn’t be carrying food around, unless you have food issues. So as a parent, you feel that burden that, “I need to take food with me, even if there’s going to be food somewhere else.” So there is that burden.
And then the expense. I mean, the expense, as you know, Vanessa, and anyone who’s in the world of celiac disease, the expense is so much. Your grocery bills suddenly go up 10 times at times, and then you also have this guilt. I think there’s a guilt attached to that, that your children have celiac disease. You are not suffering through that. Your children are suffering through there. So there’s so much guilt at attached to this disease, even though people might say, “It’s only food,” but only food becomes a big thing. So I think as a parent, there’s a social, there’s a physical, there’s an emotional burden to that.
And I can tell you that when both of my children who have celiac disease are not around, they’re both college, and working, and all that kind of stuff, there’s suddenly, it’s almost like a burden is taken off your shoulder. You don’t have to think about, where are you going to go eat? You could go anywhere. And you don’t have to think about, “Oh, did I bring that food or not?” And I can tell you the first time that happened when the two who have celiac were not at home, there was a sudden like, “What changed?” Change was that they were not around at that time, which is sad, which is very sad that that’s how one has to think. But there’s a huge burden with this disease.
Vanessa Weisbrod:
Let’s talk about hypervigilance. What are normal cautious behaviors, and how do we know when we’re crossing a line to be overly vigilant about the gluten-free diet?
Dr. Ritu Verma:
I think hypervigilance is if you are perpetually scanning the environment. You step outside your door, and you’re constantly scanning, “Is the car door … Did someone touch the car door? Because there was gluten in there.” That’s hypervigilance. You walk into a restaurant, and from the moment you walk in, to sitting at the table, you’re constantly looking for crumbs and things like that. And not only are you looking for crumbs, but you’re actually talking about it. You’re actually saying, “Don’t touch there. Don’t sit there. Let me clean it. Let me do that,” as a parent. So that is hypervigilance.
I think there’s a fine line between vigilance and hypervigilance, and it is tough. It’s very difficult, especially when someone has just been diagnosed. When you’ve just been diagnosed, and if your child is really ill, or you yourself are very ill, then you cross that line, and you go into hypervigilance. And I think perhaps to start off, it’s okay. But then you’ve got to back off. You really have to back off from that hypervigilance state. You don’t have to think that the whole world is out to get you, and you also don’t have to think that every crumb, you need to clean down every surface all the time. So it’s okay to be a little hypervigilant when you just start on the journey, because you’re learning all this, but then it’s also very important that you start backing off, and you just learn that things are going to happen in this world, and you just have to take it in your stride.
Vanessa Weisbrod:
How do you correct hypervigilance, or help families understand what really needs to be done to prevent gluten exposure?
Dr. Ritu Verma:
So, education. I always say education is power. Education for the children, education for the person who has celiac disease, and the education for people around them. It’s important for people to know that yes, you need to stay away from wheat, rye, barley, malt, all those kind of foods. You have to stay away from them. And we also talk about cross-contamination, and so on. However, you’ve got to start thinking a little bit more practically, and saying, “You know what? If there’s a crumb sitting there, and for some reason somebody would now touch that crumb and didn’t get clean, it’s okay. It is totally okay. Nothing is going to go wrong. Nothing is going to go wrong. You just learn from that experience, and don’t do it the next time.”
So if someone gets exposed to gluten once a year or something like that, is that the end of the world? No. It’s not the end of the world. What is end of the world in my mind is if you start really perseverating about that, or if you really start focusing on that to be the be all and end all on how you exist, there’s something wrong with that.
Vanessa Weisbrod:
Let’s talk about Asher’s story. It’s hard to hear how isolated this teenager felt from his peers and even his family. His story brings up so many questions for me. For example, did Asher’s gastroenterologist know how isolated he felt in so many aspects of his life? And if they did, how might it have helped? Or what could Asher have done to get help as a teenager?
Dr. Ritu Verma:
As a gastroenterologist or as a clinical team, it’s important to educate the family that this is not a disease that you need to be ashamed of. You didn’t do anything wrong. You didn’t ask for this. It’s not something that you should be ashamed of. So that’s the first thing. And then one of the things I’ll always tell my patients when we start off on this journey is, I actually tell them, “You know what? When your child comes home and is really tearful and said, ‘Everyone else ate a cupcake, and I could not,’ you shouldn’t say, ‘It’s only a cupcake. Come on. Let’s get over this. It’s only a cupcake. It’s only this.’ No, for them, it’s not the cupcake, but it’s a socialization.”
So first of all, we’ve got to take away the stigma from this disease. It is not something to be ashamed of. Just because you want to talk about food does not mean there’s something wrong with you and that you should not. So poor Asher, my heart went out to him when I heard that story. I think it’s important for that clinical team to be able to educate the patient and the family right off the bat. Things will happen. You are going to feel bad. It’s so important to come home and talk about it. And if you feel like you can’t talk to your parents about it, then send a message … These days, there are all these portals, or you can send a message to your clinical team and say, “Hey, listen, I really want to talk about this situation.” So have the children talk. So important to do that.
Vanessa Weisbrod:
What advice do you have for teens who may be feeling like Asher did in communicating with their parents about the gluten-free diet? How do they navigate disagreements on safety?
Dr. Ritu Verma:
I will say, children will listen to their clinical team maybe a little more than they’ll listen to their parents. So I think it’s important that that discussion happen in the doctor’s office, or in the nurse practitioner, whoever the clinical team is, or the dietician, that that conversation actually happen. And perhaps us as clinicians need to put some time aside in our office visits and say, “Hey, listen, how’s life going? Tell us what happens in school,” kind of thing. So bring it out so that the child, if the child feels like, “I can’t just bring up the topic,” I think us as clinicians need to bring it up. We need to actually put it in words, not just say, “Hey, what else?” I would actually say, “Tell me about school. Tell me about lunches. Tell me about friends.” And to put it out in words, so it invites a discussion from the child and the parent.
And I think it’s important for us to, again, put it in words and say, children will listen to their clinical team more than they’ll listen to their parents. There’s nothing wrong with that. My children don’t listen to me. They’ll listen to their own … I mean, it’s part of life. I don’t listen to my mother. So there we go. So I think that it’s important for us to put it in words, and not leave it to the imagination that the child is actually going to come and talk to us, or the parent is going to come and talk to us. And then I would talk about, “Tell me what happens at your dinner table. What kind of discussions go on?” Especially when someone has just been diagnosed, because everyone is a little uncomfortable bringing up. Everyone is sort of sensitive. There’s that elephant in the room. And I think it’s important for us as the clinical team to put it out in words, and invite that discussion.
Vanessa Weisbrod:
I think that’s such a great point, that inviting the discussion in these clinical encounters is so important. I think sometimes parents come to followups wanting validation that what they’re doing is that they’re doing the right thing, they’re doing everything to protect their child, and they want validation that they’re doing the right thing. Well, sometimes they might be doing a little too much and pushing their child in a direction like Asher went. So I think that the clinician bringing up these topics and letting the kids speak is really important.
Dr. Ritu Verma:
Yeah. And I think also with the parents, their hurt feelings, as a parent, from morning to night, all that you’re thinking about is, “Am I providing the correct diet to my child? Because this is their treatment. I don’t want my child to end up with another condition, or end up with something else.” So even as parents, I think you want not sympathy, but you want that discussion to happen, and for the child to understand that the parent is coming from a good place. It’s a good place, and that we all need to work together and iron out some of these difficulties. And I think in the medical world these days, there’s such a rush in terms of you’ve got to see so many patients, that kind of thing. So I think you almost need to have time set aside, or maybe as we think about followups for patients with celiac disease, that we actually have a followup where discussion is social. Discussion is not the blood work. Discussion is not looking at their height and weight, but it’s more discussion about social.
And I do think, and even as I’m talking, I’m like, “Oh my god. I need to do more of this.” So I think it’s important for us to bring that thought process in.
Vanessa Weisbrod:
Of course it’s never recommended to eat gluten if you have celiac disease. But if a teenager comes to you and describes a situation like Asher’s, and says they want to eat gluten once a month to feel normal, how do you counsel them?
Dr. Ritu Verma:
I think I would have a very tough time counseling, but I know that even with my journey of being in this space now for 35 plus years, is over time, I think we learn more from a scientific standpoint. So we do know there’s the 20 parts per million that we talk about that you cannot have, but I don’t think we all know exactly what happens if it’s once a year somebody has some gluten, right? So I think we do need to have more studies done looking at that. One goes down a very slippery slope if you say, “Okay, you could have it once a month.” Or, “You could have it once on your birthday.” Or, “You could have it once on a special day.” So I think that’s where the mindset is. You go down a very slippery slope.
So I would be very honest and upfront with a teenager, because again, you know what? If we start making up stories, everybody can Google things, and you get all that information. So I think it’s very important to be upfront and honest and talk about, “What’s the science behind it?” Because I think that resonates more than what I feel like you should be doing. So, “The science tells us that if you have gluten, more than 20 parts per million, this is what happens.” Do we know what happens if you have once every two, three months? I don’t think we really know. So I think we need to have that research happen, and I think I’m very upfront with my patients, and I’ll tell them that, “This is what we know so far, so let’s make a joint decision here in terms of what we are going to do.” So important to listen to that teenager, and I think if you meet them on their level and their playing field, probably get more of a buy-in from them. And then you’ve got to just teach and then hope for the best. They’re teenagers.
Vanessa Weisbrod:
What advice do you have for other clinicians seeing celiac patients on supporting them with improving quality of life?
Dr. Ritu Verma:
I think it’s very important for people to understand, and this is where I think me as being the mother of children, and having been a parent of this kind of comes in, is never, ever make the child or the parent feel guilty, because I think we do it on our own anyway. We don’t need the help of a clinician to make us feel guilty. So I think that’s important.
I think it’s also very important for the clinical team to listen to what the parent or the child is saying. Because if they’ve read it somewhere on some blog, or they’ve done something, it’s very important that you have this inviting atmosphere that, “You can come in with any information. Let’s talk about it. Let’s get the facts right, rather than living in the world of myths, and living in the world of fear.” That this is not the world we want to live in. So important for the clinicians to have an inviting atmosphere, like, “Come, let’s talk about whatever.” Even if somebody says, “You know what? As you mentioned earlier, ‘I want to eat gluten.’ Okay, let’s talk about it. Let’s talk,” so that you’re inviting enough for that.
And then never underestimate the power of the patient, because there’s so much information out there. Let it come on. And then I would say the clinical team has to be very empathetic, and has to have a followup. Many a times I see patients who have been diagnosed appropriately, everything is done, but then they’re told, “Okay, go on a gluten-free diet. See you in a year.” I don’t think that that is the right thing. I think it’s important to have the patients come in sooner. The year might be their blood work, but there’s more to celiac than blood work. So that’s where it’s important for people to know, to educate the families that, “You need to come in for followup for many reasons.”
Many reasons being the education, “Did you start your journey with celiac disease in elementary school and now you’re in middle school?” A whole different education that needs to happen. So you’ve got to come in for education, talk about quality of life, and, “How can we support you? How can we get psychologists, the dieticians, and make sure that you have a healthy diet?” Not just a gluten-free diet, but a healthy gluten-free diet is important. So I think anyone working in the space of celiac disease needs to know there’s more to it than, “No wheat, rye, barley.” There’s definitely more to this disease than just that.
Vanessa Weisbrod:
As you heard from Asher, his parents largely influenced where he would go to school based on the way in which gluten-free food is prepared. How much of a role should celiac disease play in picking a college?
Dr. Ritu Verma:
So I think all my patients know that you don’t pick a college based on the diet. I totally understand what the parents are feeling, so I’m going to absolutely say, as a parent, your first instinct is, “I want to keep my child safe. I want to make it easy for them. I want …” Because college itself has its own issues, forget about gluten-free food. So I totally get it, where the parents are coming from, that they want the best for their child. But I do think this is where, again, we need to support the parents. This is here, we need to support the parents, and say, “You know what? Let your child go to a college based on where they want to go to really thrive and flourish from a education, total experience standpoint.”
And then, yes, if they don’t have gluten-free options, it is going to be an uphill battle, but that’s learning for their child, too. Because you know what? That’s life. Life’s all about, right, it’s uphill, and downhill, and flat plains, and everything else. And we then, as a clinical team, need to support the family, and support the child in terms of how to overcome these obstacles. And that’ll make the child stronger. They’ll know, “This is what I have to deal with. Until the whole world becomes gluten-free, this is what I have to deal with in terms of how do I live.” So don’t pick a college based on their dining hall. Pick a college based on what you want to do in life.
Vanessa Weisbrod:
Any other last suggestions for living a happy, healthy, and fulfilling gluten-free life?
Dr. Ritu Verma:
I wish I had that magic potion, but I think if we would all, and this is, I think, for any chronic illness, or life in general, I think if we learn the basics, and then don’t get too caught up in the minor things, and not get stressed out if a cross-contamination happens. If something happens, let’s talk about, “Why did it happen?” There are children who will see a pizza slice, and they remember from the past how it tasted, and there’s no one else around. “Let me just take a bite.” Let that child talk about it. Don’t make your children feel guilty for their feelings. You should never make a child or an adult feel guilty because, “I really want to eat that regular slice of pizza,” or, “regular slice of bread,” or “regular whatever.” Don’t make them feel guilty. Let them talk about it. So the more we can talk, the more we can be supportive and not make people feel guilty, life would be good on many aspects, I think.
Vanessa Weisbrod:
Thank you so much, Dr. Vermer, for all of this wonderful information. We’re going to take a quick break, and when we come back, we’ll have Jessica Lebovits here to discuss the impact of celiac disease on dating and relationships.
Dr. Ritu Verma:
Thank you, Vanessa. Thank you.
Vanessa Weisbrod:
We’re going to take a quick break to hear from our podcast sponsor, The Global Autoimmune Institute.
Speaker 4:
The Global Autoimmune Institute works to empower solutions and the diagnosis and treatment of autoimmune diseases through research, education, and awareness, while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Welcome back, and welcome, Jessica, to the podcast. I’m so excited to talk to you about relationships today. This is so important for people living with celiac disease, and it really hits home for me. As I’m sure we’ve discussed many times over wine, I was diagnosed with celiac as a senior in college, and it really impacted my dating life. I remember going on a first date after my diagnosis, and it was just a complete disaster. It was 2004, so before gluten-free was really well known, and the restaurant actually asked us to leave, because they didn’t have anything that I could eat. It was totally awful. And of course, the guy never called me back again for a second date. It was awful. So I’m excited to talk about this with you, and your team at Columbia has done some really interesting research on dating and celiac disease. So can you tell our listeners about your study, and what you are hoping to learn?
Jessica Lebovits:
Absolutely. So your first date story really stood out to me. It is so upsetting, but you are not alone. And this is kind of where this study came about, is that we were hearing patients at our center talk about their struggles with dating. But to start, really what happened was, we do a lot of studies on celiac disease and quality of life, and we know that the diet has negative impacts on the quality of life, especially in regards to dining out. But there really was a gap in the research when it came to dining out on a date, or just the fact of dating with celiac disease and relationships. So that’s where we came to want to study this topic.
We know that when you are on a date, a lot of times dating revolves around food, especially dining out at restaurants. So we would expect that there would be these added pressures, and people might feel more anxiety, and have more difficulties when dining out on a date. And so this is what we wanted to look into, and some patients really wanted to discuss these struggles with us, but other people felt too embarrassed to bring these topics up with their providers, and felt maybe it was inappropriate to bring up. So that’s where this came about.
Vanessa Weisbrod:
So nearly 70% of participants in your study said that celiac had a major or moderate impact on their dating life. Can you tell us more about this?
Jessica Lebovits:
Yeah, so the majority of the participants did report that celiac disease had a major or moderate impact on their dating life. So this was what we expected to find, that this really was contributing to more struggle for them than maybe the general population. And we did find that the greater impact was more commonly reported among females, those in the 23 to 35 year age range, and also those with an annual household income below $50,000. Another thing is that those who did report this greater impact were found to have a worse quality of life.
Vanessa Weisbrod:
Absolutely. So dating, especially first dates, come with a lot of anxiety. How did celiac disease impact anxiety in your study group?
Jessica Lebovits:
So in our qualitative responses of the study, we actually analyzed the struggles and the emotional challenges people were facing, and found that they specifically had anxieties surrounding dining out, communicating needs related to their celiac disease, and also managing their emotions as they reported sadness, unwanted attention, and embarrassment.
So I have a few quotes from our participants and how they really summed up their experience in having these anxieties. So one respondent said that their struggle was, quote, “Relaying the seriousness of the disease without completely scaring the other person away.” Another said, “And with someone new, it feels embarrassing. And I worry that they will think I’m overreacting or taking cross-contamination too seriously.” And another said, “It’s uncomfortable to bring focus on my medical issues and restrictions while getting to know people.” Also, those who were hesitant to kiss their partner, and those who reported that their symptoms interfered with being physically intimate, did have worse social anxiety and worse quality of life.
Vanessa Weisbrod:
That’s so interesting. And I remember being on this very first date, when we were asked to leave, and I had not explained that I had celiac disease prior to going on the first date. And two of the questions that this gentleman who never called me again asked me were, could he kiss me if he had eaten gluten, and could he hold my hand if he had touched gluten? And of course, I was 20 years old in college, and I didn’t know what the answers were at that time. And so it can be just really intimidating to think about explaining your disease and your needs when you’ve just met somebody.
Jessica Lebovits:
Yeah. And some of these conversations, you wouldn’t even necessarily have on a first date. So a lot of our participants talked about the fact that they’re talking about their medical issues and their conditions when that might not have been a first date experience for somebody else. So because the diet is so involved in the treatment, it does come up very frequently in the beginning of this dating experience, and that can be beneficial for some, but very stressful for others.
Vanessa Weisbrod:
Yeah. It’s hard to talk about disease when you want to paint yourself in a beautiful light on the first encounter.
Jessica Lebovits:
Right. You’re making that impression, and you’re really hoping to make that good impression, but at the same time, you do need to explain your needs. And so I think that there’s an internal conflict there, and that’s where we found some people found this experience very stressful, and explained feelings of shame, sadness, and all this unwanted attention that they didn’t necessarily want to have. Some people reported it as a nice date turned into an interrogation about their celiac disease. So it can take a turn in different ways that people really don’t want, or it can obviously be a open communication that can go very well.
Vanessa Weisbrod:
Absolutely. So did people with celiac forego going on dates because of their disease?
Jessica Lebovits:
So we did actually have that nearly half admitted that they were hesitant to even go on dates just because of their celiac disease, which is a bit disheartening. We also found that the majority, though, who were going on dates, preferred non-food related activities for the first few dates. So things like drinks, or movies, hiking, rather than just meals. And about three quarters did say that they prefer to take an active role in choosing the setting of the date.
Vanessa Weisbrod:
Absolutely. So our patient, Asher, intentionally ate gluten to fit in. What did you find in your study regarding intentional gluten ingestion on dates?
Jessica Lebovits:
So he’s unfortunately not alone. As we said, there’s a lot of pressure in these situations. So in our survey, we did find that 39% were uncomfortable explaining precautions to waiters in front of their date. 28% engaged in riskier eating behaviors on a date. And then the most shocking number is that 7.5% of our participants did admit to intentionally consuming gluten while on a date.
Vanessa Weisbrod:
Wow. It’s so hard to see that. I mean, 7% sounds like a little number, but it’s really not, that these people chose making themselves sick over being truthful or being comfortable enough to explain their needs.
Jessica Lebovits:
They are choosing in the moment what matters to them, and unfortunately, in this case, they obviously have decided that they’re going to risk having gluten exposure for whatever reason, and these are the types of topics we really want to find out about in our patients so that we can find solutions, besides just ingesting gluten, that are going to make them feel comfortable in these situations.
Vanessa Weisbrod:
Absolutely. So dating and relationships are obviously a very important part of life. Can you talk to us about how you work with patients to navigate the challenges of a gluten-free diet while still having some normalcy in this area?
Jessica Lebovits:
So our hopes with this study is that this topic becomes more relevant, and people feel more comfortable bringing up these questions and challenges with me and with their practitioners, whether it’s a doctor, dietician, psychologist. The more that you’re meeting with your medical care team, the more that you can address these issues. And these are the quality of life issues that go beyond just, “What is gluten? What isn’t gluten?” “What can we do about these challenges, and how can we develop good coping mechanisms to be able to address them?” So as a practitioner myself, I want to ask questions about what is happening in these situations where gluten might come up, and what’s happening in these dating situations.
So I always ask about the full picture of a patient’s life in terms of their diet, their lifestyle, their dining out, who they’re dining out with, but also I do ask them, “Do you ingest gluten, or do you think that you have gotten gluten exposure?” And if the answer is yes, which I hope that all patients are honest, is that we’re in a non-judgemental zone. We want to find out why. So I’ll ask them, “What was the scenario? What was the food? Who were you with?” And ideally, we’re getting to the bottom of it there, of, “Oh, well, actually, I was on a date. This is how I felt.” And I might say, “Why did you feel that you needed to consume the gluten, or take these riskier chances?” And we really want to kind of dig deep and find out the reasons behind it, and what’s going through their mind in those moments, and then talk through solutions. “What can we do the next time so that you’re feeling comfortable and you’re feeling confident in your gluten-free diet and in your decisions?”
Vanessa Weisbrod:
For sure. So I knew that my husband was the one after our first date for many reasons, but one was that he was so caring about making sure that I could eat the food. It was so comforting to me to be with someone who was willing to be an advocate, even on our first date. How do we help spouses and families of people with celiac disease understand the importance of them also being an advocate?
Jessica Lebovits:
Well, I’m just so happy to hear we went from the terrible first date to a wonderful, supportive spouse. So that is a story that hopefully can be for everyone, or maybe we even skip the terrible first date.
Vanessa Weisbrod:
Yes.
Jessica Lebovits:
Okay. For educating others, I think the two most important things for explaining and having others understand the importance of being an advocate is education and communication. So we do need to do our part in educating the people in our lives what celiac disease is, why it’s so important to follow a gluten-free diet, what your needs are, so that they can understand. If they have not had exposure to this before, they really just don’t know, and we need to be that person to tell them what is going to be necessary and why, and also why it’s so important to you.
And I think that’s where the communication piece comes in, too, is we need to be open and honest with our partners and our families about what you need, and what you need to feel supported. So whether it’s them just being your rock, when you are asking the questions, and not rolling their eyes in the background, or anything like that, or they’re helping you to do certain things, looking into restaurants, or pretending to be the one with celiac disease on a date, whatever it may be, you want to figure out deep down, what is it that you need out of a partner? And being able to communicate that to other people or family members so that they know, “Oh, this is really what they need from me, and I can do this and this so that in the future, we can have these positive relationships.”
I would also say that in our study, we found that most respondents valued a partner who is understanding and compassionate. So those are qualities that make sense. Obviously, we want somebody who is going to take these things seriously, isn’t going to be judgmental. And so looking for partners that will display these qualities in the long term.
Vanessa Weisbrod:
Absolutely. Because celiac is the rest of your life, and hopefully your marriage is the rest of your life as well, and you want to have fulfillment in both places.
Jessica Lebovits:
Absolutely.
Vanessa Weisbrod:
So Jessica, thank you so much for being here today and for all of the wisdom you shared with us. So I want to switch gears now and find out where Asher is today.
Speaker 2:
Asher is now 41 years old and has two young boys of his own. He looks back on his first year of college as one of the most stressful of his life, but Asher is thankful that midway through his sophomore year, he started seeing a dietician affiliated with the university health center, who helped him better understand how to safely manage a gluten-free diet while still living his life. He was referred to the dietician by the Office of Disability Services after they received so many requests for what they deemed unreasonable asks from Asher’s parents for gluten-free accommodations. After three meetings with the dietician, he asked if his parents could join him for a session to learn about reasonable ways to prevent gluten exposure. The dietician agreed. For Asher, this meeting was a turning point in his life. For the first time in years, he felt a weight lifted off his chest. It was a new beginning, and there was a light ahead.
Asher met his wife during their senior year of college. Their courtship was easy, joyful, and filled with dinners at many wonderful restaurants. Their entire wedding was gluten-free and included a four-tier chocolate cake with salted caramel frosting.
Asher and his wife have two sons. Their 10-year-old was diagnosed with celiac disease last year, but the youngest still tests negative. Asher describes his approach to managing celiac with his own son as very different than how his parents handled it for him. He says that he’s very cautious about preventing gluten exposures, but also allows his son to participate in every activity that he wants to. He is the first to sign up to bring snacks to school, and always finds a way for Josh to participate. In his own words, “I missed out on so much because my parents were so afraid of gluten harming me. The truth is that we live in a gluten-filled world, and we must learn to create a new normal for ourselves where we still live life while doing reasonable things to prevent getting glutened. There is value in being vigilant, but equally as much value in enjoying life.”
Vanessa Weisbrod:
Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from The Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac, and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like, and subscribe wherever you get your podcasts. For more information, check us out on social at @BostonChildrensCeliac on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Have a great month.
7/20 Episode 8: Well Treated Celiac, But Still Got Thyroid Disease?
Expert Guests:
- Dr. Ari Wassner, Medical Director of the Thyroid Center, Director of the Endocrinology Fellowship Training Program at Boston Children’s Hospital, and Associate Professor of Pediatrics at Harvard Medical School
- Sharon Weston MS, RD, LDN, Boston Children’s Hospital
Learning objectives:
1.) Describe the relationship between celiac disease and autoimmune thyroid disease.
2.) Explain the treatment options for patients with a dual diagnosis of celiac disease and hypothyroidism.
3.) Discuss strategies for encouraging gluten-free dietary compliance in patients with both celiac disease and autoimmune thyroid disease.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Speaker 1:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the celiac program at Boston Children’s Hospital. At each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient family, the latest research and offers suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5, AMA PRA category one credits for physicians, 0.5 contact hours for nurses, 0.5 ACE CE continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Speaker 2:
Isabella or Bella, as her friends and family call her, had a very medically complicated childhood. It started when she was born six weeks early because her mom went into preterm labor. Her lungs weren’t quite developed enough and she had trouble regulating her body temperature. So she was stuck in the NICU for several weeks before coming home to her farm animal themed nursery. As a baby, Bella had febrile seizures with every virus. She was in the hospital so many times, the nurses in the pediatric intensive care unit quickly became some of her biggest fans. When she started eating solid food, it seemed as though she had an anaphylactic reaction to every few foods she tried. Dairy, eggs, peas, apples, strawberries, and peanut butter to name a few. She was always sick as a kid. If there was any illness going around her school, Bella was sure to get it.
Over the years, Bella outgrew most of her allergies, which made life a lot easier. But when she started college, she found herself with a belly so bloated and gassy that her roommate started calling her Bloated Bella. She regularly had terrible diarrhea and found it extremely challenging to gain weight. When she was home for spring break, her mom took her in for a visit with the pediatrician, but his initial thought was that she was eating unhealthy food in the college dining hall, and she should focus on eating more fruits and vegetables. Bella rolled her eyes at her pediatrician. Sure, she ate her fair share of pizza and nachos, but she also ate salads, grilled veggie sandwiches on whole wheat bread and drank fruit smoothies. She didn’t think she was that unhealthy.
Speaker 1:
Celiac disease is triggered by consumption of gluten. The protein found in wheat, rye, and barley. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing important nutrients in food and cause a variety of symptoms like gas, bloating, and diarrhea to name a few.
Speaker 2:
Bella continued on with the school year and returned home for the summer to her hometown just north of Washington, DC. That summer, she had landed an internship with her state’s US senator, and she couldn’t wait to get started. During her first week on the job, she was eating lunch in the Senate cafeteria when she overheard one of her co-interns asking about gluten-free food options. When her colleague Amy sat down at the table, Bella asked her why she needed to eat gluten-free food. Amy told her that her entire childhood she had stomach issues and she was finally diagnosed with celiac disease in high school. After starting a gluten-free diet, she felt better in just a few weeks. Amy’s mom also had celiac disease. Bella couldn’t help but wonder if maybe she too had celiac.
Celiac wandered around Bella’s mind for about three weeks before she mentioned it to her mom. Instantly her mom’s eyes lit up and she blurted out, “I think Uncle Adam was diagnosed with celiac disease last year.” A quick phone call later, she confirmed that her mother’s brother had been diagnosed, but his main symptoms were fatigue and iron deficiency. He never had stomach issues. Bella pulled out her laptop and started doing research. She quickly learned that celiac disease is a genetically mediated autoimmune condition and that people experience symptoms vary differently. One person could have diarrhea and another could be constipated.
Speaker 1:
Doctors haven’t yet figured out exactly how someone develops celiac disease. They do know that children with celiac inherit the genetic risk from a parent that makes them susceptible to the disease. But since many people have these genes but never develop celiac disease, it’s likely that other factors play a part too. Some researchers believe that celiac disease may be triggered by the combination of having the genes that make you susceptible, exposure to gluten and exposure to a toxin or infection, such as the rotavirus. Regardless of what triggers celiac disease, it remains unclear why people experience symptoms in such different ways.
Speaker 2:
Now 19 years old, Bella decided it was time to see an adult practitioner, so she had her mom make an appointment for her with an adult primary care physician. One week later, she had her blood drawn and two days later, the doctor called to tell her that her tissue transglutaminase antibody test was positive and she needed to schedule a visit with a gastroenterologist to confirm the celiac disease diagnosis. She did and two weeks later had a positive biopsy for celiac disease. Bella immediately transitioned to a gluten-free diet Within a month she felt like a new person. Her stomach was no longer bloated, she had normal bowel movements, and her once embarrassing gas had faded away. Life was good.
Speaker 1:
The only treatment for celiac disease is strict adherence to a gluten-free diet for life. This will allow the intestine to heal and in almost all cases eliminate the symptoms related to celiac disease. For some people, relief of symptoms happens very quickly in a matter of weeks. For others, it can take quite a bit more time, up to two years or longer.
Speaker 2:
Everything seemed to be going well for Bella. She graduated college, started a job at a nonprofit working on healthcare policy in Washington, DC and had an active social life. She met her now husband while playing kickball on the National Mall by the Washington Monument, and they were married in a ceremony overlooking the Potomac River. Life was great until after Bella had her second child. Long after she had stopped nursing, she was still losing her hair in large amounts, and no matter how early she went to bed, she never felt like she got a good night’s sleep. She was intensely fatigued.
Perhaps worst of all, she got hives all the time for no apparent reason. Her doctor was stumped and sent her to an allergist and immunologist for further investigation. At the first visit, the physician ordered several blood panels and took a skin biopsy of one of Bella’s hives. When the doctor called her a few days later with the results, Bella couldn’t believe what he said. She likely had an issue with her thyroid called autoimmune thyroiditis, more properly known as Hashimoto disease. Bella felt defeated and depressed. She worked so hard to manage a strict gluten-free diet, yet still ended up with another autoimmune disease.
Speaker 1:
Hashimoto disease is an autoimmune disorder that can cause hypothyroidism or underactive thyroid. It’s closely linked to celiac disease. With Hashimoto, the immune system attacks the thyroid gland with large number of white blood cells building up and causing inflammation in the thyroid. This damages the thyroid and prevents it from making enough thyroid hormone. The hormone is important because it helps control how your body grows, uses energy, and how many of your organs function.
The symptoms of hypothyroidism and celiac overlap somewhat, but the treatments are different. With celiac disease, the only treatment is a strict gluten-free diet. Hypothyroidism is treated with a medication called levothyroxine, which is a form of the thyroid hormone T4 that the body normally produces. Like the gluten-free diet, levothyroxine is usually a lifelong treatment. The prevalence of autoimmune thyroid disease in patients with celiac disease is four times greater than that in the general population, this is likely due to sharing of the same genes.
But why did Bella develop a second autoimmune disease 14 years after being on a strict gluten-free diet? Did having celiac disease trigger the thyroid condition or did her pregnancies? Did the gluten-free diet help with treating thyroid disease or is medication always needed? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about celiac disease and thyroid issues with Dr. Ari Wassner from Boston Children’s Hospital. Dr. Wassner is the medical director of the Thyroid Center, director of the endocrinology fellowship training program at Boston Children’s and associate professor of pediatrics at Harvard Medical School. He earned his MD from Harvard Medical School and completed a residency in pediatrics and fellowship in pediatric endocrinology at Boston Children’s Hospital. Dr. Wassner is an international expert in pediatric thyroid disease serving for the American Thyroid Association, Pediatric Thyroid Cancer Guidelines Task Force, and the writing group of the American Academy of Pediatrics Congenital Hypothyroidism Guidelines. Welcome Dr. Wassner to Raising Celiac.
Speaker 3:
Great to be here.
Speaker 1:
So Dr. Wassner, before we talk about how these conditions are connected, let’s talk just about thyroid disease. What are the different types and how do you differentiate among them?
Speaker 3:
So the thyroid is a gland as many people may know, thyroid is a gland that lives in your neck and it makes a hormone that’s important for regulating a lot of different organs. So the main types of thyroid problems that we think about are either an underactive thyroid that doesn’t make enough hormone, which we call hypothyroidism, or an overactive thyroid that makes too much hormone, which we call hyperthyroidism. They’re also thyroid nodules in cancer, but that’s sort of a different class of disorders. So we’re mostly talking about functional thyroid problems, hypo and hyperthyroidism.
Speaker 1:
What are the most common symptoms of thyroid disease?
Speaker 3:
Yeah. So one of the challenges we have in my field in endocrinology is that a lot of the symptoms of thyroid problems are what we would call nonspecific, meaning they can be caused by a lot of other things too. So the thyroid and thyroid hormone is responsible for, you can think of it as sort of setting the rate or the pace of a lot of different body functions. So when your thyroid is underactive, a lot of things slow down. So you may feel tired, fatigued, low energy. People may feel colder than usual and it slows down your metabolic rate. So people may gain weight, they may have a lower heart rate, things like that. And if your thyroid is overactive, tends to be the opposite. So people feel speeded up in general, they may lose weight unintentionally, they may feel hot, they may have frequent bowel movements. I didn’t mention, but hypothyroidism, you may have slower gut motility, so you may have constipation. So there’s sort of two sides of the coin.
Speaker 1:
So every gastroenterologist that specializes in celiac disease routinely test their celiac patients’ thyroid levels. Why is this important?
Speaker 3:
So celiac disease, as people may know, is a immune disorder. It’s sort of an immune dysregulation, and the most common cause of thyroid problems is an autoimmune thyroid disease. And so people who have celiac disease, they have this immune dysregulation. They may be more at risk for autoimmune problems in the thyroid, which can cause hypothyroidism or hyperthyroidism. So the link is an immune link and that’s why people with celiac disease are at higher risk for thyroid problems.
Speaker 1:
So tell our listeners more about the connection between celiac disease and thyroid conditions. Why are they so closely linked?
Speaker 3:
Yeah, so as best we understand, the reason it has to do, as I mentioned, with the immune system. So celiac is this sort of immune reaction to a particular component of gluten. So the immune system gets a little bit confused and has an abnormal reaction to that particular substance in the GI tract. The most common cause of thyroid problems, as I said, is something called autoimmune thyroiditis, which is the immune system similarly getting kind of confused and starting to attack your own thyroid gland. And so some of the genetic predisposition to these kind of immune problems are the same. The same kinds of genetic variants that might contribute to your risk of celiac disease, also contribute to the risk of having the autoimmune problem in your thyroid. And so those who have celiac are probably at risk for thyroid problems, and vice versa, those who have thyroid problems are probably at higher risk for developing celiac disease.
Speaker 1:
Do you also routinely screen for celiac disease in your thyroid patients?
Speaker 3:
So not necessarily, that’s not a sort of routine recommendation at this point. Autoimmune thyroid disease is extremely common. There are some estimates that maybe five to 10% of the adult population have autoimmune thyroid disease. Not all of that needs to be treated, but it’s there. And so there’s not a recommendation necessarily to routinely screen everybody with thyroid disease for celiac. However, certainly something that we think about and we ask people about symptoms and if there’s anything that raises concern for possible celiac disease in one of our thyroid patients, we would certainly test for it.
Speaker 1:
Is hypothyroidism or hyperthyroidism more common in patients with celiac disease?
Speaker 3:
So overall hypothyroidism, so underactive thyroid, is much more common than hyperthyroidism or overactive thyroid, and that’s true in general and within the celiac population. So hypothyroidism, definitely more common.
Speaker 1:
Are there more common symptoms of thyroid disease in patients with celiac disease or do they vary?
Speaker 3:
Yeah, so I’m not aware of any studies showing a different spectrum of symptoms in the celiac population than in the general population with thyroid disorders. So the challenge I think is, as I mentioned, so a lot of the symptoms of thyroid disease, as I mentioned, like fatigue, changes in bowel movements, there can be mood symptoms, energy, those could be thyroid related, but they’re also can be caused by lots of other things. Problems with sleep or celiac or any number of other things. And so teasing out in a given person if they’re, say, feeling they’re low energy or fatigue, whether it’s really thyroid or really celiac or what it is, can be a little tricky. And so we have to often do some testing and try to figure out where is that symptom coming from.
Speaker 1:
So for our patient Bella, she was diagnosed with celiac disease first and it was many years later she was diagnosed with Hashimoto. Is it typical that celiac is diagnosed first or can thyroid disease come first?
Speaker 3:
Yeah, so just to clarify, you use the word Hashimoto. So Hashimoto is sort of a term that we use for autoimmune thyroiditis. So what I call autoimmune thyroiditis, that is the autoimmune inflammation in the thyroid, I typically call that autoimmune thyroiditis, but very commonly it’s referred to just as Hashimoto disease after Dr. Hashimoto. So we sort of use that as a shorthand.
So the question is, which comes first? It can happen in either order. So it’s common either way. As I mentioned, this sort of genetic predisposition to these two conditions are somewhat shared, and so it’s a little bit random whether for people who are going to develop both, which one they happen to develop first. But certainly if you have either of those conditions, you want to be on the lookout for the other. As you mentioned in the folks with celiac disease, there’s sort of an active effort to look for thyroid disease.
Speaker 1:
Do you know what triggers thyroid disease?
Speaker 3:
I do not. I wish I did. And nobody really knows, but at least the type we’re talking about autoimmune thyroiditis or Hashimoto, it is in this family of autoimmune disorders like celiac. And many others, lupus and many of these other autoimmune diseases. And so we know that there is a genetic predisposition. So many people have genetic changes that make them more likely to develop it, but just because you have those genetic changes doesn’t mean you will definitely develop thyroid disease. So there’s probably other factors. Many people think there’s en environmental factors, but we don’t know exactly what those environmental factors are as for many of these disorders. So we don’t know exactly what triggers it. Some combination of genetic predisposition and some other perhaps environmental factors that we don’t understand yet.
Speaker 1:
So for patients like Bella who were diagnosed with thyroid disease long after the celiac diagnosis and are on a strict gluten-free diet, did the celiac cause the thyroid condition? I think there’s an element of frustration when you’re on a gluten-free diet and you’ve been told that your gut is healed, but then you still develop another autoimmune disease.
Speaker 3:
Yeah, no, I think that that’s true, and certainly I see it from the other side. Folks who have treated thyroid disease, we then developed celiac. So as I sort of alluded to, it’s not really that one is causing the other. It’s not that the thyroid disease is causing the celiac or celiac is causing thyroid disease, more that the two conditions share a common genetic predisposition or familial predisposition. And so if you have one already, you probably are someone who is more likely to develop the other. But it’s not like if you develop thyroid disease after celiac, it’s not like you’re doing something wrong or you’re not being treated adequately for your celiac. It’s just that you were probably a person who was predisposed to be more likely to get thyroid disease also.
Speaker 1:
So the gluten-free diet doesn’t prevent development of thyroid disease?
Speaker 3:
No, unfortunately not. And that’s actually a very common question. A lot of folks, even folks who don’t have celiac disease but do have autoimmune thyroiditis, are curious about are there any kind of changes they can make to help ease that problem or prevent them from going on to require thyroid medicine and gluten-free diet is something that often comes up. But at this point, there’s no real evidence that any specific diet, including gluten-free diet, actually prevents the development of thyroid disease or prevents it from, if it’s there, prevents it from getting worse. So folks who have just thyroid disease, not celiac, we don’t typically recommend that they use a gluten-free diet or adhere to a gluten-free diet just for that reason.
Speaker 1:
I think it’s definitely a frustrating point for people with celiac disease being that we say stick to the gluten-free diet to prevent developing complications of the disease, and in this case, it really isn’t helping to prevent it.
Speaker 3:
Yeah, I think that’s true. And the way I think about it is they really are separate disorders. They don’t necessarily, one doesn’t cause the other, and the treatment for one doesn’t unfortunately help prevent the other. They’re separate diseases, but they share a common predisposition. And so that piece, we don’t really have a good way to address at this stage.
Speaker 1:
Does the gluten-free diet help improve symptoms of thyroid disease or is medication always required?
Speaker 3:
So similarly, the gluten-free diet is really a treatment for celiac disease. It doesn’t directly affect the thyroid at all, really. The second part of your question though, does thyroid disease always require treatment is a little bit different, which is there are plenty of people who have autoimmune thyroiditis or Hashimoto’s meaning inflammation in the thyroid, but it hasn’t yet gotten to the point that the thyroid is underactive. So the thyroid is a little bit inflamed, but it’s still working fine. Those folks don’t really need treatment. They may progress over time. They may go on and thyroid inflammation can get worse, and they may eventually need treatment. But it’s not necessarily everybody who has autoimmune thyroiditis needs treatment. It’s only when it gets to the point of the thyroid being underactive that treatment is needed. When that happens though, the treatment is specifically a thyroid treatment, typically levothyroxine, which is just replacing your normal thyroid hormone. That would be the treatment that would be needed if it got to that point.
Speaker 1:
There are very, very few medications that contain gluten as a binder, but one that does is some generic forms of Synthroid. How can physicians help their patients with celiac and thyroid ensure they’re getting a gluten-free version of the medication?
Speaker 3:
So this definitely comes up as we have patients who have both thyroid disease and celiac disease, as you mentioned. So I think it’s just number one important for us as physicians to remember that this is potentially an issue. If we have a patient with both conditions and we need to treat them, for example, with thyroid hormone, with levothyroxine then I need to be aware that that could be an issue and remember to try to prescribe one of the formulations that doesn’t have gluten in it. Sometimes that requires special authorizations and so forth, but that’s partly on me.
