Welcome!

 

Raising Celiac is a podcast from the Celiac Disease Program at Boston Children’s Hospital dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. Hosted by Education Director Vanessa Weisbrod, each month the podcast will feature experts from across the United States and around the world to discuss the complexities of this chronic genetic condition and how it intertwines with so many other autoimmune diseases.

 

Accreditation

Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital’s Continuing Education Department for 0.5 AMA PRA Category 1 Credits ™ for physicians, 0.5 contact hours for nurses, 0.5 ACE CE continuing education credits for social workers, and 0.5 CEUs for Registered Dietitians. To claim credits, please listen to the episodes below and complete the brief corresponding survey for each episode.

Episodes

12/15 Episode 1: History of Celiac Disease: Does Gluten Really Cause so Many Problems?

Expert Guest: Dr. Dascha Weir, Boston Children’s Hospital 

Learning objectives:
1.) Describe celiac disease and the proper diagnosis techniques
2.) Identify common and uncommon symptoms of celiac disease
3.) Explain common errors in celiac disease diagnosis

To claim credit, please register for an account on our course website and complete a podcast survey here.

[00:00:00] Host: Welcome to Raising Celiac, a podcast dedicated to raising the standard of education, awareness, and research on celiac disease and related autoimmune conditions. I’m Vanessa Weisbrod, the Education Director of the Celiac Program at Boston [00:00:15] Children’s Hospital, and each month on the podcast, we will invite leading experts to dive into a condition related to Celiac. And look at how it impacts a patient family. The latest research and offers suggestions for health providers to manage these [00:00:30] complex cases. Every episode of the Raising Celiac podcast is accredited by the Boston Children’s Hospital Continuing Education Department for 0.5 AMA PRA category one credits for physicians. 0.5 contact hours for nurses. 0.5 ACE CCE Continuing education credits for social workers and 0.5 CEUs for registered dieticians claim your credits for listening to today’s episode, please visit [00:01:00] dme.hospital.org/raising celiac. Let’s get started with this month’s Raising Celiac story.  

[00:01:09] Guest: Peter was a pretty normal toddler. He giggled all the time, played joyfully with his family and [00:01:15] friends, and loved every food his mom put in front of him, especially avocados, broccoli, and snicker doodle cookies. His mom lovingly referred to him as her chubby little munch. Until just before his third birthday when he seemed to thin out all around but not get [00:01:30] any taller. His preschool class photo came in and he was a full head shorter than the other kids in the class. Despite being one of the oldest, something had to be up right. 

[00:01:41] Host: Celiac disease is a chronic genetic autoimmune condition that can [00:01:45] affect any system of the body. The only treatment is a lifelong gluten-free diet. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing important nutrients from food and cause a variety of symptoms like [00:02:00] abdominal pain, nausea, diarrhea, vomiting, fatigue, weight loss, mouth ulcers, and growth issues to name a few. 

[00:02:08] Guest: Peter’s parents took him to the pediatrician. One of the first tests they ran was for celiac disease. It was [00:02:15] positive. Peter’s parents were both surprised and not surprised at the same. They were aware of this condition because Peter’s grandmother also had celiac disease. Though her main symptoms were diarrhea and vomiting. She never had issues growing. How could [00:02:30] Peter have the same disease but not obviously react when eating the foods that made Grandma so physically ill? 

[00:02:35] Host: Celiac disease can affect patients in very different. Some might have very obvious physical symptoms, while others may be more subtle or even none at all, [00:02:45] regardless of the symptoms, the reaction in the body is the same. When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with vii, tiny finger-like projections that [00:03:00] absorb nutrients from the food passing. in celiac disease, gluten damages the intestines and causes the villa to break down, leaving a smooth lining that can no longer absorb nutrient. It’s. 

