Episode 10: The Burden of Living with Crohn’s and Celiac Disease 

Vanessa Weisbrod:

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

Speaker 2:

Jay grew up in a small town about 45 minutes outside of Pennsylvania. He loved acting from the moment he was old enough to know what it was. As a young child, he began auditioning for community theater, and quickly captured roles in Oliver, Peter Pan, The Music Man, Mary Poppins, and The King and I. He took voice and dance lessons and was determined to grow up to become a successful actor on Broadway. Jay was always extremely thin and lanky. His parents always attributed it to his extremely active childhood. He never stopped moving. If he wasn’t in dance class, he was doing jazz moves or tap dancing around the house. He ate like a bird, but never really seemed to be hungry. Jay was genuinely good and a happy kid, and was loved by all of his friends and teachers. Life was good for Jay until he was a junior in high school and started getting extremely smelly gas.

He always felt like he had a lot of gas. But the first time he noticed himself pass what he described as the foulest smelling gas I’ve ever smelled was changing in the boys’ dressing room before a dress rehearsal for the fall musical. He had eaten his school’s Chinese food for lunch and thought perhaps he was coming down with food poisoning. He had stomach cramps and gassed the entire afternoon and evening, and left rehearsal embarrassed and upset with his digestive track. He took Pepto-Bismol before bed and hoped he would wake up feeling better in the morning.

Vanessa Weisbrod:

Though passing gas is entirely normal and an indicator of good digestive health, excessive flatulence can significantly impact a person’s social life, and is a common reason for referrals to gastroenterology clinics. It’s also a common symptom of celiac disease and many other gastrointestinal issues.

Speaker 2:

Jay did not feel better the next morning. The gas persisted, and so did his stomach cramps. His mom took him to the doctor who agreed that he may have a stomach bug. Jay went on for several weeks taking over the counter gas and stomach cramp medications, but nothing really seemed to help. He started having diarrhea multiple times a day, so his mom made an appointment with a local gastroenterologist. At the gastroenterologist appointment, they asked Jay lots of questions about the food he ate, his medical history, as well as his families, ran some blood work, and asked him to return with a stool sample. Begrudgingly, he collected his poop and returned the sample to the lab. About a week later, the gastroenterologist called Jay’s mom and told her that his tissue transglutaminase antibody test was positive and that Jay was severely iron deficient. Jay needed to come in for an endoscopy to confirm a diagnosis of celiac disease.

Jay had the endoscopy two weeks later, and it showed total villous atrophy. He definitely had celiac disease. While Jay was upset with the news that he would need to change his diet, his parents convinced him that he was lucky to have gotten a very quick diagnosis and that it was a disease they could manage.

Vanessa Weisbrod:

There is an average delay of six to 10 years for an accurate celiac disease diagnosis in the adult population. Without a timely diagnosis, celiac can lead to intestinal cancers, type one diabetes, osteoporosis, thyroid disease, anemia, infertility and miscarriage, epilepsy and more. Treatment with a strict lifelong gluten-free diet is required to manage this autoimmune disease. Patients should regularly follow up with their gastroenterologist, even if they’re not experiencing symptoms, to make sure that their disease remains under control.

Speaker 2:

Jay did well on the gluten-free diet and he was relieved that within about a month his smelly gas and diarrhea were gone. He started gaining some weight and grew several inches. By the end of high school, he was accepted early decision into the NYU Tisch School for Performing Arts and couldn’t wait to get to college to work towards his dream of becoming a Broadway performer. He was also excited that New York City was home to many well-known, dedicated gluten-free bakeries and restaurants. He spent his summer before college performing in a summer theater group in Cape Cod, Massachusetts, where he not only fell more in love with theater, but also found some of the most delicious gluten-free food he had ever eaten. We’re talking fried calamari, fish and chips, and even real New England clam chatter. He had the best summer of his life. Jay returned home to Pennsylvania in early August to get ready to start his new life in New York City. But the week he returned home, he came down with a nasty stomach bug and could hardly leave the bathroom for days.