I would also say it’s helpful for patients, folks who have celiac disease, they’re always thinking about gluten. So just to remember that medications are also potential sources of gluten. And so for example, if you have celiac disease and you’re going to see a doctor about thyroid disease and they’re saying, “Oh, I’m going to prescribe you this medication,” to always have that trigger and be like, oh, new medication. Let me tell my doctor, by the way, remember I have celiac disease. Also pharmacists can be helpful here. If you go to pick up your medication, ask the pharmacist, “Hey, by the way, does this contain gluten?” Because pharmacists will have that information and they can then alert the physician and say, “Hey, your patient actually needs a gluten-free form of this.” So I think just better awareness on the part of everyone involved.
Speaker 1:
Absolutely. So you’re a pediatric endocrinologist. So let’s talk about the differences between kids with thyroid disease and adults. Are the symptoms the same in kids as an adult?
Speaker 3:
Yeah, so broadly similar. The symptoms can be similar. I think the thing that is most different about kids and adults is that kids are growing and developing. So adults are fully grown, they’re fully developed, but kids are growing, they’re going through physical development, puberty at a certain stage, they’re also in school. So we may see in pediatrics, if hypothyroidism particularly gets to a severe enough point, we may see them decreases in growth. Sometimes it affects school performance, things like that, or may delay their pubertal development. Those are things that we might not see in adults.
But aside from that, symptoms are broadly similar. Maybe things like fatigue, constipation, feeling cold. Although I have to say kids in general, in my experience, tend to be pretty tolerant of hypothyroidism particularly. And so very mild hypothyroidism, oftentimes kids don’t really have any symptoms. If you ask me what’s the most common symptom of hypothyroidism, the most common thing is no symptoms at all. So there are lots of people who just don’t really notice. Now, once they’re treated, they may feel better. So they sort of didn’t realize as they were kind of used to it, how they were feeling. But a lot of the kids we see, even with modest hypothyroidism, really don’t feel that different.
Speaker 1:
So what is the average time to diagnosis for a child, or how does a child typically get to you? It sounds like these symptoms are so common of other childhood ailments or things that you would think that much of.
Speaker 3:
Yeah, so time to diagnosis obviously is hard to know because we never know once we see them how long it’s been going on. But autoimmune thyroiditis particularly, that’s the most common cause of thyroid problems, and it’s is a chronic process. So it happens over time. Weeks, months, even years, it’s not going to happen all of a sudden. So sometimes people are diagnosed because of symptoms. They may have fatigue or weight gain or constipation, and maybe their physician will check their thyroid function to evaluate that.
Or sometimes it’s growth issues, their growth is slowing down, which by the way can also be assigned celiac. Kids don’t grow well if they have celiac that’s unrecognized or undertreated. Sometimes it’s picked up just kind of incidentally, they go to their doctor and for whatever reason they do sort of a thyroid panel. Sometimes it’s from screening for other related disorders. For example, celiac or type one diabetes, which is also an immune problem, we screen those kids for thyroid problems. So there’s a variety of ways that it gets detected, sometimes symptomatic and sometimes through screening or other testing for other things.
Speaker 1:
If the kids are generally asymptomatic, do they need to be treated?
Speaker 3:
So that depends. The treatment is really, it’s based more on the severity of the hypothyroidism than whether they have symptoms or not. So those things think they’re somewhat related. If the hypothyroidism is very mild, then you’re unlikely to have symptoms and you’re probably less likely to need treatment. If your hypothyroidism is a little more severe, we’re probably going to treat you whether or not you have symptoms. Because as I said, thyroid hormone affects a lot of different organ systems. Even if you don’t feel it. It affects your heart function and your GI function and your metabolic rate and your cholesterol. So even if you don’t feel some of those things, if it’s severe enough, we would treat it.
Speaker 1:
And how about the treatments? Are the treatments the same as in kids and adults?
Speaker 3:
So the main treatment for, again, hypothyroidism, which is much more common, the treatment is a medication called levothyroxine, which is, it is exactly the same chemical, natural thyroid hormone that your body makes. It’s just given in the form of a pill. And so we just replace that in the form of a pill, and that’s the same thing you would give to adults. It’s very easy to take. It’s once a day. It can be swallowed, chewed, sucked on. It’s a very simple medication to give. So that’s a similar thing to what you would see in the adult population.
Speaker 1:
So before I let you go, do you have any words of encouragement for others out there like Bella who have both celiac disease and hypothyroidism on just the quality of life and how to get through life in a happy, healthy way?
Speaker 3:
Yeah, I mean, I think I realize it’s frustrating when you have a chronic condition and then you think you’re doing everything you can and then something else is sort of added on top. So I guess I would say number one, don’t beat yourself up. It’s not anything that you did, right? This is just, unfortunately the way that your body is has a tendency to develop these kind of conditions. So it’s something that we have to deal with.
Having said that, the thyroid piece in most people is not too big a deal to manage. Particularly to be honest, compared to celiac, which is sort of every day all the time, always being aware of everything you’re putting in your mouth or interacting with, that really I think has a huge mental burden for folks. Thyroid disease, fortunately in most people, is pretty easy to manage. You take a pill once a day, we have to check blood levels every so often, a little more often in younger kids, a little less often by the time you get to be an adult, it’s often every six months or even every year. So that if you can sort of take your pill once a day and get your levels checked in most people, it’s pretty easy to manage. So I would say don’t let that weigh too much on you and sort of stick with your medication. Hopefully that piece will be relatively smooth forward.
Speaker 1:
Well, thank you so much Dr. Wassner, for all of this wonderful information. We’re going to take a quick break and when we come back, we’ll have Sharon Weston, a dietician at Boston Children’s Hospital here to talk about strategies for maintaining a strict gluten-free diet, even when it feels like it’s not helping.
We’re going to take a quick break to hear from our podcast sponsor of the Global Autoimmune Institute.
Speaker 4:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Speaker 1:
Welcome back and welcome Sharon to the podcast. So Sharon, when I was interviewing Bella about her story, and she used the terms feeling defeated and depressed when she got the second diagnosis, I knew we needed your wisdom on how patients can deal with the devastating news of a second diagnosis. So what is your approach with patient families where there are two diseases they have to deal with and they feel as though the gluten-free diet hasn’t actually prevented anything?
Speaker 5:
Yeah, this is such a difficult thing. We know that the only treatment for celiac disease is to follow a gluten-free diet strictly, and this can be a challenge. It’s really important to take advantage of different support systems, which can include your physicians, your dietician, celiac team providers, which would include people that are from social work or even different peer supports from different support groups or family. And also focusing on foods that are naturally gluten-free in the diet so that you’re not just thinking about what you can’t have can also help.
Speaker 1:
Adherence to the gluten-free diet is key with celiac disease, and it’s hard to be told that despite your constant vigilance with the treatment for one disease, that you now have another. Can you tell our listeners why it’s important to continue sticking to the gluten-free diet even though they might think it hasn’t seemed to prevent development of another condition?
Speaker 5:
Yeah. Again, right now, the gluten-free diet is the only treatment for celiac disease and following a gluten-free diet is going to help optimize your nutritional status. It’s going to keep you healthy, but it’s not really related to preventing the development of other autoimmune conditions.
Speaker 1:
So Bella was an adult when she received her dual diagnosis, but for a young child, there are the emotions of both the child and of the parents, and they don’t always align. As we learn from last month’s episode, parents can often be the drivers of hypervigilance. How do we help parents understand the difference between appropriate vigilance and hypervigilance?
Speaker 5:
Well, first off, we want to try to live life the way that we did before just on a gluten-free diet now. And so that means doing your due diligence with regards to learning how to read labels and preventing cross-contamination and falling a balanced gluten-free diet. And so by doing some work in advance to understand how to do these things with competence, but not with fear, is important so that you can still enjoy life and all different activities.
Speaker 1:
Can you tell our listeners what a hypervigilant activity might look like?
Speaker 5:
So just like not going to parties or not going out to restaurants anymore would be a good example, and those things can really happen still by following a gluten-free diet, just doing some prep work in advance.
Speaker 1:
Absolutely. We want to really make sure that these families are getting to enjoy life and having that normal experience across being a kid, being a teenager, going to college and living life as a normal adult would.
Speaker 5:
Absolutely.
Speaker 1:
So our patient, Bella, thankfully, didn’t budge with her compliance with the gluten-free diet, but as you know, this isn’t always the case for other patients. How would you counsel a patient who decides they want to go back to eating gluten because they just don’t believe it’s working?
Speaker 5:
So unfortunately, this is something we see, especially if a patient doesn’t have obvious symptoms when they’re exposed to gluten. However, again, we know that following a gluten-free diet is the treatment for celiac disease. And we also know that exposure to just 50 milligrams of gluten, which is about 1/70th of a piece of bread, can cause damage to intestines. And so it’s really something that we don’t want to have happen causing that damage in the intestinal tract.
Speaker 1:
So if a patient is struggling with their gluten-free diet, how can they get the help they need, both nutritionally and emotionally?
Speaker 5:
Use your dietician. We really can help in so many different ways, and I really encourage families to use their dietician often, and we can come up with different food ideas, recipe ideas. Support groups are also a super important thing to take advantage of. So the celiac support group has ways to help kids of all ages through college and can be very helpful to just tap into that peer support component. So I think that just taking advantage of all of those different options can really be helpful.
Speaker 1:
I would also like to add that you can attend cooking classes, and I think cooking classes are a fantastic way to continue to be engaged in the gluten-free diet. And if you haven’t attended one of Sharon’s amazing monthly cooking classes, you absolutely should. So check out the Celiac Kids Connection, which you can find at celiackidsconnection.org to get the link to register for Sharon’s free classes. And I know Sharon, you’re off to prepare for one today.
Speaker 5:
Yeah.
Speaker 1:
So I think the recipes you’re doing today are teriyaki meatballs and teriyaki rice bowls, which I think sounds so exciting. You often think that meatballs and teriyaki sauce can’t be made gluten-free. So how are you making them magically gluten-free today?
Speaker 5:
Oh, yeah, this is a fun recipe. So we are doing chicken meatballs with gluten-free breadcrumbs in them, but also we’re mixing in grated zucchini and super easy to make in the oven. They come out and it’s enough to feed six people with just one pound of ground chicken. So it’s a very quick, easy recipe. And then we’re making a stir fried vegetable on the side and brown rice, and then we’re making our own homemade gluten-free teriyaki sauce with tamari and some honey and a little corn starch.
Speaker 1:
Well, it sounds delicious. I will let you go now so that you can get prepared for the class. But thank you so much, Sharon and to Dr. Wassner for all of the amazing wisdom you shared today. So now let’s skip ahead to my favorite part where we find out where Bella is today.
Speaker 2:
Today, Bella is 41 years old. She’s feeling much better about life than when she got her initial Hashimoto diagnosis. She follows a strict gluten-free diet and takes levothyroxine daily. She has regular follow-up visits with her gastroenterologist and endocrinologist and generally feels healthy and lives a full life. Her younger son, Casper, was diagnosed with celiac disease last year at nine years old after his pediatrician started in investigating ongoing anemia and skin rashes. Her entire family is supportive of the gluten-free diet, and in fact, just returned from a family vacation on the Celiac Cruise.
In her own words, “20 years ago, I wouldn’t have believed you if you said I would end up with two autoimmune diseases, and I’m devastated I passed one onto my son. But today I’m feeling like the diagnosis was a blessing in disguise as it has led my family to where we are today. I’m now part of a community of families with celiac disease where everyone gets it. We’ve become best friends with others who are living the same life as us, and we are genuinely happy.”
Speaker 1:
Thanks for listening to this episode of Raising Celiac. Special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social @bostonchildrensceliac on TikTok, @childrensceliac on Twitter, or @celiackidsconnection on Instagram. Have a great month.
8/17 Episode 9: Laws and Regulations that Govern Celiac Disease
Expert Guests:
- Mary C. Vargas, Partner, Stein & Vargas LLP
Learning objectives:
1.) Describe federal laws that govern celiac disease.
2.) Explain the rights of patients with celiac disease to receive accommodations in the school setting.
3.) Understand the role of a medical provider in helping a patient with celiac disease gain access to appropriate accommodations in the school setting.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the Celiac Program at Boston Children’s Hospital. And each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient’s family, the latest research, and offer suggestions for health providers to manage these complex cases.
Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA category one credits for physicians, 0.5 contact hours for nurses, 0.5 ACE CE continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit DME.Childrenshospital.org/raisingceliac.
Let’s get started with this month’s Raising Celiac patient story.
Speaker 2:
Rachel was a vibrant and energetic child. She was born in Singapore while her father was completing a research fellowship at a prestigious university, but her family moved back to San Diego when she was four years old. Her father was a professor of economics at the University of California San Diego, and her mom owned an Asian fusion restaurant near the beach that made the best dumplings in town. She had two brothers, both older than her. While many assumed she would grow up a tomboy, it was quite the opposite. Her brothers had no problem hosting tea parties with their little sister, and they regularly practiced dances with her while her parents were busy working.
Rachel never had many health problems or complaints. The common cold here and there, but nothing all that remarkable. It wasn’t until she was eight years old and getting fitted for her dance costume that the elderly seamstress commented on her rather bloated belly. “Your belly and those skinny little legs remind me of how my grandson looked before he was diagnosed with celiac disease. You should tell your mother to ask your doctor if gluten is bad for you,” the seamstress exclaimed.
Rachel completely forgot about the conversation and didn’t mention it to her mother. Months went by until the word celiac came up again. Rachel was getting her hair cut and the stylist said her hair felt dry and brittle and was coming out in clumps on the brush in a way that didn’t seem right for an eight-year- old. The stylist went on to tell Rachel and her mom about a past client with similar hair who went on to be diagnosed with celiac disease. She was totally baffled that eating gluten made her hair fall out.
That afternoon, Rachel and her mom looked up celiac disease online. Rachel never felt sick, rarely had diarrhea, and no foods seemed to bother her, but she agreed that her belly was a little funny looking, roundish like a small basketball under her shirt, and her hair was falling out.
Vanessa Weisbrod:
Digestive symptoms like bloating, gas and abdominal pain are common in children with celiac disease. The good news is that once diagnosed and following a strict gluten-free diet, these symptoms will go away. However, celiac can sometimes be challenging to diagnose because doctors often look for expected gastrointestinal symptoms like diarrhea, abdominal pain, and weight loss. That’s why it’s important that a child be seen by specialists who have lots of experience with the different ways that celiac can appear in kids.
Speaker 2:
Rachel’s mom scheduled an appointment with her pediatrician, but admittedly felt a little unsure if her daughter really needed to see a doctor. She wasn’t complaining about symptoms, but it couldn’t hurt to have her checked out. The pediatrician examined Rachel’s belly and suggested running some blood work just to make sure nothing was going on. He included the tissue transglutaminase antibody test, as well as several other tests for nutrient deficiencies.
Vanessa Weisbrod:
Malabsorption of vitamins and minerals can cause an array of nutritional deficiencies, which can affect many parts of the body, including hair growth. Even in cases with mild nutritional deficiencies, patients may experience changes in their hair, with many reporting their hair feels brittle and damaged. Some experience thinning hair while others may have a rash or dermatitis on the scalp. Other conditions related to celiac disease like Hashimoto thyroid disease and alopecia can also cause issues with one’s hair.
Speaker 2:
Six days after getting her blood drawn, Rachel’s doctor called with the results. Her tissue transglutaminase antibody levels were over 200, and she was significantly B12 deficient. She was referred to a pediatric gastroenterologist and four weeks later had a positive biopsy for celiac disease.
At the time of her diagnosis, the gastroenterologist reminded Rachel’s family that they all needed to be screened for celiac disease. Within the next two weeks, Rachel’s father and one of her brothers, Aiden, were also diagnosed. While they were all seemingly asymptomatic, as they learned more about celiac disease, they realized that her dad’s headaches and her brother’s frequent mouth sores were likely caused by celiac disease.
It was currently the start of summer vacation, and Rachel’s family transitioned seamlessly to a gluten- free diet at home. They removed gluten from their entire kitchen, and her mom even converted her entire restaurant to be gluten-free. She wanted everyone to be able to eat safely at her restaurant regardless of dietary restrictions, so she undertook a complete menu redesign to convert every single dish to be gluten-free and have alternatives for other food allergies as well.
The food tasted so delicious that no one noticed the shift to using gluten-free ingredients. Life seemed to be going great until the week before school started, and Rachel’s mom remembered she needed to contact the elementary school about accommodations for both Rachel and Aiden. She started reading online about the types of accommodations she should ask for and quickly got overwhelmed.
Vanessa Weisbrod:
There are approximately 74 million school-aged children in the United States alone, thus an estimated 740,000 schoolchildren who require a gluten-free diet for celiac disease. Celiac can cause significant effects on children and their families as well as on the school they attend. We know that many children and teens do not follow a strict gluten-free diet and most often consume gluten-containing foods during meals with peers.
Kids also risk being exposed to gluten at lunchtime, during class celebrations, and cross contact with gluten containing materials like Play-Doh, paper mache, art supplies, science experiments, and cooking classes.
Speaker 2:
Rachel’s mom quickly learned that her children would both need a 504 plan to document their accommodations at school. She reached out to their gastroenterologist to get a copy of their diagnosis letters and forwarded them along to the school nurse with a request to set up the plans. She expected a quick response from the school and a warm welcome to come in to develop the 504 accommodation plan.
What she got was quite the opposite, a cold reply informing her that the school would not offer a 504 plan for celiac disease because neither Rachel nor Aiden had any troubles academically. Celiac disease did not impact their ability to learn, and therefore they didn’t qualify for a plan. They could order gluten- free options in the cafeteria by contacting the food service provider themselves.
Vanessa Weisbrod:
The Americans with Disabilities Act of 1990 defines a disability as a physical or mental impairment that substantially limits one or more major life activities. Eating, digestion, and immune function are all considered major life activities, meaning that celiac qualifies for protection under this law. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination based on a disability in all institutions receiving federal financial assistance, including schools. It requires institutions to provide educational programming that is designed to meet the student’s individual educational needs as adequately as the needs of non-disabled students are met.
This means that a child with celiac must have access to all programming, including breakfast and lunch programs, that does not put them at risk for a gluten exposure while still allowing them to fully participate in the activity. It’s important to know that any accommodation provided under this law must be considered reasonable.
There are several types of plans that schools can develop to help children with a medical condition succeed. For a child face celiac disease attending a public school or an institution that receives federal funding, he or she should have a 504 plan in place. The 504 plan is a legally-binding agreement that addresses accommodations in academic areas, but also in all other school-sponsored activities like sports, clubs, and parent-teacher organization events.
The 504 plan documents the accommodation that will allow the child to fully participate in all educational and social activities that are sponsored by the learning environment. What’s important to note about this type of plan is that academic performance is not a factor in determining eligibility. Even an A plus student is eligible. The goal with the 504 plan is to set up a clear path for inclusion and safety for the child with celiac disease.
Speaker 2:
Feeling a bit defeated by the email reply from the school nurse, Rachel’s mom did some more digging and reached out to the social worker affiliated with their gastroenterologist’s office. The social worker confirmed everything she had read online about the 504 plan being the most appropriate type of plan for a child with celiac disease at school. She reviewed the types of accommodations that should be documented in the 504 plan, like having gluten-free materials in the classroom, access to gluten-free breakfast and lunch at school, accommodations for field trips and extracurricular activities, and provisions for using the bathroom when needed.
The social worker also provided Rachel’s mom with a copy of the 2020 voluntary recommendations for managing celiac disease in learning environments, which helped her better understand the laws. After reading all of these materials, she started drafting a reply to the school nurse that very clearly
documented the request for a formal 504 plan meeting. The nurse wrote back again saying a 504 plan was not possible, but they could meet to discuss a health plan. Again, Rachel’s mom felt defeated.
Vanessa Weisbrod:
Some children with celiac disease may have an individualized education plan, or IEP for short. This type of plan would be appropriate if the child also has a disability that directly affects their academic performance like dyslexia, ADHD, autism, virtual impairments or speech language difficulties. Celiac disease accommodations could be added to the IEP documents specific with ways to manage the gluten- free diet in school.
Unlike the 504 plan, the IEP requires there to be measurable annual goals and objectives for the child’s education. The other type of plan some schools offer is called an individualized healthcare plan, or IHP. This plan is not legally enforceable, but deals with handling medical issues in the school’s setting, such as responding to a child who is ill from a gluten exposure. For a child with celiac disease, an IHP could accompany a 504 plan or IEP, but should not be the standalone plan.
So how do parents know which type of plan their child should have? What do they do if the school is unwilling to set up a 504 plan? Where do they turn to for help, and what should a child with celiac disease expect in the school environment? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about celiac disease and accommodations in the school environment with Mary Vargas of Stein and Vargas, LLP. Mary is committed to ensuring full and equal access for all individuals. She has litigated landmark cases pursuant to the Americans with Disabilities Act and the Rehabilitation Act throughout the United States in federal and state courts, including our Argenyi versus Creighton University, Featherstone versus Pacific Northwest University, and JD versus Colonial Williamsburg Foundation.
Ms. Vargas speaks nationally on issues including disability discrimination, food allergy and anaphylaxis, and celiac disease. Mary, welcome to Raising Celiac.
Mary Vargas:
Thank you. I’m so happy to be here.
Vanessa Weisbrod:
So let’s start with discussing how celiac disease qualifies as a disability.
Mary Vargas:
Sure. So celiac disease causes substantial impairment of major life activities. It impacts multiple body systems, and as a result of that, it meets the definition in federal law to qualify as a disability.
Vanessa Weisbrod:
What are the legal rights of a child with celiac disease in the school setting?
Mary Vargas:
So in both public and private schools, students with celiac disease have a right to full, equal and safe participation. They have a right to be present in the classroom, to have access to the same programs and
services as students without disabilities have, as well as the right to have accommodations and modifications to make sure that they’re safe and well and able to participate in school.
Vanessa Weisbrod:
So you’ve been at the forefront of legal disputes regarding celiac disease as a disability. Can you tell our listeners about these cases and how we got to where we are today?
Mary Vargas:
Sure. So the Americans with Disabilities Act was amended to ensure that courts were not focusing so much on whether somebody’s disability impaired their life enough and was focusing more on ensuring access. So prior to the amendments of the ADA, there were cases that held that things like food allergies and celiac disease might not qualify as a disability. Once the law was amended, those concerns were refocused by Congress on ensuring access. So after the amendments to the ADA, we were able to litigate cases throughout the United States establishing that things like celiac disease and even non- celiac gluten sensitivity can qualify as a disability within the meaning of federal law.
Vanessa Weisbrod:
So why a 504 plan for a child with celiac disease?
Mary Vargas:
A 504 plan because the way to have a good relationship with a school and the way to ensure your child’s legal rights are respected is to have everybody agree on what needs to be done, what legal rights the student has, what obligations the family has, what obligations the school has.
The 504 is an enforceable document, but more important, it’s a meeting of the minds. It’s an opportunity for the school and the parents to talk about important concerns and how those concerns are going to be addressed, hopefully before there are disagreements.
Vanessa Weisbrod:
Absolutely, and the before disagreements is definitely key here. So for our patients, Rachel and Aiden, their school said that they didn’t need a 504 plan because they were academically doing just fine. Why is this wrong?
Mary Vargas:
So that kind of old school thinking is legally incorrect, but it also embodies negative views about disability, that you’re only entitled to legal rights if you’re somehow less than, if you’re somehow not performing. And that’s not really the point. The point is everybody has a full and equal opportunity to participate.
If a student has celiac disease, they will need accommodations in the classroom, modifications to ensure that they can participate equally, and it doesn’t depend on whether their grades are good or not. It doesn’t depend on how they’re performing in the classroom. It depends on whether they have a disability and if they have a disability, what accommodations that disability requires in order for them to be healthy and safe and participating in the classroom.
Vanessa Weisbrod:
So tell our listeners about what the child will need to provide to their school to get a 504 plan.
Mary Vargas:
So the first step is contacting the school district and requesting a meeting to determine eligibility for
- Typically, what’s provided in the case of a celiac disease diagnosis or a non-celiac gluten sensitivity diagnosis is a letter from a appropriately-credentialed specialist, a gastroenterologist, a celiac disease program or their treating provider, explaining that they have a diagnosis and that it substantially impairs major life activities.
It’s helpful if that letter says a little bit about how that diagnosis impairs their major life activities. Now, sometimes we see that school districts ask to have direct conversations with specialists. I don’t generally recommend that. I think it’s important to make sure that the conversation is appropriately limited to the information that a school needs in order to determine eligibility and not a broad release to discuss all aspects of a student’s private medical history.
Vanessa Weisbrod:
And for celiac disease, it can be pretty simple, right? Eating and digestion are very major bodily functions that we all need.
Mary Vargas:
Right. For those of us who have celiac disease or have a loved one who has celiac disease, it seems abundantly obvious that a celiac diagnosis substantially impairs all aspects of life. Not that it needs to limit a person, but it does impact their eating. It can impact their concentration, it can impact their ability to be at school when they’ve been exposed to gluten and are having flares of their symptoms.
Vanessa Weisbrod:
For sure. So what types of accommodations should parents expect to see in a 504 plan?
Mary Vargas:
So first of all, I find that the best way to develop accommodations plans is not to come in with a cold- hearted list of everything that you think your student needs. Certainly it’s helpful to have notes and an idea of accommodations that your student might need, but it’s important to recognize that the school also has expertise in how the classrooms are run and how their meals are served, and it’s helpful to be able to have a conversation with the school about where there are going to be issues and then work cooperatively with the school to identify solutions to those issues.
So thinking about when is there food in the classroom and how to make sure that students have a full and equal experience in those opportunities. It’s helpful to think about what policies are on absences. It’s helpful to think about what policies are on access to the bathrooms.
It’s pretty common, for example, in high schools now for students to have quite limited restricted access to bathrooms. If that’s the case, it’s an important conversation to have to make sure that a high school age student particularly is not being limited from access to the bathroom and has ready access to the bathroom when they need it.
It’s important to think about field trips. It’s important to think about classes, like whether there are home economics-type classes that might involve cooking or eating or science experiments that involve preparing pizzas with potentially flour and gluten or eating and tasting things in order to conduct lab
experiments. There are lots of ways that food is in the curriculum and is ingrained in our school systems, and it’s important to think about each of those kinds of contexts and how to make sure ahead of time that everybody’s agreed on how to handle those barriers.
Vanessa Weisbrod:
My favorite one this year has been the moldy bread experiment, which has been revitalized where they’re rubbing pieces of bread on every surface in the school building. I thought this one had gone away, but no, it’s back.
Mary Vargas:
And one of the challenges that I do see, particularly when asking doctors to write letters supporting disability determinations and accommodations, is that often doctors are not necessarily aware of how pervasive food is in modern classrooms, how often there are science experiments like rubbing bread on people and places and doorknobs that you just wouldn’t expect. How often there are classroom parties and birthday celebrations. That varies from school district to school district, but in some school districts it’s very frequent, omnipresent, and given that, it’s particularly important to make sure that celiac students are included and are not on a very regular basis excluded from opportunities that other students have.
Vanessa Weisbrod:
Absolutely. So what should parents do if their child’s school refuses to provide a 504 plan?
Mary Vargas:
So first of all, I think it’s important to be prepared to have a level-headed, respectful conversation. When you have a child with celiac disease and they’re denied services, it hits kind of a primal place. And I know as a parent myself that sometimes it’s hard to take a deep breath and remember that it’s important to establish a long-term good relationship with the school. If the response to that refusal is immediately escalating in emotion in response, that can break down a relationship down the road.
And often what’s really needed is to open a respectful dialogue, to ask for a meeting, to bring documentation from your specialists so you can provide the information that’s needed, to highlight examples of where there are barriers, for example, that have nothing to do with whether a child is an A student or not, and talk about how to address those. There are materials available on how to manage celiac disease in the classroom. You can certainly provide those to a school district, but often if you open that kind of conversation, the refusal, the school will rethink that refusal. Many times it’s not necessary to go to, for example, due process or some kind of legal proceeding to actually obtain a 504. Often a respectful conversation with the appropriate documentation required will prompt an equally respectful response from a school.
Vanessa Weisbrod:
So let’s talk about food at school. Are schools required to provide a safe gluten-free option for students with celiac disease?
Mary Vargas:
Yes. So this is something that I see commonly not understood and not happening. But yes, schools are legally obligated to ensure full and equal access, including in diets. And when there are diets provided for students, there needs to be a safe gluten-free diet provided for celiac students as well.
Vanessa Weisbrod:
Can a school suggest that in an accommodation for a gluten-free meal is requiring the child to bring it from home?
Mary Vargas:
No, that can’t be required. Now, first of all, there are some parents who will affirmatively ask to be able to bring their own food, who will choose to do that, but you can’t force a parent to do that and doing so not only as unlawful, but it burdens families who already are facing increased costs for purchasing gluten-free food. It requires them to do something that other parents don’t have to do, and oftentimes it places a financial burden on parents that they’re simply not able to sustain.
Vanessa Weisbrod:
Yeah. And this has become such a big thing, especially in Massachusetts where meals have been free since the pandemic, and having access to safe meals at school has been a really huge help for families where money is an issue.
Mary Vargas:
That’s right, and federal law doesn’t say we can provide a benefit to some students and not to the students with disabilities. It says there has to be full and equal access. It says you can’t provide lesser benefits to students because of their disability. And so where school districts or states are providing meals to students, they can’t say legally, “We’ll provide meals to students except those with celiac disease or food allergies.”
Vanessa Weisbrod:
So we are so lucky that since Covid, meals in Massachusetts have been free, and hopefully by the time this podcast is airing, our governor will have signed the legislation making that permanent so that kids will always have access to free foods at school. Regardless of what the policy is regarding paying for meals or getting them for free, can a public school charge a family more for gluten-free meals for a child with celiac disease?
Mary Vargas:
Absolutely not. Federal law is crystal clear that you cannot impose surcharges on the basis of disability.
Vanessa Weisbrod:
Are schools required to implement basic measures to prevent gluten cross contact in the cafeteria?
Mary Vargas:
If there are students with celiac disease who have 504 plans and cannot be exposed to cross contact in the cafeteria, yes, school district would have to implement those kinds of basic protections.
Vanessa Weisbrod:
So let’s talk about school trips like outdoor education and trips to New York City or Washington DC. Do schools need to accommodate the gluten-free diet for students during these types of activities or is it on the contractors who run the trips to accommodate?
Mary Vargas:
So under disability law, a school district can’t contract out its responsibilities to ensure full, equal and safe access. So while a contractor, for example, a company that provides a school trip may have its own obligations not to discriminate, that does not alleviate the school district of responsibility to make sure that its students are free from discrimination in all of its activities, including field trips.
Vanessa Weisbrod:
So would the school then work with whoever is coordinating the trip to plan for the meals for the student, or who does that fall to?
Mary Vargas:
I’m not sure that there’s necessarily a clear delineation of responsibility other than to say that the school is ultimately responsible for ensuring that they’re not discriminating on the basis of disability. But in practicality, it often requires a joint effort of the school, the contractor, and the parent to discuss what kind of meals are being provided, to discuss what kind of dietary needs a student has, and then to figure out the best way to accommodate those needs.
Vanessa Weisbrod:
And probably ultimately some responsibility on the student themselves to understand their own needs and advocate for themself when they’re away from their normal home base.
Mary Vargas:
In an age-appropriate way, yes. I see all too often that students who are placed in situations like this, though, go without eating rather than eat something that they don’t have any way of verifying whether it’s safe and rather than drawing attention to themselves by asking hard questions about whether a food is safe for them to eat.
So while a student certainly does need to advocate for themselves, that obligation remains squarely on the shoulders of the school. And where a student is opting not to eat because they don’t have the information to know whether they can do so safely, that would concern me.
Vanessa Weisbrod:
Yeah, you bring up such a good point. I think about just my own nine-year-old son who has celiac disease and how many times he’s told me he chose not to eat something because he was uncomfortable having that conversation or he didn’t know who to ask to have that conversation. So it is definitely a burden.
Mary Vargas:
I see that with my own. I have three children, two of them have celiac disease, and I see that with them as well. One is in high school, one is in college. They both often opt to, I think their words would be not make a spectacle of themselves, something like that. It’s a really hard thing to do in a school setting for a student to not only ask the questions, but to trust the answers.
Sometimes somebody who’s not necessarily fully up to speed on cross contact or on what foods contain gluten is the only person the student has access to to ask a question, and the student may rightly recognize that the answer they give them is not one they can rely on. So it puts them in a position of sort of challenging authority in a way that is not always fair, I think, to expect of students.
Vanessa Weisbrod:
Absolutely. So what happens when things don’t go well? How often do troubles actually result in legal action?
Mary Vargas:
They don’t result in legal action that commonly. I would say everybody makes mistakes. Schools make mistakes. I would be prepared that there will be moments where a school district does not follow a 504 plan to the letter. And what I’ve seen works best is to, in a respectful way, call a meeting, call up and have a discussion and talk about those situations.
There should never be a situation where someone resorts immediately to legal action. You are developing a long-term relationship that’s cooperative and respectful with a school district. If there has been a mistake made, there needs to be action taken to recognize where the mistake was and to fill in whatever gaps there were in the plan or in the teacher’s or professional’s understanding of how to implement the plan in order to make sure it doesn’t happen again.
Where I see legal action is where typically, unfortunately, where there’s repeated attempts by a family to ensure compliance with the law, and unfortunately, there are times when school districts repeatedly refuse to comply or repeatedly fail to comply in ways that are dangerous. And we’ve seen, unfortunately, you described the situation where people are rubbing bread on walls and doorknobs and other people. We’ve seen situations where teachers will initiate activities of throwing food products in the classroom.
Crazy things happen in schools these days, and where there’s an ongoing pattern of refusal to do what’s necessary to keep a student safe and included, that’s where there tends to be legal action as a last resort.
Vanessa Weisbrod:
So we have hundreds of medical professionals who listen to our podcast. Can you talk to our listeners about how the medical community can support their patients with celiac disease at school?
Mary Vargas:
If there was one ask I would make of medical professionals, it’s when you’re asked to write a letter documenting disability and saying what accommodations a patient needs. For some reason, doctors, they’re trying to be polite and deferential to educators. They often use language that says something like it would be helpful or it would be beneficial if my patient had whatever accommodation, if they had access to the bathroom, if absences were excused when they were caused by disability.
What we really need doctors to do is to say what’s needed. It’s not impolite to say a patient needs this accommodation. And so that change in language is really helpful to schools to understand what they need to do and that accommodations that are being requested, they’re not just, gee, it would be nice. They’re accommodations that are really needed for a student to be safe and included.
Vanessa Weisbrod:
So thank you Mary, so much for this great information. We’re going to take a quick break and when we come back, we’ll be discussing celiac and accommodations in the college environment as well as in the workplace.
We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.
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Vanessa Weisbrod:
Welcome back. Let’s dive into college life and beyond. So Mary, one of the biggest complaints we hear from our college-age patients is that they are required to purchase expensive meal plans, yet they have access to very limited gluten-free food choices. Tell our listeners about the meal plan cases at Lesley University and Rider University and how these cases have impacted how colleges must accommodate the gluten-free diet.
Mary Vargas:
So the United States Department of Justice got involved in looking at what obligations a college or university has with respect to a student who has special dietary restrictions in these two matters, Lesley University and Rider University. And these were settlement decisions between the United States and these universities that said you can’t require a student with special dietary restrictions, whether because of celiac disease or food allergies, to purchase an expensive meal plan when they can’t benefit from the meal plan in the same way that students without these disabilities can.
Now, at the time these settlements happened, colleges weren’t doing a particularly good job in terms of serving students with medically necessary dietary restrictions. There has been enormous revolution in food service at college since these decisions, and I would say because of these decisions.
Because these decisions said that you can’t require a student to buy into a meal plan, universities and food service companies started recognizing that they had a financial incentive to provide full and equal service to students with medically necessary dietary restrictions, or these students could opt out of the program and use their funds to purchase their own safe food.
There are universities and colleges now who do an extraordinarily good job in providing safe, healthy, nutritious food service to all of their students, including their students with disabilities related to diet. However, there are also still universities and colleges that do not adequately serve students with the result that students cannot be forced to buy into meal plans where they can’t safely and equally partake in dining services.
Vanessa Weisbrod:
I actually met a young woman last week who was telling me about her experience with dining in college, and it took her quite a fight to get out of having to pay for the meal plan because there wasn’t food available for her in the dining hall. But what she was the most upset about is that once they did refund her, she was no longer able to access the dining hall, so she couldn’t go in and sit with her friends while they would eat. Her card was turned off to enter the facility altogether, and so she felt really isolated that she couldn’t go and sit to eat with them. And she said that it took numerous calls from her doctor,
from her parents, to really advocate that she could just go in the building to be able to enjoy that social element of being with her peers while they ate, even though she wasn’t eating with them.
Mary Vargas:
That’s so critically important. It’s not just eating that happens at a table. As we all know, whether we’re in college talking about group projects or talking about social events or bonding or doing study sessions over meals, or whether we’re adults working full-time jobs where we’re having business lunches. So much happens around a meal that’s not just eating.
And so disability discrimination requires full and equal access. So in the situation you described, certainly I would say it would be discriminatory to prohibit a student from access to a university space that other students have access to and not allow them equal participation in what happens in a dining hall regardless of the fact that they may or may not be able to eat.
There are other challenges when a student opts out of a dining plan, and this is something I unfortunately have personal experience with. I have a college-age student with celiac disease, a dining service that was not able to safely meet his needs in terms of eating. All kinds of issues arise in terms of, where’s the student going to cook food? Where’s the student going to keep their pots and pans and utensils? Where’s the food going to be stored? Do they have access to a refrigerator and a freezer of adequate size and space? Do they have access to food?
There are so many issues, practical issues that come up that it’s not simply a matter of we can allow you to opt out of the meal plan and we don’t have to do anything else. That’s not the case. If a student opts out of a meal plan, it’s because they don’t have the ability to safely eat with a meal plan. It’s not an ideal situation for most students to have to be able to prepare their own food, and it’s important to look at making sure that they can do so in a way that doesn’t take away from their studies and doesn’t unduly burden them.
Vanessa Weisbrod:
As you’re describing this, I’m thinking back to my college days. I was diagnosed as a senior in college, and thankfully I lived in an apartment off-campus and I had a grocery store two blocks away, which made my life very easy. But if I had been diagnosed during my freshman or sophomore years where I was in a small dorm with no kitchen, it’s giving me anxiety just to think about how I would’ve managed it.
Mary Vargas:
So my son was in a small dorm with no kitchen facilities, a college-size, dorm-size refrigerator with essentially no freezer, and he was in a part of the country where it regularly gets to 25 below zero. So he was carrying his pots and pans to a kitchen across campus and going to the grocery store every day because he couldn’t store food.
That’s an area where doctors can really help in terms of providing documentation instead of simply saying, “This is a student who needs accommodation because of celiac disease, this is a student who cannot safely eat on the meal plan,” this is a situation where a doctor could really talk to their patient about what’s hard about doing this.
And in our case, we were able to provide documentation of saying, my son couldn’t store food in a college-sized mini fridge. He was carrying his food across campus. It was not sustainable, and he was losing weight as a result, he was losing study time. And so his doctor, his specialist, was wonderful and was able to have a more robust conversation with him about these concrete examples of where he
needed accommodation and then was able to put that in the documentation so the college could understand what it really means to not have access to a kitchen or a meal plan when you’re in college.
Vanessa Weisbrod:
Right. So where is your son now? How is he functioning or how will he be functioning in the fall?
Mary Vargas:
So after a year dragging his pots and pans across campus from a dorm fridge to a shared kitchen across campus, his wonderful specialist had that conversation documented in concrete ways that not only did he need to opt out of the meal plan, he needed a full-size fridge with a freezer. He needed a place to store his food, to store his utensils, and he needed access to prepare those meals that didn’t take away from his educational experience by having to go shopping every day, by having to sit in a shared kitchen for hours without being able to study while his food was cooking.
And based on that documentation, his college disability services allowed him access to live in a town home with a kitchen, which is the most enormous relief for him to actually just be able to cook and eat food. Without that kitchen, he was not eating. He was eating maybe a meal a day at best, and he was losing a lot of weight. That’s not sustainable, that’s not equal access. And with the right documentation, he was able to get an experience that will hopefully be much more like the experience that students without celiac disease have.
Vanessa Weisbrod:
Wow. Well, I’m glad to hear that he will have a better living situation for next year. It normalizes it that even someone like you who’s so well versed in these areas can experience these hardships like all the other parents out there with kids with celiac disease.
Mary Vargas:
It was eye-opening to me to be the parent in this situation, and there were all kinds of barriers that I encountered, practical barriers that will forever change how I advocate for clients. Things like when my student was needing emergency care and had no access to safe food, a school not wanting to talk to me about my child’s accommodation needs. When I’m contacting a school as a lawyer, I get a very different response. But when you’re the parent, sometimes schools put up barriers to communicating and advocating for a student that have very significant practical consequences.
Vanessa Weisbrod:
Absolutely. So does the 504 plan transfer to the college setting, or is it a different type of plan?
Mary Vargas:
So yes and no. So 504 plan, that terminology is really only used K through 12. That terminology is typically not used in colleges. However, 504 plan, that terminology comes from section 504 of the Rehabilitation Act, which is the federal law that says anyone who receives federal financial assistance can’t discriminate on the basis of disability.
That law applies K through 12. It applies equally in colleges and universities, which really all accept federal funding. They cannot discriminate on the basis of disabilities. They also have obligations under the Americans with Disabilities Act not to discriminate. So while it may not be called a 504 plan, the obligations to ensure access to make accommodations or modifications, those remain.
Vanessa Weisbrod:
Do all colleges and universities have to accommodate celiac disease and does it matter if it’s a private university or a state school?
Mary Vargas:
All colleges and universities have to make accommodations for students with celiac disease. I have never seen a college or university that would be exempt from that obligation, because all colleges and universities take federal funding in terms of student loans and things like that, and typically other kinds of federal funding related to research and other things. And because the Americans with Disabilities Act applies to both public and private colleges and universities. So between those two laws, every college or university will have to make accommodations for students with disabilities.
Vanessa Weisbrod:
So we typically advise college students to work with their Office of Disability Services to get a plan set up. What are some key resources students can use if their university team is not supportive of accommodations for celiac disease?
Mary Vargas:
So this is a challenge, and where universities are not supportive of accommodations for celiac, it often comes from a place of not having done it before. So we see that students have to be very proactive in sending emails, documenting repeated requests for accommodations, explaining what they need in terms of housing, in terms of meal plans, and having dialogue with disability services offices.
I have seen, every fall particularly, college students who do a great job advocating for themselves, but who unfortunately sometimes are stonewalled and despite their advocacy, are not given the accommodations they need in a timely manner. When that happens, when the requests have been documented by email or otherwise in writing, it’s important for a student to know when to get support, whether from a parent or a doctor or another loved one to support and scaffold their requests for accommodation. And when that doesn’t work, to go higher up in the university chain of command, whether it’s to deans of students, president of the university, or all of the above to make it clear that there is a legal obligation that’s not being met.