[00:03:11] Guest: As Peter’s parents dove into researching everything about [00:03:15] celiac disease, they quickly learned that the rest of the family needed to be tested and that symptoms could impact any system of the body. Peter’s dad had spent his entire life with crippling neuropathy in his hands and feet. He also tested positive for celiac [00:03:30] disease. Then a few months later, his aunt tested positive after seeing a dermatologist for a blistery rash on her elbows. Oddly enough, Peter’s cousin also tested positive for celiac disease but had no distinguishable symptoms and was only tested [00:03:45] because he also had type one diabetes. Were all of these differing symptoms really related to eating gluten and as Celiac really so common that several family members all have it. 

[00:03:55] Host: Not to give it all away, but the answer is yes. All of these different [00:04:00] symptoms and many more can be related to gluten. As Peter’s family quickly learned, celiac disease is far from uncommon. An estimated 1% of people in North America are affected by this autoimmune disease. Typically more girls than boys [00:04:15] and many are undiagnosed, and Celiac is also closely related to many other chronic diseases including type one diabetes and thyroid disease. So this season on Raising Celiac, we’re going to explore why we’ll talk to [00:04:30] experts across the United States and around the world to discuss why celiac disease is so complicated and how better understanding it may be the key to learning more about other autoimmune conditions. So let’s start raising Celiac.  

[00:04:43] Today we talk about the history [00:04:45] of celiac disease with Dr. Dosha Weir, the clinical director of the Celiac disease Program at Boston Children’s Hospital. Dr. Weir first became interested in celiac disease during her medical training and is now a board-certified pediatric gastroenterologist with [00:05:00] expertise in celiac disease in children. Dr. Weir’s recent research has focused on non-responsive celiac disease in children, and she is a champion for supporting food insecure families with celiac disease. Dr. Weir sits on the executive committee of the Harvard Medical School [00:05:15] Celiac Research Program and the Board of the Celiac Kids Connection. 

[00:05:18] Welcome Dr. Weir to Raising Celiac. 

[00:05:21] Thank you so much for having me. It’s really a pleasure to be here. 

[00:05:25] So before we talk more about Peter’s family story, I wanna talk about the history of [00:05:30] celiac disease. When and how was it discovered? 

[00:05:33] Celiac disease is not a new thing, even though many of us have only just started to hear about it more regularly. It actually was first described by a physician back in the Roman [00:05:45] Times, around a hundred to 200 a d and he described, um, You know, he described patients who had problems with digestion and absorption, and actually called it celiac affection at that point in time. 

[00:05:58] Celiac is [00:06:00] actually from the Greek word belly, which makes reference to one of the classical symptoms that we sometimes see with celiac disease of, of a vi, a big, distended belly. So, it really does go way back. Um, and then it was mentioned in the medical [00:06:15] literature as far back as the 16 hundreds and through the 18 hundreds and the 19 early 19 hundreds European, British, and American physicians identified and discussed celiac disease. 

[00:06:27] And trialed various dietary treatments without [00:06:30] the understanding that gluten was triggering celiac disease, which is really interesting to look back at how that piece was fit into the, to understand celiac disease. Um, in 1920s there was an American physician named Dr. [00:06:45] Haas, and he noticed, um, in, in Puerto Rico that in the city where people ate bread, there was more suffering of celiac. While the farmers who lived in the country and [00:07:00] mostly ate bananas, rarely suffered from celiac disease. And he made that observation and decided that the key to treating celiac disease was bananas. He did not pick up that the gluten, perhaps it was the absence of gluten. That was really, was really the key [00:07:15] there. Um, and he, he really developed a banana-based diet that did have some success in treating kids. Celiac disease back in the early 19 hundreds. Um, so it’s just kind of interesting because he really was prescribing the diet without realizing [00:07:30] exactly what he was doing. 

[00:07:31] That’s so interesting. 