He was severely fatigued and couldn’t seem to shake the virus. He left for his college move-in still not feeling great, but he pushed through because he was so looking forward to this next stage of life. Despite now living in a city full of gluten-free food options and attending a school with copious amounts of gluten-free food in the dining halls, Jay had a rough first semester of school. He had strange looking stools almost every day that he described to his mom as looking and smelling like a pile of tar. His body hurt all over and he had a rash on the front of his shins that didn’t budge with any over the counter creams. He knew he needed to see a doctor but wasn’t quite sure where to begin. He decided to start at his campus health center. He was diagnosed with eczema and told that he needed to improve his dietary intake and make sure he wasn’t inadvertently being exposed to gluten. He was referred to a campus dietician who helped create a gluten-free meal plan that was rich in protein and whole grains.

He started using a topical steroid cream, which slightly helped the rash, but it didn’t disappear.

Vanessa Weisbrod:

Crohn’s disease is a form of inflammatory bowel disease in which one or more parts of the intestinal tracts become inflamed. Crohn’s often affects the small intestine, but can affect any part of that digestive tract, including the mouth, esophagus, stomach, duodenum, appendix, colon, or anus. Though Crohn’s is a chronic disease with no current cure, it is a condition that is highly manageable with the right treatment plan. Medication and lifestyle modifications can minimize or completely eliminate the symptoms.

Speaker 2:

Jay made it through his freshman year of college and returned to Cape Cod for another summer season of musical theater. But shortly into the first production, he started feeling really bad. He made a trip to the emergency room where he was nauseous nonstop for days and started having severe cramping in the lower right area of his abdomen. He was worried he might have appendicitis. His roommate thought he might have a kidney stone because he was in so much pain. His appendix looked okay and he didn’t have any stones on the CT scan, but the emergency room doctor recommended he get in to see a gastroenterologist sooner rather than later. He had noticed some changes that may indicate inflammatory bowel disease. Jay’s understood he had to take his place in the summer show, and Jay’s mom flew up to accompany him to see a gastroenterologist in Boston. The gastroenterologist appointment went well, and Jay had more blood tests, a stool test, and was scheduled for an endoscopy and colonoscopy procedures.

One week later, he had the answer. He had Crohn’s disease. The good news, his celiac disease was well controlled, and his tissue transglutaminase antibody levels were now non-detectable.

Vanessa Weisbrod:

Studies have largely debated the extent of the connection between Crohn’s disease and celiac disease, but all conclude that Crohn’s is more common in those with celiac than in the general population. Overlapping symptoms include abdominal pain, diarrhea, iron deficiency, anemia, and short stature. With this increased prevalence and many similar symptoms, some researchers suggest that patients over the age of 40 who are anemic or who have chronic diarrhea and are diagnosed with celiac disease also have a colonoscopy to test for inflammatory bowel diseases.

Speaker 2:

Life for Jay did not get easier right away. His stomach hurt all the time, and the medications he was taking were not miracle drugs. He felt bloated, hungry, and achy from taking high doses of prednisone. He had good days, and sometimes good weeks and months, but the flareups seemed to get worse every time. He started getting Remicade infusions, which helped his symptoms, but Jay felt stressed, depressed, and anxious all the time. He made the very difficult decision to move from the performance-based musical theater program to the dramatic writing program where he wouldn’t have to worry about needing a bathroom in the middle of a scene. He pulled back socially and felt like the once vivacious version of himself was lost forever.

Vanessa Weisbrod:

A diagnosis of celiac disease or inflammatory bowel disease alone can be life altering and a difficult adjustment for children, adolescents,, and their families diagnosed together, it’s even more challenging. Children and adolescents with a chronic illness are 25% more likely to experience anxiety and depression than others in this demographic. So how can a medical team help young adults living with both conditions have a positive quality of life? How are the treatments for Crohn’s different than the treatments for celiac disease with a gluten-free diet? Do Crohn’s symptoms come and go, or once treated, stay away? What do researchers know about the genetics of these disease aids and the likelihood of passing them on to future children? We’ll discuss this and more on today’s episode of Raising Celiac.