Unfortunately, sometimes that still doesn’t work, and that’s when students need to seek legal counsel in order to make sure they get the accommodations that they need.
Vanessa Weisbrod:
How hard should a student push for accommodations before they come to a lawyer for support, and how often do cases like Rider and Lesley come up or it ends with an actual case?
Mary Vargas:
So unfortunately, I’m seeing students have to advocate for themselves a lot harder than I think they should, particularly students with celiac disease. I think universities are doing a better job with food allergies than they are with celiac disease as a general statement.
Typically, students don’t need to resort to litigation, but they do often have to be incredibly persistent and go up the chain of command to clearly state what their medical need is, to clearly state what their accommodation need is and to make sure that that accommodation request is granted. I don’t ever
mind talking to students who are struggling in advocating for themselves, and there are resources that are available to students to have those kind of conversations.
Short of retaining an attorney to represent them and write letters or litigate, often attorneys can provide support that’s short of that. It is unusual to have to litigate against a university. But I would also say that part of the reason that students aren’t litigating against universities is it’s very challenging for students to find attorneys and to afford attorneys to represent them.
Vanessa Weisbrod:
Absolutely. So let’s shift to graduating from college and getting a job. Do all of these laws we’ve discussed apply in the work setting?
Mary Vargas:
So in the work setting, typically we’re talking about Title One of the Americans with Disabilities Act, which applies to employers and requires employers to make accommodations not only in the interview process, but in terms of employment. And accommodations you might see, typically celiac disease doesn’t have accommodations so much that are necessary in the interview process, although it is possible for those kinds of needs to occur.
More commonly, you see it where somebody needs to be able to take a break. For example, somebody who works at a grocery store at a cash register, they might need to take an unscheduled bathroom break if they’re having symptoms flare. They might have days when they’re out that would not require a letter from a doctor. It’s really a symptom of a known disability that they were exposed to gluten and they became ill and were unable to go to work.
So there are those kinds of things. The other kinds of accommodations that we see in employment is around conferences and events that are related to employment that include meals, and there is a growing industry of event planning and conference planning that’s really focusing on ensuring access for people with food allergies and celiac disease. That is a legal obligation. You can’t have a conference where you send employees and they don’t get to eat. They need to be able to safely eat, and in some cases, employers might have to provide them a comparable budget in order to purchase their own food where a meal that’s being provided to other employees is simply not safe for them.
Vanessa Weisbrod:
What about with benefits? So we hear often that a company provides breakfast and lunch in the company cafeteria to employees, but there aren’t gluten-free options. Is there an obligation to have a gluten-free option?
Mary Vargas:
I say that there is. You cannot discriminate on the basis of disability in all of the aspects of employment, including benefits such as free meals. If employees without disabilities have access to breakfast every day that’s free, then employees with disabilities need to be provided that same access.
Vanessa Weisbrod:
I was on a recent trip and on the airplane I met a medical student, or a former medical student who’s now in residency, and she had celiac disease, and she was telling me about how during her residency interviews, it was one of the most challenging times of her life because she was flying all over the country. She had more than 10 interviews at different medical centers around the country, and they
were bouncing between interviews all day long, and there were these very short windows of time when she had to eat and all the food was just brought to them in boxes.
But no one ever asked her if she had any food restrictions. And so she just didn’t eat for these whole long days where she’s expected to perform at her best and to impress the panel of people evaluating her for their programs. And so we had a really interesting conversation about how she regretted not telling them about her celiac disease during the process, but she also felt intimidated to tell them that she had special needs going into an interview.
Mary Vargas:
That’s a really challenging situation, and it’s very much a personal decision whether people decide to disclose their need for a special diet or not in the interview process. Particularly for medical residents, that’s a very high pressure situation. It’s very competitive. There is no obligation to disclose a disability unless and until you need accommodation.
And so lots of people don’t want to disclose their disabilities for very good reason in the interview process, or for example, in the residency process. We spend a lot of time talking with clients about the pros and cons of when to disclose, and that’s ultimately very much a personal decision. But if a person wants accommodation, they do need to ask.
There are reasons not to ask. Once that information is disclosed, you’ve given up your legal right not to disclose it, and people don’t always want to share and are not required to share personal medical information unless they’re seeking accommodation based on disability.
Vanessa Weisbrod:
That’s a really, really good point. So thank you, Mary, so much for all of the wisdom that you have shared today. Now let’s find out where Rachel and her family are today.
Speaker 2:
Rachel and her brother Aiden are now in middle school and are doing very well on the gluten-free diet. Rachel’s once bloated belly is gone and her hair is full and healthy. Aiden’s mouth has no more sores and their dad’s headaches have disappeared. It took tons of advocating from their mom to get their initial 504 plans in place, but with the help of their GI social worker, they were able to get the school to agree to implement a 504 plan.
Rachel’s mom describes a social worker who helped them as a saint with muscles of steel. The 504 plans include provisions for both children eating a safe gluten-free lunch at school, as well as materials in their classroom and an arrangement for their parents to be involved in the planning of any offsite activities or special events. These two 504 plans were the first their school district had issued for celiac disease, but are certainly not the last.
As a result of the difficulty she had with getting 504 plans set up, Rachel’s mom has worked tirelessly with their school district’s parent-teacher organization to organize regular events to raise awareness of chronic diseases in their school system and look for ways to include children with celiac disease, food allergies, diabetes, and asthma in all school-sponsored events.
Rachel now plays for her middle school soccer team, and Aiden is on the basketball team. They’re both a part of their respective grade’s student councils and have ensured that for the last two years that every baked sale and candy sale include gluten-free, allergen-free, and food free options so everyone could participate.
In her own words, Rachel says, “When I was diagnosed with celiac disease, I didn’t realize how much advocating I would have to do. I’m so thankful my mom did such a great job with creating gluten-free options for us at home and in her restaurant, but I’m even more grateful that she has helped us be so included at school and learn how to stand up for ourselves. I know it’s the best life lesson.”
Vanessa Weisbrod:
Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit DME.childrenshospital.org/raisingceliac and complete the short survey attached to this episode.
If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac on TikTok, at Children’s Celiac on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.
9/21 Episode 10: The Burden of Living with Crohn’s and Celiac Disease
- Scott B. Snapper, MD, PhD – Chief, Division of Gastroenterology, Hepatology and Nutrition; Director, Inflammatory Bowel Disease Center
- Jahna Goldmore, LICSW – Clinical Social Worker, Division of Gastroenterology, Hepatology and Nutrition, Boston Children’s Hospital
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the Celiac Program at Boston Children’s Hospital. At each month on the podcast, we will invite leading experts to dive into a condition related to celiac, and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA, PRA category one credits for physicians, 0.5 contact hours for nurses, 0.5, ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Speaker 2:
Jay grew up in a small town about 45 minutes outside of Pennsylvania. He loved acting from the moment he was old enough to know what it was. As a young child, he began auditioning for community theater, and quickly captured roles in Oliver, Peter Pan, The Music Man, Mary Poppins, and The King and I. He took voice and dance lessons and was determined to grow up to become a successful actor on Broadway. Jay was always extremely thin and lanky. His parents always attributed it to his extremely active childhood. He never stopped moving. If he wasn’t in dance class, he was doing jazz moves or tap dancing around the house. He ate like a bird, but never really seemed to be hungry. Jay was genuinely good and a happy kid, and was loved by all of his friends and teachers. Life was good for Jay until he was a junior in high school and started getting extremely smelly gas.
He always felt like he had a lot of gas. But the first time he noticed himself pass what he described as the foulest smelling gas I’ve ever smelled was changing in the boys’ dressing room before a dress rehearsal for the fall musical. He had eaten his school’s Chinese food for lunch and thought perhaps he was coming down with food poisoning. He had stomach cramps and gassed the entire afternoon and evening, and left rehearsal embarrassed and upset with his digestive track. He took Pepto-Bismol before bed and hoped he would wake up feeling better in the morning.
Vanessa Weisbrod:
Though passing gas is entirely normal and an indicator of good digestive health, excessive flatulence can significantly impact a person’s social life, and is a common reason for referrals to gastroenterology clinics. It’s also a common symptom of celiac disease and many other gastrointestinal issues.
Speaker 2:
Jay did not feel better the next morning. The gas persisted, and so did his stomach cramps. His mom took him to the doctor who agreed that he may have a stomach bug. Jay went on for several weeks taking over the counter gas and stomach cramp medications, but nothing really seemed to help. He started having diarrhea multiple times a day, so his mom made an appointment with a local gastroenterologist. At the gastroenterologist appointment, they asked Jay lots of questions about the food he ate, his medical history, as well as his families, ran some blood work, and asked him to return with a stool sample. Begrudgingly, he collected his poop and returned the sample to the lab. About a week later, the gastroenterologist called Jay’s mom and told her that his tissue transglutaminase antibody test was positive and that Jay was severely iron deficient. Jay needed to come in for an endoscopy to confirm a diagnosis of celiac disease.
Jay had the endoscopy two weeks later, and it showed total villous atrophy. He definitely had celiac disease. While Jay was upset with the news that he would need to change his diet, his parents convinced him that he was lucky to have gotten a very quick diagnosis and that it was a disease they could manage.
Vanessa Weisbrod:
There is an average delay of six to 10 years for an accurate celiac disease diagnosis in the adult population. Without a timely diagnosis, celiac can lead to intestinal cancers, type one diabetes, osteoporosis, thyroid disease, anemia, infertility and miscarriage, epilepsy and more. Treatment with a strict lifelong gluten-free diet is required to manage this autoimmune disease. Patients should regularly follow up with their gastroenterologist, even if they’re not experiencing symptoms, to make sure that their disease remains under control.
Speaker 2:
Jay did well on the gluten-free diet and he was relieved that within about a month his smelly gas and diarrhea were gone. He started gaining some weight and grew several inches. By the end of high school, he was accepted early decision into the NYU Tisch School for Performing Arts and couldn’t wait to get to college to work towards his dream of becoming a Broadway performer. He was also excited that New York City was home to many well-known, dedicated gluten-free bakeries and restaurants. He spent his summer before college performing in a summer theater group in Cape Cod, Massachusetts, where he not only fell more in love with theater, but also found some of the most delicious gluten-free food he had ever eaten. We’re talking fried calamari, fish and chips, and even real New England clam chatter. He had the best summer of his life. Jay returned home to Pennsylvania in early August to get ready to start his new life in New York City. But the week he returned home, he came down with a nasty stomach bug and could hardly leave the bathroom for days.
He was severely fatigued and couldn’t seem to shake the virus. He left for his college move-in still not feeling great, but he pushed through because he was so looking forward to this next stage of life. Despite now living in a city full of gluten-free food options and attending a school with copious amounts of gluten-free food in the dining halls, Jay had a rough first semester of school. He had strange looking stools almost every day that he described to his mom as looking and smelling like a pile of tar. His body hurt all over and he had a rash on the front of his shins that didn’t budge with any over the counter creams. He knew he needed to see a doctor but wasn’t quite sure where to begin. He decided to start at his campus health center. He was diagnosed with eczema and told that he needed to improve his dietary intake and make sure he wasn’t inadvertently being exposed to gluten. He was referred to a campus dietician who helped create a gluten-free meal plan that was rich in protein and whole grains.
He started using a topical steroid cream, which slightly helped the rash, but it didn’t disappear.
Vanessa Weisbrod:
Crohn’s disease is a form of inflammatory bowel disease in which one or more parts of the intestinal tracts become inflamed. Crohn’s often affects the small intestine, but can affect any part of that digestive tract, including the mouth, esophagus, stomach, duodenum, appendix, colon, or anus. Though Crohn’s is a chronic disease with no current cure, it is a condition that is highly manageable with the right treatment plan. Medication and lifestyle modifications can minimize or completely eliminate the symptoms.
Speaker 2:
Jay made it through his freshman year of college and returned to Cape Cod for another summer season of musical theater. But shortly into the first production, he started feeling really bad. He made a trip to the emergency room where he was nauseous nonstop for days and started having severe cramping in the lower right area of his abdomen. He was worried he might have appendicitis. His roommate thought he might have a kidney stone because he was in so much pain. His appendix looked okay and he didn’t have any stones on the CT scan, but the emergency room doctor recommended he get in to see a gastroenterologist sooner rather than later. He had noticed some changes that may indicate inflammatory bowel disease. Jay’s understood he had to take his place in the summer show, and Jay’s mom flew up to accompany him to see a gastroenterologist in Boston. The gastroenterologist appointment went well, and Jay had more blood tests, a stool test, and was scheduled for an endoscopy and colonoscopy procedures.
One week later, he had the answer. He had Crohn’s disease. The good news, his celiac disease was well controlled, and his tissue transglutaminase antibody levels were now non-detectable.
Vanessa Weisbrod:
Studies have largely debated the extent of the connection between Crohn’s disease and celiac disease, but all conclude that Crohn’s is more common in those with celiac than in the general population. Overlapping symptoms include abdominal pain, diarrhea, iron deficiency, anemia, and short stature. With this increased prevalence and many similar symptoms, some researchers suggest that patients over the age of 40 who are anemic or who have chronic diarrhea and are diagnosed with celiac disease also have a colonoscopy to test for inflammatory bowel diseases.
Speaker 2:
Life for Jay did not get easier right away. His stomach hurt all the time, and the medications he was taking were not miracle drugs. He felt bloated, hungry, and achy from taking high doses of prednisone. He had good days, and sometimes good weeks and months, but the flareups seemed to get worse every time. He started getting Remicade infusions, which helped his symptoms, but Jay felt stressed, depressed, and anxious all the time. He made the very difficult decision to move from the performance-based musical theater program to the dramatic writing program where he wouldn’t have to worry about needing a bathroom in the middle of a scene. He pulled back socially and felt like the once vivacious version of himself was lost forever.
Vanessa Weisbrod:
A diagnosis of celiac disease or inflammatory bowel disease alone can be life altering and a difficult adjustment for children, adolescents,, and their families diagnosed together, it’s even more challenging. Children and adolescents with a chronic illness are 25% more likely to experience anxiety and depression than others in this demographic. So how can a medical team help young adults living with both conditions have a positive quality of life? How are the treatments for Crohn’s different than the treatments for celiac disease with a gluten-free diet? Do Crohn’s symptoms come and go, or once treated, stay away? What do researchers know about the genetics of these disease aids and the likelihood of passing them on to future children? We’ll discuss this and more on today’s episode of Raising Celiac.
Today, we talk about Celiac and Crohn’s disease with Dr. Scott Snapper from Boston Children’s Hospital. Dr. Snapper is the chief of the division of gastroenterology, hepatology, and nutrition, and the director of the Inflammatory Bowel Disease Center. Dr. Snapper holds the Wolpow family chair and has become the director of IBD research within the gastroenterology division at Brigham Women’s Hospital where he maintains a joint clinical appointment. Additionally, Dr. Snapper is a professor of medicine at Harvard Medical School. Welcome Dr. Snapper to raising celiac.
Dr. Scott Snapper:
It is so great to be here. Thank you for the invitation.
Vanessa Weisbrod:
So let’s start by talking about Crohn’s disease alone. Our listeners are very familiar with celiac, but not quite as much with Crohn’s. Tell us about the common symptoms and what would lead you to test someone for it.
Dr. Scott Snapper:
So the common symptoms of Crohn’s are typically abdominal discomfort, sometimes diarrhea, sometimes nausea and vomiting. These symptoms are not that dissimilar to patients with celiac disease as well, as your viewers know. Those are really the main symptoms. Sometimes it can be weight loss and fatigue, but those are the main symptoms. And Crohn’s really can affect any person of any age, from infancy to the late 80s and even 90s where their diagnoses being made. But most diagnoses are made in really the mid-teens and early 20s.
Vanessa Weisbrod:
So what is the usual process for getting to a Crohn’s diagnosis?
Dr. Scott Snapper:
So typically what ends up happening is somebody who presents with those symptoms that I said, frequent bowel movements, sometimes blood in their stool or abdominal pain ends up being referred to a gastroenterologist. And then a gastroenterologist, typically when they hear that, will most often end up doing either an upper endoscopy and a colonoscopy. And Crohn’s can affect, and I didn’t say this thoroughly, can affect any part of the intestine, from really the mouth all the way down to the anus. Although most people who have Crohn’s have involvement of the latter part of their small intestine called their ileum and the beginning part of their colon. And so to make the diagnosis, most of the time, it is done endoscopically by colonoscopy, and people see inflammation in the intestine. And it really looks like the equivalent of a rash on the skin, except it’s a rash that is in the intestine. And again, it can be either the colon or the small intestine.
And sometimes, because I mentioned this as well, people get an upper endoscopy. And they get an upper endoscopy because, well, first of all, we don’t know what the diagnosis is when we are often going in doing it, but people with Crohn’s can have inflammation in their esophagus, stomach, or in the beginning part of their small intestine called the duodenum.
Vanessa Weisbrod:
So we know with celiac disease that you have to be eating gluten to trigger their disease. Is there a trigger for Crohn’s?
Dr. Scott Snapper:
That is a very simple and very complicated question all at the same time. And so there’s clearly not the absolute known trigger like gluten is for celiac disease. The pathogenesis of Crohn’s sort of sits in this middle of a Venn diagram of people that have genetic predisposition, altered immune system, and diet all together. Risks in either of these categories can end up leading to a Crohn’s diagnosis, but there’s not a very clearly identified trigger. There are some groups, including our own, that have looked at certain viruses that can trigger Crohn’s. There are people that have looked at certain bacterial infections that can trigger Crohn’s, and other risk factors like not breastfeeding as an example, or early use of antibiotics in childhood. But it’s really one of the major unknowns in inflammatory bowel disease, which is what is the trigger.
Vanessa Weisbrod:
So if a patient comes to you and has diarrhea and abdominal pain, how would you decide which conditions to test them for first?
Dr. Scott Snapper:
Yeah, that’s a simple and complicated question all at the same time. The most common reason a gastroenterologist sees a patient is they come in and they’re feeling bloated, and they have alternating diarrhea and constipation. And that’s sort of the most common. And in that case, sometimes one tries dietary alterations and sees potentially if they have an allergy to a particular diet. Actually, testing for celiac disease in that setting is exceedingly common, because as you guys all know, celiac disease affects more than 1% of the population. So simple blood tests, very simple, not costly blood tests can make that diagnosis. So after trying to figure out is this a short-term or a long-term issue, if it’s a short-term issue, sometimes we just follow patients and they may just have a viral gastroenteritis, or patients might’ve eaten something and had a bad reaction to it. But if somebody has had longstanding symptoms, really not days to weeks, but weeks, months, or longer, then we typically do more detailed diagnostic testing.
If somebody has had six months of weight loss, just giving this as an example, but six months of weight loss with diarrhea, often in that kind of circumstance, we will move to an endoscopic evaluation early. And there’s certain other associations with Crohn’s that I didn’t really mention initially, which some patients with Crohn’s and really severe Crohn’s can have blockages of the intestine, or they can have what are known as fistula or tracks that go from one part of the intestine to another part of the intestine. And those kind of things can get picked up by radiologic exams like CAT scans or MRIs. If a ultrasound or a CAT scan or an MRI was done even by a primary care doctor, if they see a signs of fistula or these blockages, they’re called stenosis, or an abscess, we immediately would evaluate for Crohn’s.
There’s also sometimes lab testing that is done that can suggest inflammation in general. And those are lab tests that are called C-reactive protein or an erythrocyte sedimentation rate. And there’s another stool test that can be found, which is called fecal calprotectin, or fecal lactoferrin. And if those are elevated, often, we move to endoscopic evaluation.
Vanessa Weisbrod:
Great. So there’s lots of exciting research happening right now looking at predicting celiac disease. We’re obviously not there yet, but perhaps in the future. What about with Crohn’s? Can you predict if someone will get it?
Dr. Scott Snapper:
The most significant risk factor for developing Crohn’s or ulcerative colitis, which is another type of inflammatory bowel disease related to Crohn’s, the greatest predictor is actually having a first degree relative, a sibling or a parent that has Crohn’s disease. That’s still the greatest predictor. There are rare genetic mutations that can be our predictors of Crohn’s. And now just like in celiac disease, there’s lots of studies that are trying to come up with blood tests that might subsequently predict that someone would develop Crohn’s. And there’s certain bacterial changes that live in an are intestine. They’re called the microbiome. So there are changes in the microbiome that some have found predict subsequent Crohn’s, and there’s certain lab tests that some people have found predict subsequent Crohn’s. But in reality, those tests are not very, very good. And so unless someone has an exceptionally strong family history and symptoms, or they have a rare genetic diagnoses, we don’t do colonoscopic testing upfront looking for it.
Vanessa Weisbrod:
So a topic of recent interest for researchers has been the genetics involved with IBD and celiac disease. Research has found common genetic differences between celiac and Crohn’s. Can you tell us what’s known about the link between them?
Dr. Scott Snapper:
Yeah. As is well known to your audience, there are lots of immune mediated conditions that are associated with celiac disease, and whether that’s thyroiditis, and there’s microscopic colitis and type one diabetes, just to name a few, it is becoming clearer that patients with celiac disease do have an increased risk of getting Crohn’s, and perhaps to a little less of extent, that patients with Crohn’s disease have an increased risk of getting celiac disease. And there’ve been lots of small studies, and then there have been larger studies that have put together all these small studies that are called meta-analysis, and they have suggested in both ways, that if you have celiac, there’s an increased risk of Crohn’s.. And if you have Crohn’s, there’s an increased risk of getting celiac disease. And there are certain genetic abnormalities that are linked with both of them, so with both celiac disease, as well as Crohn’s disease. Although those genetic links are pretty common, so just having those mutations that are associated with that risk, that alone would not lead someone to test for either celiac disease or Crohn’s disease.
But it really is clear now that if you have one or the other, there is an increased risk. And your listeners may be very curious to say, “Well, if I have celiac disease, should I get tested for Crohn’s?” Or, “If I have Crohn’s disease, should I be tested for celiac disease? And I think today still, if you have celiac disease and you’re well controlled on a gluten-free diet, most people would not suggest a priority that you get tested by colonoscopy for Crohn’s disease, although many of your celiac patients and our celiac patients may have already had a colonoscopy as part of their evaluation that led to their celiac diagnosis. Though many may not because they just got an upper endoscopy. So if you have celiac disease but don’t have other symptoms and are well controlled, at this time, most people would not be testing for Crohn’s, although there may be lots of research interest in testing for some of those biomarkers, and there’s certain immune testing that might interesting to do. But really, certainly most people with celiac disease well controlled don’t need to be ruled out for Crohn’s.
Now, on the other side, those who have Crohn’s, is it worth being tested for celiac disease? And that’s an interesting one because actually, there is an increased risk either way. If you have celiac disease, there’s a greater risk than Crohn’s compared to the healthy population. And that’s even greater than the risk if you have Crohn’s, of having celiac disease. But as you know, and your listeners know, to test for celiac disease from a blood test is very easy, and celiac disease is very, very common. Most patients, or I would say many, many, maybe most is a little too strong, many patients that have been diagnosed with Crohn’s probably have been tested for celiac disease already. But it is not unreasonable for testing. It’s not unreasonable. And there’s not real clear guidelines on this, Vanessa at this point. Because celiac is so common, and because there is an increased risk, the cost of that blood test is small compared to actually making a diagnosis of having celiac disease.
Vanessa Weisbrod:
Absolutely. For our patient, Jay, is it possible that he had Crohn’s at the time of his celiac diagnosis and it wasn’t identified, or is it possible the Crohn’s developed later?
Dr. Scott Snapper:
There’s no doubt that both are possible. There’ve been some studies where people who have joined the military have been followed… They’re healthy when they join the military, and they’ve been followed for a decade let’s say, and blood gets tested from those patients over time. And some of those patients end up burning out. They end up having Crohn’s disease or celiac disease. What’s been interesting in the inflammatory bowel disease literature of these studies on the military cohort, it’s clear that even seven years before the diagnosis of Crohn’s, there are already alterations that suggest that an individual will get symptomatic Crohn’s later on. I say this is a long-winded approach to say that actually, it’s usually before somebody becomes symptomatic that Crohn’s has been brewing for a long time. But it is certainly possible that in our patient with celiac disease that there was an additional trigger that occurred after the celiac diagnosis, and I mentioned some of those, and you developed Crohn’s afterwards.
Vanessa Weisbrod:
So does this military data mean that we might have been able to predict these people getting Crohn’s?
Dr. Scott Snapper:
I think that there’s still lots of work being done in that regard. And in the military data, what people have found is that there are certain associations that if you look seven years before the diagnosis, you’re more likely to get Crohn’s if you have those alterations. But not everybody who has those alterations gets Crohn’s. So there’s still lots more studies to come from that.
Vanessa Weisbrod:
So it’s interesting for our patient, Jay, that the physician at the campus health center first thought to investigate if his symptoms were being caused by ongoing gluten exposure. How do you decide if a patient with celiac is inadvertently eating gluten or if something else is causing their symptoms?
Dr. Scott Snapper:
Yeah, I have to say, although I’m a gastroenterologist and an immunologist, my real deep expertise is more on the IBD side than on the celiac side. However, having said that, the first thing in any celiac patient who is having increased symptoms, the first thing one looks for is inadvertent gluten exposure. And that’s just sort of baseline. We do that because it’s really been shown that that is the most likely reason why someone is symptomatic. So that is completely reasonable. And it’s really first principles, in all honesty. And then after really ruling out, to the best that one can, that one is having inadvertent gluten exposure, one then moves on to other testing, stool testing, blood testing, and then eventually colonoscopy or endoscopy.
Vanessa Weisbrod:
So the only current treatment for celiac is a strict lifelong gluten-free diet. Can you tell our listeners about the treatment options for Crohn’s?
Dr. Scott Snapper:
So with Crohn’s, unfortunately there is no cure yet. Similar to celiac disease, there’s no cure, although at least most patients with celiac disease go into sustained remission being on a gluten-free diet. With Crohn’s, there are a number of medications that are now available for children and young adults and adults with Crohn’s disease. There are many. They’re oral medications, as well as injectable medications, some injectable at home, some in IV infusions in the hospital. And there are many, many. And a large number of patients, thankfully, with Crohn’s can go into sustained remission after being on these medicines. Unfortunately, there are a significant number that are not able to, and that’s why it’s so critical. We’re coming up with new medications. And many of us around the world are trying to come up with new medicines and cures for Crohn’s disease.
Vanessa Weisbrod:
Do the treatments options change with the dual diagnosis of celiac disease?
Dr. Scott Snapper:
Not really. Not really. I think that… Let me give one possible example. So what I didn’t touch on is dietary therapy. And so there’s a great interest, and the incidents in Crohn’s has been increasing over a long period of time, a long period meaning in the last 50 to 100 years. And the greatest changes have been in diet. So there’s been this major thought about diet being a trigger in some way for Crohn’s disease. There are certain diets that have been shown to be effective in inducing remission in subsets of patients with Crohn’s disease, even as good as some of our medicines in inducing remission. And so some of those diets have been Mediterranean diets, specific carbohydrate diets, caveman diets, and there are patients who’ve been on gluten-free diets. I think that with someone that actually has Crohn’s and then has a subsequent diagnosis of celiac disease, I would be much more inclined to try a dietary therapy or dietary approach.
And there’s some. Not all of the diets that have been associated with actually some anti-inflammatory effects for Crohn’s avoid gluten, but some do. And if I had the diagnosis of Crohn’s, and then develop celiac, I’d be much more inclined to try a dietary therapy. Now, the other way around is a bit more complicated because you need to be on a dietary therapy for Crohn’s disease. And so obviously, one would need to continue gluten restriction. I’d be less inclined to try a new dietary therapy and would be more inclined to try one of the other medications.
Vanessa Weisbrod:
Right, because you’d be making an already very restrictive diet, perhaps more restrictive.
Dr. Scott Snapper:
Exactly. Exactly.
Vanessa Weisbrod:
So one of the things I found interesting when listening to Jay’s story was that he knew that he needed to see a doctor, but he kept putting it off. When should someone with abdominal pain and diarrhea call their doctor versus just waiting to see if it gets better?
Dr. Scott Snapper:
That’s a great question. And I would say that if someone has recently traveled or is traveling, or has recently had a dietary change, somebody with acute onset of abdominal discomfort and diarrhea, as I said earlier, as long as it’s not too severe, I think watching it for a few days, even for a week or so makes sense. And there are certain triggers that make us concerned. And those triggers are blood in the stool. That triggers wanting to talk with a doctor. And I would say weight loss is also a trigger. And so whenever somebody has weight loss in association with abdominal pain and diarrhea, they should see their primary care doctor, who may or may not then refer them to a gastroenterologist. So it’s really length of time, severity, and even symptoms like nausea and vomiting. Of course, unfortunately, we all know you can get a virus and have nausea and vomiting, but that’s acute self-limited. Within days, goes away. It’s when things continue that really one needs to get evaluated.
Vanessa Weisbrod:
So there is still very little research on the link between celiac and Crohn’s disease. What do you think that we need to learn next to better understand the connection or lack of one?
Dr. Scott Snapper:
Yeah. I think there is, by the way. As the data and the large meta-analysis have suggested, I think there is a connection. I think there’s still a lot of knowledge that is needed to understand how genetics connects to alterations in the environment to lead to dysregulation of the immune system in the intestine. And as we learn more about that, how diet, how environmental exposures alter our immune systems in the gut, we’ll learn more about celiac disease, we’ll learn more about Crohn’s disease. And certainly by learning more about both of those, we’ll learn more about them together. I think the other thing is having prospective, which means going forward studies at looking at people with Crohn’s prospectively, or separately, those with celiac disease, following them prospectively and studying them, looking for those who develop either Crohn’s or develop celiac disease, like that study in the military, which starts with people who have neither. I shouldn’t say that. I don’t know actually if you can be in the military and have celiac disease, I think probably you can. I don’t know the answer to that.
Vanessa Weisbrod:
It’s a challenge. That’s a whole nother podcast episode that requires defining food.
Dr. Scott Snapper:
But really, having those prospective studies looking at either of them and figuring out who develops either Crohn’s or Celiac disease in those separate situations will go a long way for furthering our knowledge.
Vanessa Weisbrod:
Thank you so much, Dr. Snapper, for all of this wonderful information. We’re going to take a quick break. And when we come back, we’ll have Jahna Goldmore, a social worker at Boston Children’s Hospital, here to talk about strategies for managing stress and anxiety around living with Celiac and Crohn’s, as well as a new innovative health and wellness program that is helping these patients at Boston Children’s Hospital.
Speaker 4:
We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.
Speaker 5:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness, while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Welcome back, and welcome Jahna to the podcast. So when I was interviewing Jay about his story and he described feeling anxious, stressed, and depressed about his situation with the two conditions, I knew we needed your wisdom on how patients can deal with the hardships and emotions of these diseases. So what is your approach with patient families when there are two diseases that they have to deal with?
Jahna Goldmore:
Thanks so much, Vanessa. That’s a really great question. I think that a piece of work with any chronic illness is really… We talk about this idea of adjustment to chronic illness. But I think to me, the first part there is really acknowledgement that this is a huge shift in their life, and really taking time to pause and experience the emotions that go with that. Because I think when I’ve seen patients try to move through without kind of an acknowledgement, that really makes it a really difficult adjustment. We’re trying to acknowledge kind of all the feelings that go with this, not just the ones about moving forward and being strong, but also about frustration, disappointment, sadness that go with that, because I think the expression is the only way forward is through. So to me, that’s kind of the first step. And then I think there’s obviously with any chronic illness, and particularly having a diagnosis of two, it’s the sense of unpredictability.
I was thinking a lot about Celiac and IBD and kind of the differences in unpredictability there. And with Celiac, it’s like you can control things through management of a diet. But in the environment sometimes there’s unpredictability to what might pop up in choices, so that you can do as much as you can, but sometimes you can’t predict the environment. And with IBD, sometimes it’s internally, or what is your response going to be to medication? What symptoms is your body going to have that, even though you do everything that you are planning to do, take medication, follow the right nutrition plan for yourself, that still internally, there’s unpredictability. So I think for both, there’s a little bit of each. But my focus with patients tends to be acknowledging that unpredictability is a huge source of anxiety. And that’s the starting point, but really having the focus beyond what is in their control. And in a healthy and balanced way, what are the pieces they can focus on that they have control over?
And we call that kind of like their self-management. So that would mean nutrition and diet, which we obviously know is huge in celiac, but also in IBD. Stress management and what’s our relationship with the emotions that go along with this, really, that’s a piece of the puzzle. And then also, what are their supports? What are the things they have in place, which I know we’re going to talk about through our conversation. But I think focusing on what are these small pieces that are in their control to help them feel that, even though there’s some unpredictability here, what are the things that they can predict in their own self-management and their own treatment plan that help them feel they have a sense of autonomy? Because otherwise, we can go down a rabbit hole of worry. And I think that’s easy for anyone to do, but particularly with one diagnosis, and then another. So I think just peeling it back to those basics.
Vanessa Weisbrod:
Absolutely. So it’s so hard to be told that despite your constant vigilance with the treatment for one disease, that you now have another. How do you encourage someone to continue sticking to the gluten-free diet when it hasn’t seemed to prevent development of another condition?
Jahna Goldmore:
Yeah, definitely. That’s a great question too. And what I was thinking about too with your first question is I always think about focusing on what has worked in the past. And I think that’s kind of a piece to kind of jump forward into this question. I think that supporting patients to feel invested in their care, even when it feels frustrating at times, and really focusing on long-term goals, so I think working backwards. So sometimes when we meet with patients, it’s trying to think about what are the things they really want to do? What is the kind of quality of life they want to have? And then kind of asking questions and doing… We say motivational interviewing, but basically what are the steps that they need to take to do that? And really connecting the dots on the day-to-day behaviors and sticking to a gluten-free diet and making certain health choices, and kind of how those connect to long-term goals. Because that can be really difficult for any and all of us, but specifically when you have these daily choices that can majorly impact how you feel.
So I think making those connections to long-term goals and short-term behaviors and trying to help people really feel invested. So even for young school-aged kids and teens, having them have a conversation with their providers and really have them have engagement in their treatment plan, not just parents telling them kind of what to do, but really having them have choice, right? Because there are different choices that kids with this diagnosis, celiac or IBD have to make to stay healthy. So really having them within those have control and choice.
Vanessa Weisbrod:
Absolutely. So Jay was in college when he received the dual diagnosis, when there are many emotions flowing. He was living away from home and dealing with multiple medical conditions on his own. Anyone would be stressed in that situation. How do you support patients in college with navigating all that comes with these diseases?
Jahna Goldmore:
Yeah. So I agree with you. I think anyone would be so stressed in this situation. I think it’s kind of an adjustment to college, compounded by an adjustment to a chronic illness, and then on top of that, managing a chronic illness that we know he was managing. So it’s like adjustment times three. I think that really kind of stressing that the foundation here is health and mental health, and that that’s a starting point for everything else. And it’s kind like the expression of putting your oxygen mask on first. But really for kids that especially they’re at college, they’ve worked so hard, they want to achieve and do well, but kind of making the base point their own health and mental health and that things build from there. I think I’ve seen kids jump in the other way, the reverse direction. And it works for the short term, but in the long term, it’s sometimes not sustainable.
So for them, the specifics, I would say really identifying supports that are already existing. We say natural supports, but identifying their community. If it’s friends they’ve already made at school, but also family and friends from home, and really getting these touch points in place, and kind of having open conversations about what’s helpful for them for support, which is so hard. But I think having proactive conversations. Then when you really need it, that support is there. And then I think identifying new supports at college, which can be pretty scary for… It’s a new place you want to do it on your own. But schools really have systems in place, which we’ll talk more about, that are able to support kids, counseling centers. But also just accessibility and disability services are able to really sit down with kids and see what’s a game plan for the semester based on what you have going on medically.
And they want to work for the students as much as students want support, but sometimes it’s hard to have that activation energy to ask for support. So to me, I think it’s really identifying what you have that works, and then in this new environment, what’s going to be helpful.
Vanessa Weisbrod:
So Jay ultimately had to change his major because of his medical needs. This was clearly a very challenging choice for him. How can college students advocate for themselves to get the right support in the college setting?
Jahna Goldmore:
Yeah, like we had mentioned a little bit, but I want to get into this disability and accessibility services. So at any college, they have staff on site that are really designed to support with exactly this. So if you had a 504 plan for medical need in high school or prior, or you didn’t, it doesn’t matter, college could be a new starting point, but this office also helps with 504 and past IEP accommodations. And they will really sit down and through what protections could be available. And I think what I always tell kids, it’s like it’s totally okay to change course making choices that are going to work for you, but certainly the ability to be proactive and kind of have these conversations with the team there. Some of the accommodations we see for celiac or IBD is not calculating a term grade until you have a chance to make up work.
So if you had an exposure or a flare, that you also have time to really do what you need to do to have that reflect your hard work. No medical appointments and everything wouldn’t be counted against you. And then they might have stopped test time for different symptoms and access to what they need in the classroom or in a formal testing setting, so if symptoms come up, that that is supported and they’re not penalized for that. So basically, you’re not penalized for having to manage a medical condition. And I think that there’s staff there that will meet with you to set up a plan and inform professors, not even of the specifics, but more just to let them know so that someone like Jay can have those conversations with teachers as needed. So it’s almost like putting an insurance plan in place. And hopefully you won’t need it, but if you do, which does happen, which in Jay’s case, he did need to have some conversations about this, that he’s able to, and it’s protected, and you have a team that has your back.
You’re not just advocating on your own. You really have that backing of a formal plan with the school. And we think of it, there’s both academic accommodations, and then also housing. So we think a lot about that with kids. If there’s a setup that would help them to feel more comfortable, to get more rest, to be exposed to less… For IBD kids, some of them are on immunosuppressive medication. To be on that medication and try to limit exposure to kind of a bathroom with many, many, many students and share it with less, or if anyone’s having symptoms, to have a bathroom accessible. So thinking about the housing and the academic as parallel, because obviously they feed off each other in terms of how kids are adjusting to college.
Vanessa Weisbrod:
How is the medical team involved in the college advocacy process?
Jahna Goldmore:
Sure. Yeah. So we really provide documentation for students so that they can start this process. So when you call to meet accessibility services, the first thing they’re going to ask you is, “Do you have a letter from your medical team, or do you have a form completed?” So really our role is to give context for the diagnosis and what we think might be helpful, kind any updates on that. And we can also sit down with students, and kind of because we’ve worked with many college students, really help them to understand what their options are. So maybe they go into that conversation with the school knowing what questions to ask. So we’ll have a problem solving and brainstorming conversation beforehand to kind of educate them on what they need to look for and what they should be asking for. So that’s how we’re involved, and then we can get involved along the line if we need to.
Vanessa Weisbrod:
So let’s talk about the social elements. How can college students talk to their friends about their diseases and find support?
Jahna Goldmore:
Yeah. So a lot of kids going into college may have already been diagnosed and may have already had this experience of having to share with friends, teachers, coaches at school. So often for that population, we’re thinking through what worked for you. But then going into this new situation, I think for anyone, whether they’re newly diagnosed or they’ve had the diagnosis, kind of identifying what’s your intention in sharing? So how will you feel after you share? So sometimes I’ll kind of walk kids through what’s the intention? Do you think this will take pressure off you if someone knows, and so you won’t be worried about what if something comes up? So is the intention to decrease your anxiety? Even though it’s a hard first step to take, what will be the long-term outcome of sharing this with someone, whether it’s a roommate or a professor or coach?
So I think having them really think about why they’re sharing and what the purpose is, and then kind of thinking through how can I actually reach that intention and maybe share the amount of information I’m comfortable sharing. And then kind of we think through their circle. It’s like you have an inner circle of close friends and people that you might share more with, and then kind of friends or classmates, and maybe some teachers, professors, and then kind of the outer circle, people you may not have as many interactions with. So I think there’s levels of sharing that kids are comfortable with. So we’ll kind of walk through a script of… With some people I might be sharing, I have an autoimmune disease or I have a medical plan. And with some people, I might really be getting more into, “Here’s what comes up for me, and here’s when I might need support.”
So having them kind of be able to tease out why, and then what they want to share and what they’re comfortable with, and practice it a little bit too. So it’s great to practice with someone you’ve already shared with, or with a counselor or family member to kind of think that through. Yeah, and I think you can always, I think, figure out your own timeline for it. So there’s no right or wrong way to do it, but that’s a lot of what we’ll do to problem solve. And I think it’s a great thing to think through because sometimes it does shift things in terms of comfort level adjusting to school.
Vanessa Weisbrod:
For sure. So what are some strategies for reducing stress for patients who are feeling overwhelmed by their diagnosis?
Jahna Goldmore:
Yeah, that’s a lot of our focus, and probably one of the most common referrals we get in conversations that we have with any high school to college transition. So I think about it twofold. It’s like there’s internal kind of things that we can do that we can do. I can do this by myself to really manage my stress, and then kind of environmental things. I can set this up, or I can connect with someone else. That might be a great way to mitigate stress in the longterm. So I think some of the external things I can start with that we talked about. So especially with adjusting to school, really identifying your supports. And then if creating a health or medical plan with accessibility services takes a little bit of that pressure off, having to do everything at the deadline. Or if something comes up, worrying about, will I finish this on time? Will I be able to have my grade reflect my effort in the class? I think counseling services too, obviously is a great way.
If someone feels like they need that extra support, it’s just helpful to talk things out. And I think also setting up the dorm in a way, that is actually a huge factor for kids. I think I have some kids that are so worried about going to school and having symptoms and having to share a bathroom, that just taking that off the table and having a bathroom shared by less students, or they’re in a suite where it’s only a couple students, that actually changes the game for them, and they feel a relief about going away from home. So those, I think, are the environmental things. But internally, what can we do? Of course, what coping skills have worked? So much benefit in terms of exercise and stress reduction. We’re focusing a lot within our wellness program around yoga, meditation. Even if you’re not going to go meditate for half an hour, being able to do diaphragmatic breathing for one to two minutes can really reset your nervous system and help you kind of get to that rest and digest state.
So I think also creating good routines for college students, especially around sleep, sleep, and then all the kind of daily routines that impact their health, so nutrition, self-care, and obviously exercise and everything. So really thinking about good routines and sleep hygiene, I think, can all impact how you experience stress and emotions during the day and how you handle those. So those are just a couple, but yeah, hopefully that’s kind of helpful.
Vanessa Weisbrod:
So you have been very involved in the IBD summer camps. Can you tell our listeners about these programs and how they help young people with IBD?