[00:07:33] Yeah, I thought it was really interesting. And they call people who had celiac disease in that era and survived, uh, banana babies actually, It wasn’t until after World War II when the connection was made between [00:07:45] celiac disease and the trigger of gluten, of ingested gluten, and there was a Dutch pediatrician whose name was William Carl Dickey, who observed that during the war when there was no bread available, that Dutch children with celiac [00:08:00] disease got better and that they were not dying. And he really noticed that there was this big improvement in kids with celiac disease and then when the bread returned, they started getting sick again. And that really, that really helped him make that connection which was obviously a huge breakthrough in the [00:08:15] treatment of celiac disease 

[00:08:16] and that advancement was in the 1950s when we started being able to do small bowel biopsies and that really paved the way. For us to be able to confirm celiac disease by the characteristic inflammation [00:08:30] and damage that we see when someone with celiac disease is consuming gluten. And then the last piece was, um, the advent of serologic tests. So ttg IGA is a blood test that we have that we really rely on a lot to [00:08:45] help us figure out who has celiac disease. And that was really only recognized as a marker of celiac disease, um, in 1997. So that was another really big step that helped us understand celiac disease and recognize celiac disease [00:09:00] much better than we had done previous. 

[00:09:02] it’s been amazing to see over the last, you know, 20 years how much we’ve learned and how far our community has come. 

[00:09:09] It really is amazing, isn’t it?  

[00:09:11] Absolutely. So as we heard from Peter’s family, [00:09:15] celiac disease affects people in many ways if there are so many symptoms. How can doctors know when the right time is to screen for celiac? Should they always just be testing no matter what the ailment? 

[00:09:25] It’s a really good question because you’re right. The range of how people show up with celiac [00:09:30] disease is so broad. There are so many different ways people can show us that they have celiac disease. Um, and, and what’s really tricky about it is some of those symptoms are really common symptoms of, of being human, you know, and they’re not always linked to [00:09:45] celiac disease. And so, um, It can be really tricky to figure out who to screen. There’s really two groups that we think about who need screening. One are people who have a variety of symptoms, you know, including gastrointestinal symptoms, growth issues, and, and many, [00:10:00] many other symptoms as we’ve sort of outlined in Peter’s case. I think we should have a really low threshold to sending blood work to look for celiac disease. So There’s another group though, that we also need to think about, and that’s kids. Kids that are if you have a first degree family member with celiac disease, [00:10:15] for example, or you have another disorder like an autoimmune disease such as thyroid disease or type one diabetes, your risk of having celiac disease is higher than the average population. And so we should be thinking as a medical community about [00:10:30] actively screening those patients as well. 

[00:10:32] Can you tell our listeners what some of the more common symptoms of celiac disease are? 

[00:10:38] some of the common symptoms that we see in celiac disease are gastrointestinal symptoms like abdominal [00:10:45] pain, nausea. Some people will have changes in stool and it doesn’t just have to be diarrhea. It can also be constipation. Um, another big way that we see children presenting with celiac disease is not growing well, and that might be that their linear growth, their [00:11:00] height is stunted, and that they have something that we call short. Or it might be that they are not gaining weight well or are actually losing weight. Those symptoms in kids are red flags, that there is something going on in the body. And it turns out that celiac [00:11:15] disease is, is a very major cause of those symptoms in kids. Um, but there’s other non GI symptoms that are relatively common. Iron deficiency anemia is another big one that can be a sign of celiac disease. Um, and uh, fatigue [00:11:30] is another one that I actually see quite a. 

[00:11:33] So is it really possible to have no symptoms at all, but still test positive for Celia? 

[00:11:39] It is. So we keep track of the diagnosis of celiac disease in our program [00:11:45] and we’ve gone, we’ve been doing that since, you know, 2001. And when we look at the numbers of kids that we’ve diagnosed, we see that a a little bit under 10% of patients, uh, don’t have identifiable symptoms before the diagnosis. Um, which is [00:12:00] really surprising to families when they find themselves, you know, thinking about this diagnosis and a kid that they really were not worried about prior to, prior to the blood test that was sent. 

