[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. 

[00:00:00] 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 [00:00:15] each month on the podcast, we will invite leading experts to dive into a condition related to celiac

[00:00:20] 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 [00:00:30] Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA category one credits for Physicians.

[00:00:39] 0.5 Contact Hour for Nurses, 0.5 ACE CE Continuing [00:00:45] 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.[00:01:00]

[00:01:00] Janis Arnold: Eliza led a very normal childhood and with the exception of needing glasses at an early age, had few medical concerns. It wasn’t until she was in her mid-twenties when she started trying to have a child that she found herself visiting the doctor on a very frequent [00:01:15] basis. Eliza and her husband had no trouble getting pregnant

[00:01:19] staying pregnant was the issue five times in a row she miscarried between eight and 19 weeks. Fertility specialists couldn’t seem to explain the issues and [00:01:30] recommended that they just keep trying, so they did. After nearly 10 years of trying, Eliza and her husband welcomed a premature, but very beautiful and healthy baby girl.

[00:01:42] Vanessa Weisbrod: Over the last decade, several research [00:01:45] studies have garnered conflicting results when looking at the link between celiac disease and fertility issues. Some research has shown that women with undiagnosed celiac may struggle with fertility. While others have found that there is no increased risk of infertility, it is [00:02:00] unclear if nutritional concerns like mal absorption that occurs with untreated celiac disease, may cause reproductive issues, or if the immune system may be the culprit.

[00:02:11] Janis Arnold: Fast forward two years, Eliza thought that she was [00:02:15] exhausted all the time because she was a working mom of an energetic toddler and constantly on the go. Her stomach hurt many days a week and she had lost quite a bit of weight even though she wasn’t trying to. Every morning she had diarrhea. She had to go at [00:02:30] least three times before she could leave the house. When she got on the scale and it read 90 pounds, she knew she needed to see a doctor. She scheduled a visit with her primary care and had lots of labs done. She was severely anemic, deficient in vitamin [00:02:45] B12 and had a tissue transaminase antibody level that was more than 10 times the upper limit of. She was scheduled for a visit with a gastroenterologist within two weeks and underwent an endoscopy that showed total villous atrophy, [00:03:00] a clear indication she had celiac disease. As Eliza started doing research on celiac disease, it made perfect sense. But what she wasn’t expecting to learn is that her prior struggles with pregnancy could have been related to celiac disease. [00:03:15] With this knowledge in hand, she felt hopeful. She would feel better. And would be able to start trying to give her daughter a sibling.

[00:03:25] Vanessa Weisbrod: It’s well established that patients with celiac disease often have problems absorbing [00:03:30] calcium, iron, folate, and other vitamins and minerals. This can lead to iron deficiency, anemia, and low bone density. The good news is that most often these deficiencies correct once on a strict gluten-free diet and the gut heals. Most patients feel better quite [00:03:45] quickly, though some can take more than a year or two to fully respond to the gluten-free.

[00:03:51] Janis Arnold: Eliza went on a gluten-free diet and felt a little better. She was very strict about her diet and never cheated even when she really wanted a bite of a [00:04:00] soft and chewy gluten containing bagel while on a family trip to New York, Despite her vigilance with a gluten-free diet, two years after her diagnosis, she still didn’t feel well, and the daily diarrhea was severely impacting her quality of life. [00:04:15] She was feeling antsy because she really wanted a second child, but her health just wasn’t strong enough to endure the physical demands of a pregnancy. She headed back to the gastroenterologist. After a round of blood work, stool tests and a colonoscopy, [00:04:30] Eliza found herself with a second diagnosis of ulcerative colitis.

[00:04:36] Vanessa Weisbrod: Ulcerative colitis is a type of inflammatory bowel disease in which the inner lining of the colon and rectum become inflamed. Inflammation [00:04:45] usually begins in the rectum and lower large intestine and spreads upward, potentially involving the entire colon. Ulcerative colitis causes diarrhea and frequent emptying of the colon as cells on the surface of the colon die and fall. Ulcers form leading to [00:05:00] puss, mucus and bleeding. Ulcerative colitis may occur at any age, but is most common in older children and young adults, and may run in some families. Like celiac disease. Ulcerative colitis is a chronic autoimmune disease where the body mistakenly [00:05:15] attacks itself. Similarly, to celiac, it may be triggered by a combination of genetic and environmental factors, but for Eliza, which came first, did one autoimmune disease cause the other? Should she have been tested for more at the time of her celiac diagnosis? [00:05:30] And did these two conditions play a role in her struggles to stay pregnant? We’ll discuss this and more on today’s episode of Raising Celiac.