Today, we talk about Celiac and Crohn’s disease with Dr. Scott Snapper from Boston Children’s Hospital. Dr. Snapper is the chief of the division of gastroenterology, hepatology, and nutrition, and the director of the Inflammatory Bowel Disease Center. Dr. Snapper holds the Wolpow family chair and has become the director of IBD research within the gastroenterology division at Brigham Women’s Hospital where he maintains a joint clinical appointment. Additionally, Dr. Snapper is a professor of medicine at Harvard Medical School. Welcome Dr. Snapper to raising celiac.

Dr. Scott Snapper:

It is so great to be here. Thank you for the invitation.

Vanessa Weisbrod:

So let’s start by talking about Crohn’s disease alone. Our listeners are very familiar with celiac, but not quite as much with Crohn’s. Tell us about the common symptoms and what would lead you to test someone for it.

Dr. Scott Snapper:

So the common symptoms of Crohn’s are typically abdominal discomfort, sometimes diarrhea, sometimes nausea and vomiting. These symptoms are not that dissimilar to patients with celiac disease as well, as your viewers know. Those are really the main symptoms. Sometimes it can be weight loss and fatigue, but those are the main symptoms. And Crohn’s really can affect any person of any age, from infancy to the late 80s and even 90s where their diagnoses being made. But most diagnoses are made in really the mid-teens and early 20s.

Vanessa Weisbrod:

So what is the usual process for getting to a Crohn’s diagnosis?

Dr. Scott Snapper:

So typically what ends up happening is somebody who presents with those symptoms that I said, frequent bowel movements, sometimes blood in their stool or abdominal pain ends up being referred to a gastroenterologist. And then a gastroenterologist, typically when they hear that, will most often end up doing either an upper endoscopy and a colonoscopy. And Crohn’s can affect, and I didn’t say this thoroughly, can affect any part of the intestine, from really the mouth all the way down to the anus. Although most people who have Crohn’s have involvement of the latter part of their small intestine called their ileum and the beginning part of their colon. And so to make the diagnosis, most of the time, it is done endoscopically by colonoscopy, and people see inflammation in the intestine. And it really looks like the equivalent of a rash on the skin, except it’s a rash that is in the intestine. And again, it can be either the colon or the small intestine.

And sometimes, because I mentioned this as well, people get an upper endoscopy. And they get an upper endoscopy because, well, first of all, we don’t know what the diagnosis is when we are often going in doing it, but people with Crohn’s can have inflammation in their esophagus, stomach, or in the beginning part of their small intestine called the duodenum.

Vanessa Weisbrod:

So we know with celiac disease that you have to be eating gluten to trigger their disease. Is there a trigger for Crohn’s?

Dr. Scott Snapper:

That is a very simple and very complicated question all at the same time. And so there’s clearly not the absolute known trigger like gluten is for celiac disease. The pathogenesis of Crohn’s sort of sits in this middle of a Venn diagram of people that have genetic predisposition, altered immune system, and diet all together. Risks in either of these categories can end up leading to a Crohn’s diagnosis, but there’s not a very clearly identified trigger. There are some groups, including our own, that have looked at certain viruses that can trigger Crohn’s. There are people that have looked at certain bacterial infections that can trigger Crohn’s, and other risk factors like not breastfeeding as an example, or early use of antibiotics in childhood. But it’s really one of the major unknowns in inflammatory bowel disease, which is what is the trigger.

Vanessa Weisbrod:

So if a patient comes to you and has diarrhea and abdominal pain, how would you decide which conditions to test them for first?

Dr. Scott Snapper:

Yeah, that’s a simple and complicated question all at the same time. The most common reason a gastroenterologist sees a patient is they come in and they’re feeling bloated, and they have alternating diarrhea and constipation. And that’s sort of the most common. And in that case, sometimes one tries dietary alterations and sees potentially if they have an allergy to a particular diet. Actually, testing for celiac disease in that setting is exceedingly common, because as you guys all know, celiac disease affects more than 1% of the population. So simple blood tests, very simple, not costly blood tests can make that diagnosis. So after trying to figure out is this a short-term or a long-term issue, if it’s a short-term issue, sometimes we just follow patients and they may just have a viral gastroenteritis, or patients might’ve eaten something and had a bad reaction to it. But if somebody has had longstanding symptoms, really not days to weeks, but weeks, months, or longer, then we typically do more detailed diagnostic testing.