[00:12:09] But one of the things that I think is really interesting is that I, I. Over the [00:12:15] years have become a little more reluctant to calling that asymptomatic celiac disease because I’ve had so many experiences where kids, we’ve identified that they have celiac disease, they go on a gluten-free diet, they come back for follow up, and there is something that’s better that they hadn’t [00:12:30] identified beforehand is off. Often it’s, Oh, my kid has so much more energy. Or sometimes kids will verbal. , I, I did have abdominal pain and now it’s gone. I think kids are so resilient that I think sometimes they don’t realize that they have a symptom until it’s [00:12:45] not there. Or they don’t realize that a symptom might not be normal that everybody else feels until it’s not there. So I, I, I hesitate a little bit to use asymptomatic, um, the asymptomatic label on patients. I can tell you that there are absolutely [00:13:00] people who do not have symptoms and do not feel better on a gluten-free diet. And it, and it can be a hard thing for families and patients to wrap their heads around. 

[00:13:07] So let’s say you have a patient who is seemingly asymptomatic or you know, doesn’t have any obvious noticeable symptoms to themselves, [00:13:15] um, and they go in the gluten-free diet and they’re not feeling better, why should they stick to that gluten-free diet? 

[00:13:20] There are a lot of good reasons to treat celiac disease. Even if you don’t have symptoms. Obviously, if you have symptoms, that’s a really big motivating factor to everybody. Um, but if [00:13:30] you don’t have symptoms, you still have the inflammation and damage in your intestine and, and long term inflammation in your intestinal tract is not a healthy thing. 

[00:13:38] It can predispose you to nutritional deficiencies, which can have health. Including bone density [00:13:45] problems and osteopenia or osteoporosis, which is like a, um, um, a lack of bone density in weak bones. Um, he can also lead to things like infertility and there are descriptions in adults with untreated celiac disease who have certain [00:14:00] malignancies of the small intestine, um, which, uh, are associated with untreated celiac disease. 

[00:14:05] so the stakes are really high. The other piece that is particularly relevant to the, like children and the pediatric population is growth. You [00:14:15] know, kids may not grow to their full potential and when they hit their growth spurt, they may not grow, as tall as they should be, and they won’t realize it until it’s too late. 

[00:14:24] So that’s another big reason. 

[00:14:26] All very good reasons 

[00:14:28] We think so[00:14:30]  

[00:14:31] Ad Break: The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases. Through research, education, and awareness, while supporting multidisciplinary approaches to health,[00:14:45] we are thrilled to support the production of this educational. 

[00:14:50] welcome back. So, Dr. Weir, we hear all the time that it can take years for a patient to be correctly diagnosed with celiac disease. Why does it take so long in some.[00:15:00]  

[00:15:01] I think a lot of this. Is because of the variety of how patients show up with celiac disease. And sometimes the symptoms can be very subtle or the symptoms can be atypical. I think, um, a [00:15:15] lot of people in the medical field and outside of the medical field, Note about the classic presentation of celiac disease. 

[00:15:22] The young child who has failure to thrive, a big swollen belly might be throwing up or having diarrhea. tend to get [00:15:30] diagnosed, uh, very quickly. Okay. But what is actually more common is to be, to be less dramatic and to be older. So in our, in our program, the average age of diagnosis is about 10. 

[00:15:42] And these patients may have some [00:15:45] abdominal pain, they may have some fatigue. And, and like I referenced before, a lot of these symptoms are very frequent symptoms of, of childhood and of adolescence, and can be explained away for other reasons, either by the family and not coming to present. Care, you know, [00:16:00] not asking for help and sorting out the, the, the symptoms, but also the physicians may, may not think to send, um, the celiac testing, the celiac serology testing. 

[00:16:11] So I think, I think that the reason why it takes so long, or historically [00:16:15] why the reason why it has taken so long is because it, it, it, it can be, it can be complicated and tricky and I don’t think it’s always been on everybody. Um, radar to think about it in those more subtle, in those most more subtle cases. 

[00:16:28] I, I like to think that [00:16:30] we’ve gotten better through the years, um, and identifying it. Um, but I think there are still people who have symptoms for longer than they should before we figure it out. 