[00:05:38] Vanessa Weisbrod: Today we talk about celiac disease and IBD with Dr. Maria Ines Pinto-Sanchez. Dr. Pinto [00:05:45] Sanchez is a gastroenterologist at McMaster University in Hamilton Health Sciences. She is the director of the Celiac clinic at McMaster University and provides nutritional support for the Home Perinatal Nutrition Program in Intestinal Failure Clinic. Her [00:06:00] clinical and research. To include the diagnosis and treatment of different gastrointestinal conditions with a focus on celiac disease and gluten related disorders. She recently authored a paper on the Association of Celiac Disease and Inflammatory Bowel Disease, which she’s going to tell us [00:06:15] more about today. On a personal note, I get to work with her on educational programming for the Society for the Study of Celiac Disease and honored she is joining us today. Welcome Dr. Pinto-Sanchez to Raising Celiac.

[00:06:27] Dr. Pinto-Sanchez: Thank you very much, Vanessa, for inviting me, and I [00:06:30] think it’s fantastic that you’re doing this podcast to educate people and raise awareness about celiac disease.

[00:06:35] Vanessa Weisbrod: Thank you. We are very excited about it. So, before we talk about Eliza’s story, I want to talk about the similarities and differences between celiac disease and inflammatory bowel [00:06:45] disease. Can you tell our listeners how they are alike and how they are different?

[00:06:49] Dr. Pinto-Sanchez: Absolutely. So, both inflammatory bowel disease and Celiac disease are considered chronic, which is long term, inflammatory conditions, and both involve the immune [00:07:00] system. So, and both of them affect the gut. However, there are some differences between IBD and celiac disease, celiac disease is characterized by inflammation, so you can see inflammation in the gut. But ulcers, having ulcers, which you describe [00:07:15] already for these patients are not quite common. It’s very, very rare to find ulcers in celiac disease. And also celiac disease affects the small bowel and mainly the very first parts of the small bowel. So, um, uh, so this is different from inflammatory bowel disease. [00:07:30] In the opposite hand, IBD or inflammatory bowel disease involve two main conditions and that one of them is ulcerative colitis, which Eliza has been diagnosed with. And um, this ulcerative colitis [00:07:45] affects mainly the colon, which is a large bowel. And the second one, which is Crohn’s Disease, can affect any part of and both of them, they produce such inflammation and lead to ulcers. So these are the [00:08:00] differences between celiac and IBD. And as you will see, uh, they can share symptoms in common that when you do the endoscopy, you can differentiate most of the times both of them. And another important aspect is that celiac disease is a genetic [00:08:15] condition, and that means that it has a strong genetic predisposition. And that’s why it runs in families and that’s why it’s so common to find another celiac in a family. However, in IBD believe whether there are some genes involved and there are some family [00:08:30] preposition is not as strong as in celiac.

[00:08:32] Vanessa Weisbrod: Great. So Eliza stuck to a very strict gluten-free diet, or at least she claimed to. How do you assess if the continuing symptoms are related to ongoing gluten exposures or potentially a different disease [00:08:45] process?

[00:08:45] Dr. Pinto-Sanchez: So the first thing that we do, is to have  dietician education and assessment. And this is because we can identify sometimes by interviewing the patient,  situations that can expose people to[00:09:00] to gluten, and then we can correct. And then we do have other objective measures and some of them, they’re not perfect. For example, TTG antibodies or celiac markers, and we do that to determine if the person has been exposed. So mostly if they [00:09:15] have their celiac is active, which is related. Secondary to gluten exposure. Um, the problem is that these markers are not very accurate to determine exposure, especially if it is very occasional.

[00:09:26] And that’s why there is a novel test also that you can detect [00:09:30] gluten in stool. Like gluten is not gluten itself is the reaction or, or antibodies produced when people are supposed to gluten. So these are the very tiny parts after gluten digestion and these two tests or urine tests [00:09:45] to detect gluten can be done at home.