If somebody has had six months of weight loss, just giving this as an example, but six months of weight loss with diarrhea, often in that kind of circumstance, we will move to an endoscopic evaluation early. And there’s certain other associations with Crohn’s that I didn’t really mention initially, which some patients with Crohn’s and really severe Crohn’s can have blockages of the intestine, or they can have what are known as fistula or tracks that go from one part of the intestine to another part of the intestine. And those kind of things can get picked up by radiologic exams like CAT scans or MRIs. If a ultrasound or a CAT scan or an MRI was done even by a primary care doctor, if they see a signs of fistula or these blockages, they’re called stenosis, or an abscess, we immediately would evaluate for Crohn’s.

There’s also sometimes lab testing that is done that can suggest inflammation in general. And those are lab tests that are called C-reactive protein or an erythrocyte sedimentation rate. And there’s another stool test that can be found, which is called fecal calprotectin, or fecal lactoferrin. And if those are elevated, often, we move to endoscopic evaluation.

Vanessa Weisbrod:

Great. So there’s lots of exciting research happening right now looking at predicting celiac disease. We’re obviously not there yet, but perhaps in the future. What about with Crohn’s? Can you predict if someone will get it?

Dr. Scott Snapper:

The most significant risk factor for developing Crohn’s or ulcerative colitis, which is another type of inflammatory bowel disease related to Crohn’s, the greatest predictor is actually having a first degree relative, a sibling or a parent that has Crohn’s disease. That’s still the greatest predictor. There are rare genetic mutations that can be our predictors of Crohn’s. And now just like in celiac disease, there’s lots of studies that are trying to come up with blood tests that might subsequently predict that someone would develop Crohn’s. And there’s certain bacterial changes that live in an are intestine. They’re called the microbiome. So there are changes in the microbiome that some have found predict subsequent Crohn’s, and there’s certain lab tests that some people have found predict subsequent Crohn’s. But in reality, those tests are not very, very good. And so unless someone has an exceptionally strong family history and symptoms, or they have a rare genetic diagnoses, we don’t do colonoscopic testing upfront looking for it.

Vanessa Weisbrod:

So a topic of recent interest for researchers has been the genetics involved with IBD and celiac disease. Research has found common genetic differences between celiac and Crohn’s. Can you tell us what’s known about the link between them?

Dr. Scott Snapper:

Yeah. As is well known to your audience, there are lots of immune mediated conditions that are associated with celiac disease, and whether that’s thyroiditis, and there’s microscopic colitis and type one diabetes, just to name a few, it is becoming clearer that patients with celiac disease do have an increased risk of getting Crohn’s, and perhaps to a little less of extent, that patients with Crohn’s disease have an increased risk of getting celiac disease. And there’ve been lots of small studies, and then there have been larger studies that have put together all these small studies that are called meta-analysis, and they have suggested in both ways, that if you have celiac, there’s an increased risk of Crohn’s.. And if you have Crohn’s, there’s an increased risk of getting celiac disease. And there are certain genetic abnormalities that are linked with both of them, so with both celiac disease, as well as Crohn’s disease. Although those genetic links are pretty common, so just having those mutations that are associated with that risk, that alone would not lead someone to test for either celiac disease or Crohn’s disease.

But it really is clear now that if you have one or the other, there is an increased risk. And your listeners may be very curious to say, “Well, if I have celiac disease, should I get tested for Crohn’s?” Or, “If I have Crohn’s disease, should I be tested for celiac disease? And I think today still, if you have celiac disease and you’re well controlled on a gluten-free diet, most people would not suggest a priority that you get tested by colonoscopy for Crohn’s disease, although many of your celiac patients and our celiac patients may have already had a colonoscopy as part of their evaluation that led to their celiac diagnosis. Though many may not because they just got an upper endoscopy. So if you have celiac disease but don’t have other symptoms and are well controlled, at this time, most people would not be testing for Crohn’s, although there may be lots of research interest in testing for some of those biomarkers, and there’s certain immune testing that might interesting to do. But really, certainly most people with celiac disease well controlled don’t need to be ruled out for Crohn’s.