Jahna Goldmore:
Yeah, absolutely. So these camps are run by the Crohn’s and Colitis Foundation. They are offered to anywhere from, I think, seven to 18, or going into senior year of high school. They’re kind of offered regionally, so this is an awesome way for kids to meet other kids with a diagnosis of Crohn’s or colitis and basically have a summer camp experience for five or six days at an awesome kind of camp location where they can do swimming and arts and crafts and sports and all the summer camp stuff, ropes course, archery, all of that. But basically the common thread here is that everyone has this diagnosis. So at breakfast, lunch and dinner, people take medications. There’s an opportunity to ask the medical team doctor, nurse, social worker kind of question. So we really help support kids to engage within their care. But I would say that’s an open conversation. But otherwise, it’s a lot of informal connections that kids make through the activities that they do, which for them is a great way to connect.
So it’s not a formal support group, but the kids that are campers end up being counselors, and then the counselors end up mentoring for the campers. And we’re there really to support kind of this experience and support kids as they need it. But it’s really one of my favorite weeks of the year to see kids not just be in the hospital setting, but to see them connect with other kids, and that can be a game changer for them, knowing that there’s someone else that’s going through the same experience that is out there.
Vanessa Weisbrod:
So our program at Boston Children’s Hospital recently launched a patient wellness program that combines yoga, mindfulness, and meditation with cooking classes. Can you tell our listeners about this program and how you’re working to reduce stress in these patient families?
Jahna Goldmore:
Yeah, definitely. So I think part of the initiative of trying to start this program also came from seeing the experience kids were having at camp with really doing activity based things that led to these connections and led to them feeling kind of more empowered around their diagnosis, so connected and feeling like they could talk about it. So they were also doing yoga at camp and had this opportunity to do all these kind of cool things. So we thought this is a great chance to bring that to a setting where it’s not a five day thing, but they’re getting a bit of a taste of that experience. So I think our aim is to really start the conversation early that stress how you deal with emotions, how you take care of yourself as a whole person really can affect your IBD or your chronic illness.
That’s an important conversation to have, whether a kid is five or 15, or heading into college. And I think the experiential part, let’s not just talk about it, let’s really see, okay, how does moving around and doing 30 minutes of yoga and 10 minutes of sitting and doing some breathing for a teen, how does that actually impact your nervous system and how you feel? And having them reflect on that. So they’re getting a bit of a taste of what could be helpful for them as a long-term strategy, and they’re getting to meet other kids with the same diagnosis. So I think introducing these strategies and making it experiential, and then helping families and kids connect. And kind of learn, how do we do this? This is your first question. It’s such a huge shift and change to have a diagnosis, but really trying to engage people in their care in a different way that thinks about the whole person and helps them with all these pieces.
Vanessa Weisbrod:
I love how you’ve done some of these events on a farm that’s just in a beautiful setting outside, doing yoga on the farm with goats right behind all the families. It’s such a beautiful thing. So if families have not checked this out yet, I can’t recommend it enough to come and see all the great work that Jahna is doing in Boston. So Jahna, thank you so much for all of the wisdom that you shared today, and also to Dr. Snapper. But now I want to head to my favorite part so that we can find out where Jay is today.
Speaker 2:
Today, Jay is 38 years old and lives with his husband in Brooklyn, New York. They have a dog named Albert and are in the process of adopting their second child. Jay’s celiac disease and Crohn’s disease are well controlled, though he still has flares from time to time. He says that years of therapy, yoga, and meditation helped him learn to control his emotions surrounding his diseases, and that very supportive friends and family helped him get to the good place he’s in today. After graduating from the Dramatic Writing program at NYU, he and a group of friends started a production company and have now produced several feature films, including two that were shown at the Sundance Film Festival. Jay is a lead writer for all of the films.
In his own words, “Living with Celiac and Crohn’s isn’t easy at all. My college years were supposed to be the best of my life, but they were really hard and stressful for me. But looking back, today, I have to believe that being diagnosed with Celiac and Crohn’s changed the entire course of my life in a way that I’m happy about. It forced me to focus on writing, and today I am still doing what I love. I watch the actors bring my ideas and words to life on stage. I can’t wait to share my love of theater with our children and take them to their first Broadway show.”
Vanessa Weisbrod:
Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists, to claim your continuing education credits. For listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at @BostonChildrenCeliac, on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Have a great month.
10/20 Episode 11: Could a Drug Cure Celiac Disease?
Expert Guests:
Dr. Jocelyn Silvester, Research Director, Celiac Disease Program, Boston Children’s Hospital
Learning objectives:
1.) Describe how potential drug candidates for celiac disease could work as an adjunct therapy to the gluten-free diet.
2.) Explain how patients with celiac disease can be connected to clinical trials.
3.) Understand how to discuss eating gluten as part of clinical trials effectively with patients with celiac disease.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the Celiac program at Boston Children’s Hospital. At each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient family, the latest research, and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA Category 1 credits for physicians. 0.5 contact hours for nurses, 0.5 CE continuing education credits for social workers, and 0.5 CEUs for registered dieticians. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s raising celiac patient story.
Janis:
Amelia was born into a family where celiac disease was a common occurrence. Her mom was diagnosed with celiac disease while in college, and her grandmother was diagnosed in her mid ’40s after a battle with fertility issues. She had four first cousins all diagnosed with celiac after experiencing very different symptoms. One cousin suffered from extreme fatigue, and another had debilitating rheumatoid arthritis. Another cousin had a severe case of alopecia and her little brother had eczema all over his body. Over the course of 12 years, they all got an accurate diagnosis that changed their lives, so it wasn’t much of a surprise when just after her 17th birthday, Amelia started getting stomach aches and diarrhea after almost every meal. She’d noticed the stomach aches for several months. They’d started while she had COVID, but they had gotten progressively worse.
Vanessa:
Celiac disease is an autoimmune disease for which the genetic susceptibility is known, meaning that it is passed through families. Even though it’s passed down from parent to child, the symptoms could be entirely different from individual to individual. One person may experience diarrhea and abdominal pain while another may have skin rashes, headaches, or depression. Some people show signs of celiac disease early in life while others remain symptom free well into adulthood. In certain cases, some people with celiac disease experienced no notable symptoms at all.
Janis:
Amelia’s more severe stomach aches went on for about two weeks before her mom took her to the doctor and asked them to run a celiac blood test. Four days later, they got the positive tissue transglutaminase antibody test and four weeks later they were in to see a gastroenterologist for the small bowel biopsy. Amelia really didn’t want to have the biopsy given her strong family history of celiac disease and positive blood results with such a high likelihood that she had celiac disease. She just wanted to start on a gluten-free diet like so many others in her family.
Amelia’s mom insisted on the biopsy. She wanted confirmation that this was in fact celiac disease and not anything else. When she was diagnosed herself, they had found she also had H. pylori at the time of her biopsy. So, she felt it was important that Amelia verify that celiac was the only thing causing her stomach troubles. In addition to her mom’s persistence that she had the biopsy, Amelia’s gastroenterologist had another reason. He mentioned that many drugs for celiac disease were entering clinical trials and that most trials required confirmation of diagnosis via a small bowel biopsy. A quick and easy procedure today would allow her to be part of research in the future.
Vanessa:
An endoscopy is an outpatient procedure that allows your gastroenterologist to see what is going on inside a patient’s small intestine. A small scope is inserted through the mouth and down the esophagus, stomach, and small intestine, giving the physician a clear view to take samples of the tissue. Samples of the lining of the small intestine are studied under a microscope to look for damage and inflammation caused by celiac disease. It is recommended that at least four to six duodenal samples are taken from the second part of the duodenum and the duodenal bulb in order to obtain an accurate celiac diagnosis.
Janis:
Amelia begrudgingly agreed to the endoscopy procedure not because of her mom’s nagging, but because she was intrigued about being able to participate in research. If a drug was developed for celiac disease, maybe there was hope that one day she could eat some semblance of a normal gluten-containing diet. Three days after the procedure, Amelia had a positive biopsy result and immediately started on a gluten-free diet. About six weeks after starting on a gluten-free diet, Amelia noticed a substantial improvement in how she felt after meals, but it wasn’t perfect. She saw her gastroenterologist for a two-month follow-up visit, and the physician reassured her that healing from celiac disease can take time and not to fret that she wasn’t feeling completely recovered.
Vanessa:
The time to feel better after starting a gluten-free diet varies for each person with celiac, some people feel completely better after a few days on the gluten-free diet, and for others it takes a bit longer. A small number of people with celiac disease don’t see improvement on a gluten-free diet. This could be because they are not adhering to the gluten-free diet. There is another condition that is affecting the intestine, or in extremely rare cases, the disease isn’t responding to diet alone and medications such as steroids or immunosuppressants are needed.
Janis:
Amelia persisted with a strict gluten-free diet, but still one and a half years after her biopsy, she still wasn’t feeling back to her normal self. She was now in college. Sure, she did normal college kid things like go to parties, stay up too late and occasionally drink alcohol, but she never ever ate gluten. During her winter break from school, Amelia returned to her gastroenterologist in hopes of finding a solution to her ongoing bloating, cramping, and loose stools. It wasn’t horrible and she could function in school, but she didn’t like the way she felt and hoped for improvement in her symptoms. Her gastroenterologist recommended meeting with their dietician to take a close look at her diet and see if she may be intolerant to other foods. Amelia met with the dietician and decided to try eliminating lactose from her diet.
Vanessa:
Some patients with celiac disease may have trouble digesting lactose because their small intestine is damaged. However, unlike gluten exposure in people with celiac disease, lactose is not causing damage to the small intestine. Some patients need to avoid lactose altogether while their gut is healing. While others do well on a low lactose diet, it’s important to talk with a doctor and dietician before experimenting with additional food eliminations.
Janis:
Just as she was vigilant about eliminating gluten from her diet, Amelia was strict about not eating dairy. She wanted to feel good. She met with her university food services manager and worked out a system to have gluten and dairy free meals in the dining hall. They weren’t the most exciting meals, but they served the purpose. Three months later, Amelia was feeling better. She was significantly less bloated and often had normal bowel movements. She didn’t feel perfect, but she felt good enough. She met with her gastroenterologist virtually and they agreed that sticking to the gluten and dairy-free diet was the right way to proceed. For now, they would reevaluate. In six months’ time, Amelia hung up from the video visit with her doctor, unsure if she was happy or sad. Inside, she knew she didn’t feel normal yet and longed to feel completely healthy. In the back of her mind, she thought about what her doctor said more than two years ago about drugs and clinical trials. Perhaps one of those drugs would be the answer to her issues.
Vanessa:
There are a number of drugs in clinical trial for celiac disease. Some of them are designed to help patients with ongoing symptoms of celiac disease. Others will protect against small amounts of gluten cross contact. But how far away are these drugs from being approved by the FDA? Will they be available to all patients with celiac disease? Will you need biopsy confirmed celiac to take the drugs? How can patients like Amelia join these clinical trials to help researchers learn about how well their drugs might work? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about drug development for celiac disease with Dr. Jocelyn Silvester from Boston Children’s Hospital. Dr. Silvester completed her PhD in biology at the University of Cambridge, England. Prior to studying medicine at Dalhousie University in Halifax, Nova Scotia. She completed her residency at the University of Manitoba in Winnipeg, Canada and her fellowship in gastroenterology, hepatology, and nutrition at Boston Children’s Hospital. Dr. Silvester is the director, director of research for the Celiac Disease Program at Boston Children’s and truly leading the way to finding a way to treat celiac disease beyond the gluten-free diet. Welcome Dr. Silvester to raising celiac.
Dr. Jocelyn Silvester:
Thank you, Vanessa. It’s great to have the opportunity to join you.
Vanessa:
So, I really don’t want to bury the lead too much. We know that there are drugs in development. How many are there and how soon might they be used in the celiac community?
Dr. Jocelyn Silvester:
That’s a great question and one that comes up a lot. We have about a dozen right now, and that number changes around the edges as new compounds enter the pipeline and compounds exit. And that’s one of the really important things about drug development is that most drugs don’t actually make it through the development process to be something that’s actually available to patients. So, how long it takes? Usually, the drugs have to go through three phases. Phase one is first-in-human to make sure they’re safe. Phase two is to get some idea about how it’s going to work, and then phase three is a larger trial that would be to try and get an indication to get the FDA to approve it. So, this whole process could take five to 10 years or longer. And we do have some drugs that are now in phase two, which is exciting because you have to pass phase one to get to phase two and ultimately through phase two to phase three before you get the drug.
Vanessa:
Can you tell our listeners about some of the drug candidates and how they might work? For example, would they allow you to eat a gluten containing croissant?
Dr. Jocelyn Silvester:
So that’s the hope. I think that a lot of my patients tell me they want to eat a normal diet and that includes gluten. And so, the way the medications are currently being conceptualized, there’s definitely some that are thought of as not a way to mitigate the effects of gluten entirely, but potentially help if there’s cross contact at a restaurant or the small amounts of gluten that we know everybody has in their diet from time to time, but not intentional gluten exposure. And then there’s other medications that actually work more to change how the immune system recognizes to and reacts to gluten. And the hope, which really, we have to do the studies to figure out if this is true or not, is that these would be something that would potentially be an alternative to gluten-free diet.
Vanessa:
Wow. So, there is hope for that gluten containing croissant down the line.
Dr. Jocelyn Silvester:
There is, and then I think there’s also folks who, it’s not really a drug, but there’s active efforts to try and modify wheat so that it has the gluten parts of gluten that make gluten do all the things that make things behave like bread products without having the gluten bits that affect people with celiac disease. And that’s a really interesting thing because that’s a food that’s been modified for medical purpose, but it’s not actually a drug. And so, it’s not really clear how we would get to figuring out if that’s something that is safe for patients.
Vanessa:
So interesting. So, are the drugs that you’re thinking about, would you take these in a pill form or would they be an infusion?
Dr. Jocelyn Silvester:
That’s a good question and I think one of the things that definitely changes as drugs evolve, but currently there’s both infusion-based medications and pill-based medications and there was a subcutaneous injection, the Nexvax2, but that one didn’t pass phase two.
Vanessa:
How often would you need to take these? Is this something you would take every day, like a lactate pill or something that you would get once, and it would work forever?
Dr. Jocelyn Silvester:
I think it really depends on the compound and the purpose. So, some of the medications really are sort of lactate for gluten. So, lactate is an enzyme. Lactate contains the enzyme lactase, which breaks down lactose. And so, people who have lactose intolerance they don’t have lactase themselves in order to break it down. So, by replacing the enzyme, they then can tolerate the lactose again. And so, the idea behind the glutenase enzymes is that if you could break gluten down, then people wouldn’t recognize it because one of the things that’s special about gluten is that it has a lot of prolene in it, and those are something that our enzymes that we have in our digestive tract aren’t very good at breaking down. So, if people eat gluten, that’s why we can find gluten intact in their poop. Whereas most foods that we eat, we’re able to break them down into the amino acids, which are like the building blocks of the protein, and then you don’t find them in the poop.
So, even though it’s not that people with celiac disease have an enzyme deficiency like people with lactase deficiency, if you could give them a glutenase to chop up all the glutens, then potentially that would be helpful. And so, of course, if you’re trying to chop up the gluten, then you would have to have this whenever you eat gluten and this needs to be in the stomach, and so these are things that are pills.
Vanessa:
And how about the infusions? Is it a one in a done or is it repeated over time?
Dr. Jocelyn Silvester:
There’s really not the data to know, and I think that’s one of the questions is what are the long-term effects? What’s really exciting about some of the medications that are being tested is that they’re really a first in class medication. And so, when we think about other autoimmune diseases that we don’t understand as well as celiac disease. Really, we don’t have a target like gluten, and so we’re just trying to suppress the immune system and stop it from being active. Now of course, this has lots of bad side effects because your immune system does lots of really important things like fight infections and watch out for cancer. And so, these drugs that we’re doing for celiac disease are actually exquisitely focused on actually the immune response specifically to gluten. And so, it’s a different way of manipulating the immune system. And celiac disease is really being used as sort of the test case, keeping in mind that this is something that would also be applicable to potentially type I diabetes where we know some of the antigens or multiple sclerosis where we know some of antigens.
So, if we know the protein antigen that’s involved, then we can potentially use these technologies. And celiac disease is the first. So, we don’t know whether infusions need to be ongoing or not. And I suspect in the process of doing this, we’re going to learn a little bit about what celiac disease is and what turns celiac disease on and what turns it off.
Vanessa:
Absolutely. So, you mentioned the Nexvax2 trial, and I know that at the time we were talking about it as a vaccine. Would any of the candidates that are now being looked at prevent development of celiac disease or would you already have to have celiac to take these?
Dr. Jocelyn Silvester:
So that’s a great question and let’s take a step back first and talk about Nexvax2, which was called a vaccine. It was a peptide mixture that was subcutaneously injected. And the idea here was again, if you can manipulate how you present gluten to the immune system, then you can change how the immune system responds to the gluten. And so, although it was called a vaccine, it wasn’t a vaccine in the sense we traditionally think about where you’re thinking about something where you want to activate the immune system towards it. And so, the Nexvax2 was a subcutaneous injection, but it wasn’t like a COVID vaccine or a flu vaccine. The injections that we’re doing now aren’t necessarily considered to be quote vaccines because again, for vaccines you’re trying to generate immune response to what you’re vaccinating against, whereas here we’re trying to reduce the immune response to what we’re doing.
Vanessa:
That’s a really interesting way of thinking about it. So now that you have everyone excited about the different types of drugs that are being tested, let’s dive into what needs to happen for these drugs to actually come to market. How does a drug go from an idea that a scientist has to clinical trial and then eventually to our pharmacy shelves?
Dr. Jocelyn Silvester:
So, I think that’s partly some of the process that we started to talk about a little bit earlier. And one of the things that often gets missed out on this, it’s super important is the so-called preclinical phase. So, there’s a lot of work that happens before somebody could even go to the FDA or Health Canada or the European Medicines Agency and ask for permission to test a drug in humans. And so, this is where the idea happens. And then usually for most diseases we have animal models or tissue culture-based models. Celiac disease is interesting in that we don’t really have as developed animal models as we do perhaps in other diseases. And so, we have celiac diseases interesting in that we don’t have as developed animal models as we do in other diseases, but we’re able to get data with animals to support the idea that it’s worth trying in humans.
And so, then the first process in the United States, it’s similar in other countries, but for this conversation we’ll really focus on the United States because it’s Boston Children’s Hospital, so is to apply for a so-called IND or an Investigational New Drug Application. And this involves taking all of the preclinical data and also outlining a plan of how to show that this drug is safe and effective and what it’s effective for.
And so, the first step is to look at that data and part of the preclinical studies is always toxicity studies in rats and look well below the dose that was toxic in rats and start giving that to humans and see what’s happens to people. This is a so-called phase one or first-in-human phase, and this is usually starting at a very low dose with three or five people and then reviewing the toxicity and if it appears safe, then going up to a next dose and sort of going up to what the target dose range is to see what that relationship between dose and toxicity is. And then that information from the phase one trial is used to inform the dosing for the phase two trial.
And then the phase two trial is more about looking at, all right, what’s this drug actually doing to people? Is it actually affecting the response to gluten? Is it making any difference in their celiac disease? And then the phase three trial is saying, “Okay. We want to use this drug particularly for symptoms and people who are already on a gluten-free diet.” For instance, if it’s a gluten aids, that might be an indication. And then once that is sorted out, then the FDA can review it and approve it and then you have a drug. Now something that’s really interesting is that, as we were saying earlier, a lot of the drugs for celiac disease are really unique because they’re actually affecting the immune system. And while they’re so-called tolerogenic in that we’re trying to make the immune system tolerate gluten as opposed to get activated when it sees gluten, they’re very targeted to celiac disease.
And so, it’s less clear that safety needs to be tested in people who don’t have celiac disease. And so, for some of these medications, the first-in-human, the phase one studies are actually being done in people with celiac disease because they’re more likely to have adverse effects if you’re giving them gluten peptides than people who don’t have celiac disease. So, there’s many ways in which celiac disease is a little bit different and a little bit special. And that’s definitely one of the challenges because celiac disease has a treatment which is a gluten-free diet. And so, how do you manage people if you’re putting a treatment on top of a treatment or you take them off their gluten-free diet or you keep them on a gluten-free diet and then put gluten on top of that, that’s where it starts to get complicated.
Vanessa:
So, okay, in phase one you said this is the early stages where they’re looking at the safety in just a small number of people, right?
Dr. Jocelyn Silvester:
Right.
Vanessa:
In those trials, are people with celiac disease eating gluten or are they looking just at taking that particular drug to see how it works in a person?
Dr. Jocelyn Silvester:
So those are really just looking how it works in a person and they want as healthy as possible. So, they’re looking for healthy treated people with celiac disease if they’re tested in celiac patients.
Vanessa:
And then they don’t actually get into the eating gluten until phase two.
Dr. Jocelyn Silvester:
Correct. And not all trials involve eating gluten.
Vanessa:
Correct. So, we know that patients don’t love the idea of eating gluten for clinical trials. Can you tell our listeners why it’s important for people with celiac to eat gluten for research?
Dr. Jocelyn Silvester:
Yeah. I think this is something that we struggle with as a community because we spent a lot of time telling people, “You have celiac disease, you shouldn’t eat gluten, you shouldn’t touch gluten, you should avoid gluten.” And now we’re saying, “Well, wait a minute, maybe we have a treatment for celiac disease. Can you eat some gluten and see if you can help us figure out if this is going to work or not?” And I think that’s sort of the key thing here is that we’re very selective about who can participate in clinical trials. So, anybody who has an anaphylactic reaction to gluten or wheat is automatically excluded. And anybody who has severe reactions to gluten is excluded from many trials because fortunately one of the things that’s unique about celiac disease is that there’s many people who have no symptoms at all. And we can learn about the immune response even if people aren’t having overt symptoms, which is interesting.
And so, I think the reason we need to have people eat gluten is because the disease happens when people are eating gluten. And so, if we want to treat active disease, we have to study active disease. And the way to activate the disease is to give people gluten.
Vanessa:
If people eat gluten for these clinical trials, are they going to have lifetime damage occur to them? Or are they going to heal and be okay?
Dr. Jocelyn Silvester:
That’s a great question. And based on what we know, this is something that we are going to transiently see damage, but people will get better. We actually did this study here at Boston Children’s Hospital with our colleagues at Mass General where we did a gluten challenge study with adults, and we had two different doses of gluten. And in addition to doing the endoscopies like we do when we diagnose people. We also did video capsule endoscopies, which are when you swallow a pill that has a camera in it. And so, we were able to get a look at the villi that way and we could see that yes, if you give people gluten, their villi don’t look very good afterwards. But if we looked a month after we stopped giving them gluten, their villi for the most part looked much better and like they did at the beginning of the study.
And that’s very reassuring and genuinely corresponds with what we see clinically because we know that most people, although they try really hard to avoid gluten, gluten finds them, and they still look healed if we’re to do an endoscopy because intestine has a tremendous healing capacity. One of the things that we spend a lot of time thinking about in designing trials is, okay, first of all, do we need gluten at all to test the hypothesis we’re testing? Second of all, how much gluten do we actually need? And that’s not just how many times does the person actually eat gluten, but how much gluten do they eat each time? And so, we’re actually currently planning a trial at Children’s to look specifically at looking at the doses of gluten that we’re giving adults to look at immune responses. Can we give children lower doses and still see the responses because we really want to minimize the amount of gluten so that we can get the most available information with the least inconvenience to the participants.
Vanessa:
So, you know how much I love to bring social media dilemmas to you and help find the right answer. So, I’m hoping you can give some words of wisdom to other clinicians listening to this interview. So, there’s a recent debate on Facebook about is it really a terrible thing if I eat gluten once a month? Or if my friends are all out and I just don’t feel like being different. If they say it’s okay to eat gluten for science, is it okay if I do it once a month? How do you help people through that discussion and advising patients on what the best way is to proceed forward?
Dr. Jocelyn Silvester:
I think this is where it becomes difficult because as human beings, we really like black and white, which is why the idea that I have celiac disease, I can never touch gluten and I’m never having gluten is very appealing because the idea that actually I have celiac disease and I’m living in a world where I’m surrounded by gluten and I’m going to try my hardest to avoid gluten, but there’s going to be times when gluten is going to find me, particularly because eating really relies on a whole lot of other people and a lot other systems that are outside of your control. And so, I think how I conceptualize it with my patients is we want you to have the healthiest villi possible. And we know that giving you gluten is not good for your villi. So, any intentional gluten exposure that’s on purpose is something that we want to avoid.
Now, is there some threshold that’s safe for exposure? That study’s never really been done either in terms of is there a minute amount that people could eat every day or how long does it take the villi to recover and is once a month too much is once every six months too much? We don’t really know, but we do know that a lot of people are getting ongoing gluten exposure in amounts that are measurable, but that won’t necessarily cause symptoms. And so, symptoms aren’t a great guide to exposure, which is why it’s best to avoid exposure wherever possible.
And part of the reason why, if we’re doing a study and we’re asking people to eat gluten for the study, a big part of being able to do this study is there’s an ethical review for the study. And one of the questions in any ethical review is, does the risk to the participant outweigh the scientific benefit? Because if you’re giving lots of people large doses of gluten to show that gluten causes villous atrophy, well we already know that, and so we’re not actually getting useful information. If we’re giving people large doses of gluten to see if this drug prevents villous atrophy, that’s actually moving the field forward. And so, in order to get approved for a study, we have to demonstrate that actually by doing it, we’re going to add something to what we already know.
Vanessa:
So, let’s talk about placebos. Why are there placebos in drug trials and why can’t everyone get the active drug?
Dr. Jocelyn Silvester:
That’s a great question. And the reason we have placebo is because we know that symptoms fluctuate, conditions fluctuate. And especially when we’re looking at something like symptoms, which for the most part are somewhat subjective, we know that there’s a propensity for us to our mind can control our body and if we believe something is going to help, then that can potentially help even if it’s placebo. And we don’t really understand that process very well, but we know that it’s a thing. And so, particularly for conditions which are not infectious because the placebo response to infection is very low, because if you have the bacterial infection, the bacteria is there whether you think it’s there or not. But for things where you’re looking at things like nausea or vomiting or diarrhea, which are a little bit more subjective, we know that there’s a placebo response. And we also know that there’s a nocebo response, which is really interesting.
Actually. There was an interesting study recently where they took patients with non-celiac gluten sensitivity, and they gave them either gluten or placebo.
And half of the people who got gluten, they told them they got gluten. And half of the people who got gluten, they told them they got placebo. And half of the people who got placebo, they told them they got gluten. And half of the people who got placebo, they told them they got placebo. So, in each group you had people who were told that they got what they got and people who were told that they got something different than what they actually got. And yes, there was a very stringent ethical review for this because we’re very careful in conducting research studies to be honest with participants. And so, it was actually subsequently disclosed to the participants after the data had been collected that this was what they were actually trying to test. But they couldn’t tell people that in advance otherwise they couldn’t do the study.
And so, what we found was that the people who had the most symptoms were the people who got gluten who were told they got gluten. And the people who got gluten who were told they got placebo had less symptoms than the people who got placebo who were told they got gluten. And so, thinking that they got gluten, the so-called nocebo effect was very powerful. And that’s super important for clinical trials because the FDA wants us to use clinical endpoints and symptoms. And so, if whether or not people know they’re getting gluten effects, they’re reporting that’s super important. And so, the reason to use placebo is both to use placebo gluten and to use placebo medication. And so, just as you can have expectations, what will happen to you if you have gluten, you can have expectations what will happen to you if you have the drug.
And some people their symptoms may just get better for some reason independent of being in the trial. And so, it’s important to have that comparison so that if everybody gets better you know that it wasn’t actually the drug. And this is super important in celiac disease and what we learned from some of the early trials, because when they looked at the people who got the drug, their villi got taller, but when they looked at the people who got placebo, their villi got taller too. And what that tells us is that everybody tries really hard to follow a gluten-free diet. And when they go into a trial, they try really hard to follow a gluten-free diet and they probably do a little bit better, which means that their villi grow better, which is part of the reason why it’s so important to incorporate gluten into study designs because then we have some idea of how much gluten people are actually getting.
Vanessa:
So, can someone choose if they get the placebo or the drug?
Dr. Jocelyn Silvester:
So that’s a great question. And generally, no. And so, part of the principles of clinical trials is you have screening criteria because you want to get people who are similar and that they all have celiac disease, either they’re all healed or they’re all not healed. And so, that you are starting with people who are similar, but there’s still going to be some differences. And so, the people who choose to have placebo, there might be something that’s systematically different from them than the people who choose to have drug. And so, when you hear about clinical trials, they often talk about randomized double-blind placebo-controlled trials. And what randomization is that when it gets time to treat a patient and assign them to the treatment, you essentially slip a coin to decide if they get placebo or the drug. And the reason for this is that if you do it randomly, then all of the random things that are different should be equal between the two groups. And so, if you see a difference between the two groups, it’s more likely to be related to the intervention.
Now, exceptions to that are that there’s some trials where they’re designing that after a certain point, if it looks like the intervention is promising, then they will allow adolescents into the trial and those trials are not giving adolescents placebo.
Vanessa:
Got it. So, as you heard, our patient Amelia wasn’t thrilled with the idea of a biopsy. Why are biopsies for clinical trials important?
Dr. Jocelyn Silvester:
So, I think clinical trials for the most part want people to have a biopsy confirmed diagnosis of celiac disease just because that’s how we define the disease. And often part of the sort of screening process to enter a trial is to do a repeat biopsy because it’s important to know are the people who are starting the trial healed or not healed? Because not everybody who’s on a gluten-free diet is healed. And so, having had initially when one’s diagnosed a biopsy means we have something that we can go back to that we can reference and confirm, “Yes. This person actually did have celiac disease.’ And it’s actually interesting how often when you go back and look, you see that people may not have quite met criteria for celiac disease but have been treated and told they have celiac.
Vanessa:
What do you do with them then?
Dr. Jocelyn Silvester:
So those people usually are ineligible for the trial. And I think this is one of the things that is worthy of another discussion is this whole idea of how do we know what celiac disease is and how do we define celiac disease and what you do when not all the signs point the same way. So, if you have a biopsy that looks like you have celiac disease, you have symptoms of celiac disease and your serology looks like you have celiac disease, that’s really easy. But what if you only have two out of the three? That’s where it gets more complicated. And this is part of the reason why people may have had serologies and symptoms, but the biopsy may not quite have been severe enough, or potentially the reason the biopsy wasn’t severe enough is because they had decreased gluten already while they were waiting for their biopsy.
So there’s lots of different things that can happen, but generally if you can document that somebody had a biopsy consistent with celiac disease at the time of diagnosis, this is a way of confirming that the people in your trial are actually people who have celiac disease because we don’t really know the mechanism of non-celiac gluten sensitivity, but the immune-based drugs for celiac disease probably wouldn’t work for somebody with non-celiac gluten sensitivity. So, we need to make sure that the people in the trial are people we want in the trial.
Vanessa:
So, for people who were diagnosed with celiac disease during COVID, or for kids who were diagnosed using the ESPGHAN criteria. They’re obviously going to get older and be adults or eligible to participate in trials. What do you do if they just never had a biopsy as part of their diagnosis?
Dr. Jocelyn Silvester:
And that depends on the trial, and it depends on the design of the trial. And so, some trials, if you have a biopsy when you enter the trial that shows you have celiac disease, then that can be taken as a diagnostic biopsy. Some will look at serology only diagnoses, but for the most part, people who are investing the money to test their drug want that additional confirmation of a biopsy to be sure they’re testing the drug in the right people.
Vanessa:
Makes sense. So, what do you think are the biggest barriers researchers are facing today with drug development?
Dr. Jocelyn Silvester:
I think the main barriers that we always face are money and time. And also, I think this isn’t really about researchers. This is about patients with celiac disease and it’s a partnership. And so, we can’t develop drugs in a laboratory because we’re not developing drugs for rats or any other animal. We’re developing drugs for humans, which means we need to do clinical trials, which means we need volunteers for clinical trials. And so, I think we really need to remember as a celiac disease community that it’s our collective responsibility if we want a treatment other than a gluten-free diet to help work toward having a treatment other than a gluten-free diet. And there’s lots of ways to do this that may not necessarily involve being in a clinical trial where you consume gluten because there’s a lot we don’t know about celiac disease and some gaps we need to fill in order to be able to test the drugs.
For instance, things like how many symptoms does somebody with celiac disease actually have? And what is more symptomatic or less symptomatic? It’s really interesting in celiac disease you sort of have celiac disease or you don’t. And most conditions where there’s drugs, the drug is for mild to moderate Crohn’s disease or severe Crohn’s disease. Well, nobody really talks about severe celiac disease or mild celiac disease. And so, there’s certain things that we need to do and figure out that are totally independent of actually testing the medications.
Vanessa:
For sure. So, are the current clinical trials just for adults or are there ones that kids or teenagers can participate in?
Dr. Jocelyn Silvester:
So, right now, the trials that are enrolling are predominantly for adults. And there may be some looking at non-drug, so a drug is a compound, it’s not a organism. So probiotic trials, I know there have been some done in children, I’m not sure if any are actively recruiting right now, but those aren’t considered drugs. So, it may be that those are open, but for the most part, the idea has been to start with adults and then work towards children. But I think that’s a really important question because arguably children have the most to gain from a drug for celiac disease because children are still growing, and time is important, and nutrition is important to growing. And so, if we could accelerate recovery from celiac disease and treatment of celiac disease, and if we could change the burden of gluten-free diet, I think children have a tremendous amount of benefit.
Vanessa:
For sure. So, do most drugs make it to market or do they fail along the way?
Dr. Jocelyn Silvester:
Most drugs fail, fail to come to market. And I think this is one of the things that is really interesting that I didn’t really appreciate until I became more involved in drug development that a good clinical trial is actually about a lot more than whether the drug works or not. And this is part of the reason why if you participate in a clinical trial, there’s lots of questionnaires, there’s blood draws, you may be having capsule endoscopies with the camera plus actual endoscopies. And part of the reason for this is that we can learn more about the disease and markers of the disease even if the drug doesn’t work.
And so, a great example of this is we mentioned the Nexvax2 earlier, and this was a subcutaneous injection of peptides that people with celiac disease recognized from gluten. And one of the early findings was if somebody vomited when they ate gluten, you could inject the peptide under their skin. And that made them vomit too, which was something that was unexpected and really made us sort of reconsider how we were thinking about celiac disease. They also were looking for markers, and so they found that when somebody has celiac disease, there’s certain chemical mediators and cytokines that are released and you can measure these. And so that has also been something that’s changed how we think about celiac disease.
So, Nexvax2 isn’t going to be a drug that’s going to be available for people with celiac disease, but did the people who participated in those trials contribute something really useful to understanding celiac disease and have those trials really being foundational to future trials for celiac disease? Absolutely. And so, I think when we think about failure here, we need to really think about the context because a successful trial will have enough so-called ancillary studies that will help move the field along even if the drug “fails”.
Vanessa:
This is so fascinating. What about all of that other data that’s collected in these failed trials? What happens to it?
Dr. Jocelyn Silvester:
That’s a great question, and it depends a little bit on who’s running the trial. So, in general, there’s two types of trials. There are those that are sponsored by industry where there’s a company that owns a license or owns a compound and they want to test the compound. And so, they may approach somebody like myself and say, “We’re interested in running this trial, would you like to be a site principal investigator and help us recruit participants to this trial?” And then we would have a negotiation process, a contract process, and ethics review process. And then in running the trial, we would be helping with recruiting patients, enrolling them, conducting the trial. But all of these samples go back to the company, and then it’s the company that owns the samples and the company that has access to the data. The other type of trials are investigator initiated trials. Sometimes these are funded by companies, but more often they’re funded by foundations or by the National Institutes of Health or governments.
And so, in this case, it’s the investigators that own the data or the institutions that have the grants that own the data. And so, there’s potentially more opportunities to publish. However, I think it’s important that even if the data doesn’t get published immediately, it’s still there and it can still influence what happens later on.
Vanessa:
For sure. So, how are you feeling about the future of drugs for celiac? Are you optimistic that there will be a treatment for patients like Amelia?
Dr. Jocelyn Silvester:
I’d say I’m cautiously optimistic, and the reason for my optimism is as you’ve alluded to many times, most drugs that we trust in people never become drugs that we can prescribe to people. And so, what you need in order to have a drug is lots of shots on target. And right now, there’s not only lots of shots on target, but there are different mechanisms to get to the target. And that’s really what we need because it means if for instance, you do subcutaneous peptides didn’t work, but that doesn’t have any impact on whether a gluten is would work.
And so, the fact that we have multiple products that have different mechanisms and also that the companies that are starting to get involved in this field are mainstream pharmaceutical companies, and there’s an interest on a large scale, and it’s not small startup companies that are necessarily pushing this work in the most responsible for the work also makes me feel more optimistic because as we mentioned earlier, the limitations are money and time. And often the folks who already have some drugs that they’re selling have deeper pockets than those who are just trying their first celiac drug for the first time.
Vanessa:
So, in comparing this to something that’s really common, like migraine and headaches and there’s dozens of different drugs and different classes of medicine that you can take for them, could it be hopeful that someday there would be different drugs for different people with celiac disease?
Dr. Jocelyn Silvester:
Definitely, right now there’s different drugs with different mechanisms that are being tested, and it’s possible that multiple of those will be successful.
Vanessa:
Fingers crossed. So, before I let you go, can you tell our listeners how they can find out more about participating in clinical trials both for physicians who may be interested in becoming a trial site and for patients wanting to enroll?
Dr. Jocelyn Silvester:
Absolutely, and I think that’s a really great question because one of the hardest things is to connect the volunteers with the people who are conducting the research. And so, the best thing to do is, number one, ask your doctor if they’re involved in anything. Number two, you can look at clinicaltrials.gov, which is a registry of clinical trials. There’s analogous registries in Europe and in Australia and other parts of the world. You also can join a research registry. So, here at Boston Children’s Hospital, we have a research registry, and that’s the first place we go to recruit people when we’re doing a study. And you don’t have to be a child to register, and you don’t have to be a patient at Children’s Hospital to register. So, if you’re interested, you can look in the show notes and we’ll have a link.
As for investigators, I think that’s a little bit more complicated, but the important thing to do is get involved, get engaged, attend meetings. Most of the celiac meetings and the large GI meetings, there is a presence from the folks who are developing drugs for celiac disease, and they are interested in developing investigators because it’s very unique to be trying to do clinical trials in a field where you don’t have medications and people haven’t been doing clinical trials before. And so, I think if you’re interested in getting into clinical trials, it’s a great opportunity, and I think it’s worth volunteering and finding out.
Vanessa:
So, if a patient wants to go to clinicaltrials.gov and they find a trial that’s interesting to them, but their doctor isn’t listed as a site, can they reach out to other sites on their own? Or do they have to have an affiliation with that medical center?
Dr. Jocelyn Silvester:
Oh, good question. Absolutely. So, on clinicaltrials.gov, it will list information about the trial and then it will list participating sites. And so, you’ll have contact information for those sites, and you can reach out to them. The other way to find out about trials is a lot of the companies are partnering with patient organizations to help with recruiting. So, often patient organizations will know about what trials are happening, so their websites are also another place to get some information. But certainly, I think if you’re interested, the first thing to do is to reach out and we certainly do get inquiries from clinicaltrials.gov and we do respond to them. So, definitely if you’re interested and you see something that’s interesting, don’t be afraid to click the button to find out more.
Vanessa:
Great advice. So, thank you so much Dr. Silvester, for all of this wonderful information. We’re going to take a quick break and when we come back, we’ll have a patient here to tell us about their experience participating in a clinical trial for celiac disease.
We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.
Speaker 5: The Global Autoimmune Institute:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases, through research, education, and awareness while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Vanessa:
Welcome back and welcome Prachi to the podcast. First of all, thank you so much for participating in research. As you heard from Dr. Silvester, the only way to advance the celiac world is for people to participate in trials. So, truly thank you for joining one and contributing to the future of our celiac community. So, can you tell our listeners which trial you participated in and how you learned about it?
Prachi:
Yeah. So, I’m actually one of the editors on the Celiac Kids Connection Newsletter. So, as I was editing one of the additions, I just saw this ad for a trial, and it was looking for people who have celiac but don’t have a very strong reaction when they consume gluten. And I thought that was perfect for me because that’s exactly what happened to me. So, we just contacted the people who run the trial and I got in and basically, they were just looking for what the immediate changes in blood are after consuming gluten. So, it was very interesting.
Vanessa:
Can you tell our listeners how old are you?
Prachi:
I’m 15.
Vanessa:
Awesome. And how did your parents feel about you participating in the trial?
Prachi:
They were all for it. They were as excited as me, I think ’cause none of us have ever participated in a hospital trial like that. So, we were all really interested to see what it entailed and how it would go.
Vanessa:
Were you nervous to participate?
Prachi:
Not really. I was actually very excited ’cause I’m interested in science and about how the body works, so it was very interesting for me to learn about how my blood and my contribution to the trial would help in manufacturing a potential drug in the future.
Vanessa:
So, what was it like being in the trial? Can you tell us about the experience?
Prachi:
Yeah. So, when we got there, the researchers were actually super nice. They really put me at ease. They almost made it seem like a fun experience going. So, they just had us fill out some forms and it was really fun, and my mom and I went, we actually kind of made a day out of it. We went to Boston, went to a Museum of Fine Arts in our free time between the trials. So, it was really fun participating in the trial, and I think I would definitely do it again.
Vanessa:
So, did you eat gluten for science?
Prachi:
I did. I went in thinking I would get a cookie. Unfortunately, that did not happen. But yeah, I did eat a gluten powder mixed since just an apple juice.
Vanessa:
How did it taste?
Prachi:
I think the powder itself was pretty bland, but so basically just apple juice.
Vanessa:
So, there were no croissants or cookies involved in this situation?
Prachi:
No. Unfortunately.
Vanessa:
How did you feel about having to eat gluten?
Prachi:
I was excited because I thought I would get some cake, but yeah.
Vanessa:
So, going forward, you obviously ate gluten for science once. Do you worry that eating gluten for science once you’ll ever want to eat gluten again, not for science?
Prachi:
Yeah. Probably. But just got to keep the diet.
Vanessa:
Absolutely. It’s so important to remember that we have to stick to that gluten-free diet outside of these limited times we’re participating in research. So, do you have any other words of wisdom that you might want to share with our listeners about participating in future trials?
Prachi:
Yeah. Just go in excited and interested and know that you’re contributing to science and really plan to make the day more fun than just sitting in a hospital because you will have time in between the blood draws and the tests and things. So, just kind of maybe go out into the city, make a day out of it, and just make it a fun experience for yourself.