[00:16:38] so just so we’re setting the record straight, can you tell our listeners what are the correct tests for celiac disease [00:16:45] and what would you see on those tests come back where the pediatrician should refer to a gastroenterologist? 

[00:16:51] Absolutely. Our best blood test is something called tissue transaminase. Which is a mouthful iga, we call it ttg IGA for [00:17:00] short, sort of a short way to say it. Um, so that test is a really helpful test, um, when you’re worried about someone having celiac disease, and we recommend sending it with a total iga. 

[00:17:11] So immunoglobulin A is one of the components of our immune [00:17:15] system, and it’s a building block of the antibodies. And so you need to have enough IGA in your body in order to make the TTG IGA antibody that we see with celiac disease. And what’s interesting is that patients with celiac [00:17:30] disease have a. Risk of having something called an IGA deficiency where your body doesn’t make enough of that immunoglobulin. 

[00:17:37] And so you need to know if your patient, if that person has enough IGA to have a positive test. So it’s really [00:17:45] important to send the ttg iga and the total iga now. If someone doesn’t have enough iga, um, there are other tests that we can send. Um, and the best test is something called the de contaminated GL and peptide, I g G, [00:18:00] and that’s the, that’s a really good test to send in someone who doesn’t have enough iga, to mount a positive response. 

[00:18:07] So if they have a negative TTG level, but uh, only a positive iga, would they still be referred to gastroenter? [00:18:15] Um, 

[00:18:16] They probably would be. Yes. Um, there are, like you’re referencing, there are other tasks that can be sent, um, looking for celiac disease and some of them are better than others. You know, I, I think the bottom line is that, um, some of the [00:18:30] tasks that are out. Are not as good. Um, but if they’re positive, they’re really hard to ignore. 

[00:18:35] And we know that celiac disease doesn’t always follow the rules. And sometimes we have people with celiac disease who don’t have the typical blood test positive. You know? So if there’s [00:18:45] something that doesn’t seem right, whether that’s a lab, whether that’s an IgG based lab or something about your patient, even if the blood work comes back for celiac disease and it’s normal, if you’re worried about that. 

[00:18:56] You know, most gastroenterologists will be happy to see them [00:19:00] and to help sort it out because we know that sometimes celiac disease can, can be difficult to diagnose. 

[00:19:06] So the biopsy is something that happens once they get to the gastroenterologist, but it’s not something that all parents are comfortable with. Especially now that there’s more [00:19:15] knowledge about the European guidelines that aren’t always requiring the biopsy for diagnosis. Can you talk about how gastroenterologists evaluate if a biopsy is the right choice for a patient? 

[00:19:24] Of course, this is another conversation. We have a lot with our, with our families and our patients. [00:19:30] Um, we’re lucky that we have the European guidelines that outline a subset of patients with celiac disease who might not need the biopsies because that has given us a lot of flexibility and how we make the D.[00:19:45]  

[00:19:45] But the gold standard or what we have always thought of as sort of the gold standard or the best way to diagnose celiac diseases with biopsies. Um, and, and there’s a good reason for that. It is, it is a very clear way of knowing if somebody has celiac disease, because [00:20:00] we know the blood work isn’t right a hundred percent. 

[00:20:01] So I think there’s a lot of value to getting small bowel biopsies to really know where you’re starting. I, there is data that shows kids who have biopsy confirmed disease do better long term on the [00:20:15] diet. Um, I think that that is true in some cases. I have other patients who have not been biopsy confirmed to do beautifully on the diet. 

[00:20:22] Um, so that piece isn’t, isn’t a, a big convincing factor to me, but it is something that I mention to families. Um, [00:20:30] the other piece is that by having biopsy confirmed disease, I think it opens doors for you in the future in terms of being. 

[00:20:37] Oh. 

[00:20:38] Facilitating involvement in future clinical trial trials or having access to new medications that we [00:20:45] hope, or treatments that will, will come out to treat celiac disease. 