Now, on the other side, those who have Crohn’s, is it worth being tested for celiac disease? And that’s an interesting one because actually, there is an increased risk either way. If you have celiac disease, there’s a greater risk than Crohn’s compared to the healthy population. And that’s even greater than the risk if you have Crohn’s, of having celiac disease. But as you know, and your listeners know, to test for celiac disease from a blood test is very easy, and celiac disease is very, very common. Most patients, or I would say many, many, maybe most is a little too strong, many patients that have been diagnosed with Crohn’s probably have been tested for celiac disease already. But it is not unreasonable for testing. It’s not unreasonable. And there’s not real clear guidelines on this, Vanessa at this point. Because celiac is so common, and because there is an increased risk, the cost of that blood test is small compared to actually making a diagnosis of having celiac disease.

Vanessa Weisbrod:

Absolutely. For our patient, Jay, is it possible that he had Crohn’s at the time of his celiac diagnosis and it wasn’t identified, or is it possible the Crohn’s developed later?

Dr. Scott Snapper:

There’s no doubt that both are possible. There’ve been some studies where people who have joined the military have been followed… They’re healthy when they join the military, and they’ve been followed for a decade let’s say, and blood gets tested from those patients over time. And some of those patients end up burning out. They end up having Crohn’s disease or celiac disease. What’s been interesting in the inflammatory bowel disease literature of these studies on the military cohort, it’s clear that even seven years before the diagnosis of Crohn’s, there are already alterations that suggest that an individual will get symptomatic Crohn’s later on. I say this is a long-winded approach to say that actually, it’s usually before somebody becomes symptomatic that Crohn’s has been brewing for a long time. But it is certainly possible that in our patient with celiac disease that there was an additional trigger that occurred after the celiac diagnosis, and I mentioned some of those, and you developed Crohn’s afterwards.

Vanessa Weisbrod:

So does this military data mean that we might have been able to predict these people getting Crohn’s?

Dr. Scott Snapper:

I think that there’s still lots of work being done in that regard. And in the military data, what people have found is that there are certain associations that if you look seven years before the diagnosis, you’re more likely to get Crohn’s if you have those alterations. But not everybody who has those alterations gets Crohn’s. So there’s still lots more studies to come from that.

Vanessa Weisbrod:

So it’s interesting for our patient, Jay, that the physician at the campus health center first thought to investigate if his symptoms were being caused by ongoing gluten exposure. How do you decide if a patient with celiac is inadvertently eating gluten or if something else is causing their symptoms?

Dr. Scott Snapper:

Yeah, I have to say, although I’m a gastroenterologist and an immunologist, my real deep expertise is more on the IBD side than on the celiac side. However, having said that, the first thing in any celiac patient who is having increased symptoms, the first thing one looks for is inadvertent gluten exposure. And that’s just sort of baseline. We do that because it’s really been shown that that is the most likely reason why someone is symptomatic. So that is completely reasonable. And it’s really first principles, in all honesty. And then after really ruling out, to the best that one can, that one is having inadvertent gluten exposure, one then moves on to other testing, stool testing, blood testing, and then eventually colonoscopy or endoscopy.

Vanessa Weisbrod:

So the only current treatment for celiac is a strict lifelong gluten-free diet. Can you tell our listeners about the treatment options for Crohn’s?

Dr. Scott Snapper:

So with Crohn’s, unfortunately there is no cure yet. Similar to celiac disease, there’s no cure, although at least most patients with celiac disease go into sustained remission being on a gluten-free diet. With Crohn’s, there are a number of medications that are now available for children and young adults and adults with Crohn’s disease. There are many. They’re oral medications, as well as injectable medications, some injectable at home, some in IV infusions in the hospital. And there are many, many. And a large number of patients, thankfully, with Crohn’s can go into sustained remission after being on these medicines. Unfortunately, there are a significant number that are not able to, and that’s why it’s so critical. We’re coming up with new medications. And many of us around the world are trying to come up with new medicines and cures for Crohn’s disease.