[00:09:47] So most of the times we do, we progress, you know, dietician, do blood work, and then we advise people to get these tests to self-assess gluten [00:10:00] exposure. If all these tests are negative. Then, uh, then we, we need to look for other reasons, right? Um, to see if, uh, you know, this person is experiencing symptoms that is not related to[00:10:15]

[00:10:16] Vanessa Weisbrod: How do you counsel a patient like Eliza on the importance of sticking to a gluten-free diet when it doesn’t seem to be helping their symptoms?

[00:10:24] Dr. Pinto-Sanchez: this is a real, real situation and is very challenging for everybody. And, um, it’s very [00:10:30] important that we discuss with our patient that. always correlate with the CEL a activity, right? So patients with celiac disease can have significant amount of inflammation in their gut and not much symptoms. Or not perceived symptoms.

[00:10:44] And then in the [00:10:45] opposite hand, they can have a lot of symptoms and not very much inflammation in the gut. But the truth is that the only way of getting their celiac disease under good control is to be completely, completely away of. [00:11:00] And that’s why we recommend patients to explain this after explaining this is to strongly recommend to adult, you know, like a strict term for diet.

[00:11:10] So then they can heal.

[00:11:13] Vanessa Weisbrod: So your group at McMaster recently [00:11:15] published a study in the Journal Gastroenterology that establishes a connection between Celiac and IBD. Can you tell her listeners about this study? What did you look at and what did you find?

[00:11:24] Dr. Pinto-Sanchez: Absolutely. That was very exciting. And, and this is, we did that. That [00:11:30] study is a bit. We look into the association between celiac and IBD because, um, there has been always, and many, many, uh, studies evaluating this association and there has been controversies in those results.

[00:11:43] And that’s why what [00:11:45] we did, um, in order to approach, when you have a lot of studies there out there and then there are controversies. The next step is to, um, is to look and pull all these studies. And this is what we did. We did a systematic review with meta analysis, which is, uh, [00:12:00] pulling all these studies together to get information on whether celiac is most associated with IBD. And this is not just pulling, it requires an, uh, you know, like a very rigorous technique, uh, knowledge and how [00:12:15] to do this properly and how to set up protocol in advance, set up criteria. Not every single study that is out there, we qualify right then.

[00:12:25] After pulling [00:12:30] 64 studies we determined that there is a ninefold increased risk of having IBD in celiac disease. If so, if patient has celiac disease, it has nine times more chances of getting [00:12:45] IBD and most frequently Crohn’s disease. And in the opposite hand, if you have IBD, it is fourfold increase or four times more frequent to have celiac disease than someone that doesn’t have celiac disease.

[00:12:59] [00:13:00] So in both ends there is an increased risk of having the other condition if you’ve been diagnosed with it previous. And more recently I was invited also to collaborate with prestigious colleagues, you know, from Sweden and Columbia University [00:13:15] and to analyze database, from all people from Sweden that have been diagnosed with celiac disease and also IBD and that were like over hundred 60,000 people.

[00:13:27] And, um, The same [00:13:30] results came in that large, very, very large study. Um, there, there was an increased risk of IBD in celiac disease and vice versa. And another important finding from that study that the latest that was recently published, is that the [00:13:45] diagnosis of, IBD in celiac disease is usually done within a year.

[00:13:49] So it is, it’s pretty quick, relatively right. So those are important findings, but still, you know, we have questions [00:14:00] that require more for research.

[00:14:03] Vanessa Weisbrod: So for these you, it’s a quick, you know, diagnosis of the second condition. Are these patients coming back and saying that they’re still symptomatic despite the treatments that they’re being on? Or how is it happening so quickly?[00:14:15]

[00:14:15] Dr. Pinto-Sanchez: Yes. So usually most of the time patients when they are diagnosed with a celiac disease and they started gluten-free diet, similar to what happened to Eliza.

[00:14:24] Um, they start, they’re doing the diet very strict and they see dietician. There is no [00:14:30] cross-contamination. That’s the first thing that we do. And then if they persist with symptom, we start other investigations. And one of the investigations involve a stool test, uh, uh, or, uh, blood work. Ultimately colonoscopy to rule out inflammatory [00:14:45] bowel disease.