[00:20:47] So, you know, I, I think that, we sort of go through the reasons why biopsies are helpful, but we also discuss the serologic guidelines if somebody does fit into that. And there are some kids who a [00:21:00] biopsy is not the right choice, you know, some. Have already put their child on a gluten-free diet, and, and if you do the biopsies on a gluten-free diet, you don’t get a good answer. 

[00:21:09] Um, so if someone’s already on a gluten-free diet and feeling a lot better, it can, The idea of going back on [00:21:15] gluten for biopsies can be very difficult. Um, so that might be a, a patient that you would, you would not do the biopsies, and there’s some patients who have medical concerns that make the sedation and the procedure itself more dangerous. 

[00:21:28: we break it down and, and, and in the end it comes down to shared decision making between the patient, their family, and us, you know, and deciding what the next best step is. 

[00:21:39] So we can’t leave celiac testing without at least touching on genetics. Does a positive genetic test mean that they [00:21:45] have celiac disease or will get celiac disease? 

[00:21:48] No, it’s a great question. So there are genetic tests for other diseases where if you have this gene, you will in your lifetime develop this disease. That is not what we have currently for celiac.  

[00:21:58] So when you [00:22:00] look across the population, um, about 40% of people will have one of the HLA markers that we see with celiac disease, either D Q two or D Q eight. That’s a lot of people we know there’s a [00:22:15] lot of celiac disease out there, but it is certainly not 40% of the population. 

[00:22:18] Our estimate is it’s about 1% of the population has celiac disease. Interestingly, if you take that group of people who have one of those HLA markers, only about 4% of them develop celiac [00:22:30] disease in their lifetime. So certainly having one of those markers makes your risk higher of developing celiac disease, but it is not a slam dunk diagnosis. 

[00:22:39] And if you get a little more complicated, there are certain patterns of HLA typing that can, that can happen, [00:22:45] that give you even higher risk. So it, it, it is a helpful piece of information, but it does not seal the deal of the celiac diagnosis. 

[00:22:54] So we know that a gluten-free diet eliminating all forms of wheat, Ry barley is the only treatment for celiac [00:23:00] disease. What is the best way for a patient family to learn how to adapt to this lifelong diet? 

[00:23:07] It can be a complicated diet and we highly recommend that patients see a [00:23:15] specialized dietician who understands the gluten-free diet to really learn the nitty gritty details about where you need to be careful and where you don’t need to be careful. I think that is one of the most important steps that patients can, can do for themselves when they get the [00:23:30] diagnosis of celiac disease. 

[00:23:31] so I think, I think you need, you need some education from a specialized dietician, and then you need to just plow forward and practice and, and Perfect, perfect. Your label reading. 

[00:23:43] So let’s switch gears and talk about related [00:23:45] conditions. You touched on this a little bit in the beginning, but I wanna talk about it in more depth. We know there are a lot of other autoimmune diseases that are related to celiac. What are the most common. 

[00:23:54] there’s so many different autoimmune diseases and I, you know, we see patients with celiac disease with many other [00:24:00] things like psoriasis or uh, inflammatory bowel disease, but I think the most common are diabetes and thyroiditis. 

[00:24:06] So should someone who’s newly diagnosed with celiac disease be tested at the point of diagnosis for these coexisting conditions, or when is the right time to test, 

[00:24:14] That’s a [00:24:15] great question. So certainly. When we make the diagnosis of celiac disease, if someone is having other symptoms that point towards another disorder, like an autoimmune thyroid condition or an autoimmune skin condition or diabetes, [00:24:30] certainly we would do testing and evaluation at that point in time. 

[00:24:33] Um, and. It’s interesting. There are some of these autoimmune diseases that we can screen for with a blood test. Like it’s very easy to test someone’s thyroid function, uh, by a blood test. But some of the other, [00:24:45] um, some of the other autoimmune diseases is they’re not as easy to screen for and it’s really more of a clinical diagnosis. 