Vanessa Weisbrod:

Do the treatments options change with the dual diagnosis of celiac disease?

Dr. Scott Snapper:

Not really. Not really. I think that… Let me give one possible example. So what I didn’t touch on is dietary therapy. And so there’s a great interest, and the incidents in Crohn’s has been increasing over a long period of time, a long period meaning in the last 50 to 100 years. And the greatest changes have been in diet. So there’s been this major thought about diet being a trigger in some way for Crohn’s disease. There are certain diets that have been shown to be effective in inducing remission in subsets of patients with Crohn’s disease, even as good as some of our medicines in inducing remission. And so some of those diets have been Mediterranean diets, specific carbohydrate diets, caveman diets, and there are patients who’ve been on gluten-free diets. I think that with someone that actually has Crohn’s and then has a subsequent diagnosis of celiac disease, I would be much more inclined to try a dietary therapy or dietary approach.

And there’s some. Not all of the diets that have been associated with actually some anti-inflammatory effects for Crohn’s avoid gluten, but some do. And if I had the diagnosis of Crohn’s, and then develop celiac, I’d be much more inclined to try a dietary therapy. Now, the other way around is a bit more complicated because you need to be on a dietary therapy for Crohn’s disease. And so obviously, one would need to continue gluten restriction. I’d be less inclined to try a new dietary therapy and would be more inclined to try one of the other medications.

Vanessa Weisbrod:

Right, because you’d be making an already very restrictive diet, perhaps more restrictive.

Dr. Scott Snapper:

Exactly. Exactly.

Vanessa Weisbrod:

So one of the things I found interesting when listening to Jay’s story was that he knew that he needed to see a doctor, but he kept putting it off. When should someone with abdominal pain and diarrhea call their doctor versus just waiting to see if it gets better?

Dr. Scott Snapper:

That’s a great question. And I would say that if someone has recently traveled or is traveling, or has recently had a dietary change, somebody with acute onset of abdominal discomfort and diarrhea, as I said earlier, as long as it’s not too severe, I think watching it for a few days, even for a week or so makes sense. And there are certain triggers that make us concerned. And those triggers are blood in the stool. That triggers wanting to talk with a doctor. And I would say weight loss is also a trigger. And so whenever somebody has weight loss in association with abdominal pain and diarrhea, they should see their primary care doctor, who may or may not then refer them to a gastroenterologist. So it’s really length of time, severity, and even symptoms like nausea and vomiting. Of course, unfortunately, we all know you can get a virus and have nausea and vomiting, but that’s acute self-limited. Within days, goes away. It’s when things continue that really one needs to get evaluated.

Vanessa Weisbrod:

So there is still very little research on the link between celiac and Crohn’s disease. What do you think that we need to learn next to better understand the connection or lack of one?

Dr. Scott Snapper:

Yeah. I think there is, by the way. As the data and the large meta-analysis have suggested, I think there is a connection. I think there’s still a lot of knowledge that is needed to understand how genetics connects to alterations in the environment to lead to dysregulation of the immune system in the intestine. And as we learn more about that, how diet, how environmental exposures alter our immune systems in the gut, we’ll learn more about celiac disease, we’ll learn more about Crohn’s disease. And certainly by learning more about both of those, we’ll learn more about them together. I think the other thing is having prospective, which means going forward studies at looking at people with Crohn’s prospectively, or separately, those with celiac disease, following them prospectively and studying them, looking for those who develop either Crohn’s or develop celiac disease, like that study in the military, which starts with people who have neither. I shouldn’t say that. I don’t know actually if you can be in the military and have celiac disease, I think probably you can. I don’t know the answer to that.

Vanessa Weisbrod:

It’s a challenge. That’s a whole nother podcast episode that requires defining food.

Dr. Scott Snapper:

But really, having those prospective studies looking at either of them and figuring out who develops either Crohn’s or Celiac disease in those separate situations will go a long way for furthering our knowledge.