[00:14:47] Vanessa Weisbrod: Great. So the data establishes this link, but how should gastroenterologists use this information in their everyday clinical practices?

[00:14:56] Dr. Pinto-Sanchez: So once we do the studies, and once we do [00:15:00] this, this meta-analysis, those are usually used for to develop guidelines, right? So this is one way of reaching, other colleagues, uh, but it is very important that not only gastroenterologists, but all clinicians are aware of this [00:15:15] association and. They consider, and this is because if they’re aware of the association, they should consider investigating for celiac disease in someone that has IBD and is not responding to the treatment or vice versa.

[00:15:28] We have celiac disease and [00:15:30] is not responding to gluten for diet and have per symptoms to investigate for IBD as well because again, it is more frequent than in the general.

[00:15:39] Vanessa Weisbrod: Is the treatment for either condition modified based on having the dual diagnosis?

[00:15:44] Dr. Pinto-Sanchez: [00:15:45] So that’s interesting question and there are no many research studies on that, but, um, let’s say that at first it will see that exist. Uh, Should follow it. Look trigger lymph for diet anyways. Right. And if they’re diagnosed with, with [00:16:00] IVD on a top of a disease, more likely they’re, this person is going to be prescribed with additional treatment, which can involve depending on the location of the disease, like ANS or can involve like, you know, like a tablet for Pecos or [00:16:15] Anti-flammatory or immunosuppressants or intravenous medications.

[00:16:17] So there are a big variety of medications related to the severity of the disease. On the opposite hand, if a IBD is diagnosed and a person is doing all this treatment and has [00:16:30] persistence symptoms or, or is diagnosed with CEL disease, very likely this person is going to start cancer diet. And one of the thing, um, um, uh, it’s important is that the glutenin free diet is not, it shouldn’t be prescribed to all, only to [00:16:45] those that are diagnosed with disease.

[00:16:48] The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases. Through research, education, and awareness, while supporting [00:17:00] multidisciplinary approaches to health, we are thrilled to support the production of this educational.

[00:17:07] Vanessa Weisbrod: So thinking about Eliza’s story and the diagnosis of celiac disease, should additional screening for IBD have been done at the time of [00:17:15] celiac diagnosis, or was the high tissue transaminase level a reason to only do the small B small bowel biopsy?

[00:17:22] Dr. Pinto-Sanchez: Yeah, so that’s a very good question. So we acknowledge that there is an association, however, not everyone with celiac disease will have IBD or vice, [00:17:30] right? So at this time is unclear whether, which, you know, we should screen for IBDD in everyone, with celiac. Feel like this isn’t everyone with IBD. So what we do right [00:17:45] now, and I think until we have more information, is to check for IBD only if symptoms persist despite the very strict diet, or in the opposite hand is to screen for it. This is if person continues with let’s say, diarrhea, load and extension or gastrointestinal symptoms despite [00:18:00] doing different medication for IBD and especially sometimes the IBD is less active and then they have still symptoms and then diagnosed with say like, is this later? And the TtG is tricky because it can be high also [00:18:15] people with IBD without being celiac. So, it’s important to, to dig deeper in the diagnosis, to obtain the, you know, endoscopy, small bowel biopsy, and trying to, to characterize very well whether this is associated still like this or is [00:18:30] just elevated, mildly elevated because of a secondary to cross reaction to the.

[00:18:36] Vanessa Weisbrod: So how would a gastroenterologist make a decision to test for one the other, or both at the same time with a new patient?

[00:18:44] Dr. Pinto-Sanchez: So [00:18:45] it is challenges sometimes this is because, uh, there is a high variability how doctors, uh, you know, determine me, which test to order and not always follow guidelines and they’re not always guidelines available for everything. So, [00:19:00] The truth is that most of the time doctors will be guided by symptoms and, um, as part of a general blood work.

[00:19:06] is so common that, you know, if someone has diarrhea, low to distension, abdominal pain, of course they are not limited to those symptoms, but it’s a [00:19:15] low threshold to, to check for ttg and if a person has diarrhea, abdominal pain. Those are common symptoms also for IBD and especially now in Canada, and well, US two.

[00:19:26] The rates of IBD are high and are increasing, right? [00:19:30] So there is a low threshold to, to test for, to order a stool test, which is qualify, cal protectin, or a CRP. You know, like a, in blood work, it’s very low threshold to do that. So most doctors are doing this when patient has [00:19:45] symptoms and if DTG becomes positive, as I mentioned, is important because TTG only, especially when it’s not in a very high.