[00:24:51] But we do absolutely recommend screening patients either with blood work or with close careful clinical monitoring by [00:25:00] asking questions and, and seeing how they’re. Um, Absolutely. And we do that from the moment they’re diagnosed. And importantly, we recommend continuing to do that through the years on a gluten-free diet. 

[00:25:12] Is this something that you would test for at every annual follow up [00:25:15] visit?  

[00:25:17] Yes, depending on the family history. Otherwise, you would do it certainly within the first year of diagnosis, and then maybe every other year, depending on your level of concern. 

[00:25:29] Is there a [00:25:30] way to prevent developing a related condition or predicting if someone will get one? 

[00:25:34] Not yet, but we’re really hopeful that we’ll have the science to be able to better predict that. And certainly if we’re able to prevent it, that would be amazing and I look forward to that [00:25:45] day. But right now, no. The best thing that we can do is to address the Celiac disease. Treat the celiac disease. Heal the intestine and try to promote health in every way possible to prevent other diseases. 

[00:25:57] But it, but we don’t have a specific way [00:26:00] of, preventing autoimmune disease at this time. 

[00:26:03] Well, thank you Dr. Weir so much for all of the wisdom you have shared today. This is really going to tee up the rest of the season of our podcast so nicely as we talk more about celiac disease and all of these different [00:26:15] conditions that are related to it. So now let’s find out where Peter and his family are today. 

[00:26:21] Guest: It’s been almost seven years since Peter was diagnosed with celiac disease. Today he is a thriving fourth [00:26:30] grader, one of the tallest in his class. He’s an active member of the Celiac Kids Connection at Boston Children’s Hospital and loves attending gluten-free cooking classes. Gluten-free spaghetti with bona and tacos are his favorite foods. His [00:26:45] family has rallied together and adapted to gluten-free. vacations look a little different. They do lots of research in advance, but always find great food in the destinations they visit. In Peter’s words, I don’t mind being gluten free. It makes me [00:27:00] healthy and special.  

[00:27:01] Host: Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible, A reminder to all physicians, nurses, social workers, and dieticians to [00:27:15] claim your continuing education credits. For listening to today’s episode, please visit DME dot children’s hospital.org/raising celiac and complete the short survey attached to this. 

[00:27:26] If you like what you heard, be sure to write a review, like and [00:27:30] subscribe wherever you get your podcasts. For more information, check us out on social at at Boston Children’s Celiac, on TikTok, at Children’s Celiac, on Twitter, or at Celiac Kids’ Connection on Instagram. Join us next month when we discuss the relationship between celiac disease [00:27:45] and inflammatory bowel Disease with Dr. 

[00:27:47] Ines Pinto Sanchez from McMaster University in Hamilton Health Sciences. Have a great month. 

1/19 Episode 2: The Intersection of Celiac Disease and Inflammatory Bowel Disease

Expert Guest: Dr. Maria Ines Pinto-Sanchez, McMaster University Hamilton Health Sciences

Learning objectives:
1.) Describe current research on the link between celiac disease and inflammatory bowel disease
2.) Explain appropriate testing procedures for a celiac patient with ongoing symptoms
3.) Identify treatment options for patients with a dual diagnosis of celiac and inflammatory bowel disease

To claim credit, please register for an account on our course website and complete a podcast survey here.

[00:00:00] 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.

2/16 Episode 3: What Came First Celiac, or Type 1 Diabetes?

Expert Guest: Dr. Katherine Garvey and Sharon Weston MS, RD, LDN, Boston Children’s Hospital

Learning objectives:
1.) Describe the current protocols for screening for celiac disease in patients with type 1 diabetes
2.) Identify common challenges of the gluten-free diet for patients with a dual diagnosis of celiac disease and type 1 diabetes
3.) Explain common school lunch foods that are suitable for a patient with celiac disease and type 1 diabetes

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Made possible by the generous support of the Global Autoimmune Institute.

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