Vanessa:
That sounds like a really, really good plan. So, thank you so much Prachi and to Dr. Silvester for all of the wisdom that you shared today. Now, let’s find out where our patient Amelia is today.
Janis:
Things haven’t changed much for Amelia in the past year. She’s still gluten and lactose free and still wishes she felt like her old normal self. She has thought about clinical trials for celiac disease but hasn’t committed to joining one because of the requirements to eat gluten. In her own words, ‘I do want to join a clinical trial, and hopefully I will find the right time between constantly thinking about what I eat to feel good attending classes and trying to have as normal a college experience as I can. I haven’t found the time to potentially be sick for meeting gluten, but I’m very thankful for everyone who has found the time and are working to make life better for everyone with celiac disease.”
Vanessa:
Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits. For listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like, and subscribe wherever you get your podcasts. For more information, check us out on social at @bostonchildrensceliac on TikTok, @childrensceliac on Twitter, or @celiackidsconnection on Instagram. Have a great month.
11/16 Episode 12: If You Can’t Afford Gluten-Free Food, You Can’t Treat Celiac Disease
- Dr. Nan Du, Gastroenterologist, Celiac Disease Program at Boston Children’s Hospital
Vanessa Weisbrod:
Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the education director of the Celiac Program at Boston Children’s Hospital. At each month on the podcast, we will invite leading experts to dive into a condition related to celiac and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department. For 0.5 AMA PRA Category 1 Credits for physicians, 0.5 contact hours for nurses, 0.5, ACE CE, continuing education credits for social workers, and 0.5 CEUs for registered dieticians.
To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. Let’s get started with this month’s Raising Celiac patient story.
Janis:
Javier and his parents were sitting in their pediatrician’s office when they first heard the words celiac disease. The family’s first language was Spanish. Mom and dad only spoke Spanish to Javier at home, but his preschool teachers only spoke in English. So at a very young age, Javier was already bilingual. When the pediatrician said that four-year-old Javier had a positive blood test for celiac disease, his parents stared back at the doctor with blank faces. They had agreed to blood tests and stool tests because for the past four years, Javier always had diarrhea. They couldn’t remember a time when he had ever passed a normal looking stool. They were always runny and potty training had proved almost impossible. But when the doctor said celiac disease, they had no idea what she was talking about, but Javier did.
His friend at school, Ava, had celiac disease and she got to eat special gluten-free cookies during treat time, he was kind of excited. The pediatrician brought in a Spanish interpreter to make sure that mom and dad fully understood what needed to happen next. She explained that Javier would be referred to a pediatric gastroenterologist for an assessment and a small intestine biopsy, and that he might need to start on a gluten-free diet, but that he should keep eating normal food until after the endoscopy procedure. Javier’s parents left the pediatrician’s office feeling overwhelmed, but proceeded as instructed. Within three weeks, Javier had a biopsy that was positive, confirming celiac disease and instructions to start on a gluten-free diet.
Javier’s gastroenterologist office did a fantastic job providing education about how to manage a gluten-free diet and even offered resources in Spanish. Mom and dad felt empowered that they could do this well until they went grocery shopping for the first time and realized that a loaf of gluten-free white bread was $9.99 at their grocery store. A small box of gluten-free cereal was $6 and gluten-free mac and cheese was $5.99 compared to 87 cents for the normal box they were used to buying. Gluten-free pretzels were $7 for a bag that was smaller than the usual bag that cost a $1.79. The cookies Javier had seen at school were $9 for five small cookies. Mom spent 10 times more on that first grocery trip than any previous food shopping outing ever, and she had no idea how they would sustain these expenses long-term. She had no idea how she was going to feed Javier.
Vanessa Weisbrod:
The US Department of Agriculture defines food insecurity as a lack of consistent access to enough food for an active and healthy life. Feeding America projects that 42 million people, including 13 million children, experienced food insecurity in 2021. Black and Latinx households were disproportionately impacted by food insecurity with rates in 2021 triple and double the rate of white households respectively. It’s well established that processed gluten-free foods are consistently more expensive than their gluten containing counterparts, ranging from four to over 800% more expensive. In addition to costing more, the nutritional content of gluten-free food items is often poorer than conventional food items.
A recent study from Boston Children’s Hospital found that 24% of pediatric celiac patients experienced general food insecurity during the COVID-19 pandemic. And then when asked specifically about gluten-free food, 27% of the patients screened positive for food insecurity. Another study found that one in six patients with celiac disease are food insecure.
Janis:
The cost of gluten-free food became a major challenge from the first grocery trip after the diagnosis. Javier’s mom started cutting back on the quantities of food she would prepare for him, like using just one slice of bread to make a half sandwich instead of two, and only giving him six pretzels at a time instead of a whole handful. This seemed to work okay for a few months, but pretty quickly Javier started growing and in turn seemed to be hungry all the time. Mom had taken gluten-free snacks to Javier’s preschool, but he was eating them so quickly that they would run out after just a few days. Some days she wondered how bad it would be if he just ate the regular food that the preschool provided. Would it really hurt him to eat gluten just once a day? Cutting out providing snacks would save the family about $40 a week.
Vanessa Weisbrod:
The most staggering finding from the Boston Children’s Hospital study was that one in 10 households with a child on a gluten-free diet that was food insecure, reported eating gluten due to limitations on accessing gluten-free foods. Another study from the University of Calgary found that less than one quarter of food insecure celiac patients adhere to a gluten-free diet. This means that patients with celiac disease are not able to treat their disease because they can’t access gluten-free food.
Janis:
Javier’s mom felt like her world was sinking around her. She reached out to the dietician at the gastroenterologist office to ask for help finding cheaper gluten-free foods. The dietician talked to her about naturally gluten-free foods that were lower in cost like rice, potatoes, and corn. She also spoke to them about enrolling in programs like SNAP and WIC to help offset some of the food costs. Javier’s mom immediately looked into these programs and was able to start getting WIC benefits. She was overjoyed, but the joy quickly turned to frustration when she went to check her cart at the local grocery store and every single gluten-free item she selected was rejected from the WIC benefit. How could this be?
Vanessa Weisbrod:
State and federal aid programs are designed to help families facing food insecurity by providing a monthly stipend for purchasing foods. The special supplemental nutrition program for Women, Infants, and Children, or more commonly known as WIC, provides federal grants to states for supplemental foods, healthcare referrals and nutrition education for low income pregnant, breastfeeding and non breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk. A family with a young child with celiac would qualify for WIC if they met specific requirements. However, there are strict nutritional requirements and package size restrictions on the products that can be purchased through the program.
For example, some products must be 16 ounces in weight and other products must contain whole wheat or meet certain whole grain requirements. Today there is no gluten-free bread that qualifies under the WIC program.
Janis:
Javier’s mom returned home from the grocery store feeling defeated. Her first call was to the wonderful dietician they had met with who suggested the WIC program. She asked her lots of questions about why certain products were allowed and others weren’t. The dietician was shocked. How could a program designed to help families with a child with specific food issues not allow gluten-free food products? She vowed to help Javier’s family utilize their benefits. So she pulled up their state-specific guide to the WIC program and started highlighting all of the naturally gluten-free product options like fresh, frozen and canned fruits and vegetables, corn tortillas, rice, cheese, yogurt, eggs, peanut butter, beans, and a few choices of rice-based cereals.
Vanessa Weisbrod:
School-based food programs are another source of food for low-income families facing food insecurity. The National School Lunch Program provides qualified students with access to free meals at school. And today eight states offer universal school meals, so every child in the state eats free breakfast and lunch. A gluten-free meal option is required under all of these funding provisions. For families facing food insecurity, having two free meals a day for their children can be a huge financial relief.
Janis:
Unfortunately Javier’s Preschool did not participate in the National School Lunch program, so regular food support at school would have to wait until he started kindergarten. However, with the help of some advocacy from their dietician, they were able to convince the preschool to start offering naturally gluten-free snacks for all the children. So Javier and his celiac classmate could partake without their parents needing to send an additional food from home. They started serving cheese sticks, popcorn, vegetable sticks, and potato chips. This definitely helped a little.
Vanessa Weisbrod:
Food insecurity is a massive problem in the celiac disease community. Currently there is no treatment for celiac disease except for the gluten-free diet. Without access to gluten-free food, there is no treating this autoimmune disease. So how can medical providers support patients with celiac disease who can’t afford gluten-free food? What are the best practice for clinic-based screening? What resources are available to actually help patients if they screen positive for food insecurity? We’ll discuss this and more on today’s episode of Raising Celiac.
Today we talk about food insecurity in celiac disease with Dr. Nan Du from Boston Children’s Hospital. Dr. Du is an attending in Boston Children’s Hospital division of gastroenterology, hepatology and Nutrition, and an instructor at Harvard Medical School. Dr. Du received her medical degree from the Warren Alpert Medical School at Brown University, and completed her residency at Yale New Haven Hospital in Connecticut. She completed her fellowship in gastroenterology at Boston Children’s Hospital. Dr. Du’s research interests include the diagnosis and management of celiac disease, early infant nutrition and environmental exposures.
She’s particularly interested in the nutritional adequacy and safety of the gluten-free diet, as well as better understanding how to support families with celiac disease experiencing food insecurity. Welcome Dr. Du to Raising Celiac.
Dr. Nan Du:
Thank you for having me.
Vanessa Weisbrod:
So let’s start at the beginning. Can you tell our listeners what it means for someone to experience food insecurity?
Dr. Nan Du:
Sure. Yeah. So food insecurity as defined by the USDA is defined as the lack of consistent access to enough nutritionally adequate, safe, and acceptable food for an active and healthy lifestyle. In 2022, one in six children in the United States live in a food insecure household. And I always like to stress that food insecurity does not mean that you don’t have access due to financial issues, but it also can mean just lack of access to certain types of food, which I’m sure we’ll dive in a little bit more, but that’s especially important for our celiac patients.
Vanessa Weisbrod:
So while we’re here, can you talk about other social determinants of health and how these screenings have become important in healthcare?
Dr. Nan Du:
Yeah, this is a huge topic, so I don’t know if I can totally do its service in the brief amount of time that we have, but we know that childhood food insecurity has been associated with poor health outcomes, developmental risk, mental health problems, and poor educational outcomes. To broaden that, social determinants of health are non-biological factors that directly impact health and wellbeing. For children, this basically means factors such as the safety and stability of a child’s home and their neighborhood and their community, their access to healthy foods like we talk about with food insecurity, convenient transportation, health service access, like is there a hospital or clinic nearby? And also just good school systems. And basically the big question is what is available in community and what is the social context?
This also includes exposures to environmental toxins, violence and family stress that can be harmful to health. And this is an issue that’s being looked at worldwide and researchers from the WHO have actually demonstrated the importance of social determinants, noting that social position is very closely tied to health outcomes. And in the US this unequal access to resources really promotes health inequity. And a lot of these are based on socially constructed characteristics. And so what we’re finding is that some of these actually have a bigger influence than even genetic factors. And so by screening and at least trying to ask questions about this, we can at least attempt to try and address some of these inequities.
Vanessa Weisbrod:
That’s so wonderful. I’m so happy to hear that clinicians are getting involved in this. Let’s talk about why is it important for clinicians to be involved in discussing food insecurity specifically with celiac patients?
Dr. Nan Du:
I think this really simplifies down to one statement, food as medicine. Access to nutritious food is really critical to the health and the resilience of our families. And this is incredibly important for our celiac patients, and I feel like many of them will feel like I’m saying the same thing that they already know, but our only current treatment for celiac disease is a gluten-free diet. There’s many drugs coming down the pike, but right now that’s not currently available. And so in the situation is as, we wouldn’t want our families to miss doses of medication due to insurance or transport issues. It’s the same thing from a celiac perspective and for our patients, in that our role is advocating for access to safe and gluten-free food is just as important as when we try and advocate for families who need medications.
We also know that a gluten-free diet is substantially more expensive than gluten containing counterparts. So we know our patients are more at risk. So I think it’s important for clinicians to be involved to add that additional perspective and also so patients know that this is something we’re aware and we want to be involved to help them out with.
Vanessa Weisbrod:
Absolutely. Can you talk about what tools are available for clinicians to screen patients for food insecurity?
Dr. Nan Du:
There’s a few screeners available. Perhaps the most efficient and the one that’s been most supported thus far in literature, is this two questionnaire, Hunger Vital Sign is what it’s called. And I’m just going to give you the two questions that you can ask. It’s within the past 12 months we were worried our food would run out before we got money to buy more. That’s question one we would ask our families, either yes or no. And then the other one is within the past 12 months, the food we bought just didn’t last and we didn’t have money to get more. And again, we have them answer yes or no. And if families answer yes or no to either of these, what we’d usually recommend is considering a referral to social work or at least to ask some further questions unlike access to food and food insecurity.
There are other questionnaires that are used from a research standpoint such as the National Center for Health Statistics, US Household six item short form Food Insecurity survey. There’s also an 18 question one, but a lot of these are quite long and not I think the best thing to use in a busy practice. The other nice thing about the Hunger Vital Sign, it’s been validated in a busy pediatric practice before, so that’s why I usually try and advocate for that tool.
Vanessa Weisbrod:
From a practical standpoint, how did these screening tools get used in the clinical setting? Who asked the questions?
Dr. Nan Du:
This is such a good question, and I will be honest. I don’t think we have found the perfect solution yet, and I think this is an area where we need to do better, to be totally honest. And also I think it really depends on the clinic. Some clinics have families fill out a form that has these two questions when they check into the appointment, and so it’s completed by the time the clinician comes into the room. Some can have clinicians ask the questions directly during the appointment, maybe during when they’re asking about social history. Some may ask it during the time when the nurses are drawing their vitals and basically it serves as an actual vital sign. It’s a sign for you maybe that you need to dig deeper just on a social level.
I wish I had just a simple answer to be like it should be just done at this time. But I realized that all different clinics are designed in different ways. So I think this is where clinicians especially might have to think with their staff on where they think it works with the clinical flow.
Vanessa Weisbrod:
How challenging is it for you to ask your patients about food insecurity?
Dr. Nan Du:
I think it comes with a little bit of practice as you figure out personally what works with your clinic flow and your style and how you interact with your patients. From my perspective, I will usually throw it in with questions when I ask about how’s school? How’s the gluten-free diet going? What do you do when you go out with friends or do you have any issues getting gluten-free food? I really want families to feel comfortable talking about this with me, because it’s really just part of their medical visit. And I also really want to make sure they have all the resources that they need to succeed. And that’s kind of how I started off with. And the other thing is I usually don’t like to start off with this question, I usually like to kind of ease into it, but I still want to leave enough time in the visit for us to talk about food insecurity if it actually is an issue. So somewhere in the middle of the appointment.
Vanessa Weisbrod:
What do you advise for other clinicians to normalize asking these food insecurity screener questions? I know everyone isn’t quite as skilled or comfortable with it as you are.
Dr. Nan Du:
I think a lot of it is practice. Don’t get me wrong, it is challenging when you’re trying to remember all the things you need to ask and talk to your patients about. I think my best advice is start incorporating in whenever you do remember it, try it in different parts of your appointment as you figure out what works with your flow. Sometimes I actually will write it directly in my note, which I sometimes use as a template for what questions I want to ask. So when I get to it it’s almost like an additional reminder. Like I said before, I don’t usually have it as a first thing we talk about, but more after we’ve broken the ice, we’ve talked a little bit about how school is going.
And I will often start the discussion by saying, hey, the gluten-free diet’s pretty expensive, I just wanted to check in about access to gluten-free food. Some of my other patients have been having maybe some issues, let me know, I’m kind of curious. To really make sure that they’re comfortable knowing that they’re not alone.
Vanessa Weisbrod:
That’s a really good point. Knowing that they’re not alone can really help them feel more comfortable. Do you think that patients are ever afraid to disclose to their physician that they’re struggling to provide food to their child with celiac disease?
Dr. Nan Du:
Yeah, of course, I’m sure some patients are, and I can totally understand that. I think our job as physicians, we really don’t want to judge and we really want to just offer assistance in any way we can. I think we’re learning a lot how when you’re coming to see your doctor, we are not just talking about the medications, but also the whole system and what is around the patient, all of the social determinants. And so I also realized that sometimes individuals may not be comfortable on the first visit when they’re asked, but I will continue to ask it and make it a regular part of their routine visits so they know that it’s coming.
And we’ve actually also found that when we screen patients in their clinic visits, that it often doesn’t happen on their first visit or second visit, where food insecurity ends up being an issue. And so I just want them to know that if it’s not an issue now, that’s okay. If it is in the future, I’ll still continue to care and want to know about that. And so I think also being open about it and being consistent of when you ask the questions is also an important thing.
Vanessa Weisbrod:
Absolutely. Is there any risk to a parent disclosing that they’re struggling to provide food for their child? Could it lead to involvement of the Department of Children and Families looking into neglect?
Dr. Nan Du:
I really want to emphasize to families that are struggling to provide food for your child. This will not cause DCF to look into your family for neglect. This is really just us trying to get all the resources we have in our clinic available for you. Because if we don’t know, then we’re not able to help. And so I really want to stress that because I know that has been a fear and concern in the past that if they indicate that they’re not able to provide food to their child, they may be investigated. And that is not our goal in screening for food insecurity. Our goal is very much to contribute to the overall health of the family and not cause more stress.
Vanessa Weisbrod:
I think that’s the most important thing that you could have said today, in that we hear so often in our Celiac kids connection support group that families are so worried to bring up the idea of food insecurity to their doctor because they’re afraid they’re going to be reported for not being able to adequately care for your child. And so I hope that if there are families listening, they really take what you said to heart and can trust their doctor to help them in the process of getting food. So now that you have a patient that is screened positive for food insecurity, what happens next?
Dr. Nan Du:
That’s such a good question. And I think this really speaks to how when we are taking care of our patients, we’re not alone, it is not just doctors who are available to take care. We really have an amazing team that really supports us and supports the patients. And so I think when a family discloses that they have food insecurity or they do screen positive, I oftentimes will ask a few more clarifying questions in terms of just trying to get a gauge of the severity of it in terms of how often is this happening? Was there another change in the family’s life that maybe I missed when I asked prior questions on how things were going in their life? Was there a loss of job? Was there loss of housing? Because we know a lot of these things can be all interconnected. I think I always also like to mention how food insecurity can impact how you adhere to a gluten-free diet.
There’s been two studies that have come out that have actually shown that relationship. And I think also in the visit I’ll discuss how I really get to then draw on the amazing members of my team, such as our social workers and our dieticians, and how we’re going to set up some visits with them to help make sure that the resources that we have available through the hospital as well as through these two people can also get connected to the family. So usually in the visit that’s what I start with, and then I start making those connections and making sure I get approval from the family that these people can reach out.
Vanessa Weisbrod:
So talk to us about the role of the social worker and the dietician in supporting food insecure families with celiac disease.
Dr. Nan Du:
I wish I had more time to talk because I really want to rave about these two individuals in our team, because they really help support our families with these, with food insecurities. So our social workers usually we’ll kind of do even a more complete assessment in terms of what’s going on at home, in terms of, as we talked about, food insecurity is one of the social determinants of health, but there’s many things that are interconnected. So they might ask about in terms of electricity, is there housing stability? Is there transportation issues? Just trying to really gauge the multiple factors that can be involved when you have food insecurity. And they start connecting them to resources, because I think at least in Massachusetts, this is really state dependent. That’s one thing I do stress, but at least in Massachusetts, there’s many great supports that are available for individuals who need maybe some electricity support or relating to almost issues with housing landlords.
And oftentimes families are just not aware of those resources, are not able to connect to it. And so our social workers really help them with that. And then also just directly connecting them to food banks. And then if your hospital actually has a food pantry like ours do, they help connect them to that and make sure that they qualify for that. Our dieticians, man, our dieticians, really are the all stars of our celiac program, because I think the really important thing also to think about with the gluten-free diet, is that not all food has to have strictly the label of gluten-free on it. There’s a lot of also natural gluten-free foods, and our dieticians are absolute all stars on finding ways to make sure they can find more affordable, still safe options for our families on a gluten-free diet.
And we’ve started actually to do some classes related to that. I’m trying to find affordable meals for families to be able to fall back on if they need it.
Vanessa Weisbrod:
It’s really so challenging. I so sympathize with the mom in our patient story today, thinking about only being able to give her child six pretzels at a time so that she could stretch how far that bag of pretzels went. I can’t even imagine, I have two young boys at home and having to say, you’re only allowed to take six pretzels out of the bag at a time, it’s such a challenging thing. And so I agree the dieticians and social workers are just so key in helping these families get to a place where they can make things work. So thank you Dr. Du for all of this wonderful information.
We’re going to take a very quick break and when we come back we’re going to talk about your fascinating research on food insecure families with celiac disease, as well as how to connect patients to community-based resources. We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.
Speaker 4:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Welcome back everyone. So Dr. Du, let’s shift gears and talk about your research on food insecurity in the pediatric celiac community. Can you tell our listeners why you started doing this research and what you found?
Dr. Nan Du:
A lot of it as you can imagine is how research usually gets inspired is based on our patients. So as a fellow during COVID, I had a patient family who had celiac disease who were food insecure. They had incredibly limited supports from the government and then just also locally. And when I was diving through the literature, there was really limited amount on how one prevalent food insecurity was in the celiac populations, and really even less on how it impacts families. I’ll say there are two articles out that kind of came out in between or while I was doing the research. One was they were both kind of conducted in adults, which showed that dietary restrictions did make people more food insecure. And the second paper, which was modal, they used NHANES dataset, found that one in six celiac patients were less likely to adopt the gluten-free diet and had reduced daily nutritional intake.
But I think these were all in adults and these studies were actually being conducted around the same time I was starting to ask these questions. And I think the second reason why I got interested in this research, is in order to really get funding and support for the families and to really highlight this problem, you oftentimes have to first prove that there is a problem with data. So this is what really inspired the project as a hope that’s with some more concrete data we can really get people to help us start to generate solutions for the food insecurity that we know that our patients are having, but maybe we’re often not asking.
Vanessa Weisbrod:
So tell us what you found in this research. What were the interesting things?
Dr. Nan Du:
Sure. I realized I should actually give everyone just a really brief premise on what my research was on and what we did. Vanessa, as you explained beautifully, we did a study where we tried to determine the prevalence of food insecurity in families with children on a gluten-free diet. It was one of the first to determine the prevalence of food insecurity. And we also assessed how food insecurity affected the gluten-free diet specifically actually during the COVID pandemic. And we conducted an electrical survey via social media in 2021 where we asked individuals, the Hunger Vital Sign, the six item food security module, their gluten-free food accessibility, and then also a few other questions related to their social economic status.
And then going back to your question in terms of in the study what were the rates of food insecurity different in cities and rural areas? We found that rural communities had the highest rates of food insecurity and gluten-free food insecurity. And although food insecurity rates did not change significantly during the pandemic for the rural communities, small towns tended to be the most negatively affected by the pandemic with an increase in both rates of food insecurity and gluten-free food insecurity. I think it’s an interesting point, because I think when you think about it in terms of from a bigger picture of social determinants of health, you’re like, oh, maybe there’s a smaller, it might be small, but there’s more community supports.
But then at the same time, I think the pandemic very much highlighted the breakdown in the food production system where I think a lot of places in the US began to have lack of access to gluten-free foods because certain companies weren’t able to get their foods there just due to transportation issues. But yeah, I think it’s interesting because it also asks the question of how should we be distributing the resources to help food insecurity as well?
Vanessa Weisbrod:
Absolutely. So what was the prevalence of food insecurity in the pediatric celiac world?
Dr. Nan Du:
During the COVID pandemic, we estimated that it was about 24% for overall food insecurity and 27% for gluten-free food insecurity, and both increased during the pandemic. And what we also found that there was a population that were food secure but screened positive for gluten-free foods insecurity. So it was important to ask about both.
Vanessa Weisbrod:
That’s really interesting that a family could be overall food insecure, but then when asked specifically about the gluten-free diet, screened positive. And I think that really almost begs the question of why providers should be asking about food insecurity over time and not just at one point.
Dr. Nan Du:
I agree. I think our study really found that there’s, in terms of how you ask the question of food insecurity, it’s not a one and done question, it’s very much something that can change in between visits. And so I do think it’s important that you ask the question multiple times for sure. And also specifying about gluten-free food as well.
Vanessa Weisbrod:
Exactly. Because at their first visit with you after diagnosis, when they haven’t really switched to the gluten-free diet yet, they may not have gone grocery shopping and seen what those costs are. Much like our patient, Javier, that his parents felt very empowered and educated after that first education session with the dieticians, but it wasn’t really until they went shopping and saw what those bills were and how dramatically it was going to impact them, that they realized the food insecurity piece had come up. So definitely a plug for asking many times along the way.
Dr. Nan Du:
And I think the other thing I also want to stress is that I think it’s important also for physicians not to let their own biases also get in the way. Because I think the other thing, which was a little bit of a limitation of my study, is actually most people who answered for my survey were those who were in the privileged social economic status with income greater than 80,000. They were well-educated and from zip codes that were defined as comfortable and prosperous. It was actually a very well-educated, well-supported group of people. And yet we still found these levels of food insecurity.
And so I think it’s really important that people still ask the questions when maybe they might feel that the families are well-supported or maybe from a higher income level, because what our data shows is that people can still screen positive for food insecurity in our celiac patients at the higher income levels. And then I think that also gives the additional caveat that with our study, we found these levels in a population that’s relatively well-supported. What would we have found if we had asked in those of a lower social economic status?
Vanessa Weisbrod:
Absolutely, and this just brings up the point of income levels that are set for state and federal aid programs. They don’t take into account the cost associated with managing a special diet and what those additional hardships have. So we see families all the time that they’re trying to qualify their kids for free breakfast and lunch at school or qualifying for WIC or SNAP, and they make slightly too much money to qualify, but there’s no allowance in those calculations for what the cost is of the gluten-free diet.
Dr. Nan Du:
And I think this is a good time to at least mention that in terms of from a research standpoint, when they did market-based studies, that the gluten-free diet can be from two times to almost 10 times more the cost of a gluten containing diet. And so it can really make a huge difference the types of foods that you’re buying.
Vanessa Weisbrod:
For sure. So your data showed that 10% of families made the difficult choice to feed their child gluten because they couldn’t access gluten-free food. Can you talk more about this?
Dr. Nan Du:
I think this was actually one that we were actually a little bit surprised about from a finding standpoint. We found that there was a doubling basically of intentional gluten ingestion due to limited gluten-free food availability from prior to the COVID pandemic to during the COVID-19 pandemic, which we found was then the one in 10 households with a child on gluten-free diet, gluten was consumed intentionally because they had limited gluten-free foods. And what we also found was that in looking at our models, that your odds of having intentional gluten ingestion increased about five to seven times if you were either food insecure or gluten-free food insecure if you screened positive. And the other risk factor that put you at higher risk of this intentional gluten ingestion was if there was multiple household members who are following the gluten-free diet.
I always like to present this because I think it tells us, again, a few important things that we need to ask families when they come in for our follow-up appointments with celiac disease. One, it’s still important to ask about food insecurity. Two, it’s important to ask about gluten-free food insecurity because both of those increase the risk of intentional gluten ingestion. And three, it’s important to think about the general context is are there a lot of people in the household who need to follow a gluten-free diet? Because oftentimes you might think, oh, they might be better at following the gluten-free diet because more individuals are eating it, but there might be a component where that it’s actually then financially prohibitive and that they might actually then be intentionally ingesting gluten.
I do want to also stress as I know this isn’t totally relevant to the food insecurity perspective, but we totally acknowledge that there are moments in which individuals will have gluten ingestion. So this isn’t a comment on trying to do 100% on that, but I think what we’re trying to do is when families have a choice to not be forced to be deciding between do I get to eat or do I have to eat gluten?
Vanessa Weisbrod:
Absolutely. So as a physician, how do you counsel a family who comes to you saying that they are intentionally feeding their child gluten?
Dr. Nan Du:
I always first ask just, hey, just explain to me why. Because I think there can be a lot of things that are related to it. Some of it is their child’s not having symptoms when they eat gluten. So oftentimes that might just involve more education about the long-term effects of gluten ingestion on your intestine in terms of micronutrient issues, as well as issues with growth like osteoporosis and all of that. And then if it is financially motivated, I think it’s really important to meet the families where they are and to really ask, is it because things are expensive? Is it because they think it won’t do any harm? Is it because you don’t see any side effects?
I think it’s really important to figure out what’s the reasoning of it before then figuring out the best way to help these families. And then if it is related to financial reasons, I think it’s really important to again, offer the resources. I think some families may not want to take advantage of the resources, and that’s also okay, but I also want them to know that it is available for them, that it’s not a weakness or anything of sorts. In fact, this is part of the medical treatment for their child.
Vanessa Weisbrod:
So you’ve only touched on the tip of the iceberg with research in this area. What do you hope to learn next?
Dr. Nan Du:
Oh man, so many things. I think the first we talked about briefly already in the beginning of the podcast, which is screening. How can we best screen for food insecurity and gluten-free food insecurity? How can we do it in a manner that becomes well integrated in the clinic? And how can we get all providers involved in it? I think the second is something you also brought up briefly, and it was also in our patient’s case, is the role of school lunches. We are very lucky in Massachusetts as now they just passed that all school lunch and breakfast will be free for all students regardless of need. And we are actually starting to look into why some of our families don’t end up using that even when it is free. And so I think what the bigger question of that is, how do we utilize the resources that are available for our families in a more optimized way and to make sure that they are comfortable using it?
And if they’re not, how can we as medical providers get involved to make sure all parties are comfortable in providing safe gluten-free food to children with celiac disease? And then I think the third component also is emergency food services is another thing. And then the fourth is, what are other ways we can integrate food as medicine into our practice and have it be successful? And then the final thing is, I think that question about intentional gluten ingestion in the setting of food insecurity is one that I would love to see if we can prevent. We might be doing some research to see if there are certain things we intervene on, can we prevent that being something that families have to turn to?
Vanessa Weisbrod:
So let’s talk about resources. I think that oftentimes a lack of resources is a reason that physicians don’t like to screen food insecurity. So what can clinicians do to help a family that are struggling to provide gluten-free food to their child?
Dr. Nan Du:
And I totally acknowledge that with food insecurity is rising for all groups of people, it is not just those with celiac disease. And I think oftentimes when there’s a limited number of resources, that it can be at times hard for people to say, oh, save it just for this population. I think what I usually like to say is be creative, utilize all your community resources. Your patients have celiac Disease, but they’re also children and they’re also members of their community. And that there are ways to utilize the resources such as with our dietician, finding natural gluten-free products, whether it through the WIC program or whether through the food pantry. Those are ways to figure out how to use your community’s resources. And the problems you find in patients with celiac disease can also be found in those with food allergies. So ally yourself with other groups that might have similar needs to try and have a bigger voice at the table.
And I think the other thing related to that when we think about other resources, is that if you can’t find anything locally, think nationally as well. Because I think there’s many groups that are working on this, and you don’t have to reinvent the wheel every time. I think a lot of groups are more than willing to reach out and help. For instance, I know Vanessa, you and I actually helped out in a group in California where they’re talking about the food equity table, if I’m not mistaken, and hearing how they were brainstorming on how to get more resources specifically related to food insecurity in the community. And so I think sometimes signing up for those resources can be helpful as well.
Vanessa Weisbrod:
For sure. So food pantries in general do not have a great supply of gluten-free food. Why is this?
Dr. Nan Du:
It’s expensive, right? We talked about it before, and when they look at their bigger budget, they’re saying gluten-free food will technically only serve one to 3% maybe of their population. And the rising costs, oftentimes gluten-free products may not get the priority. And I think this is a really important point in that there are natural gluten-free products that in working with your dietician you can still access through the food pantry. And so it should not limit the food items that you have. I think in general we can advocate for food pantries to have gluten-free options, and I think that is super important in that even though it’s only one to 3%, there should still be options for our patients, but I also don’t want them to be limited by the availability and to know that there’s other options as well.
Vanessa Weisbrod:
Can you tell us about the food pantry at Boston Children’s Hospital and any other resources that you have available for patients?
Dr. Nan Du:
Yeah, so we’re really, really lucky at this hospital by some amazing work such as by Vanessa actually, and launching a new community program called, it’s Family Food Connections, is the title of our food pantry. It’s based in Jamaica Plain. It’s actually located in the Mildred Sea Haley Apartments, which is right next to one of our satellite sites at Martha Elliot. And it’s a Boston Housing Authority Development. And I think even when I say that title and all of the things there, I think what you’ll notice that’s amazing is that it’s near a satellite site. It’s in connection with another related to kind of housing, which is like we mentioned before, a social determinant. So it’s convenient for those in the community. And it also includes a lot of amazing resources such as free virtual cooking nutrition classes, and also there is a set aside gluten-free food. So families are able to go in and get bags of gluten-free products.
I think in order for them to qualify for that, they usually have to screen positive on a food insecurity screener. They’re assessed by one of the social workers and our GI department, and then are given that referral and then are able to go to this pantry directly. We also have some amazing options for individuals who are out of state or do not live nearby, and that through some generous donors we’ve been able to help support them with, they’re able to do mail order food packages. And then I think other resources in general is just that a lot of Massachusetts resources in terms of making sure they have supports on the other social determinants of health with housing, electricity bills and stuff like that.
Vanessa Weisbrod:
And Massachusetts has done such a good job with food at school. They are really are leaders across the state and food service programs that are making gluten-free options available for breakfast and lunch for kids with celiac. And so if families are listening that are in Massachusetts, either reach out to us for help or please talk to your food service providers, because gluten-free food is available in our schools here. So do you have any other suggestions for providers to help them with managing celiac families facing food insecurity?
Dr. Nan Du:
I think the big thing I want to stress is you do not need to reinvent the wheel. You do not need to feel that you have to set up an entirely separate food bank for gluten-free food. Start with local food banks, talk to them, explain what we’ve talked about in terms of the rising gluten-free food costs. It’s like we said, two to 10 times more, and work with local organizations and with local community members. Food insecurity I think has been rising in the last few years, but also there’s been an incredible recognition of how that impacts patient’s health. And so I think telling the stories of, for instance, our patient Javier and then also just other individuals might actually be able to at least get things moving already in existing resources instead of having to reinvent it or do more.
I think Vanessa, you probably can also list some actual groups that they could probably reach out to, so I’ll let you do that. But I really want to stress you don’t need to reinvent the wheel, there’s a lot of resources out there that you just need to connect to.
Vanessa Weisbrod:
Absolutely. And I think that for hospitals, partnering with a local food pantry is so important. One of the things we hear all the time from food pantries is that they don’t always have gluten-free food because they don’t know when they need it or who the families are that need it. And so if you have the ability as a hospital clinic to connect with the food pantry to let them know when you have patients that are screening positive so that they can be ready for them, I think that is something huge that you can do. It doesn’t cost you any money whatsoever, and it allows you to form a relationship and hopefully set up a pathway for your families being able to get food. One of the reasons that our food pantry at Boston Children’s works so well is that it is a direct referral from the provider to the food pantry.
And so we can track how many families are coming, how often they’re coming, where they’re coming from, and the types of food that they’re routinely asking for so that we know that it’s always available for them when they show up to get food. Forming those relationships with the pantries, having a system so that they know when families are coming and what they need, can just go so far in really making sure that they have consistent access to food. Thank you so much, Dr. Du for all of the wisdom that you have shared today. Now let’s find out where Javier is today.
Janis:
Javier is now in first grade at a local public school. He lives in a state that offers universal school meals and thanks to the help of his dietician has been able to get both gluten-free breakfast and lunch at school. During the school week. He gets gluten-free pancakes, muffins, bagels, and cereal for breakfast, and lunches that are nearly identical to those of his friends, like gluten-free pizza, sandwiches, hamburgers, and even macaroni and cheese. On Friday afternoon his cafeteria manager sends him home with a ziplock bag of gluten-free bagels and muffins to eat over the weekend, as well as vegetables harvested from the school garden.
Javier’s mom reached out to local food pantries for help, and now a local synagogue does a monthly collection of gluten-free food to help Javier and other families needing gluten-free foods for celiac disease. In her own words, Javier’s mom says, “This is so hard, I never thought we would need to rely on other people to feed our son. I’m grateful I didn’t have to feed him gluten and thankful that so many people have helped us. We will give back to all of them someday when we are able to.”
Vanessa Weisbrod:
Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists, to claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac, and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social @BostonChildrensCeliac on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Have a great month.
2/15 Season 2 Episode 1: Advocacy in Celiac Disease
Expert Guests:
- Marilyn Geller, Celiac Disease Foundation
Learning objectives:
1.) Describe the history of advocacy efforts in the celiac disease community
2.) Explain how celiac disease research is funded on a federal level
3.) Understand how health providers can play a role in advancing advocacy issues on Capitol Hill
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod:
Welcome to Season Two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac Program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple, to provide education to as many health providers and patient families as possible.
I’m Vanessa Weisbrod, and I’ve started a new role as the chief education and community engagement officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janice Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research, and offer suggestions for health providers to manage these complex cases.
Every episode of the Raising Celiac Podcast is accredited by the Boston Children’s Hospital Continuing Education Department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now, let’s get started with this month’s Raising Celiac patient story.
Janice Arnold:
For the past 15 years, Elena has been a devoted teacher known for her love of literature and dedication to her students. She had a completely normal childhood with no notable health concerns. She met her husband while in college in Wisconsin and has two healthy children. But just after her 37th birthday, her life took an unexpected turn when she began experiencing persistent health issues that left her puzzled and exhausted. It all began with unexplained fatigue, digestive issues, and a constant feeling of being unwell.
Initially, she attributed it to stress from work. But as the symptoms persisted, she knew something was amiss. Elena’s journey to a diagnosis was a winding road of doctor visits, tests, and uncertainties. Though it was only four months, it felt like four years of feeling unwell. Finally, after multiple consultations with her primary care doctor and a referral to a gastroenterologist, she received the life-changing news. She had celiac disease.
Vanessa Weisbrod:
Getting a celiac diagnosis isn’t always easy, and it doesn’t always happen on the first trip to the doctor. Because there are so many symptoms of celiac disease that often mimic other conditions, it can take some time. As awareness of celiac disease grows, the time to diagnosis is going down, but there is still more work to do.
Janice Arnold:
Elena found herself overwhelmed with the celiac diagnosis. Adapting to a gluten-free lifestyle while managing the demands of teaching proved to be a significant challenge. She had to rethink her daily routines, from lesson planning and meal planning to navigating the school cafeteria where lunch was provided free of charge to staff members. Despite the hurdles, Elena’s experience ignited a newfound passion.
Recognizing the lack of awareness about celiac disease in her school community, she decided to become an advocate. She started by sharing her personal story during a staff meeting explaining the impact of celiac disease on her daily life. She organized gluten-free awareness activities like hosting a fully gluten-free food table at every school festival. At her school’s festival of cultures, instead of her traditional Irish table, her culture was celiac disease.
Elena collaborated with the school cafeteria to provide gluten-free options, which helped more than a dozen other students and two other faculty members at the school who also had celiac disease. And she started integrating lessons about celiac disease and other food intolerances into her teaching curriculum.
Vanessa Weisbrod:
Advocacy is crucial in the celiac disease community. Advocacy efforts help raise awareness about celiac disease among the public, healthcare professionals, and policymakers. Increased awareness leads to better understanding, early diagnosis, and improved management of the condition. Advocacy plays a significant role in ensuring that people with celiac disease have access to necessary resources, including gluten-free food options, educational materials, and support networks.
Advocacy can influence policymakers to direct more funds to celiac disease research. Increased research funding support studies aimed at better understanding the disease, developing new treatments, and improving the quality of life for patients with celiac. And advocacy efforts can contribute to changes in government policies, such as gluten-free food labeling regulations and food safety standards. These changes are essential for ensuring the safety and well-being of people with celiac disease in all aspects of their lives.
Janice Arnold:
Elena’s efforts extended beyond the school walls. She reached out to local health organizations, participated in community events, and even spoke to her primary care doctor about how she could educate other physicians in the area about celiac disease so others might get a quicker diagnosis. Together, they presented a lunch and learn to the other practitioners in the practice. For Elena, this was just the start. She wanted to educate more doctors and make the community better for everyone with celiac disease.
Vanessa Weisbrod:
Advocacy efforts can lead to the development of legislation and regulations that protect the rights and well-being of people with celiac disease. This includes advocating for accommodations in schools, workplaces, and public spaces to ensure a safe and inclusive environment. Advocacy can also greatly impact research and disease understanding when it leads to increased funding for scientists.
But how can patients like Elena and doctors be involved in advocacy efforts in a productive way? Should everyone start calling their members of Congress, or are their coordinated national efforts to join? We’ll discuss this and more on today’s episode of Raising Celiac. Today, we talk about advocacy in the celiac disease community with Marilyn Geller, the chief executive officer of the Celiac Disease Foundation.
Marilyn is the primary spokesperson for the patient and caregiver perspectives on celiac disease at North America, speaking at numerous domestic and international conferences, and most importantly, testifying before the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies.
Under her leadership, the Celiac Disease Foundation secured annual appropriations language directing the NIH to devote sufficient focused research funding to the study of celiac disease for the first time ever at $9 million. Also for the first time ever, the Department of Defense is now dedicating highly coveted research dollars to celiac disease. Welcome, Marilyn, to Raising Celiac.
Marilyn Geller:
Hello, Vanessa, and thank you for inviting me here.
Vanessa Weisbrod:
So let’s start with how you got to the Celiac Disease Foundation. Tell our listeners your story.
Marilyn Geller:
Well, my story began in 2008 where my son, who was 15 years old, was diagnosed with celiac disease. He actually had been ill from birth. We had seen every specialist there was to see and we had no answers. And he was scheduled for a sinus surgery because they had determined that the reason why he could no longer get out of bed and had such GI issues could possibly be from the sinus drip that was going down the back of his throat because of his extensive allergies.
So they were going to do sinus surgery. And by this time, I can’t even enumerate the number of visits that we had had over his lifetime to try to figure out what was wrong with him. So they ordered a preoperative blood panel. And I said to his pediatrician out of desperation at that time, “Order everything and anything you can possibly think of because we know that our child is really ill and we really don’t believe it’s because of allergies.” And so she did, and she gave me a call.
And again, this is 2008 and we had never heard of celiac disease. And she said that he tested positive for celiac disease, that his antibodies were off the chart. I have to tell you, having never heard the word celiac before, I’m thinking the animal, the seal at the zoo. And then she said that we cannot eat gluten, and I’m thinking gluten, some chemical compound. We found ourself in the same situation that so many other parents do. And I’ll have to say that on top of this, my husband is a physician and he had not diagnosed our own son.