[00:19:54] Not a hundred percent specific for celiac. So it’s important to dig deeper there and proceed with further [00:20:00] a test. For example, doing an endoscopy to obtain biopsies and see if this is celiac. Um, and again, if the person has more lower symptoms and diarrheas to liquid or her blood, very likely they’re going to order colonoscopy as well.

[00:20:13] So again, it’s [00:20:15] mostly guided by symptoms, but again, symptoms are not a hundred percent specific. So is this challenging for every.

[00:20:21] Vanessa Weisbrod: So I know behind the scenes you’re becoming the guideline queen. Maybe, um, this will become a guideline that you’ll create someday.

[00:20:28] Dr. Pinto-Sanchez: Oh my God. [00:20:30] are not that, that easy. That’s why there are not many many guidelines there.

[00:20:37] Vanessa Weisbrod: So this might be hard to answer, but do you think that all patients diagnosed with celiac or IBD should be tested for the other at the point of diagnosis?[00:20:45]

[00:20:45] Dr. Pinto-Sanchez: Yes, It’s, you know, it’s important to, I, I will say, to clarify that we don’t have enough information. Make a recommendation at this moment. And again, we need to assess all this. And, and it’s not just the frequency. What will determine [00:21:00] recommendations. So we need more studies. So see it not only the association, but what will happen if someone is diagnosed with celiac, how they would respond, uh, concomitant to IBD, What are the consequences of treating nont?

[00:21:11] Treating, um, what are the risk of doing, you know, [00:21:15] like additional treatment versus not treating. So, You know, we need more information on outcomes, uh, and how people will react to these conditions but not, we are not ready to test for everyone.[00:21:30]

[00:21:32] Vanessa Weisbrod: So while we probably can’t answer the question, which came first, is there a way to prevent developing a related condition or predicting if someone will get one if they already have celiac disease?

[00:21:42] Dr. Pinto-Sanchez: That’s another area to invest. [00:21:45] Very, very interesting question that unfortunately we don’t have the data to, to, to say what is the chicken, what is the, the act, um, um, in, in, in that study, Most people with, uh, IBD, uh, proof, [00:22:00] see like the. Develop earlier, but again, I think it’s is very difficult to, to pretty, which is the first and how to prevent that.

[00:22:10] We don’t have yet that information.

[00:22:12] Vanessa Weisbrod: I think that’s a question that we have to study in [00:22:15] so many of these autoimmune diseases that are linked. You know, I feel like we talk about all the time, which came first, Type one diabetes or celiac disease. You know, we don’t know the answer. The same with thyroid conditions and celiac disease. So I think there’s just a lot of unanswered questions in our [00:22:30] field.

[00:22:31] Dr. Pinto-Sanchez: Definitely, absolutely a hundred percent agree with you.

[00:22:35] Vanessa Weisbrod: So Eliza now has a beautiful little girl. Knowing that mom has two genetically mediated autoimmune diseases, what testing should her daughter have, if anything? [00:22:45] Or what should she tell doctors to ensure early intervention if she develops symptoms?

[00:22:50] Dr. Pinto-Sanchez: So, what is recommended in Celia Disease is. Screen first degree family members, which includes children, parents, siblings. [00:23:00] And uh, the reason for doing this is because first degree family member, including children, are the highest risk population for S disease.

[00:23:08] There is no other high risk population than first degree family members. It could be, the risk could be up to 15 times [00:23:15] about, you know, compared to someone that doesn’t have a per family member. So it’s a very high risk and that’s why what we recommend is to screen for celiac disease. and most of the time it’s independently of the symptoms.

[00:23:26] And, and this is because, um, celiac [00:23:30] disease can manifest in so many ways that we cannot tell one specific symptom or two specific symptoms. To be aware of. Um, so, uh, what, when to start screening children that ask a question that many of our patients ask. Um, usually what is [00:23:45] recommended is, you know, if a pa, if, if the children is doing well and is there is no urgency to do a test, is to wait until they are after two and a half or three years, because that’s a time when the antibodies are.