Vanessa Weisbrod:

Thank you so much, Dr. Snapper, for all of this wonderful information. We’re going to take a quick break. And when we come back, we’ll have Jahna Goldmore, a social worker at Boston Children’s Hospital, here to talk about strategies for managing stress and anxiety around living with Celiac and Crohn’s, as well as a new innovative health and wellness program that is helping these patients at Boston Children’s Hospital.

Speaker 4:

We’re going to take a quick break to hear from our podcast sponsor, the Global Autoimmune Institute.

Speaker 5:

The Global Autoimmune Institute works to empower solutions in the diagnosis and treatment of autoimmune diseases through research, education, and awareness, while supporting multidisciplinary approaches to health, we are thrilled to support the production of this educational podcast.

Vanessa Weisbrod:

Welcome back, and welcome Jahna to the podcast. So when I was interviewing Jay about his story and he described feeling anxious, stressed, and depressed about his situation with the two conditions, I knew we needed your wisdom on how patients can deal with the hardships and emotions of these diseases. So what is your approach with patient families when there are two diseases that they have to deal with?

Jahna Goldmore:

Thanks so much, Vanessa. That’s a really great question. I think that a piece of work with any chronic illness is really… We talk about this idea of adjustment to chronic illness. But I think to me, the first part there is really acknowledgement that this is a huge shift in their life, and really taking time to pause and experience the emotions that go with that. Because I think when I’ve seen patients try to move through without kind of an acknowledgement, that really makes it a really difficult adjustment. We’re trying to acknowledge kind of all the feelings that go with this, not just the ones about moving forward and being strong, but also about frustration, disappointment, sadness that go with that, because I think the expression is the only way forward is through. So to me, that’s kind of the first step. And then I think there’s obviously with any chronic illness, and particularly having a diagnosis of two, it’s the sense of unpredictability.

I was thinking a lot about Celiac and IBD and kind of the differences in unpredictability there. And with Celiac, it’s like you can control things through management of a diet. But in the environment sometimes there’s unpredictability to what might pop up in choices, so that you can do as much as you can, but sometimes you can’t predict the environment. And with IBD, sometimes it’s internally, or what is your response going to be to medication? What symptoms is your body going to have that, even though you do everything that you are planning to do, take medication, follow the right nutrition plan for yourself, that still internally, there’s unpredictability. So I think for both, there’s a little bit of each. But my focus with patients tends to be acknowledging that unpredictability is a huge source of anxiety. And that’s the starting point, but really having the focus beyond what is in their control. And in a healthy and balanced way, what are the pieces they can focus on that they have control over?

And we call that kind of like their self-management. So that would mean nutrition and diet, which we obviously know is huge in celiac, but also in IBD. Stress management and what’s our relationship with the emotions that go along with this, really, that’s a piece of the puzzle. And then also, what are their supports? What are the things they have in place, which I know we’re going to talk about through our conversation. But I think focusing on what are these small pieces that are in their control to help them feel that, even though there’s some unpredictability here, what are the things that they can predict in their own self-management and their own treatment plan that help them feel they have a sense of autonomy? Because otherwise, we can go down a rabbit hole of worry. And I think that’s easy for anyone to do, but particularly with one diagnosis, and then another. So I think just peeling it back to those basics.

Vanessa Weisbrod:

Absolutely. So it’s so hard to be told that despite your constant vigilance with the treatment for one disease, that you now have another. How do you encourage someone to continue sticking to the gluten-free diet when it hasn’t seemed to prevent development of another condition?

Jahna Goldmore:

Yeah, definitely. That’s a great question too. And what I was thinking about too with your first question is I always think about focusing on what has worked in the past. And I think that’s kind of a piece to kind of jump forward into this question. I think that supporting patients to feel invested in their care, even when it feels frustrating at times, and really focusing on long-term goals, so I think working backwards. So sometimes when we meet with patients, it’s trying to think about what are the things they really want to do? What is the kind of quality of life they want to have? And then kind of asking questions and doing… We say motivational interviewing, but basically what are the steps that they need to take to do that? And really connecting the dots on the day-to-day behaviors and sticking to a gluten-free diet and making certain health choices, and kind of how those connect to long-term goals. Because that can be really difficult for any and all of us, but specifically when you have these daily choices that can majorly impact how you feel.