So at that point, she had said because his antibodies were off the chart that he actually did not need a biopsy, they were that high, which is not the recommended way to go, but I’ll just tell you our story. And the 15-year-old son who was an athlete and played football and soccer and tennis said, “If you are telling me that for the rest of my life I’m never going to be able to eat my favorite foods, pizza, pasta, burritos, I want a biopsy.” And of course, it came back positive. So at that point in time, it was everything that I could do to figure out how to feed him gluten-free foods.
In 2008, it was a very, very different market. And so I spent the first year really trying to make bread in the bread maker, cook our gluten-free food, and I was really just consumed with that. But about a year later, I realized that our child has a serious disease, a serious genetic autoimmune disease. Why are we not involved as a family with a foundation, with fundraising? And so we were very fortunate to find the Celiac Disease Foundation. I was actually invited to join the board of directors.
I served as the treasurer for a couple of years. And when Elaine Monarch, the founder, retired, there was an opportunity to step into her position. The board asked if I would consider it, and I did. And so 12 years later, here we are. My son is now 30. I will say it has still been a bumpy path from diagnosis to today, but that’s what keeps me going. Because for all of the parents, all of the children, the grandparents, our collective goal is to make sure that we get treatments and eventually a cure for this disease.
Vanessa Weisbrod:
Absolutely. It’s such an inspiring story to see how you used your son’s struggle with celiac disease and are now giving back in such a big way. So can you talk to our listeners about the historical landscape of advocacy and research funding for celiac disease at the federal level?
Marilyn Geller:
To me, it’s a very interesting story. In 2004, the Celiac Disease Foundation was instrumental in helping convene the Consensus Conference on Celiac Disease at NIH. And up until 2004, apparently our country believed that celiac disease was a rare pediatric disease that you could grow out of.
And Elaine Monarch served on the steering committee with other names, other KOLs in our field, key opinion leaders, and we were able to collectively convince NIH that this was not that rare pediatric disease, but that it was really one of the world’s most common genetic autoimmune disorders affecting both adults and children and you certainly can’t grow out of it. So from that meeting, led a 10-year effort to get the gluten-free labeling rule that the FDA put into place, voluntary labeling rule, in 2014.
So in 2019, I was invited to speak before Congress for the House Appropriations Subcommittee as to why there should be celiac disease research funding. Very, very fortunate that in our testimony, the chair of the committee, Rosa DeLauro, when I finished my testimony, said, “I have a colleague here in Congress and I’ve watched her all of these years be so careful in what she eats. She has celiac disease, but I never understood until now that this was really a serious disease.” And because of that, we were introduced to Betty McCollum, who is now the chair of the House Celiac Disease Caucus.
And through her efforts, we’re able to establish the caucus and be introduced to NIH. And since 2020, through the work of our patient advocates and the House Celiac Disease Caucus and all of the medical and research community, we’ve come together with Congress to assure that there’s been funding at NIH. So every year we work to renew this. Now, two years ago, we actually put in a request to the Department of Defense to find out if we could get celiac research dollars in what they call the Congressional Directed Medical Research Program.
And after only two years of asking, celiac disease was entered into the topic area just in 2023. And I’m very proud to say that in addition to the $9 million a year that’s been awarded through NIH since 2020, this year we have $7 million additional in grants through the Department of Defense.
Vanessa Weisbrod:
That’s so amazing. It’s really fun to hear this history. So I remember that NIH Consensus Conference in 2004. I was actually there with another hat on though. I was working as a reporter for Cox Newspapers and was assigned from their healthcare desk to cover that conference. And that was the day that I learned about celiac being a genetic condition.
My mom was diagnosed in the ’90s and her doctor never told her to have the rest of our family tested. So it was a long time later that I got tested in 2004, but it was because of that meeting that I learned about the genetic link and got myself tested. So it’s good to hear that history and how it all came to be. I want to hear more about the celiac caucus. Can you tell us how you were able to make this happen?
Marilyn Geller:
Certainly. So again, sometimes it’s better to be lucky, and we were certainly very, very lucky that Rosa DeLauro was compelled to speak with her colleague Betty McCollum about my testimony. So one of the things that happens in Washington, DC is you need to retain a respected advocacy firm to make certain that your disease voice is heard on the Hill. And we were very, very fortunate to be introduced to a firm called Baker Donelson, who has been representing celiac disease now again since 2020.
And we were also able to create a patient advocacy program where we’ve done in-person training and online training. And for those of you who are interested in the online training program, you can find it at iadvocate.celiac.org. But between the patient advocates that come from this program and the work with Baker Donelson, we were able to help rally other House representatives to join the caucus under Betty McCollum’s leadership.
Vanessa Weisbrod:
How is the level of funding for celiac research evolved over the years at NIH and DOD and what factors have contributed to those changes?
Marilyn Geller:
So as I mentioned, since 2020, NIH has allocated about $9 million a year for celiac disease research. And then again, DOD, this first year, $7 million. The factors are having researchers submit quality applications to both institutions. They go through rigorous review. And so it’s very, very important that not only is there a number of projects to choose from, but that the projects be well-supported in the institutions and have goals that really align with what the celiac disease community wants.
So in order to grow the funding, we just have to make certain that we submit more quality applications with, again, projects that resonate with our community.
Vanessa Weisbrod:
So to all of our researchers and scientists out there listening, submit great projects so that we can keep getting those dollars up. So how do you continue to increase the amount of funding allocated for celiac?
Marilyn Geller:
Well, in addition to the funding available at the federal level, we, the Celiac Disease Foundation, sponsor research grants directly. So from our donors, from our work in the celiac community, through our patient recruitment for Biopharma, we’re able to take those dollars and put them towards research grants.
So we now sponsor a number of research grants to put new investigators into the pipeline, to provide student mentored experiences during the summer, and looking forward to announcing next month a couple of more grants that will be in the health equity area and pilot projects in nutrition and education.
Vanessa Weisbrod:
That’s wonderful. Can you talk to us about the Celiac Disease Foundation’s collaborations with NIH and DOD?
Marilyn Geller:
So part of working with NIH is to make certain that the goals of the celiac community are heard when researchers are putting together their applications and they’re being selected. So beginning with the discussions at NIH that happened after my testimony, the next thing that happened is we sponsored a workshop with the organization, a medical society that I highly recommend that everyone listening to today join, the Society for the Study of Celiac Disease.
And we were able to bring NIH leadership to that workshop to really understand the goals of the celiac disease medical community, as well as the patient voice. From there, the Autoimmune Coordinating Committee at NIH invited celiac disease researchers and myself to again testify before the Autoimmune Disease Coordinating Committee, which does look at all of the different institutes at NIH that touch on autoimmune disease.
From there, they created a model where we could have a joint workshop, again, across the NIH institutes that would be involved to come up with a plan of what funding would look like. It’s become such a successful model that this is being utilized by both the Autoimmune Disease Coordinating Committee and NIH itself to look at how you can take diseases that have such great impact. We have about 1% of our country affected by celiac disease, again, making it a really common disease, and how those common diseases can receive funding.
Out of that has also come the NIH’s desire to establish an office of the OADR, which is going to be a coordinating office that will be directly responsible for coordinating all autoimmune funding across NIH, but again, based on the model that we were able to help put in place for celiac disease.
Vanessa Weisbrod:
So I know that you’re only in the early days of this and funding is only a few years old, but how do you envision the future of federal funding for celiac disease research, and what areas do you believe require increased attention and support?
Marilyn Geller:
Well, across the board for celiac disease, I think we would all say all of it. So there’s definitely folks looking at prevention. What could that look like? Certainly diagnosis, creating better diagnostic tools. We have research out there that is actually looking at being able to do a blood test without having to be consuming gluten for a long period of time to make the blood test work. Even the effort of drying the blood and mixing the blood with gluten ex vivo to determine if somebody has celiac disease.
So it’s certainly some very interesting things that can be done in diagnostics. And really important with those diagnostics because if we’re going to have celiac disease drugs in the future, we need to be able to test that they’re working. The other piece, of course, is disease management, how are we going to take care of people today, and then a cure, which I guess prevention could be a cure.
Vanessa Weisbrod:
Absolutely. So how does advocacy play a role in influencing federal funding decisions for celiac research? Do you have any success stories that you could share?
Marilyn Geller:
Well, I mean, certainly if we look at the fact that through our relationship with the Celiac Disease Caucus and the patient advocates who have taken the time to make personal appeals, either in their local districts with their representatives or at Washington, DC, but certainly rallying the troops to send emails. We have software at celiac.org where with a couple of simple clicks, you can fill out the template letters. It populates your name and your email and your address, and it directs it to the right people in the representative’s office to review it.
So between the thousands and thousands and thousands of email letters that have been sent by our advocates, these personal visits, the work of the caucus, all of those things really create the momentum on the Hill, and certainly in terms of the DOD funding to get that through in a couple of years to be added to the program when we’ve been told that there are other diseases who have been really struggling to be included for a decade plus. Again, just working on this focused effort with our advocates in the caucus.
Vanessa Weisbrod:
So we have a large audience of researchers, scientists, and medical providers who listen to this podcast. Any advice for how they can support advocacy efforts?
Marilyn Geller:
Well, I mean, certainly the iadvocate.celiac.org training program is fabulous for personal efforts. But of course, if anyone has a relationship with a representative or a senator or a special project, they can email us directly at advocacy@celiac.org. And then for those who come in contact with patients, certainly letting the patients know about the opportunity to advocate, again, starting with iadvocate.celiac.org.
Vanessa Weisbrod:
Great. So let’s shift gears and talk about patients like Elena. Obviously Elena had great motivation and passion for advocacy, but not everyone does. What are some simple ways that patients can join in with advocacy efforts?
Marilyn Geller:
Well, I keep saying join iadvocate.celiac.org, because what it really is is a series of video trainings so that it really explains to you, and then there’s links to resources and tools. And so you can self-serve on that. The simplest way is, again, on our website, there are email templates to support pieces of legislation. So if you go to celiac.org and you click on Get Involved, there will be a dropdown that talks about legislation.
So for instance, medical nutrition therapy for people with celiac disease under the Medicare program right now to receive dietician coverage for visits is legislation that we’re working on. You click the link. You put in your name and your address and your email. And you click the button again and your letter gets sent to Congress. And if you really want to, you can share again with a click of a button on your social media to encourage others to do it.
So to me, that’s the simplest way, click the links, and that email makes a dramatic impact. Because the more that the office hears about their constituents wanting these types of legislation, the more it happens.
Vanessa Weisbrod:
Absolutely. Can you talk to our listeners about current efforts to expand gluten-free labeling of food and medications?
Marilyn Geller:
All right, so I talked about the Medical Nutrition Therapy Act, but there is another act that is also on our website that you can click the button and encourage your congressperson to support, which is the Food Labeling Modernization Act. And what this does is it updates the front-of-package food labeling requirements. It requires updates to the ingredients list on packaged foods, and it makes the consumer friendly labeling view. So that when you go to look at your packaging, you can more readily tell if a product contains gluten in addition to the label of gluten-free.
So there’s that. The other thing that we have done is in terms of gluten and medication, we know that this is a concern of the celiac community, there is not an FDA guidance that has been implemented. There’s been a draft guidance that has been there for a number of years with comment, but right now no legislation regarding gluten in medicine. So what we have done is we have partnered with industry. We just announced our partnership with Mark Cuban Cost Plus Drug Company.
We’ve been working with Mark Cuban’s company for over a year to make sure that for our celiac population, they can have the consumer confidence for the drugs that they can get through Mark Cuban, that they’ll be able to be told, there’s an email line, there’s a telephone line, whether those drugs have gluten in them. So that’s another way that we’re trying to work not only with Congress and the federal agencies, but work with private industry to address our audience’s needs.
Vanessa Weisbrod:
Great. So there are lots of voices online and on social media talking about different hopes and dreams for advocacy. What is the best way for people to coordinate their requests for these federal agencies here a unified message?
Marilyn Geller:
Well, it keeps coming back to join iadvocate.celiac.org. One more time, iadvocate.celiac.org. Again, if that is too big a lift, you can go to get involved under celiac.org and you can click on the legislation and click those emails to support the legislation that’s of interest to you. Again, also so that you can know what new legislative opportunities come aboard, certainly on our website, on the homepage, celiac.org, you can sign up for our email updates. And then that’s really simple because it will just email to your inbox, “Here’s legislation to support.”
You click the link. It takes you directly to that piece of legislation. Again, you put in your name and your address, you click it, and you’re done. So again, iadvocate.celiac.org and use the celiac.org’s email templates for Congress. And of course, if you have a relationship that you’d like to strengthen with your congressperson or introduce to Celiac Disease Foundation, or if you have specific projects, please reach out to us at advocacy@celiac.org.
Vanessa Weisbrod:
And if for any reason someone did not get what the URL is, we’ll be sure to include it in the show notes. Before I let you go, Marilyn, let’s talk about the growing number of food insecure families with celiac disease. We know our healthcare providers, many who are listening today, are seeing them in their clinics and they need resources to help these patients treat their disease.
A number of these families are currently enrolled in the WIC program, but are struggling to find gluten-free products that are included. Can you tell our listeners about your work with the WIC program to improve access to gluten-free products?
Marilyn Geller:
Yes, thank you. So in addition to having our patient advocates send emails or meet individually with their representatives, we do work directly with the agencies. And so in the case of WIC, right now, currently, there are packaging and ingredients requirements that exclude gluten-free products like bread from the program. So for example, a loaf of bread has to be a certain weight and size. They have to contain whole wheat.
And if they don’t contain whole wheat, they can’t have added sugar and oil, which for those of us who eat gluten-free products unfortunately know that without the gluten, the sugar and the oil is what gives it the flavor. So based on that, the people who are enrolled in food subsidy programs are really struggling, as you said, to find gluten-free products, and particularly ones that are nutritious.
So in ’22, we were able to lead an expert group of 21 medical professional and nonprofit organizations in a letter that was addressed to the US Department of Agriculture to improve food safety for patients with celiac disease and who do participate in the special supplemental nutrition program for women, infants, and children, also known as WIC.
So the WIC program is designed to safeguard the health of low-income women, infants, and children up to age five who are nutrition risk by providing nutritious foods to supplement diets, information on healthy eating, and referrals to healthcare. So we recognized the agency for including naturally gluten-free products in the program, fruits, vegetables, proteins, but we really wanted to make sure that included in that were the products that we all need, bread, cereal, and those types of options.
And so again, that’s again how we can work directly with the agencies on behalf of the celiac community, and we regularly survey our celiac community to find out what the priorities are. And certainly food insecurity is first and foremost, particularly after the pandemic, on people’s minds.
Vanessa Weisbrod:
Absolutely. Well, Marilyn, this has been such an amazing discussion and it really highlights how there is so much room for advocacy engagement both from the public and from healthcare providers. Thank you so much for all of the wisdom you shared today. And now my favorite part of the podcast, let’s find out where Elena is today.
Janice Arnold:
Elena is still hard at work advocating for the celiac community. Her journey is a testament to the transformative power of advocacy. Her commitment not only improved her own life, but also positively impacted the lives of those around her. In her own words, Elena says, “I’ve witnessed a positive shift in understanding and support within my community.
However, raising awareness wasn’t without its challenges, mainly due to misconceptions about celiac disease. Overcoming these hurdles requires persistence and education. I’m dedicated to the cause and can’t wait to see what the future brings for us, perhaps a cure.”
Vanessa Weisbrod:
And now a word from the Global Autoimmune Institute.
Global Autoimmune Institute:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness, while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists. To claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac.
If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at @bostonchildrensceliac on TikTok, @childrensceliac on Twitter, or @celiackidsconnection on Instagram. Have a great month.
4/18 Season 2 Episode 2: Best Practices in Biopsies for Celiac Disease
Expert Guests:
- Dr. Imad Absah, Pediatric Gastroenterologist, Mayo Clinic
Learning objectives:
1.) Describe the prevalence and characteristics of isolated bulb celiac disease.
2.) Explain how a celiac diagnosis can be missed if a biopsy is not taken in the duodenal bulb.
3.) Understand best practices for endoscopy to diagnose celiac disease.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod (00:02):
Welcome to season two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple, to provide education to as many health providers and patient families as possible. I’m Vanessa Weisbrod and I’ve started a new role as the chief Education and Community Engagement Officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janice Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now let’s get started with this month’s raising celiac patient story.
Janice Arnold (01:42):
At the age of six, Daniel exuded boundless cheerfulness and energy, a vibrant child. He approached life with an infectious zest constantly seeking to delve into the wonders of the world around him, residing in a quaint town nestled in the heart of New Mexico, Daniel found joy in the simple pleasures of outdoor exploration. His days were filled with the excitement of gathering the renowned New Mexico red rocks and frolicking through meadows adorned with colorful wild flowers, though often returning home covered in mud from his outdoor adventures. Daniel’s parents cherished him wholeheartedly. It seemed like out of nowhere, Daniel began experiencing frequent bouts of stomach pain, bloating, and more fatigue than usual. At first, they thought it was just a phase. He was starting to eat more adventurous foods and had recently started kindergarten, maybe things would level out. But after several months of not feeling well, his parents made an appointment with the pediatrician. The pediatrician ordered a series of blood tests to see what could be causing Daniel’s symptoms. One of those tests was the tissue transglutaminase antibody tests for celiac disease. It came back positive more than double the upper limit of normal. The pediatrician immediately referred Daniel to a local gastroenterologist.
Vanessa Weisbrod (02:57):
Celiac disease is an autoimmune disease. The name celiac comes from the Greek word for abdominal, and the condition is a lifelong intolerance to gluten, A protein found in wheat, barley, rye, and also in oats that have not been specifically manufactured to be gluten-free. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing nutrients and cause a variety of other symptoms. When food enters the stomach, it’s broken down into tiny digestible particles which then travel through the small intestine. The small intestine is lined with vii, tiny finger-like projections that absorb nutrients from the food passing through. With celiac disease, gluten damages the intestine and causes the villi to break down, leaving a smooth lining that can no longer absorb nutrients.
Janice Arnold (03:47):
To confirm the diagnosis of celiac disease, Daniel’s gastroenterologist recommended an endoscopy, a procedure where a thin tube with a camera is inserted through the mouth. To examine the digestive tract, Daniel was scheduled for an endoscopy. Two weeks later after the procedure, the gastroenterologist told Daniel’s parents that he observed some inflammation in the intestine, but they would need to wait until the pathology came back to truly know if he had celiac disease.
Vanessa Weisbrod (04:13):
During an endoscopy, a gastroenterologist can gather several pieces of information to aid in the diagnosis of celiac disease. During the procedure, the physician visually inspects the lining of the small intestine for any sides of damage or inflammation such as scalloping or flattening of the intestinal villi. Small tissue sample biopsies are taken from the lining of the small intestine. These samples are examined under a microscope to look for characteristic changes associated with celiac disease like villous atrophy, increased intraepithelial lymphocytes, I crypt hyperplasia. The degree of damage to the intestinal lining observed during the endoscopy can help determine the severity of the disease. An endoscopy can also help rule out other gastrointestinal conditions that may present with similar symptoms to celiac disease like Crohn’s.
Janice Arnold (05:04):
One week later, the phone rang. Daniel’s mom was shocked when it was the gastroenterologist nurse calling to tell her that the biopsy for celiac disease was negative. They believed that the inflammation was likely due to a minor infection. They recommended following up in six months to repeat the celiac blood test. If symptoms persisted,
Vanessa Weisbrod (05:23):
Viral bacterial or parasitic infections can cause inflammation in the small intestine. Common pathogens include norovirus, rotavirus, salmonella, kaob, backer, and e coli. Because celiac disease, other food allergies or intolerances can cause inflammation in the small intestine as well. For example, lactose intolerance, milk protein allergy, and certain types of food sensitivities may lead to intestinal inflammation.
Janice Arnold (05:51):
Daniel’s symptoms did not go away. They had months when things felt okay and months when things felt terrible. Over the next three years, Daniel’s health continued to decline. He experienced stunted growth, chronic fatigue, and malnutrition. Despite numerous visits to the gastroenterologist, his condition remained a mystery. The doctor suggested dietary changes and prescribed several different medications, but none brought relief to Daniel’s issues. During this three-year period, his pediatrician kept checking his tissue transglutaminase levels, and each time they were elevated, sometimes only slightly and other times more than five times normal. Finally, Daniel’s parents feeling desperate and determined to find the root cause of his struggle, sought a second opinion from a pediatric gastroenterologist in a neighboring city. The new gastroenterologist decided to repeat the endoscopy with a more extensive set of biopsies. He mentioned that the original biopsies did not mention a biopsy taken in the duodenal bulb.
(06:49)
He described it as a place where celiac disease can sometimes hide. Three days after the new biopsy, Daniel’s parents got the call. The results revealed the unmistakable signs of celiac disease. Daniel’s parents were both relieved to finally have a diagnosis and frustrated that it took three years to uncover the truth. Their new gastroenterologist explained that the first endoscopy may have missed celiac disease if it was only present in the duodenal bulb at that time, and that it was important that he had a repeat endoscopy so it could be identified and treated to prevent the disease from further wreaking havoc on Daniel’s health.
Vanessa Weisbrod (07:26):
Historically, confirmatory biopsies were obtained from the distal duodenum only rather than the duodenal bulb. However, researchers have observed that some patients with celiac disease have histopathologic mucosal changes limited to the duodenal bulb. Only this subtype called isolated bulb celiac disease has been estimated to occur in up to 12% of individuals with celiac disease. Thus, to improve the sensitivity of biopsies and diagnosis, updated pediatric and adult guidelines now recommend obtaining both duodenal bulb and distal duodenum biopsies. But how can delayed diagnosis be prevented in the future? Do endoscopists need to separate the biopsies into separate containers for pathology review? Does isolated bulb celiac disease relate at all to the levels of TTG in the blood? We’ll discuss this and more on today’s episode of Raising Celiac.
(08:24)
Today we talk about biopsies and celiac disease with Dr. Imad Absah from the Mayo Clinic. Dr. Absah is the Celiac disease program director at the Mayo Clinic, as well as the Vice Chair of diversity, inclusion and wellbeing for the Department of Pediatric and Adolescent Medicine. Dr. Absah also serves as a co-chair of the Celiac Disease Special Interest Group for the North American Society of Pediatric Gastroenterology, hepatology and Nutrition. He has been involved in so many national celiac projects and I’m to be able to call him a friend and cos soccer parent as we frequently find ourselves cheering our sons on while together at medical conferences. Welcome Dr. Absah to raising Celiac.
Dr. Imad Absah (09:05):
Oh, thank you for having me. Thanks for the kind words, and yes, soccer is a big deal in my household.
Vanessa Weisbrod (09:11):
We love it, don’t we? Oh,
Dr. Imad Absah (09:12):
We just love it. It’s just too much driving.
Vanessa Weisbrod (09:16):
That is for sure. So before we get into your extremely interesting study on isolated bulb celiac disease, can you tell our listeners about your interest in celiac research and what sparked you getting involved in this area of study?
Dr. Imad Absah (09:30):
This goes back to time of my training as a fellow in pediatric gi, and this is before we had our second child. I saw a lot of patients come to Mayo for second opinion, sometimes third opinion, and truly what their problem was, they didn’t have enough education or they were just told your blood workers is positive, you have celiac or even undergo a biopsy. And then after that there was no guidance or education and it’s a lot to take on if you are a family with a new member who’s going to be on a restricted diet, it’s a major lifestyle change and a lot of those kids had some persistence symptoms. So I felt like there’s a gap. There’s a gap in knowledge, there’s a gap in care and there’s a gap in research unfortunately in celiac disease. And I felt that is something that I can really help with.
(10:15)
And then a little bit after that, we had a child, our second boy who’s a soccer player who has food allergies and some other GI problems and he’s on a restricted diet and I truly understood what does it mean to be the provider and the family as a patient who needs to be on restricted diet. And I think that also the combination made it the right fit I think, and I’m very happy that I chose that and I met a lot of great people like yourself and other collaborators we work with through this journey and I’m very happy with it.
Vanessa Weisbrod (10:47):
That’s so amazing. It always helps when you can sympathize with what your patients are going through. So can you talk to our listeners about your recent study on isolated bulb celiac disease in children? What were your objectives and key findings?
Dr. Imad Absah (11:00):
There has been many updates to the way to Diagnos celiac and the approaches, and there’s a lot of debate. You do biopsy, you don’t do biopsy for the most part when you do the biopsy. The leasing guidelines always said you could grab a biopsy from the duo. And for the listeners who are not familiar with the GI anatomy, the polyp is a very, very short segment of the small intestine that basically is the first part right outside the stomach before the du addin. And historically people have avoided grabbing a biopsy from there because there the tissue tend to be a little bit more commonly irritated by the stomach acid. There are glands called Bruner glands that produce acid than alkaline solution to protect the small intestine from the acid. So people said, well, there’s always some changes. It’s not clear if it’s ciac or not, we’re not going to do it.
(11:49)
But then the guidelines said, no, do the biopsy, but didn’t us, we need to separate those biopsies or not. And I’ve had seen many patients where they have missed the diagnosis because someone just bypassed the bulb, went straight to the second or third party they want and grabbed the tissue or they grabbed the biopsy and not sure where it is from. And I thought this might be just peptic du adenitis or mild rotation from the acid. It’s not celiac and the diagnosis was missed. So our objective was to look at our practice in two centers, Mayo Clinic and University of Illinois, Peoria, where we looked at all the pediatric celiac biopsies that we know we have separated the about biop. And then I wanted to answer two questions. Did we increase the sensitivity and find more patients? And was there cases where it was confusing, where the biopsy was taken from and separating them made it easier for the pathologist to identify?
(12:46)
And the short answer is yes, we increased the identification of patients with celiac that would have been otherwise missed by at least 10%, I’ll say 10 to 15%. And about one third of the time the pathology was blinded to where the biopsy was taken from and they didn’t know. So this would have been attributed as a normal variation of the bulb and a diagnosis would’ve missed too. So I think the key findings are, at least in patients who have milder symptoms and their celiac serology is less than 10 times the upper normal. If limbic, they absolutely need to separate their blood bios.
Vanessa Weisbrod (13:24):
That’s so interesting. And you think you’re going in for a biopsy to confirm celiac disease, you often don’t think about the fact that if the biopsy is taken in the wrong place or not taken in an additional place that you could miss the diagnosis and be told you don’t have celiac disease when in fact you really do. So is there a difference between the classic celiac disease that you see in the duodenum and the isolated bulb celiac disease, either clinically and pathologically or both?
Dr. Imad Absah (13:54):
That’s a great question and I want to add one more thing about what you just said, which is a hundred percent accurate. Yes, number of biopsies is important, not only where are they from, and also number celiac is patchy and you could miss it. And I would hate for any patient to undergo sedation and visit a procedure and come out and say, oh yeah, we didn’t find it. And that’s a lot of cumbersome, burdensome and patients continue to deal with unfortunate symptoms. So yes, location and number biopsies is important. There have been a previous report and they called it previously ultra short Celia, meaning it was in this ultra short segment of the bowel that’s called the WA bulb. There was a few other studies they call it like we did in our paper, which is isolated bulb celiac disease, which I think is more appropriate.
(14:38)
I’m not sure the ultra short, I like that part. And those patients actually tended to be older at the age of diagnosis, at the time diagnosis. And they also had milder symptoms like they had less amount of diarrhea and anemia, which I think may have contributed to them being missed for a longer time or had a delayed diagnosis, which I think may be why they are a little bit older at the time diagnosis. So that’s from clinical standpoint. From lab standpoint, 90% of the patients who we identified who have only isolated bulb only in the bulb disease, celiac disease, their serology was about three times apart. The normal limit only if the normal limit, let’s say was four, most of those people were like twins or 15 only. And a lot of times that would be regarded, oh, it could be false positive. And that’s again another reason why they would be missed.
(15:30)
Where most patients who would have what’s called conventional or typical celiac disease, their TTG was much, much higher. Anywhere from 10 15 times upper range of normal pathologically. Those patients for the majority, they have only disease in the bone. There was nothing beyond that. Now in the histology and pathology of celiac disease, there’s this commonly used classification that’s called marsh classification and not trying to use very complicated tables or classifications, but it just goes about the stages of inflammation. And the first stage, these finger-like protrusions that we call vili, they’re still intact, but there’s a little bit of increase why the blood cell is called lymphocyte and that itself doesn’t justify a celiac diagnosis. So some of those patients with isolated bowel were about 30% of them had some lymphocytes, but there was absolutely removal ine. So where the flip of that most of the patient who had diffused disease had involvement of the bulb at the same time. Meaning again, if you have a diffuse disease and your titers are very high, if you get a biopsy from bulb or dis though you’ll find it. But if you have a lower value, you have milder symptoms, you could easily miss it if you do not get the bulb biopsy by itself.
Vanessa Weisbrod (16:44):
So interesting. So can you elaborate on the significance of identifying isolated bulb celiac disease early in a child’s development and are there any implications on their growth or development?
Dr. Imad Absah (16:56):
So I want to actually bring up a recent case that I took care of after we actually published the data and I felt very happy that I can share some data with the family. We had a kid that I saw for a second opinion and wasn’t told, you don’t have celiac and has been dealing with nausea, dominant pain, a lot of symptoms for a long time. And when I looked at the biopsies, I really couldn’t tell whether they’re taken from, it just says to what? And they didn’t label it that I couldn’t tell and I also couldn’t tell where they were obtained from. So I don’t know if they did the right thing or not, they may have and I just couldn’t figure it out. So we had this lengthy discussion, I showed them what we’ve done and I said the other option is unfortunately to go another endoscopy to see what’s going on.
(17:36)
And we were able to find the diagnosis. So they were very happy and the patient had a lot of almost tearful emotions about oh my goodness, and a few weeks into it they got better. That’s amazing. I say for the most part, development and growth is very important in children in general and I don’t think there’s major difference between celiac and isolated to the ball board. Conventional, both cohorts, if they don’t get diagnosed, they’re going to continue to deal with symptoms, they’re going to have problem with malnourishment and then again it’s a major pressure on them and their family. The quality of life is not good when you’re having symptoms and you can’t identify what’s goes and how to take care of it. And I always say if you get diagnosed very early, you’re going to deal with this much longer unless we take care of it. Your brain is growing, your bones are growing and addressing this early is very important and paramount to prevent complication down the earth.
Vanessa Weisbrod (18:33):
So true. It’s so true. Our patient here, the same story of they suspected celiac disease, did the biopsy, we’re told that they didn’t have celiac disease, but in fact that they did. And then it was years later of suffering from symptoms to really get to that answer, it’s hard enough to get diagnosed and there is so much trust that we put in our providers to do the right thing. And so I really hope that you talking about this, other providers will hear it and hopefully not miss those bulb biopsies. So how common is this isolated bulb celiac disease in pediatric patients compared to classic celiac
Dr. Imad Absah (19:14):
Data is limited. I would say maybe four studies including ours, maybe three to four studies, and that range from 12 to 15%. So in previous paper it was about 12% In the cohort that we looked at, which was about 244 patients, 15% have disease only limited to the bone. And again, those patients would have been easily missed if they didn’t have the bone biopsy obtained. So I would say one out of 10 to two out of 20, something like that.
Vanessa Weisbrod (19:43):
I mean that’s a huge number. We were just talking about the celiac cruise where there are 700 people with celiac disease. If one in 10 of those people didn’t have that biopsy taken, we would’ve missed a whole lot of people who could be on a gluten-free cruise.
Dr. Imad Absah (20:01):
Yes, and like you said, when the patient have big trust in us and we have been always, and we went to this field because we want to make people feel better and we want to make sure that we’re doing the best with the least invasive and these expensive thing. So the goal of this whole thing was to do the right thing from the first time so you don’t have to go back again or subject your patient to a gluten challenge of longer duration of symptoms.
Vanessa Weisbrod (20:27):
Absolutely. And I also wonder, we hear all the time about people who had a celiac test and then it was negative but they took gluten out of their diet and they feel better if some of these may have also been a misdiagnosis.
Dr. Imad Absah (20:42):
Absolutely. And each case is different and it has to be looked at by its own data and what been done and how that initial diagnosis was made. But yeah, that is absolutely true.
Vanessa Weisbrod (20:51):
Did you see any notable difference in symptoms and presentations between those with isolated bulb celiac and classic celiac?
Dr. Imad Absah (20:58):
So our cohort had about 244 patients as I said earlier, and about 15% of them we had isolated poly. So the sample size wasn’t as big. That I can tell a lot of differences. But if I put all the data together, what has been published before from Europe and from us, most of those patients had about the same number of symptoms in total, like how many symptoms did you present with? But they tend to be mild, they tend to be some mild nonspecific symptoms. They tend to have very subtle nausea or something like that. So that could be easily disregarded or missed where patients who had diffuse celiac or conventional celiac, they tend to have more symptomatic like diarrhea, anemia, more overt symptoms of malabsorption and maybe that’s why they get diagnosed sooner or earlier at their ages, usually younger at the time diagnosis.
Vanessa Weisbrod (21:50):
What about genetics? Any differences in the genetics of the patients?
Dr. Imad Absah (21:54):
We didn’t see much of genetics. There was something hinting toward DQ eight, but we truly, we didn’t find that much of difference in our cohort.
Vanessa Weisbrod (22:03):
Got it. Are there any specific risk factors or predisposing conditions that would be associated with development of the isolated bulb celiac?
(22:11):
I don’t think we have enough data to know the answer to that. I acDr. Imad Absahtually am curious to know what’s different about why some people have disease limited to the bulb and why others are diffused. And I think there’s one thing that hasn’t been answered yet and might be hard to answer, which is what happened with those patients if they don’t get treated, do they finally move to a conventional diffuse celiac or not? And I don’t know that we know the answer unless you actually biopsy them and keep them on the diet and they continue to have problems and see what happened, which no one would do. So it’s very hard to answer. I do think they are a unique type of patients. They have different presentation, they have mild or serology and milder symptoms, but I don’t know why it stops at the pub. In some patients where it has diffused presence in on the other patients, they do tend to be older and we know from a lot of previous data that younger patients have more symptomatic celiac and that’s why they get diagnosed younger. So yeah, more to do and more to learn I think with celiac research.
Vanessa Weisbrod (23:11):
Your next research project, of course the only current treatment for celiac disease is a gluten-free diet. Did you notice any difference in response to the gluten-free diet in the patients with isolated bulb celiac?
Dr. Imad Absah (23:24):
We did not. They both got better in a pretty similar timeframe, like weeks and months into recovery starting after the gluten-free diet transition. The serology in our cohort, it took about similar time. So if you look at the sample size and look at the rate, how many months did it take to normalize their TTG? It was pretty similar. It was about 15 months. Now there was a different study from Europe said that these kids, their serology normalize faster. We didn’t see that. So I think the response to gluten-free diet is pretty similar between both cohorts,
Vanessa Weisbrod (23:55):
But the message is the same strict lifelong gluten-free diet.
Dr. Imad Absah (23:58):
Yes, absolutely. Until we can start offering our patients something else, that is the only message we are doing now.
Vanessa Weisbrod (24:05):
Absolutely. So are there any ongoing or future research initiatives planned to look at this isolated bulb in celiac disease in kids or potentially in adults?
Dr. Imad Absah (24:15):
I think what we do in pediatrics also affect adult practice. So I know they are thinking about do we need to separate biopsies or not? And I think having a larger cohort like adult celiac patients would be very informative in one adult study before they found those patients have different type of age group like we did. So I think bigger dataset will give more information and hopefully can answer some of the questions that we couldn’t answer today. So yes, hopefully future collaboration including adult data and pediatric data can shed more light on what’s different about those isolated celiac patients and how do you treat them differently?
Vanessa Weisbrod (24:55):
For sure. So as you and I have talked about, it’s really hard to listen to stories like Daniel’s and the patient that you spoke about as well. No one wants to see a child go undiagnosed for so long. What practical recommendations would you offer to healthcare professionals for identifying and managing isolated bulb celiac so that other kids don’t have to go through this experience?
Dr. Imad Absah (25:16):
Well first advice is always listen to the patients and the families always revisit the initial diagnosis. If they were told that always there’s no harm in really looking at everything that has been done and then put those together and decide how to proceed. In the celiac ward, a lot of patients are misdiagnosed or they are waiting longer to be diagnosed or sometimes other way around. They were told they don’t have celiac but they don’t and you need to help them with that. In the isolated bone celiac patients, they all had mire symptoms. They all were older at the time of diagnosis and their TTG values were less. And then the era where we talk about maybe we don’t need a biopsy when the TTG is more than 10 times upper range of normal, if your patient doesn’t have a TTG value that high and you are going to proceed with an upper endoscopy to confirm the diagnosis, please obtain at least one, preferably two biopsies from the bowel and I prefer that you separate them so the pathologist knows that this is a bowel biopsy where the others are from the distal wain to help improve the diagnosis and hopefully avoid further scoping a further workout for your patients.
Vanessa Weisbrod (26:25):
I think also for data collection too, right, having them separated, will more long-term help you be able to look back at this?
Dr. Imad Absah (26:32):
Absolutely, because when we wanted to do this, initially we had about almost 500 patients, but when we wanted to look specifically at the isolated bulb, we had to only include the ones that their bowel biopsy separated. And that was 2 44. And when I was talking to Mike, I saying imagine if we had the whole 500 sample to look at. So yes, for data for cleaner cohorts and more informative information, that would be very helpful.
Vanessa Weisbrod (26:58):
So before I let you go, I want to mention to our listeners how truly amazing I think you are. As I mentioned in the intro, co-chair of the celiac disease special interest group at NAS began. Can you tell us more about this group and some of the things you’re working on across North America?
Dr. Imad Absah (27:14):
Well, I think you are biased a little bit because we are good friends, but thank you for the kind words. So Celiac interest group inside the National Society for Pediatric GI is a cohort of pediatric gastroenterologists, dieticians, nurse practitioners, and anyone who is actually a healthcare provider interested in providing care to celiac disease. Everybody’s welcome to join our group and those people who are from multiple institutions through United States, Canada and actually a few from Mexico are the people who would like to work with patients with celiac disease, disseminate the education, make sure that the available education out there is up to speed and up to date, provide a platform where we all can collaborate on gathering larger dataset. As we mentioned during this podcast, one of the biggest limitation is having enough data to generate significant outcome. So having multiple people from different institutions throughout the country is great, and the end goal of this is to optimize care for celiac patients, optimize education and generalize it, make it available for everybody, primary care provider, pediatricians, family practitioners, everybody who takes care of people with celiac disease.
(28:23)
We’re working on multiple exciting projects and you are leading very important one of them, actually more than one relating to education and making sure that what we put on our websites is up to speed and up to date. We also are working on two important projects that I really think will change the approach to celiac in North America. One is looking at the different performance of the serology testing in North America. The European guidelines talks about the TTG value and do you midwives here now not. And we are finally trying to tackle that by looking at all the different lab essays or lab testing that we have and predictability of celiac disease and soon to come. We’re presenting this at the digestive disease week and hopefully more to come with that. We’re also looking at what’s called mucosal healing and to certify that celiac disease is significant injury to small bowel where we absorb a lot of our nourishment and attrition and there’s a lot of data to that.
(29:20)
The healing is not a hundred percent like we think it is, and most of this data is extrapolated from adult or small pediatric study. So we’re trying to look at that too, because I think when we put those both together, we could actually say with more confidence, do you need a biopsy or can we sometimes omit the biopsy? Or how do you approach that, which is a very big ask now in the world of celiac disease, there’s a lot more to come from the celiac inter group at NASPA began. So stay tuned and hopefully we’ll update you guys.
Vanessa Weisbrod (29:50):
Thank you so much, Dr. Absah. This has been such an amazing discussion and I’m just so grateful for all of the incredible work that you’re doing. Now let’s find out where our patient Daniel is today.
Janice Arnold (30:05):
Daniel is now 12 years old and thriving in the sixth grade. He is once again filled with cheerful energy and harnesses his energy by running on his school’s cross country and soccer teams. He has no problem sticking to the gluten-free diet and is grateful that he could eat gluten-free food in his school’s cafeteria. In his own words, Daniel says, I don’t really remember the drama of getting diagnosed, but I’m grateful that my parents were advocates for me and found the right doctor to figure out. I have celiac disease. The gluten-free diet is hard sometimes, but I know it will keep me healthy and let me do everything I want to in life. I hope that lots of doctors will listen to this podcast episode so that no other kid has a delay like I did.
Vanessa Weisbrod (30:53):
And now a word from the Global Autoimmune Institute
Global Autoimmune Institute (30:57):
Raising Celiac is brought to you by the Global Autoimmune Institute. We fund scientific research in medical education to improve diagnosis and treatment in autoimmune disease. Please visit our website@autoimmuneinstitute.org for the information and resources you need. That’s autoimmune institute.org. We hope you enjoy raising celiac.
Vanessa Weisbrod (31:22):
Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.
11/14 Season 2 Episode 3: Predicting Celiac Disease in Type 1 Diabetes
Expert Guests:
- Dr. Danny Mallon, Pediatric Gastroenterologist, Cincinnati Children’s Hospital
Learning objectives:
1.) Understand the relationship between type 1 diabetes and increased risk for celiac disease in children.
2.) Explore the subtle signs of celiac disease that may appear in patients with type 1 diabetes, even in the absence of traditional digestive symptoms.
3.) Gain insights into emerging screening methods that aim to improve the early diagnosis of celiac disease and reduce the need for invasive testing in children with autoimmune conditions.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod:
Welcome to season two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple. To provide education to as many health providers and patient families as possible. I’m Vanessa Weisbrod and I’ve started a new role as the Chief Education and Community Engagement Officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janis Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories.
Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. We’ll also drop that link into the show notes.
Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now, let’s get started with this month’s Raising Celiac patient story.
Janis Arnold:
Emily was diagnosed with type 1 diabetes at the age of eight. Her family quickly adapted to managing her condition, learning the ins and outs of blood sugar checks, insulin shots, and meal planning. At every appointment, Emily’s doctors reminded her parents that children with type 1 diabetes are more likely to develop other autoimmune conditions, particularly celiac disease. Still, Emily showed no obvious signs of digestive issues, so the possibility of celiac disease was far from their minds.
Vanessa Weisbrod:
Screening for other autoimmune diseases in children with type 1 diabetes is crucial because these conditions often co-occur, increasing the risk for complications. Early detection of diseases like celiac disease and thyroid disease allows for timely interventions which can improve long-term health outcomes and quality of life. Managing multiple autoimmune conditions can be challenging, but regular screening helps ensure that symptoms are caught and treated before they become severe. Additionally, proactive screening reduces the likelihood of misdiagnosis, which is vital for effective disease management in this vulnerable population.