[00:23:57] The immune system is fully developed and they can [00:24:00] produce the antibodies. Otherwise, if we do it too earlier, then they will not have the possibility of, of developing antibodies. And then the test may come. False negative, however, is again, it’s if the children is highly symptomatic, it may require other tests and [00:24:15] that we recommend to consult with their family doctor or the pediatrician, um, to see what other tests, uh, this patient may benefit to rule out.

[00:24:23] Celia, this is in the children and however, in I v. The opposite end. There is no [00:24:30] recommendations to screen for everyone in the family as the As. As I mentioned, the genetic praise position is not that strong as in Celia. So screening for IBD, it will be based on symptoms. The patient is symptomatic mostly.[00:24:45]

[00:24:45] Vanessa Weisbrod: Is there any reason for Eliza to preventatively put her child on a gluten-free diet?

[00:24:51] Dr. Pinto-Sanchez: So we recommends against that And, and this is because what happens is without, uh, [00:25:00] knowing that, that the person is Celia, then the glu diet can lead to more risk and benefits. So it’s important to, um, that if, if, uh, you know, the children is symptomatic or is to do. The [00:25:15] test first and to rule out celiac and see whether an endoscopy is needed.

[00:25:19] Um, again, we’ve just published another study on the high risk of nutrient deficiencies related to gluten diet, and it, it’s 60% of people on a gluten-free diet have deficiencies, [00:25:30] and that’s not minor. So it’s important to emphasize that we need to recommend gluten-free free diet only to those who really need it and will produce more benefit.

[00:25:41] Vanessa Weisbrod: Absolutely. And to still see a dietician with your on a gluten-free [00:25:45] diet, all the.

[00:25:46] Dr. Pinto-Sanchez: Definitely, and that’s not only because of if the person needs to be very strict to guide how to do a strict diet, but also to guide how to do nutritional adequate.

[00:25:57] Vanessa Weisbrod: Absolutely. [00:26:00] So what do you see as the future for patients with both Celiac and IBD? Are there screening or therapeutic interventions in the pipeline that could help this patient population?

[00:26:09] Dr. Pinto-Sanchez: I see gluten-free diet can help controlling symptoms in people with IBD as well. And, [00:26:15] there are many medications prescribed with IBD. For example, corticosteroids, immunosuppress and that, you know, biologic that are, have been studying some people with diseases and may help controlling, you know, uh, [00:26:30] celiac disease is. therefore, I, what I think is treating one condition will help with the management of the other condition. And, um, in addition, when you treat someone with Celiac, this disease on a gluten-free diet, and you [00:26:45] have, you know, a gut healing, one of the things that I predict that will happen also, that medication will absorb better.

[00:26:51] So you may, that may help by treating celiac also, not only with symptom. Controlling the IBD as well by getting more [00:27:00] medication in their system. Uh, so I, I think it’s again, it’s very, very important to treat both conditions appropriately if they’re diagnosed,

[00:27:12] Vanessa Weisbrod: Thank you so much, Dr. Pinto-Sanchez for all of the [00:27:15] wisdom you shared today.

[00:27:16] Dr. Pinto-Sanchez: Thank you very much, Vanessa.

[00:27:17] Vanessa Weisbrod: Now, let’s find out where Eliza is today.

[00:27:20] Janis Arnold: Eliza’s journey to diagnose both celiac disease and ulcerative colitis was a long one, filled with many challenging days. Today, Eliza feels [00:27:30] stronger and healthier than she was 10 years ago. She has tried different treatments for her I B D, including budesonide and Remicade, and always sticks to a gluten-free diet.

[00:27:40] She is now a mom to two daughters who bring her so much. in her [00:27:45] own words. I never imagined I would have two GI diseases, but I’m grateful to my medical team for getting me to a place where I can be an active part of my kids’ lives and enjoy our adventures as a family. But I still never leave home without [00:28:00] Imodium in my purse.

[00:28:01] 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, and social workers and dieticians. To claim your continuing [00:28:15] education credits. For listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode.

[00:28:25] If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcast. [00:28:30] 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. Join us next month when we discuss the relationship between celiac disease and type one diabetes.

[00:28:44] Have a [00:28:45] great month.

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.

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.

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:

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. 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.

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Join us next month when we discuss the relationship between celiac disease and mental health. Have a great month.

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:

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 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.

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.