Janis Arnold:
As time passed, subtle changes began to surface. Emily often felt more tired than usual, complained of occasional stomach aches and seemed bloated after meals. She also had frequent headaches. Her parents thought these symptoms might be connected to her diabetes management or simply growing pains. But as Emily’s energy levels dropped and the symptoms persisted, they decided to bring it up with her doctor.
Vanessa Weisbrod:
The most common symptoms of celiac disease include gastrointestinal issues like diarrhea, bloating, and abdominal pain, which can lead to weight loss and malnutrition. However, celiac disease can also manifest with lesser known symptoms such as fatigue, joint pain, and skin rashes. In some cases, individuals may experience neurological symptoms including headaches, brain fog and mood changes. Because symptoms can vary widely and may not always involve the digestive system, it’s important for individuals at higher risk of developing celiac disease to be regularly screened.
Janis Arnold:
During a routine checkup, her doctor ran some additional tests including a celiac disease screening since children with type 1 diabetes are at higher risk. The results revealed elevated tTG-IgA levels, suggesting that Emily might have celiac disease. Although she wasn’t showing severe symptoms, her doctor recommended further testing to confirm the diagnosis. Emily received an endomysial antibody or EMA test, which came back positive. With these results, her doctors explained that a biopsy of her small intestine was necessary to confirm whether the gluten was damaging her intestines.
The idea of Emily going through a biopsy was daunting for her family, but they wanted to be sure before making any major dietary changes. Living with diabetes was hard enough. The biopsy results were clear. Emily had celiac disease. The damage to her intestines explained her fatigue, stomach aches and bloating. Though it was overwhelming to learn she had to manage not just one but two lifelong autoimmune conditions, Emily’s parents were relieved to finally have answers.
Vanessa Weisbrod:
Current guidelines recommend that children with type 1 diabetes be screened for celiac disease at the time of diagnosis, and again, between two years and five years regardless of symptoms. This screening typically involves blood tests to measure levels of tissue transglutaminase antibodies, and in some cases endometrial antibodies. If the initial screening tests indicate elevated antibody levels, further evaluation including a biopsy is recommended to confirm the diagnosis of celiac disease. But what if there were a way to use the blood test to predict development of celiac disease in children with type 1 diabetes?
Could this help prevent complications and improve management of the diabetes? Could it reduce the need for a biopsy? We’ll discuss this and more on today’s episode of Raising Celiac. Today we talk about the possibility of predicting development of celiac disease in patients with type 1 diabetes with Dr. Dani Mallon from Cincinnati Children’s Hospital, whose research aims to improve screening methods for celiac in pediatric patients with type 1 diabetes. Dr. Mallon is also one of my favorite celiac doctors, and I’m so excited he’s agreed to join us today. Welcome Dr. Mallon to Raising Celiac.
Dr. Mallon:
Thank you very much for having me. This is a huge honor.
Vanessa Weisbrod:
And well, we are honored that you are here. So to get started, can you tell us what prompted you and your team to investigate better predictors for celiac disease in children with type 1 diabetes?
Dr. Mallon:
Yes, I would love to. I actually want to go back a little bit farther because the impetus for this research takes me back to my first real steps into the world of celiac disease as a clinician and a researcher. When I first arrived at Cincinnati Children’s, one of the earliest opportunities I had was the endocrinologists had reached out to our division, seeking some help with helping to manage the patients who had both celiac disease and type 1 diabetes. Because what they noticed was just like in a broader population of patients with celiac disease, many of the patients didn’t continue to follow up with GI, but of course, they continued to follow up with their endocrinologist for their diabetes management.
And the endocrinologists often didn’t quite know how to counsel them about their celiac disease, but they had a lot of questions, and so they wanted a partner in GI. The other question they had was, how do we implement this? At the time, back in 2014-2015, relatively nebulous landscape of a general recommendation to screen for celiac disease amongst patients with type 1 diabetes and with an interest in quality improvement, we set about trying to standardize a process for our screening. And that began a journey for me where I started to receive most if not all of the referrals for patients with type 1 diabetes and suspected celiac disease. We started to get these labs back and it wasn’t as black and white as the recommendations might indicate that they could be.
And so what we noticed was that there were plenty of patients with high tTGs, but whose biopsies came back normal when we took them for an endoscopy. And then there were plenty of patients who had very mildly elevated tTGs, but then when we took them to biopsy, they had full-blown celiac disease. So it started me asking questions about how can we try to identify the right patients to avoid unnecessary endoscopies? And also is there anything that we can learn about these patients before taking them to endoscopy that really gets us thinking that they truly have celiac disease?
Vanessa Weisbrod:
That’s so interesting, and I love that your experience really led you to ask these questions. It’s such a great way to start research. So how might early detection of celiac disease in these kids with type 1 diabetes help prevent complications associated with both autoimmune conditions?
Dr. Mallon:
So we know that patients with celiac disease are at risk for multiple health complications related to their celiac disease, including nutrient deficiencies like iron deficiency, osteopenia, poor growth, and then especially in patients with type 1 diabetes who already have a risk of cardiovascular disease from their diabetes. It seems like having a dual diagnosis may confer even more risk of cardiovascular complications. And so because many of these complications take time to develop, we take the stance that identifying and treating celiac disease as early as possible can help try to prevent those complications.
I think we do have definitely good studies that show that identifying celiac disease and treating it can improve weight, it can improve iron status and anemia. There are mixed results on whether or not it improves blood sugar control. There’s some studies that suggest that it doesn’t make a big difference, but there’s definitely some studies that it helps with blood glucose variability, trying to avoid very high or very low blood glucoses. And then we have mixed results on whether it has a meaningful impact on their quality of life because there are some studies that suggest there may be a reduction in their quality of life. Others say their quality of life is the same as other patients with type 1 diabetes.
Then there’s some studies that do suggest that there is an improvement in quality of life. And one of the most compelling sets of studies is when patients are identified as having celiac disease and they have good adherence to their gluten-free diet, they do have better outcomes both from a glucose control perspective as well as quality of life. So if we can put a team around them to help support them to achieve that great adherence to a gluten-free diet and great blood glucose control, then these guys can have a really excellent quality of life despite having two chronic diseases.
Vanessa Weisbrod:
And that’s what we all want, right? It’s so hard to have two conditions. It’s hard to have one condition, but getting to that place where you can manage it and have the best possible quality of life is just absolutely the most important thing. So your study identified elevated tTG-IgA levels greater than 10 times the upper limit of normal as a strong predictor of celiac disease. This may be an obvious answer to many in the celiac community, but for those listeners who are unaware of the ESPGHAN criteria, could you tell them about it?
Dr. Mallon:
Sure. We did set a cutoff of that 10 times the upper limit of normal because that’s what’s used in the ESPGHAN criteria and ESPGHAN is the European Society for Pediatric Gastroenterology Hepatology Nutrition. They’re our colleagues over in Europe and they proposed back in 2012 some criteria for diagnosing celiac disease without a biopsy. And then they revised those recommendations in 2020 to include a tTG-IgA level that is greater than 10 times the upper living of normal for that lab, and then also a second blood draw that identifies a positive endomysial antibody.
And that was also part of what we analyzed. And so we wanted to look specifically at whether or not the ESPGHAN criteria perform very well, specifically in a type 1 diabetes pediatric population.
Vanessa Weisbrod:
So how does the presence of positive EMA results complement the tTG-IgA levels in predicting celiac disease? Are both necessary for the strong prediction?
Dr. Mallon:
So our study did provide more data that helps support that there is a high positive predictive value that is a statistically important way of trying to identify how well a test performs at trying to predict true presence of disease. And so it does give a high positive predictive value when you have a positive EMA, but it’s not the whole story. And that was really what some of our early observations showed us is that we did have some patients with positive EMAs that didn’t have celiac disease when we took them for biopsy. So what we noticed is that having both a very high tTG greater than 10 times the upper limit of normal and a positive EMA, the vast majority of those patients do have celiac disease, but not all.
And that’s important. So it’s not always perfectly accurate in that there were two of our patients who had exactly those findings who had non-diagnostic biopsies. Even when we looked very closely at the biopsies again, we wanted to find out if this was just a misdiagnosis, but really we agreed again that this wasn’t true celiac disease at the time. And each of those patients have had a couple of years worth of follow-up and have still not been diagnosed. So it raises the issue that those criteria even put together are not perfect, and that’s important because if you put somebody on a gluten-free diet essentially for life, then that’s a really big deal.
Of course, we all agree. And we wanted to know if there are times when we have patients who don’t quite meet those criteria for celiac disease, but who do have abnormal labs to that extent.
Vanessa Weisbrod:
Absolutely. So one of the challenges that you mentioned in the study is that tTG-IgA can sometimes be falsely elevated in children with type 1 diabetes. How does your study address the issue of false positives and what improvements might it bring to reducing the unnecessary biopsies?
Dr. Mallon:
So what we’re proud of is that it was a large cohort of patients with type 1 diabetes, not just a mixed bag of other patients at high risk based on a family history or other autoimmune diseases, but specifically in type 1 diabetes. That we put forward a large group of patients. And our study mirrors a lot of the other studies that suggest that there are patients who have false positives. You’re going to have a higher rate of false positives if you have a mildly elevated tTG. And if you have a very elevated tTG, and especially because our assay allows us to detect way above the 10 times the upper limit of normal. The higher it gets, the more addictive it is that you truly have celiac disease.
And so mildly elevated tTG levels definitely are something where it’s not a done deal that you have celiac disease. And for patients who are thriving, it is appropriate to watch that patient, especially if the testing is done early in the diagnosis or at the diagnosis of type 1 diabetes. So we built into our screening algorithm to allow time to pass to see if those levels, especially mild levels, under five times the upper limit of normal to see if they get better over time. And I think that our study still supports that practice that a lot of celiac experts take on.
It also does help support the use of endomysial antibody as a secondary test that if it’s positive, it does increase your positive predictive value even at lower levels of tTG elevation. We also have this wide spectrum. And so if you have patients who have a persistently positive tTG or a rising tTG, and especially if they have a positive EMA, then it does seem like those are prime candidates to take for biopsy.
Vanessa Weisbrod:
Absolutely. So based on your findings, how might screening guidelines change for children with type 1 diabetes to improve this early detection of celiac disease?
Dr. Mallon:
This is a difficult question to answer because trying to come up with great recommendations that find all the patients that have celiac disease and don’t put too many kids under unnecessary procedures has been elusive because of the wide spectrum of what we find when we check these labs. And also our study lent more data to suggest that we can’t trust symptoms, and we only had some small signals over some other labs like ferritin might be a little bit lower in patients who truly have celiac disease, but it’s subtle.
And so what I do see for the future is that we should try to standardize an approach to screening, building an allowance for some abnormal labs and observation for mildly elevated levels, but also making sure that we take a patient to biopsy sooner if they’re showing signs of celiac disease, especially serious complications like poor growth. I think it does bear consideration and I think including endomysial antibody as a consideration for patients who have a screening positive tTG-IgA may help sway the decision about whether or not to take a patient for a endoscopy and biopsy. And we absolutely would endorse being cautious when assigning a lifelong diagnosis of celiac disease based on serologies alone.
Vanessa Weisbrod:
Absolutely. You don’t want to have to stick to that gluten-free diet if you don’t absolutely have to. So you mentioned that symptoms are not reliable predictors of celiac disease in this type 1 diabetes patient population. Can you talk a little bit more on why symptoms are less predictive in this group compared to the serological markers?
Dr. Mallon:
It’s a great question. I think it highlights that our serologic markers are pretty good, and we’re lucky to have such relatively accurate biomarkers, especially when they’re very high. But our population of patients with type 1 diabetes who are getting screened is definitely biased by selecting patients that are already at high risk of celiac disease because of their diabetes. So we’re going to have a disproportionate number of patients who have celiac disease but no symptoms because otherwise we wouldn’t necessarily be checking. There’s also a bit of, I think, some bias included when you have an abnormal lab and you go see a gastroenterologist to be evaluated for possible endoscopy.
You really dig in on those questions. Have you ever had any abdominal pain? Really even a little bit? And so I think we dig in and I think there also may be the power of suggestion. When you have an abnormal test, you start to second guess whether or not you’ve been paying close attention to any symptoms that may be subtle. And so I think it makes for a mixed population of patients who are asymptomatic with a high risk of the condition plus patients who may be labeled symptomatic, but in fact, the symptoms are relatively mild. And we already know that intermittent abdominal pain can be present in more than half of all school children, whether they have a disease like type 1 diabetes or celiac disease or none of the above.
And so because abdominal pain is common and because we’re asking such detailed questions and we have this patient population that’s already at high risk where you’re going to find some patients who are asymptomatic, I think that probably accounts for the wide spectrum of symptoms and no symptoms at all when it comes to celiac disease.
Vanessa Weisbrod:
What about the symptoms that are less classic or noticeable? I spent a lot of time working with families and kids going to school, and I’m always shocked by the parents who say, “Does it really matter if they have gluten at school? My child was completely asymptomatic.” And I say, “Well, what were their symptoms?” And they’ll say, “Well, they were diagnosed because they had really severe anemia or they weren’t growing quickly enough.”
And I always think to myself, “Well, aren’t those symptoms?” Because obviously it was not being on the gluten-free diet was causing them to be severely iron deficient or to not grow at the appropriate rate that they should be for a child. Is there any difference between the more physically noticeable symptoms and the more subtle ones?
Dr. Mallon:
When we get down to word choice, some people will call them symptoms versus signs, but in the end of the day, they’re all really meaningful and important impacts of the presence of celiac disease. And so I definitely take anemia and poor growth or poor weight gain as a very important symptom or sign because you’re already showing the signs of complications of celiac disease, not even just the presence of inflammation and damage in the intestine, but you’re seeing the downstream effects of it already. And we know that a lot of those take time to develop, and so we know that the problems have been there for a little while and are already showing themselves.
So I find that those sorts of non-immediate non-gastrointestinal symptoms, while they may be subtle and not immediately identified as celiac disease signs, they’re very important because they’re already down the road suffering the complications of celiac disease. I think those are really meaningful things because we can point to them and families can notice them, and they use those as motivation to stick to the diet even when they don’t have stomach aches or nausea or throwing up or diarrhea when they become exposed to gluten either knowingly or by accident. And I joke with my patients, I think it’s fortunate sometimes when patients have symptoms immediately when they have gluten because then they have this immediate feedback about whether or not they had gluten.
But I don’t love that it creates a fair amount of anxiety that they really don’t want to eat anything that has gluten because they’re afraid that they’re going to hurt. It’s definitely a double-edged sword about whether or not you have symptoms because it’s a tough sell for an asymptomatic patient who hasn’t developed any complications, but they know they have this other disease in celiac disease and maybe in our teenagers and more developed kids will know that it’s bad for them and their parents know that it’s bad for them, but they may not really internalize what it means to have this problem because they’re not having symptoms.
And so it really is a decision rather than a reaction to having symptoms whether or not they’re going to adhere to the diet. So it is a big challenge for our patients who are asymptomatic to follow the diet.
Vanessa Weisbrod:
For sure. Can you talk to our listeners about the role of the shared genetic predisposition, the HLA-DQ2 and DQ8 in patients with both type 1 diabetes and celiac and how the genetic factors could possibly impact your approach to screening?
Dr. Mallon:
So we know that HLA-DQ2 and DQ8 are shared genetic profiles between type 1 diabetes and celiac disease. It’s always been my understanding that DQ8 is a little bit more prevalent in type 1 diabetes, but it also accounts for a fair amount of the risk in celiac disease. And so we know that that underpins lot of the overlap between the two disorders. There’s also some science that may link the two through other immune mechanisms in the gut, and that probably has to do with their susceptibility conferred by the HLA genotypes. I think when it comes to clinical practice, there is some argument to checking a HLA genotype to see if they do have the risk of HLA-DQ2 and DQ8 because it’s not a hundred percent of patients with type 1 diabetes that have DQ2 and DQ8.
I think it also bears to note that not all patients with celiac disease have an identifiable DQ2 and DQ8. It’s just the very, very vast majority. And so I think there could be a role for checking genetics maybe to try to lower the anxiety and lower the frequency of screening. But I think for any patient, no matter what their genetic profile, if you do have an autoimmune condition that will put you at risk for celiac disease and/or if you have other signs or symptoms of celiac disease, it always bears evaluating even if you have been identified as having no DQ2 or DQ8 in your genetic profile. So I think there may be some promise of checking it, but I am always looking out for the exceptions to the rule.
And so I think there probably is some promise to using genetic profiling to try to stratify risk and guide screening over a child’s lifetime.
Vanessa Weisbrod:
Absolutely. So what are the clinical implications of your study for pediatricians managing children who have both celiac and type 1? How should they approach monitoring and diagnosing these patients?
Dr. Mallon:
Pediatricians, of course, serve indispensable function in managing their patients who have chronic diseases. There’s definitely pediatricians who shoulder a lot of the management for celiac disease and type 1 diabetes, especially if their specialists, endocrinologists and gastroenterologists, are not close by in proximity or if they have any difficulty in accessing them. I think it’s very important that pediatricians should know that screening is indicated and that it should be happening at regular intervals. I think it’s my experience that endocrinologists do a very good job of carrying out the screening in their patients, their type 1 diabetes, but pediatricians ought to know that it’s happening and/or filling in the gap if they’re not getting screened otherwise.
I think it’s also very important that the results that come back on celiac screening are not always black and white and that all patients should have their diagnosis of celiac disease made by a pediatric gastroenterologist who can sift through the nuances of serologic data. I think it’s also crucial to make sure that everybody taking care of these patients know that they should continue to eat gluten until a confirmatory test has been done and a consultation with a pediatric gastroenterologist has been done to make sure that any secondary testing or confirmatory testing is reliable because they’re still having gluten in their diet.
Vanessa Weisbrod:
Absolutely. And that’s one of the things, it’s always hard, right? That you have to make sure they’re still eating gluten, that they get the right test done and they get to the gastroenterologist because it’s not just getting to the gastroenterologist for the diagnosis, but all of the support that comes with actually getting that celiac disease diagnosis.
Dr. Mallon:
Right. And too often we have the experience of patients who have changed their diet or never really made it to the gastroenterologist, and were diagnosed with celiac disease based on labs alone, which our study and others have suggested that unless it’s very compelling, it may not be sufficient or accurate.
Vanessa Weisbrod:
So we’ve spent most of today talking about patients being diagnosed with type 1 diabetes first and then screening for celiac. Does it ever happen the other way around where a patient with celiac disease is then later diagnosed with type 1 diabetes?
Dr. Mallon:
Yes, it does. It is not common, but it does happen. And in some studies it’s estimated between five and 7% of patients with both celiac disease and type 1 diabetes were diagnosed with their celiac disease first. It has been a gratifying experience when I’ve helped make the diagnosis in my patient with celiac disease where you’re checking for signs of type 1 diabetes and they actually had it. And so getting them keyed in to the diagnosis of their type 1 diabetes felt like a real win for that patient where we knew what we were looking for in follow-up in their celiac disease. I think the other new things on the horizon, really they’re here, is screening for patients with celiac disease for the possibility that they have type 1 diabetes in early stages that are pre-symptomatic.
And so there’s this idea that there are patients with the antibodies that cause the damage in type 1 diabetes that lead to the pancreatic dysfunction where you don’t make insulin anymore. But that early stage where they just have antibodies but no symptoms and normal blood glucose is you can identify those patients through antibody screening. And then the data on preventing diabetic ketoacidosis, which is a very dangerous outcome of uncontrolled diabetes that oftentimes is present when patients first get diagnosed with diabetes. If you can prevent that condition as their first manifestation of their diabetes, then that is a really big win to prevent a life-threatening condition.
And then there’s also some new medications out that may have the promise of delaying the onset of type 1 diabetes. So it’s something that a lot of us in the celiac world are starting to do is to encourage our patients to be screened for type 1 diabetes through antibody testing.
Vanessa Weisbrod:
That’s so great. So how do the findings in your study impact the way healthcare providers should advise patients with both conditions on dietary management and long-term monitoring?
Dr. Mallon:
So I mentioned this earlier, but there have been a couple of great research studies that indicate that adhering to a gluten-free diet and being successful in the diligent management of diabetes leads to a better quality of life and better short and long-term health outcomes. Anecdotally, and also in those research studies, patients are often doing excellent at both and really thriving, but often are struggling with both too.
And so there’s so many factors that go into managing both diseases, that I’m a big advocate for a multidisciplinary team to handle both their type 1 diabetes and their celiac disease with a great gastroenterology team and a great endocrinology team, and it’s even better when those teams are working together.
Vanessa Weisbrod:
Absolutely. So important. So what are the next steps in research to refine these serological thresholds for celiac diagnosis in the type 1 diabetes population? Are there other markers or tests you believe could further improve the diagnostic accuracy?
Dr. Mallon:
Yes. So I think through this study and through reading other researchers’ excellent work, that the combination of endomysial antibody as a secondary blood test in addition to the tTG-IgA screening antibody, that combo is a really important way to try to identify patients with celiac disease. One thing that we’ve found in our study is that if you’re a little bit more exacting in the way that you do your endomysial antibody testing by finding the most dilute sample of blood that’s still positive.
It’s essentially getting a degree of positivity of the endomysial antibody can really help zero in on patients, much like the degree of elevation of tTG-IgA. I think there’s also some new advances in the field around genetic screening as well as new biomarkers like IL-2 and microRNA profiles, and then metabolomic data that’s still coming out. It seems like it’s relatively new on the block and not ready for clinical prime time use, but I think there’s real promise in some of these newer biomarkers for true celiac disease that may be incorporated into new screening approaches.
Vanessa Weisbrod:
Wow. Well, Dr. Mallon, this has been such an amazing discussion and we are all truly so grateful for all of the incredible work that you’re doing. So now before we end for the day, let’s find out where our patient Emily is today.
Janis Arnold:
Adjusting to a gluten-free diet while managing her diabetes wasn’t easy, but with the support of her healthcare team, Emily slowly regained her energy. Today, her family is grateful for the early detection, even though Emily’s symptoms were subtle. In her own words, Emily says, “Having celiac and diabetes is really hard, but I’m learning how to still be involved in fun things like birthday parties and hanging out with friends. I know that I’m going to grow up to be strong and healthy because my doctor found out I had both diseases really fast.”
Vanessa Weisbrod:
And now a word from the Global Autoimmune Institute.
Speaker 4:
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health. We are thrilled to support the production of this educational podcast.
Vanessa Weisbrod:
Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits for listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac on TikTok, at Children’s Celiac on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.
12/19 Season 2 Episode 4: Potential to Use IL-2 for Celiac Diagnosis
Expert Guests:
- Dr. Jason Tye-Din, The Walter and Eliza Hall Institute of Medical Research
Learning objectives:
1.) Explain how interleukin-2 (IL-2) functions as a biomarker and its potential to improve the accuracy and reduce the invasiveness of celiac disease diagnostic methods.
2.) Understand how IL-2 might address current gaps in traditional diagnostic pathways for celiac disease.
3.) Demonstrate how IL-2 could improve diagnostic outcomes for individuals living with celiac disease symptoms but without formal diagnosis
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod: Welcome to season two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple to provide education to as many health providers and patient families as possible. I’m Vanessa WeisbrodBroad and I’ve started a new role as the Chief Education and Community Engagement Officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janis Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now let’s get started with this month’s raising Celiac patient story.
Janis Arnold: Jonah was a 3-year-old marketing professional living in the beautiful mountains just outside of Denver. For years, he struggled with various symptoms that left him feeling exhausted and confused. Nausea, fatigue, and recurring brain fog became his unwelcome companions, but he never connected the dots. Like many others, Jonah thought he was just dealing with stress or a sensitive stomach.
Vanessa Weisbrod: Nausea, fatigue and brain fog are a common non gastrointestinal symptoms of celiac disease often triggered by gluten exposure. Nausea frequently accompanies acute reactions as the immune system responds to gluten by releasing inflammatory markers, fatigue and brain fog both linked to ongoing inflammation can severely impact daily life and mental clarity for those VA celiac disease.
Janis Arnold: After a particularly rough week where he experienced debilitating symptoms following a family gathering in northern Italy, Jonah decided it was time to seek medical help. He visited his primary care physician who ran some tests for nutrient deficiencies, all of which came back normal and suggested trying a gluten-free and dairy-free diet to see if his symptoms improved. Eager for relief, Jonah embarked on his gluten-free journey. He decided to cut out gluten first and then move on to dairy because the thought of giving up cheese and milk was too much to bear. At first, it seemed to work. His energy levels increased and his abdominal discomfort lessened. He was able to resume daily runs around a nearby lake. Jonah felt hopeful and believed he had found the answer. However, without a proper diagnosis, his experience was quite incomplete.
Vanessa Weisbrod: Starting a gluten-free diet before testing for celiac disease can interfere with obtaining an accurate diagnosis because the immune response to gluten diminishes. Once gluten is removed from the diet without active gluten in the system, blood tests may not show the typical markers and intestinal damage might begin to heal making a biopsy inconclusive. As a result, patients who stop eating gluten prematurely may face a longer, more complicated process to confirm or rule out celiac disease.
Janis Arnold: Months later, Jonah attended a gluten-free expo in the city where he learned more about celiac disease and the importance of proper testing. Intrigued. He spoke with a doctor who was a speaker at the event who recommended that he start a gluten challenge so that accurate testing could be done to determine if he truly had celiac disease. Jonah wanted to know if he really had celiac disease, so he scheduled an appointment with his gastroenterologist to discuss a gluten challenge. Further, what he learned was shocking. He would need to eat gluten for at least eight weeks before the doctor would run the tests.
Vanessa Weisbrod: The current protocol for a gluten challenge to diagnose celiac disease involves reintroducing gluten into the diet in order to provoke an immune response. Typically, patients are advised to consume three to six grams of gluten per day, which is equivalent to about two slices of bread for a minimum of six to 12 weeks before ordering serology and biopsy to confirm celiac disease.
Janis Arnold: Despite his determination to get an accurate diagnosis, Jonah found the task of eating gluten daily, overwhelming. He could barely handle the symptoms he had already experienced after just three weeks of eating gluten. Again, his body rebelled and he ultimately gave up due to the severe symptoms that returned. It was a stark reminder of his previous struggles and left him feeling frustrated and disheartened. He just couldn’t wrap his head around why doctors can diagnose thousands of conditions with one simple blood test, but to get diagnosed with celiac disease, he had to devastate his body for two months.
Vanessa Weisbrod: Potential to Use IL-2 for Celiac Diagnosis Undergoing a gluten challenge is extraordinarily difficult for many patients and far too many give up before they cross the finish line. But what if there were an easier way? What if it only took eating gluten one time? Or what if doctors could mix a patient’s blood with gluten to confirm a celiac diagnosis? We’ll discuss this and more on today’s episode of Raising Celiac. Today we talk about the future of celiac disease diagnosis using interleukin two with Dr. Jason Tyin, an adult gastroenterologist from Melbourne Australia who leads groundbreaking research on celiac disease at the Walter and Eliza Hall Institute. Dr. Titan focuses on understanding how the immune system responds to gluten aiming to improve diagnosis and treatment for those living with celiac disease. He also runs a specialized celiac disease clinic at the Royal Melbourne Hospital where he works to raise awareness and promote best practices for managing the condition. We’re excited to have him share his insights with us today. Welcome Dr. Tye-Din in to raising celiac.
Dr. Tye-Din: Thanks so much for having me Vanessa.
Vanessa Weisbrod: So to get started, can you explain the role of interleukin two in the immune system and why it’s gaining attention in celiac disease research?
Dr. Tye-Din: Yes, of course. So interleukin two is a chemical messenger in our body. It’s a chemical called a cytokine, and cytokines play an important role in how our immune system functions and essentially they’re tiny little proteins that communicate between cells and basically tell us how our immune system should respond to infections and other threats coming from outside the body. In celiac disease, we’ve shown that actually interleukin two are really important cytokine because when people with celiac disease are exposed to gluten, their immune system and in particular type of cell called a T-cell, starts producing a lot of interleukin two. So we can actually track the immune response in people with celiac disease by measuring interleukin two.
Vanessa Weisbrod: That is very cool. So can you tell us about the research that led to identifying IL two as a potential biomarker for celiac disease?
Dr. Tye-Din: Yes, of course. So there was a clinical study of a possible treatment for celiac disease several years ago. It was called NAX two, and this was a drug trying to induce immune tolerance to celiac disease. It was led by a doctor called Dr. Bob Anderson and he was taking forward this particular drug to try to treat people with celiac disease. And during the studies they noticed that people after the injection of NAX two had a range of cytokines in their bloodstream several hours after being injected with the main one being interleukin two. So we thought, this is a very interesting observation, what happens if someone with celiac disease actually consumes gluten? So we went on to do studies to get a whole range of people with celiac disease, have some gluten, and then measure the interleukin two in their bloodstream. And lo and behold, we could see that there was this very prominent increase in interleukin two at very low levels, but still a very substantial increase at around two hours it would start to increase and peak at around three to four hours after the ingestion of gluten and then it would drop away.
Dr. Tye-Din: So this signal was really first identified in that clinical trial, but subsequently there’s been a whole range of studies both initially in Australia and in Oslo, in Norway, but they’re now replicated around the world including some really good US studies, and it shows that people with celiac disease when they consume gluten, have this interleukin two signal in their blood hours after they consume it.
Vanessa Weisbrod: That’s so interesting and something that I’ve always people wanting to participate in clinical trials obviously go in hoping that there’s going to be a magic cure that comes out of it. And as we all know, that’s not always the case that many of these trials fail, but there are still really important things that researchers learn from these trials. It’s not just that the drug fails and it all goes away, but that potential new diagnostics and understanding of the disease can actually happen.
Dr. Tye-Din: Yeah, that’s such a good point. And I think that science and medicines, it’s an incremental journey and we learned things step by step and for that, for example, in that trial I mentioned you’re quite right, that particular drug wasn’t successful, but there was so much learned from the trial that is now informing how we develop and test new drugs. So for example, the interleukin two that was discovered is shaping up to be a very, very useful biomarker, so a way to measure responses and it’s now being used in a range of new trials for new drugs, for celiac disease and helping us understand how those drugs are working. So it’s been a really, really good outcome from that trial to learn about this interleukin two signal.
Vanessa Weisbrod: That’s great. So have previous studies looking at gluten challenges. Were there any correlations between IL two levels and the severity of symptoms in celiac patients?
Dr. Tye-Din: Yeah, this is a really interesting point. That’s when people with celiac disease eat gluten. We know that many of them will develop symptoms, not all though interestingly, maybe about 20% don’t get symptoms after being exposed to gluten. But there are people who can get mild symptoms like tummy upset or headaches, brain fog, G lethargy, and the acute ones tend to be things like nausea and vomiting, bloating and tummy pain, but then that can be all the way through to very severe symptoms. So there’s a broad range, and what was striking is that the interleukin two level associates very closely with the severity of people’s symptoms. So for example, if a person developed vomiting after having gluten exposure, then we would typically see a very high interleukin two level. If a person had milder symptoms, then the value tends to be lower. So this was the first time we’ve been able to discover what we call a biomarker for symptoms caused by gluten in people with celiac disease. And obviously that’s very useful because it allows us to track a very subjective symptom and so we can now understand when people have symptoms whether this is likely to be caused by gluten and also just sort of understand hopefully in the future, the mechanisms of why symptoms are happening in response to gluten. So the interleukin two signal is shaping up to also be this kind of symptom biomarker.
Vanessa Weisbrod: Does the IL two level rise in all patients with celiac disease or does it matter which HLA gene they might carry?
Dr. Tye-Din: Yeah, that’s a great question. So it elevates in the vast majority of people with celiac disease and you have to use this ultra-sensitive equipment to measure the values because if you don’t, you won’t pick up the signal. But when you use the ultrasensitive cytokine detection tools, you can detect it in well over 95% of people with celiac disease if they eat gluten. And most of the people studied in our various trials have been the common celiac gene type, which is HLA DQ two, and that’s seen in the majority of people with celiac disease. But we do know there are other gene types such as HLA DQ eight or HLA DQ 2.2, and we have less data on those people. And it does seem that the elevation of interleukin two may be different between the HLA genotypes and the most sensitive data comes from HLA DQ two people. In HLA DQ eight, we were showing that it was as not as good at detecting celiac disease signals. So I think we need to understand that a bit more.
Vanessa Weisbrod: Absolutely. So how could measuring IL two levels change the diagnostic landscape for celiac disease, and what advantages does it offer over current procedures like the biopsy?
Dr. Tye-Din: Yeah, so as we heard from Jonah’s case, one of the big challenges with celiac disease diagnosis is if you’ve gone gluten-free, it’s enormously difficult to then get tested for celiac disease because the blood tests, the antibody tests or celiac serology is no longer accurate. And the biopsies we use to confirm the diagnosis are not necessarily accurate, particularly if the person’s been gluten-free for several months or longer. So that’s a really big challenge. And one of the things we wanted to do was say, well look, how can we diagnose celiac disease simply and accurately without asking people to go back onto eating gluten for weeks and weeks, which we all know is very, very difficult. It’s going to make people sick and they just can’t sustain that. And we know that celiac disease is caused ultimately by the gluten specific T-cell. So if we sort of drill down, it’s not something in the gut, it’s not something that is related to that.
Dr. Tye-Din: It’s more related to the immune system. And ultimately if we can detect the gluten specific T cell, which is only really present in people with celiac disease, then we have a good way to diagnose celiac disease. But to date, we’ve not had a good way to detect the gluten specific T cell. So the interleukin two signal is a really good way to detect the gluten specific T cell, and this offers a new approach. So we hope that this blood test will be able to then detect celiac disease because it can detect the gluten specific T-cell. Now at the moment, the initial studies were looking at people eating a small amount of gluten and then having a blood test four hours later and a small amount of gluten’s better than six weeks or more of gluten. But we wanted to take it one step further. And so the blood test was then adapted into a intu system.
Dr. Tye-Din: So basically instead of asking people to eat gluten, we put gluten in a test tube with a person’s blood sample and then measure the interleukin two the next day after it’s incubated for 24 hours. So in other words, we’re converting a gluten challenge in a person to a test tube, which is far more preferable for people. They don’t need to eat gluten at all. And what’s really exciting is we’ve been testing this in tube blood test where we get a blood sample from someone with celiac disease, and even when they’re on a gluten-free diets, we can detect those gluten specific T cells and diagnose celiac disease. And the sensitivity is over 97% and the specificity is over 97%. So basically that just tells us it’s very, very good at detecting celiac disease accurately and as good as the current blood tests, but obviously the current blood tests require people to be eating gluten.
Dr. Tye-Din: So I know I just said a lot in that response there, but in a nutshell, I guess it’s telling us that this new blood test can be performed on people even when they’re gluten free and can detect the presence of celiac disease with really high accuracy, which is super exciting. And we have now studied over 150 people and we’re about to hopefully publish all of that data in a medical journal. As we alluded to before, we’ve mostly studied people with the HLA DQ two gene, and we need to study more people with some of the rarer gene types to see how the blood test performs in those groups. And we also need to study children because that would be the next really, really exciting application for the technology.
Vanessa Weisbrod: I was diagnosed 20 years, four months and one day ago with celiac disease, and I was diagnosed by my primary care doctor who ran the TTG panel and it was very, very, very positive and told me to see a gastroenterologist and I made an appointment for three months later and they’re like, okay, but you’ve stopped eating gluten, so now you have to eat gluten again to do the biopsy. And so I did. I was that person who went back on gluten for eight weeks before the biopsy and it was not fun, it was miserable and I wouldn’t wish that on anybody having to get an accurate diagnosis, but of course you want the accurate diagnosis and so you do it, but to have the option to not need to do that is so remarkable. And I think something that would really help us get a much better understanding and picture of the real celiac community because we know there’s so many people out there that are just gluten-free because they couldn’t get a test or their doctor didn’t want to test them or they just didn’t do it. So it really is I think, going to be a game changer. So okay, you said that when you mix the gluten with the blood that it sits there for 24 hours before you measure it, but that if you eat the gluten it’s four hours later. So how does that work? When is the spike in the blood if you don’t eat the gluten?
Dr. Tye-Din: Yeah, it’s a really good observation. So when people with celiac disease eat gluten, clearly the gluten’s triggering an immune response and it takes some time for the gluten in the tummy to get into the small bowel and presumably trigger all the immune cells. But four hours is still very fast. And it’s because in celiac disease we know that people have these gluten specific T cells and they’ve got this kind of memory capacity. So they remember that gluten is something they react to. So unfortunately for people with celiac disease, the presence of these cells means that as soon as gluten comes into contact with them, they start getting activated. And interleukin two is one of the major signals of these T cells getting activated. So that’s why we can detect the signal very early on after gluten exposure. And that would be in keeping with the fact that most people who get bad symptoms to gluten usually suffer them within a couple of hours, not minutes.
Dr. Tye-Din: We know that that doesn’t happen within minutes. That’s more like an allergy, but if you’re developing symptoms after an hour or two, then that’s more in keeping with agg gluten induced symptoms. But when we take blood out of a person and they haven’t eaten any gluten and they have celiac disease and we put it in a test tube with some gluten, the number of cells that are related to celiac disease, the gluten specific T cells is very low. So in a formula tube of blood, you might only have one or two cells floating around that are gluten specific that are the cause of celiac disease. So that’s why when you add gluten to it, you need to let it sit there long enough. So the signal of the interleukin twos big enough for us to measure. So overnight we put it into an incubator and the next day we will be able to test the blood for that interleukin two signal.
Vanessa Weisbrod: Very interesting. Thank you for explaining that. Okay, so my husband, we don’t think he has celiac disease, he eats gluten normally. If you gave him the IL two test and he did have celiac, would it work to detect it or would he have had to have been gluten-free?
Dr. Tye-Din: Oh, great question, Vanessa. We have tested people who have active disease. In other words, they’re just coming for their gastroscopy because they’ve been told, oh, you’ve got positive celiac antibody tests, you need a gastroscopy to confirm the diagnosis. So they come into hospital and we say, Hey, can we take some blood and tissue for this new test? And we show that it works. Even in those people who are eating gluten, the signals are a bit lower than people with on gluten-free diet, which is kind of a bit paradoxic. You’d think the signals are higher when people are actively eating gluten. But when we take the cells out of the body, when people are actively eating gluten there, they’re kind of a little bit sort of stunned and they don’t react as much. But yes, it still would work in your husband’s case if we were to test him now and if it was positive, we’d be saying, oh, looks like your whole family’s going.
Vanessa Weisbrod: We won’t put him through that quite yet. So as you mentioned, symptom severity peaked in lots of these studies around three hours after gluten ingestion. Does that correlate with the timing of IL two release?
Dr. Tye-Din: Yeah, that’s a great question. Absolutely. So what we see is the IL two starts to go up around the two or three hour mark and then peaks at four hours and then is coming down by six. And so the symptoms that develop seem to sort of follow that fairly closely, maybe a little bit delayed, which makes sense because we believe that the interleukin two is the trigger for symptoms. And in fact, that’s a big research project of ours now is to work out well, how does the interleukin two cytokine trigger symptoms in some people? And it’s quite remarkable. We see that some people are vomiting and quite unwell, and that’s obviously really unpleasant for them. But then some people are sitting there fairly comfortably after a amount a serve of gluten even though they do have celiac disease. So we want to understand why because the interleukin two signal goes up in everyone, but why do only some people get symptoms? So yes, it tracks very closely with symptoms, but also we believe it will tell us more about what’s actually happening in the bodies of people to cause the symptoms themselves. And perhaps blocking interleukin two or some of the downstream chemicals like serotonin or those other things may be really important in helping people overcome these symptoms to gluten.
Vanessa Weisbrod: Could somebody have the IL two spike within that four hour window but still experience diarrhea, other GI bloating symptoms later?
Dr. Tye-Din: Yes, great question because that’s something that we do see is that the IL two signal does come up in a fairly defined window, but people’s symptoms are not always within a few hours and you will speak to people where the symptoms are delayed and they will go home and that night get some diarrhea. So I think that whatever’s happening, symptoms are a really kind of variable type of manifestation. Some people get bloating, diarrhea, some people get pain. And so I think there’s a fairly complex pathway once the immune system’s activated, and that must vary between people we dub to understand what’s going on in their bodies to account for that variability. But you’re completely right. Symptoms can be but delayed, but we’d still get that interleukin two signal early on.
Vanessa Weisbrod: My mom also has celiac disease. She was diagnosed about 10 years before me, and it’s so interesting that her symptoms, my symptoms and my son’s symptoms are all somewhat different, but my mom and son all within two hours, they’re both very sick and me, it’s usually a little bit later.
Dr. Tye-Din: It’s uncanny. I mean this sounds a bit perverse, but our research program, and I’ve been doing celiac research for about just over 20 years now, and we do do a lot of gluten challenges in order to study immune responses. And the number of people who say that symptoms come on at the two hour mark on the.is quite uncanny. And so they can almost say, I’m going to be sick exactly at 11:00 AM I ate the gluten at night, and lo and behold, at 11:00 AM they’re unwell. So yes, you’re right. I mean I think people are all different, but there are some sort of recurring themes.
Vanessa Weisbrod: Absolutely. So interestingly, IL two levels remain normal in some patients in these studies, despite them reporting symptoms. What does this indicate about their immune response in these individuals and how might this impact diagnosis? Is it possible that they didn’t really have celiac disease in the first place?
Dr. Tye-Din: Yeah, yeah, really interesting. So in one of our studies which we published, we looked at people with this interleukin two signal in their bloodstream, and there were a couple of people who didn’t get it, and we believe they had celiac disease and everyone else did. And we thought, well, this is odd, what’s going on here? So we went back to the drawing board with those individuals, and it turned out in these two individuals, they never had positive celiac antibodies for their diagnosis. It was just based on a biopsy of their bowel that showed the villous atrophy. So the doctor assumed, oh, it’s celiac disease because you have villous atrophy. We went back to give gluon to those people for several months, like a long time, and they did not have villous atrophy at the end of that period, and they did not have positive celiac antibodies and they were feeling well.
Dr. Tye-Din: And so they never probably had celiac disease to begin with, which was really, really quite striking great for them because we undiagnosed their celiac. But it also tells us that we have to be very careful when we make the diagnosis of celiac disease in my clinical practice. So in addition to research, I do see patients as well. When I see a patient who’s been diagnosed based on the small bowel biopsy alone and never had celiac antibody testing or had negative celiac antibody testing at diagnosis, that’s a bit of a red flag for me to say, well, look, I better check and make sure they truly do have celiac disease. Because what we do know now is that the villous atrophy of celiac disease can be caused by other things. It can be caused by medications, it can be caused by infections, chiia, a whole range of other things that can cause it.
Dr. Tye-Din: So we believe that those two people who didn’t have the IL two rise, even though we thought they had celiac disease, were probably misdiagnosed because they had other things in their past and one probably had giardia infection based on her story. And the other one, it may have been a medication that had caused the villus atrophy to fool the doctor’s into thinking they had celiac. So I do think that there are some cases of misdiagnosed celiac that account for negative results. But having said that, there were some people where we truly believe they had celiac disease and they still had a negative result. We’re still looking into that. Why can we not detect IL two interleukin two in a hundred percent of people? And maybe it’s a timing thing, maybe we need to measure beyond four hours or something like that in that individual, maybe the signal needs to be boosted and maybe they’ve just had gluten recently and released their IL two and we need to sort of wait a little bit or something. So there’s a few tweaks and things to this, but the hope is that we can improve it even further, but the way it performs now is just as good, if not better than the existing CELIA antibody tests, but with the benefit of working when people are free.
Vanessa Weisbrod: That’s great. So if IL two is validated as a reliable biomarker, how could the diagnostic process for celiac disease be streamlined? I mean, obviously it would reduce the need for the prolonged gluten challenge, but could it ultimately reduce the need for the biopsy?
Dr. Tye-Din: Yeah, that’s a really good question, and I think we need studies to help us get that data to tell us it can. I mean, that would be the hope. If you’ve got a way to detect the gluten specific T-cell accurately and sensitively, do you even need a small bowel biopsy and perhaps not. And one reason I say that is because as many of the listeners will know that in the last few years, the diagnostic guidelines for celiac disease have been evolving in children. And European diagnostic guidelines in 2020 came out with this non biopsy approach that if the transglutaminase antibody level was very highly elevated, greater than 10 times upper limit of normal, and a second blood test was also positive, then a pediatric gastroenterologist could diagnose celiac disease without needing a biopsy at all. So there’s this slow acceptance that in certain circumstances you can diagnose celiac disease based on a blood test alone.
Dr. Tye-Din: The hope would be in the future if we can confirm that this interleukin two test is accurate, then if it was positive, I think the field would probably accept that you don’t need to then do a biopsy. So obviously the studies need to be done to confirm that, but that would be the hope. And then you could imagine a time when the blood test was all that’s required and whether you screen people with the transglutaminase antibody test like it’s currently done and then confirm the diagnosis with the interleukin two test, or you just do the interleukin test. I don’t have the answer for that. And again, I think we need studies to sort of model these things and work it out, but I think it’s very nice to have a test that could allow people to avoid a gastroscopy altogether and avoid being on large amounts of G. And I think that’s going to be really good for patients and help reduce a lot of the burden of diagnosis and speed things up. Because I think for me, getting the diagnosis of my patients who have it sooner rather than later is so much better. The delayed diagnosis can be really problematic for people.
Vanessa Weisbrod: And even just, I’m thinking about a neighbor of ours whose child had a positive TTG blood test four weeks ago, and it’s now, it’ll have been almost seven weeks before they even get in to see the gastroenterologist to set a plan for the next step and then await for the biopsy. So it’s a very long process right now even just to get to discuss a positive TTG test.
Dr. Tye-Din: Oh, I agree. And I think it’s difficult because as a parent, you don’t want to be seeing your child sick and the answer’s probably staring you right in the face, which is a gluten-free diet, but then you’ve been told, don’t go gluten-free because your daughter or your son may need a gastroscopy. It’s awful. And I’m married to a celiac and our son is HLA gene at risk for celiac, and when he gets symptoms, we do screen him for celiac disease. And I’m lucky, I’m one of the fortunate ones that I can expedite these things, but I do know of a lot of people who’ve waited, and you mentioned three months for you, and I dunno if that’s because you didn’t realize the importance or you just had to wait for a doctor before you could get a gastroscopy. But access to specialists and access to endoscopies is not great around the world, not just the US but other areas. And so I think cheaper technology that’s accurate, that allows a diagnosis to be made sooner is so important for us.
Vanessa Weisbrod: Absolutely. And the cost piece of it too, there’s so many families, like we see in the United States, about 25% of families with a child with celiac disease can’t afford the gluten-free diet. And we talk about the cost of food, the cost of the biopsy is extraordinary. I mean, it’s not cheap to have that test done.
Dr. Tye-Din: Yeah. And for children, there’s sometimes a general anesthetic given for adults. It’s a day off work, it’s inconvenient. And there’s the cost factor, as you mentioned. It’s a fairly safe, like the risk of the procedure isn’t high or anything, but it is inconvenient. So alternative, simpler, accurate methods are really needed.
Vanessa Weisbrod: Absolutely. So Dr. Tye-Din in, what are the next steps in your research on IL two and celiac disease? Are there ongoing studies that patients or practitioners should be aware of?
Dr. Tye-Din: Yes. So we are hoping to do studies in children, and I’m actually working with some collaborators. For example, there’s Dr. Jocelyn Sylvester in Boston who’s very keen to take forward these trials in children. And I think this is going to be very exciting to sort of confirm that these tools work well in children as a diagnostic test. We are using the tool to measure immune responses to low amounts of gluten. And this is a really exciting area of research where understanding safe thresholds for gluten. So many of your listeners will be aware of 20 parts per million as the threshold for what’s labeled as gluten-free. And I know you’re a bit of an expert in this space too, Vanessa, but the hope is that using this tool, we can measuring people well, when does a certain amount of gluten trigger an immune response that could potentially be harmful?
Dr. Tye-Din: And this is a lot easier than the traditional approach of feeding people gluten for three months. So that, as you know, there was an earlier study by Dr. Carlo Sasse, which fed people with celiac disease, small amounts of gluten for three months in order to work out whether it was harmful or not. We may have an easier way now with the interleukin two tool, and we’ve been in discussions even with Dr. Carla Potass and other colleagues about studies that incorporate this technology to make it easier, but it will give us a more accurate threshold moving forward with the goal of really ensuring safety for people with celiac disease around the world and safety for people who have to eat gluten free. So that’s the second project. The third project would be using this tool to understand symptoms as we talked about earlier. I think that we know interleukin two goes up, it goes up even higher when people with celiac disease have bad symptoms to gluten.
Dr. Tye-Din: What is that telling us and what are the mechanisms of the interleukin two causing symptoms? And I really love to be able to develop better ways to treat those bad symptoms because as you know, it can be really disabling. So if we can treat that, that will be really good. And we are working finally with a industry collaborator, Nova Vir, who are really helping to take this forward into the clinic because ultimately this is a tool that I do believe will be useful for patients. And the sooner we can get it out there, the better they can start benefiting. So they’re the ones who are really taking it forward as a package and doing all the relevant steps to really get it all approved and out there. So several things, but it’s sort of really exciting times ahead.
Vanessa Weisbrod: It is such exciting times and you are doing so much amazing work for this community and just so grateful that you are a part of it. And thank you so much for sharing all of this wisdom with our community today. I learned so much today. I attend all these conferences and I listen to all the talks, but I’ve still always learned something new every time I talk to you. So thank you so much for all of the work that you’re doing and that you will continue to do in this community.
Dr. Tye-Din: Thanks, Jonah.
Vanessa Weisbrod: My favorite part of the episode. Let’s find out where our patient Jonah is today.
Janis Arnold: Nearly a decade later, Jonah is still following a strict gluten-free diet and still has not received a formal Celiac disease diagnosis in his own words, Jonah says, hearing about the future of less invasive diagnostic tests for celiac disease gives me great hope that someday I’ll know if I truly have celiac disease. But until then, I will continue enjoying feeling healthy as long as I don’t eat gluten.
Vanessa Weisbrod: And now a word from the Global Autoimmune Institute.
Global Autoimmune Institute: The Global Autoimmune Institute works to empower solutions and the diagnosis and treatment of autoimmune diseases through research, education, and awareness while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.
Vanessa Weisbrod: Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac, on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.
3/25 Season 2 Episode 5: The State of Celiac Disease in Latin America
Expert Guests:
- Dr. Julio Bai, Emeritus Professor of Medicine, Research Institute, Universidad del Salvador, Argentina
Learning objectives:
1.) Identify the key barriers to diagnosing and managing celiac disease in Latin America, including cultural, economic, and healthcare system limitations.
2.) Examine the role of Argentina’s National Gluten-Free Food Law and its real-world effectiveness in supporting patients with celiac disease.
3.) Learn how organizations like the Latin American Society for the Study of Celiac Disease (LASSCD) and patient advocates contribute to improving celiac disease awareness, education, and access to safe gluten-free food in the region.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod (00:02):
Welcome to season two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple, to provide education to as many health providers and patient families as possible. I’m Vanessa Weisbrod and I’ve started a new role as the Chief Education and Community Engagement Officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janice Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now let’s get started with this month’s raising Celiac patient story.
Janice Arnold (Sophia) (01:40):
Meet Sophia, a 28-year-old graphic designer living in Bueno, Argentina. For years, Sophia struggled with digestive symptoms, bloating, diarrhea, and sharp abdominal pain that left her exhausted and unable to focus. She saw her primary care doctor regularly and was put on a variety of medications that seemed to help a little bit, but not totally solve her problems.
Vanessa Weisbrod (02:04):
These symptoms are classic manifestations of untreated celiac disease. However, limited awareness among healthcare providers in some regions can delay diagnosis. As was the case for Sophia.
Janice Arnold (Sophia) (02:15):
After being misdiagnosed with irritable bowel syndrome for years, Sophia finally received her celiac diagnosis following a family member’s diagnosis that prompted genetic testing. While she felt relieved to have answers, the challenges of maintaining a gluten-free diet in Argentina became immediately apparent.
Vanessa Weisbrod (02:33):
Argentina has a unique law, the national gluten-free food law requiring all restaurants to offer gluten-free options. In theory, every restaurant should offer gluten-free options that are safe for someone with celiac disease to eat, meaning that the food is prepared using gluten-free ingredients and is free of cross contact with gluten.
Janice Arnold (Sophia) (02:51):
Although the law sounds quite fantastic for the celiac community, Sophia quickly realized that enforcement and awareness vary greatly. Dining out often involves double checking ingredients and cross contact protocols leaving her anxious and feeling excluded. Despite these challenges, Sophia has found support through local advocacy groups and online communities. She says, living with celiac disease in Argentina is a balancing act. The laws are great in theory, but it’s up to us to ensure they’re followed. My hope is for greater awareness so people like me can feel safe and included.
Vanessa Weisbrod (03:27):
And the hope is that with greater awareness, life will continue to get better for patients in Latin America with celiac disease. But how does that happen? How do doctors get better educated on diagnosis and treatment options for celiac disease? How do dieticians learn more about the gluten-free diet and nutritional concerns? We’ll discuss this and more on today’s episode of Raising Celiac. Today we explore the state of celiac disease in Latin America with Dr. Julio Bai, a world-renowned gastroenterologist based in Buenos RA’s Argentina. Dr. Bai is a leader in celiac disease research and advocacy in Latin America. He helped establish the Latin American society for the study of celiac disease and recently co-hosted the Celiac Symposium in Bueno. RAs, we’ll discuss the unique challenges faced by patients and providers in the region, the progress made in awareness and legislation and the ongoing efforts to improve diagnosis and care. Welcome Dr. Bai to raising Celiac
Dr. Bai (04:29):
Buene. Thank you a lot for your invitation for having me here. I will try to certify your questions in doing my best.
Vanessa Weisbrod (04:40):
Thank you. So Dr. Bai, I am always so inspired listening to the stories you tell about celiac disease. Can you tell our listeners about the history of celiac disease in Latin America?
Dr. Bai (04:52):
Okay. Celiac disease is well learned from the first half of the last century and that in my impression was to the immigration that we have at the time of physician from Europe. We have a huge British community here in Argentina and especially during the second World War. We have a community coming from Eastern Europe and they introduced in, especially in Buenos Aires, some of them come in to Argentina after passing by the United States. But what they think that the story started, at least in South America in Argentina, because there is a very interesting points and the first point that I want to realize to make a special mention, two points. In 1848, there was a new gastroenterology hospital, very unique hospital only devoted to gastroenterology in Buenos Aires. They established at that time a group, a special group that was known as section in the structure of the hospital that was known as small bowel disorder section.
(06:18):
And they starting to having a lot of celiac existing patients with because it was the most important place for gastroenterologists and for patients also coming from all over Argentina and neighbor countries. And the second point was in 19 55, 5 years after the war knew that the grains were the responsible of celiac disease. It was the introduction of the development of special instrument, A two for biopsy per oral biopsy. And the author, the main author was a clever guy who was at that time, the time of all publication director of my hospital. And they published for the first time the findings in this small bowel because the pathological findings of almost 25 patients with celiac disease at the time of diagnosis, the problem was very common in this latitudes is that they polish the study in Spanish, similar thing that have had D in Netherlands that polish the findings on grains and Celia disease in Dutch. One year later, our use of the implementation of peral biopsy in Argentina appears the first well-known paper in the Lancet in England develop a different instrument with similar things but different instrument for small bowel biopsy. Now there are a lot of people recognizing that it was very interesting at the same time to different country with different language where they were progressing with similar ideas about the diagnosis. This is very common medicine and research especially, but it was the history of our country and the main points.
Vanessa Weisbrod (08:40):
So how did you get into celiac disease?
Dr. Bai (08:43):
I started, I am an old md. I started when I was 22 years old the year after I started my residency in gastroenterology four years. And in the third year, the group of small bowel disorders invited me to be part of the fellows of the group. I started there at that time and I remember vividly my first patient. It was a very small lady. Very small lady. I followed her for years and years. And the story is that she was the aunt of a president of our country. They were all the families, very small, very small. And I look for Celia disease and all the family. I never find another patient in that group. 10 years after that moment that I started there was ahead of the section for 10 years. And then I went to other position, higher positions in the hospital. But I follow mentoring the group until now, that is the story. After in the eighties we started production, scientific production and polishing papers, but we still continue doing that.
Vanessa Weisbrod (10:15):
I think it’s so interesting how the first patient that you diagnosed with the disease really stays with you. My mom was diagnosed with celiac disease in 1990 and she was her gastroenterologist first celiac disease diagnosis in his career. And at the time when she woke up, he was like, yeah, I think you have this disease called celiac disease and I’ve never seen it before in practice, but I think this is what you have. And he’s like, you just can’t eat cookies anymore. And my mom was like, I just can’t eat cookies anymore.
Dr. Bai (10:52):
I want to tell you something that is very common. It was the progress of the knowledge of on celiac disease. And I have a story about when we, well maybe that you want to make question
about that in the future, but I knew a guy from Boston in the early eighties and he was very clever guy and he published very exceptional papers in the early 1970s. I think that spur, I spurred our interest in celiac disease starting with the ideas in research of that guy. The name was Myron Paris, I dunno exactly. Myron Faluk. Interesting point that we started at that time with research related to this. And I was living a state in Dallas because I was professor of the University of Dallas in 85. When I was 36-year-old. I knew the A meeting that at the time was in San Francisco. I say, I need to present my research as after here.
(12:14):
And two years after we present our first abstract, people told me, celiac, this is not coming here in the states. And in 1991, 1 of my abstracts was accepted for the PLANARIZATION in the DDWE, just one planarization. And I think that it was the beginning of the interest of many different groups, some of the hiring people coming from Ireland or England, people who knew celiac disease at that time. Well, this increased the interest and now it’s very difficult to have a paper in plenary session in the states because you have hundreds of five drugs presented there.
Vanessa Weisbrod (13:12):
Absolutely. So Julio, you are one of the founders of the Latin American society for the study of celiac disease. Can you tell us about the L-A-S-S-C-D and its mission and supporting celiac patients across Latin America?
Dr. Bai (13:25):
Well, the Latin America is very particular part of Americas, but it’s not different to some parts of North America because you have a very wide variability and ethnic groups living here with different economic situation and cultural participation. And I think that perhaps the south cone of Latin America is more homogeneous because the ancestry came from Italy, Spain, and other West European countries. It is more homogeneous, it’s easier to look for celiac disease and to have interest in the topic. But countries like when I say South Kong, I say Argentina, UI Chile, but when you’re looking for Paraguay, Bolivia, brussel, Peru, Ecuador or Columbia, it’s different.
(14:39):
Huge in the population. And also cultural heterogeneity is import. They have different grains, different foods. They thought for years and years that they have no celiac disease there. And well, we went for years also given talks to different cancers several times and they are progressing with the idea and they are having more celiac disease patient and a low interest in the topic. The Latin American society for a study of celiac disease is just a brand of the international society. And our commitment is to increase the interest in celiac disease to alert about diagnosis and to have common plans, common ideas about how to explore, treat to diagnose, to treat. And also we try to have more people publishing the topic.
Vanessa Weisbrod (15:51):
Yeah, that’s so great. What have you found are the biggest challenges in diagnosing and treating celiac disease in Latin America?
Dr. Bai (15:58):
Important question, challenges. I think that the first one is to the education of doctors, physicians. That was a huge problem here also 30 to 40 years ago. It still is because now many people think about celiac disease, but they are still doing a diagnosis with six different serologic tests. It’s a huge amount of money dedicated or took in biopsies that they are read serological, read by general pathologists where the knowledge about the intrinsic problems that has the endoscopic biopsy is very problematic. And you have sub diagnosis and the diagnosis of celiac disease, but also over diagnosis of celiac disease. And we studied that. And 20 years ago here in Buenos Aires, it was a blind study compared pathologists working in private practice against expert pathologies. The misdiagnosis for positive diagnosis or negative diagnosis was almost 45%. Just the pathology reading of biopsies with almost 10% of biopsy that were diagnosed as positive or negative for celiac disease that were not useful for any consideration.
Vanessa Weisbrod (17:53):
Why were they not useful? Were they taken from the wrong areas or they weren’t good samples? Why weren’t they useful?
Dr. Bai (17:59):
The most important point that there was difference to the peral biopsy. Now the endoscopic biopsies have a huge problem, the disorientation of samples and the quality of samples because they treat samples after taking them with instrument to, and also the problem is the technician who needs to know about orientation, this is the most important problem. But also it’s a problem pathologist. They say in a normal condition, in a normal biopsy, mark zero or they look for node counting. In epithelial lymphocyte, they say high number of intre epithelial lymphocytes that is not diagnosed. And they put March one and March zero, March one is just for celiac disease. And march is consumed for many, many doctors as coupled with diagnosis of C six. This is the main mistakes.
Vanessa Weisbrod (19:11):
Yeah. Wow, that’s so interesting. So how about cultural and economic factors? How do they influence access to gluten-free foods and medical care?
Dr. Bai (19:20):
It’s important, especially in Latin America where we have cultural but also economic problems in the cost of gluten-free diet is almost three times the cost of similar products. No gluten-free. But it’s very important that at least in Argentina there is a huge support for gluten-free products. And it is very interesting, this story that I told you about native people from the northeast of Argentina. There were people that were, they live in the forest only living fishing or catching animals and nothing else. And the government at that time, it was in early 1980s, they decide they have a very short lifespan. They decided to supplement an limitation and they gave grains a huge amount of grains. And you see there, they are fat people of this, but they have huge concentration of those who are serologically celiac disease, this huge amount of antibodies. They’re obvious people and it was impossible to perform an elbow biopsy because they have some trivial structure in their life. Well, that was a mistake because they gave a lot of, the amount was extremely increasing amount of gluten of these individuals. And you say if we have amount of between 12 and 18 grams per day of gluten in Bueno Aires, they have almost 50 grams per day.
Vanessa Weisbrod (21:26):
That’s a lot of gluten.
Dr. Bai (21:28):
Yeah, a lot of gluten. Yeah, that’s true. That’s true. And I knew at that time case a young boy almost 40 years ago, he was a very indigenous face. He was seven eight. So at that time, the name, the last name was by, similar to my last name, he was Celiac. He was the first case that I have of this kind of population in Argentina, and which is a lesson of that, that their ethnic characteristics are similar to those of Bolivia or Wai or, and that means that they may have a lot of patients still undiagnosed.
Vanessa Weisbrod (22:25):
That’s so interesting. So your recent celiac symposium brought together experts from across the globe. Can you tell our listeners some of the key takeaways from the meeting?
Dr. Bai (22:35):
Yeah. We started doing the first symposium in 1982. We had our mentor, the guy who invited Myron Faluk to be part of our meeting. He was huge. I love that because we was a starting point and we repeat meetings every two years trying to go through, especially diagnosis, clinical aspects, follow up and treatment of Celia disease. And we repeat that for years, almost 20 years ago, we started with performing a successful Pan-American Congress of Celiac disease here in Bon Aires. And we remain doing that conferences during the pandemics, but now we have the interest of the International Society for Study of Celiac disease to organize a subsidiary here in Latin America. And we started with that and we started with the first symposium that was last November where you was part of that. And we have a strong plan of activity in the future. There is another point that is necessary to say that was in 77 in 1977. We do two fourth to collect patients and relatives of patient and to organize the first support society, the with assistance for select disease patients is, and one of the ideas to go through different societies of these advocacy groups in Latin America.
(24:35):
It’s very interesting, what we know very well, that great awareness about celiac disease is a greater education and greater content for celiac disease patients. And that is important. Then one of my special idea about the role of this institution is to enlarge research and to make participation of doctors in international research activities because it’s important to have the
view from this part of the world and to expand knowledge among doctors and physician because I think it is extremely important that the physician were very alert about celiac disease. If they are alert, more patient will come and better results for celiac disease patients.
Vanessa Weisbrod (25:43):
Absolutely. I think it’s so interesting how I-S-S-C-D, the international society is really working with these regionalized groups besides Latin America, there’s also the society in India now that’s working on advancing care and treatment. How do you see international collaboration between the groups working and what do you hope that it’ll bring to our community?
Dr. Bai (26:05):
I think that one of the points, making these type of meetings, international meetings and the participation of experts in the topic, I think we still need to do a lot about diagnosis, follow up and treatment of Celia disease patient. And we need to make a strong point of this part, but also research and this communication and participation with international groups, research groups is important. Is extremely important.
Vanessa Weisbrod (26:41):
For sure. So let’s switch gears for a minute and talk about the Argentina’s national gluten-free food law. Can you talk about this law, what it requires, and how patients are able to find gluten-free food?
Dr. Bai (26:54):
Yeah, it was a short story, but required three to four years of discussion about the topic because there are fanatics and people who have realistic ideas about the role of a law. And it’s not everything. It is not everything. I think that in theory, the law is great. I believe I looked for everything and there were CC to do that in this moment. And it was the first law, national law about Celia Greece’s protection. And what started about recognition, the recognition of the disease, the necessity of a gluten-free diet, supporting diagnosis with serology, a biopsy to everyone and making strong, well, trying to support research that was not enough. But Argentina had a lot of economic problems. The story in Argentina was increasing as it was in all over the war after the discovering of tissue transglutaminase antibodies. It was almost 30 years old. It was a change in the behavior of doctors and people in the war and more diagnostic anex explosion of diagnosis on that. We have also a national register for gluten-free quality of site register. I’m not so sure now, but we’ll improve in the future. I’m not sure. Also making and the decision that every restaurant in Argentina need to present a gluten-free menu. What is the realistic condition of those menus? Well remains to be explored with more and more interest.
Vanessa Weisbrod (29:12):
And it was interesting coming to Argentina for the first time, and I have celiac disease myself, and so hearing that this law was very exciting. I was like, I could eat anywhere. The food was very good. I will say that we had wonderful meals in every restaurant that we went to. We did a food tour and every stop did have gluten-free options. But it’s true that it’s not the same. Every
restaurant you walk into does not have a full gluten-free menu. It may a packaged item or it may be, well, maybe there’s cross contact, we’re not sure, but I do think that at least the awareness of gluten-free was better than in other countries I visited.
Dr. Bai (29:54):
Yeah, yeah, yeah. It’s huge. It’s huge. And my room, I have maybe half of patients saying they come because I have known as a gastroenterologist. Many people ask me maybe that my symptoms can be due to celiac disease. I say, you know my dedication about celiac disease. No. Well, that means that the people is extremely alert about celiac disease and this is important.
Vanessa Weisbrod (30:31):
So Dr. Bai, you’ve just hosted this incredible conference. What’s next for celiac disease in Latin America?
Dr. Bai (30:38):
Oh, or next? I think that we need to improve diagnosis, follow up. That is important. People is not following up. What is the rule, the conviction that we have us doctors about how should be the management of celiac disease after diagnosis. But I think that the awareness of physician, our celiac disease needs to improve research in our country to have more people working in research. We have a problem. We have three Nobel Prize in medicine, three novel prize, but research at the interest in research of people staying here in Argentina is not enough. Even the people who work in research institute or in universities, they do not produce significant number of publication, and we need to work on that. If there is people working research, I think the awareness is more precise and more strong.
Vanessa Weisbrod (31:54):
Absolutely. Well, Dr. Bai, thank you so much for being a part of this discussion. We’re so grateful for all of the work that you’re doing in Argentina and around the world, and I feel very lucky to have gotten to spend time with you and learn from your wisdom and thank you to all of our listeners. But now let’s find out where our patient Sophia is today.
Janice Arnold (Sophia) (32:19):
Today Sophia is thriving in her gluten-free lifestyle, supported by advocacy groups and friends who understand her condition. She’s become an advocate herself, working to ensure local restaurants comply with gluten-free laws. In her own words. Every small step forward makes a big difference. The laws in Argentina are great, but we must keep educating people to make them a reality for everyone.
Vanessa Weisbrod (32:45):
And now a word from the Global Autoimmune Institute.
Global Autoimmune Institute (32:49):
The Global Autoimmune Institute works to empower solutions and the diagnosis and treatment of autoimmune diseases. Through research, education, and awareness, while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.
Vanessa Weisbrod (33:08):
Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac, on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.
4/17 Season 2 Episode 5: Gluten-Free Schooling: Navigating Challenges and Triumphs for Children with Celiac Disease
Expert Guests:
- Dr. Hilary Jericho, Medical Director of the Celiac Disease Program at the Lucile Packard Children’s Hospital at Stanford
Learning objectives:
1.) Understand the social and emotional challenges children with celiac disease face at school.
2.) Learn the importance of 504 plans in ensuring safe, inclusive school environments.
3.) Explore recent research on how celiac disease affects a child’s daily school experience.
To claim credit, please register for an account on our course website and complete a podcast survey here.
Vanessa Weisbrod (00:02):
Welcome to season two of Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. We have some exciting changes for this season. The Boston Children’s Hospital Celiac program has teamed up with the Celiac Disease Foundation to expand the reach of our educational podcast. Our goal is simple, to provide education to as many health providers and patient families as possible. I’m Vanessa Weisbrod, and I’ve started a new role as the Chief Education and Community Engagement Officer at the Celiac Disease Foundation. In every episode, you’ll also hear from Janice Arnold, an incredible social worker at Boston Children’s Hospital, who is the voice of our patient stories. Each month on the podcast, we will invite leading experts to dive into a hot topic related to celiac disease and look at how it impacts a patient family, the latest research and offer suggestions for health providers to manage these complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for physicians, nurses, social workers, dieticians, and psychologists. To claim your credits for listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. We’ll also drop that link into the show notes. Thank you to the Global Autoimmune Institute and the Celiac Disease Foundation for making this podcast possible. Now, let’s get started with this month’s raising Celiac patient story.
Janice Arnold (01:41):
Eliana was diagnosed with celiac disease just after her seventh birthday. Her family adjusted quickly to life with a gluten-free diet at home, becoming pros at reading food labels, researching safe brands, and creating delicious gluten-free meals. But when Eliana returned to school, things didn’t go as smoothly. Every day, Eliana packed her lunch, not because she wanted to, but because her school cafeteria didn’t offer gluten-free options. She would watch her friends line up for hot lunch while she sat alone at her desk, unzipping her lunchbox. Sometimes her classmates would ask why she couldn’t eat the same pizza or birthday cupcakes they had. It made her feel different and often left out.
Vanessa Weisbrod (02:22):
Under the Americans with Disabilities Act. Celiac disease is considered a disability because it impacts major life functions like eating in digestion. That means that students like Eliana are entitled to reasonable accommodations at school, including access to safe, gluten-free meals, and equal participation in all educational programs and activities like school lunch and classroom celebrations. Unfortunately, many schools don’t realize their responsibilities. The law requires that schools receiving federal funds provide accommodations through what’s called a 5 0 4 plan. This is a legal document that outlines the specific supports a student with a disability needs to access their education on an equal basis.
Janice Arnold (03:03):
Eliana didn’t have a 5 0 4 plan. Her parents didn’t even know such a thing existed. No one at the school had ever mentioned it, not the nurse, not the principal, not even the district’s food service coordinator. Without formal accommodations in place, there were no procedures to prevent cross contact in the cafeteria. No gluten-free snacks available for classroom parties, and no staff trained to recognize the risks of accidental gluten exposure. On Valentine’s Day, Eliana came home from school crying. Her class had had a celebration with cookies and cupcakes, but no one had brought a gluten-free treat. One of her classmates offered her a cookie saying it was probably fine, and Eliana tired of saying no. Took a bite. By the afternoon, she was doubled over in pain.
Vanessa Weisbrod (03:52):
Eliana’s story sadly isn’t unique. In a recent study published in JPGN reports, the researchers found that only 12% of children with celiac disease reported having access to gluten-free options at school, and over 30% had to bring their own treats for classroom celebrations. What’s even more concerning is that nearly 40% of students didn’t have a 5 0 4 plan, and some parents had been told that their child didn’t qualify. Despite clear legal protections, Eliana’s parents decided it was time to take action. They reached out to her gastroenterologist who connected them with resources from the Celiac Disease Foundation. They learned how to request a 5 0 4 plan and what accommodations they could ask for access to safe gluten-free meals in the cafeteria, staff training on cross contact, a stash of gluten-free snacks kept in the classroom for unexpected celebrations and education for all of the teachers and staff that worked with Eliana during the school day. They also included provisions about hand hygiene, ensuring Eliana had access to soap and water before and after meals. Additionally, they agreed to have gluten-free art supplies and materials in the classroom.
Slowly, things began to improve, and these types of accommodations are exactly what our national guidelines recommend adopted. Just five years ago, the 2020 voluntary recommendations for managing celiac disease and learning environments outlined key recommendations for managing celiac disease at school that were agreed upon by the nation’s leading celiac disease, physicians and dieticians, school administrators, and food service providers, nurses, parents, and students. Eliana’s story reminds us how crucial it is to equip families with the tools they need to advocate and to ensure schools are held accountable for providing safe inclusive environments for children with celiac disease. But the new study highlights that many students are not getting the protections they need to successfully manage their disease. We’ll dig into the data and the bigger picture. On today’s episode of Raising Celiac today, we explore experiences of children with celiac disease at school with Dr. Hillary Jericho, a pediatric gastroenterologist, and the inaugural medical director of the Celiac Disease Program at the Lucille Packard Children’s Hospital at Stanford. Her unique balance of innovative, cutting edge research and patient-centric clinical care establishes her as an expert in the field of pediatric gastroenterology with an emphasis on the diagnosis and management of celiac disease. I’m lucky to have gotten to know Dr. Jericho well over the last two decades through our work on the Celiac Kids Collaborative, and I’m honored to have been a co-author with her on the research paper we are going to discuss today. Welcome Dr. Jericho to Raising Celiac.
Dr. Jericho (06:37):
Thank you, Vanessa. It’s a pleasure to be here. Thank you for inviting me.
Vanessa Weisbrod (06:40):
So tell us what inspired this study on gluten-free school experiences for children with celiac disease, and why is this an area that’s been historically understudied?
Dr. Jericho (06:48):
Yeah, that’s a wonderful question. So while I know many of our listeners today are familiar with celiac disease, just a quick recap that it is a lifelong condition. It does require strict adherence to a gluten-free diet, and yet schools remain one of the most challenging environments for our children that are affected by celiac disease. As you mentioned, we’ve worked closely together over many, many years now as part of the Celiac Kids Consortium, which is a national pediatric organization of medical professionals, and we’re all dedicated to researching ways to improve the lives of children with celiac disease. Despite all the growing awareness out there, there is still limited research on how the school environment impacts dietary adherence, their social experiences, and the overall wellbeing of our celiac patients. In the childhood realm, most of the celiac research historically has focused more on diagnosis and treatment rather than those daily challenges. So to address this gap, we within Celiac kids distributed surveys to celiac patients and families across the US to better understand the difficulties in securing safe gluten-free options at school.
Vanessa Weisbrod (07:58):
So what were the most surprising or concerning findings that emerged from the data? Were there any patterns that stood out to you across the different age groups or regions?
Dr. Jericho (08:07):
Yeah, that’s an excellent question. So one of the most concerning findings that we came across is that 12% of students, or rather, only 12% of students had access to gluten-free foods in their school cafeterias, which highlights a significant lack of accommodation in the school’s nationwide. Another surprising pattern we found was a large discrepancy between the responses from the parents and children on the surveys, and many parents believed their child was fully adhering to a gluten-free diet at school, but the reports from the children listed that there were frequent accidental gluten exposures. We also found that students age ranges 12 to 13, who’d been on a gluten-free diet for over two years, seemed to be at the highest risk for engaging in unsafe practices at school, possibly due to the increased social pressures and that desire to fit in with their peers.
Vanessa Weisbrod (08:59):
Yeah, the 12% of students only having access to gluten-free food and school cafeterias completely shocked me. I mean, I have personally spent a great deal of my career working with schools, and that number was really, really shocking. What does that 12% tell us about the current level of awareness and preparedness in schools across the us?
Dr. Jericho (09:21):
Yeah, so the statistic highlights that there is a significant gap in the awareness and preparedness in the school setting. So despite the fact that there are federal protections under the A DA and Section 5 0 4, many schools seem to be unaware of their obligations or they lack the resources to provide safe gluten free meals for their students with celiac disease. This suggests that some sort of systemic change really is needed, whether through better education for the school staff policy reform or increase advocacy efforts for the celiac community, schools need clearer guidance on how to safely accommodate students with celiac disease to ensure that they can fully participate in mealtimes without that fear of exposure.
Vanessa Weisbrod (10:07):
I feel really lucky. I live in Massachusetts and my son with celiac disease is 11 and can get gluten-free breakfast and lunch every single day at school. And looking at our data, I really took for granted how lucky we are to have those options available to us and how so many students across the country just don’t. Absolutely. Yeah. So how can pediatric gastroenterologists, dieticians, and primary care providers use these findings to better support families during routine visits?
Dr. Jericho (10:38):
Yeah, that’s a wonderful, wonderful question. So obviously providers, frontline workers, they play a key role by integrating those school related discussions into the routine visits. This means that they can ask specific questions about the child’s school environment, their meal accommodations, and their social experiences. The provider should be very proactive to educate the family and let them know their rights under the A DA and the 5 0 4 plans, and try to offer practical guidance on self-advocacy. Additionally, sharing the studies findings with local school nurses, administrators again, could help bridge that gap between healthcare and education systems. I know we at Stanford, we do have a new patient packet that has a lot of that information, and we’re very fortunate that we actually use the data from this study to ultimately get a grant to study this further in the Bay Area and implement resources for our local schools out here in California. And I hope, and I feel like the results of this study are going to help push that forward in many, many different cities and states across the us.
Vanessa Weisbrod (11:47):
Absolutely. So should discussions around 5 0 4 plans and a protections become a standard part of the education process following a celiac diagnosis? And if so, what should those conversations look like?
Dr. Jericho (12:00):
Yeah, absolutely. So every child diagnosed with celiac disease should have a discussion about their legal rights at school. Providers should educate the families on the importance of the 5 0 4 plans, which can help formalize the accommodations such as having gluten-free meals, safe classroom environments, and proper training of the staff. The conversation should be framed around empowering the families to advocate for their child’s needs and providing them with sample 5 0 4 plans can be very, very helpful, and then guiding them through the process of requesting the accommodations.
Vanessa Weisbrod (12:36):
Yeah, I also think it’s so important. California and Massachusetts are two of eight states that have universal school meals, and there are eight other states that also children have access to these things. And the whole point of these laws were to make access to meals easier and open to everybody. And so if you are a provider in one of those eight states, making sure that your patients know they can get gluten-free meals for free.
Dr. Jericho (13:03):
Yeah, absolutely. Absolutely. We’re very lucky to have that out in California too. For sure.
Vanessa Weisbrod (13:09):
So one of the interesting things in this study is that we looked at both parent and child responses and there were discrepancies between them. So given those discrepancies, how might providers help bridge communication gaps to get a more accurate understanding of what’s really happening at school?
Dr. Jericho (13:26):
Yeah, that’s an excellent question. So one strategy might be to speak directly and separately with the child from the parent during the visit. It’s going to create a safe space for that child to share their experiences in an open and frank manner. Additionally, using open-ended questions can help providers get more honest responses, and encouraging the families to check in regularly with their child about the school meals, their social situation can greatly improve that communication at home as well. If a center has the resources to involve dieticians, psychologists, social workers in those follow-up visits, that absolutely can also help to address the social pressures, the emotional struggles that children may face in managing their diet.
Vanessa Weisbrod (14:16):
For sure. So for parents who are just learning about 5 0 4 plans or feeling unsure about how to start the process, what do you recommend as their first steps?
Dr. Jericho (14:26):
Yeah, so the first step would be to request a formal 5 0 4 meeting with the school. It’s important to have a doctor’s note at that time to stress the medical necessity of being on a strict gluten-free diet if you have celiac disease. In addition, the parents should familiarize themselves with what the sample 5 0 4 plans look like. And oftentimes these can be provided by the medical center or online locations. They’re easy to be found. Centers such as the Celiac Foundation typically have samples of that online that families can utilize and look at. And then connecting the parents with the Celiac community as a whole can definitely provide additional guidance support to manage the struggles children may have in the school setting.
Vanessa Weisbrod (15:13):
Absolutely. So how might families use the study’s findings as evidence when meeting with school administrators to request accommodations?
Dr. Jericho (15:22):
Yeah, that’s a great question, and I hope people do use our study to help them push forward to ensure the best possible environment for their children in the school. This study provides data-driven evidence that CLX students do face significant barriers in schools. Parents can use the findings from the study to illustrate the lack of gluten-free food availability within schools, the risks of the accidental exposure and the importance of having those formal accommodations in place. Sharing these statistics can help both the school administrators understand that the gluten-free needs are not a preference, but they’re a medical necessity and reinforce urgency of implementing these accommodations to again, ensure the safest, best, and most helpful environments for their students with celiac disease.
Vanessa Weisbrod (16:14):
Yeah, for sure. I think that until recently, we didn’t have a whole lot of research in the school setting, and it made it hard for administrators who are so driven by data to see why this is a problem and what they need to do. And so I always recommend families download the research, bring in published journal articles if your school doesn’t believe it, so that they can see, yes, this is credible research and this is what we need. Absolutely.
Dr. Jericho (16:38):
Absolutely. So yes, all those patients out there listening download this article. Absolutely. Bring it to the school to back, the resources and the school environment that’s going to provide the best quality of life for your student. Absolutely.
Vanessa Weisbrod (16:53):
So the study found that students ages 12 to 13 on a gluten-free diet for more than two years were actually at the highest risk for engaging in unsafe practices. How can parents and providers work together to support adolescents during this particularly vulnerable stage of life?
Dr. Jericho (17:10):
So anybody out there with an adolescent can certainly relate to this. I have a newly 13-year-old, so definitely encountering this firsthand. But adolescents, it is a very challenging time. There’s a lot of peer pressure. There’s that desire for independence, and often that can take precedence over dietary adherence, so parents and providers can support their team by again, trying to foster open judgment-free conversations about those social challenges and the temptations to take risks. They can try to teach the adolescents self-advocacy skills to help them explain their dietary needs to those around them. They can provide realistic strategies such as bringing your own gluten-free snacks to school or researching safe dining options in advance to know that where you’re going to be is going to provide a safe environment. And then lastly, trying to connect teens with support groups or peer mentors who are also managing celiac disease. This really reinforced that they’re not alone in their experience and they can really learn and grow from one another. Here at Stanford, we were very lucky to get a gift, and we’ve been doing monthly in-person gatherings called Happy Gut Gatherings, and we just had one yesterday. It was yoga, and it was incredible. We all did yoga together, and then everyone brought their stress relieving item from home and shared, and we all learned from one another. And I think bringing the community together is such a huge part of it.
Vanessa Weisbrod (18:42):
For sure. We run it, the Celiac Disease Foundation, a monthly teen talk, and I’m always so surprised by how many students come on and it’s the first time they’ve ever engaged with another teenager with celiac disease. And so anything we can do to connect this age group to peers who they can be a support system for each other, a shoulder to lean on a text buddy to really just get through this stage of life with celiac disease is really, really useful.
Dr. Jericho (19:11):
Absolutely.
Vanessa Weisbrod (19:12):
So looking ahead, what do you see as the next steps in research or advocacy to better support students with celiac disease at school?
Dr. Jericho (19:20):
Yeah. Well, like you were saying before, sometimes the hard facts are the best way to support and convince and move forward with change. So more research certainly on the long-term effects of gluten exposure in the school setting, as well as studies on how different school policies impact adherence and the quality of life are essential. Advocacy efforts should focus on improving school meal programs and plans by increasing the funding for gluten-free options and mandating better training for the cafeteria staff. Additionally, we need stronger policy enforcement to ensure that schools are complying with the ADA and the 5 0 4 plan requirements. And really ultimately the goal is just to create an environment where children with celiac disease can thrive academically, socially, and physically without unnecessary risk.
Vanessa Weisbrod (20:13):
Absolutely. This has been such an amazing discussion, Dr. Jericho, and we are truly grateful for all of the incredible work that you’re doing, and I can’t wait to continue advancing research and education to support kids at school together. So now let’s take a step and find out where our patient Eliana is today.
Janice Arnold (20:33):
For Eliana, having these supports in place made a world of difference. Her anxiety around food started to fade. She felt more included and her health improved. Her parents often say that once they had the right information and the right team behind them, everything changed in her own words. Once I had a 5 0 4 plan, everything got so much better. It was like one day everyone just knew I had celiac disease and had gluten-free food and was watching over me. I finally felt safe.
Vanessa Weisbrod (21:02):
And now a word from the Global Autoimmune Institute.
Speaker 4 (21:06):
The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases. Through research, education, and awareness while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.
Vanessa Weisbrod (21:25):
Thank you for listening to this episode of Raising Celiac. A special thanks to the generous contributions from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists to claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at Boston Children’s Celiac on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids Connection on Instagram. Have a great month.
Made possible by the generous support of the Global Autoimmune Institute.