So I think making those connections to long-term goals and short-term behaviors and trying to help people really feel invested. So even for young school-aged kids and teens, having them have a conversation with their providers and really have them have engagement in their treatment plan, not just parents telling them kind of what to do, but really having them have choice, right? Because there are different choices that kids with this diagnosis, celiac or IBD have to make to stay healthy. So really having them within those have control and choice.

Vanessa Weisbrod:

Absolutely. So Jay was in college when he received the dual diagnosis, when there are many emotions flowing. He was living away from home and dealing with multiple medical conditions on his own. Anyone would be stressed in that situation. How do you support patients in college with navigating all that comes with these diseases?

Jahna Goldmore:

Yeah. So I agree with you. I think anyone would be so stressed in this situation. I think it’s kind of an adjustment to college, compounded by an adjustment to a chronic illness, and then on top of that, managing a chronic illness that we know he was managing. So it’s like adjustment times three. I think that really kind of stressing that the foundation here is health and mental health, and that that’s a starting point for everything else. And it’s kind like the expression of putting your oxygen mask on first. But really for kids that especially they’re at college, they’ve worked so hard, they want to achieve and do well, but kind of making the base point their own health and mental health and that things build from there. I think I’ve seen kids jump in the other way, the reverse direction. And it works for the short term, but in the long term, it’s sometimes not sustainable.

So for them, the specifics, I would say really identifying supports that are already existing. We say natural supports, but identifying their community. If it’s friends they’ve already made at school, but also family and friends from home, and really getting these touch points in place, and kind of having open conversations about what’s helpful for them for support, which is so hard. But I think having proactive conversations. Then when you really need it, that support is there. And then I think identifying new supports at college, which can be pretty scary for… It’s a new place you want to do it on your own. But schools really have systems in place, which we’ll talk more about, that are able to support kids, counseling centers. But also just accessibility and disability services are able to really sit down with kids and see what’s a game plan for the semester based on what you have going on medically.

And they want to work for the students as much as students want support, but sometimes it’s hard to have that activation energy to ask for support. So to me, I think it’s really identifying what you have that works, and then in this new environment, what’s going to be helpful.

Vanessa Weisbrod:

So Jay ultimately had to change his major because of his medical needs. This was clearly a very challenging choice for him. How can college students advocate for themselves to get the right support in the college setting?

Jahna Goldmore:

Yeah, like we had mentioned a little bit, but I want to get into this disability and accessibility services. So at any college, they have staff on site that are really designed to support with exactly this. So if you had a 504 plan for medical need in high school or prior, or you didn’t, it doesn’t matter, college could be a new starting point, but this office also helps with 504 and past IEP accommodations. And they will really sit down and through what protections could be available. And I think what I always tell kids, it’s like it’s totally okay to change course making choices that are going to work for you, but certainly the ability to be proactive and kind of have these conversations with the team there. Some of the accommodations we see for celiac or IBD is not calculating a term grade until you have a chance to make up work.

So if you had an exposure or a flare, that you also have time to really do what you need to do to have that reflect your hard work. No medical appointments and everything wouldn’t be counted against you. And then they might have stopped test time for different symptoms and access to what they need in the classroom or in a formal testing setting, so if symptoms come up, that that is supported and they’re not penalized for that. So basically, you’re not penalized for having to manage a medical condition. And I think that there’s staff there that will meet with you to set up a plan and inform professors, not even of the specifics, but more just to let them know so that someone like Jay can have those conversations with teachers as needed. So it’s almost like putting an insurance plan in place. And hopefully you won’t need it, but if you do, which does happen, which in Jay’s case, he did need to have some conversations about this, that he’s able to, and it’s protected, and you have a team that has your back.

You’re not just advocating on your own. You really have that backing of a formal plan with the school. And we think of it, there’s both academic accommodations, and then also housing. So we think a lot about that with kids. If there’s a setup that would help them to feel more comfortable, to get more rest, to be exposed to less… For IBD kids, some of them are on immunosuppressive medication. To be on that medication and try to limit exposure to kind of a bathroom with many, many, many students and share it with less, or if anyone’s having symptoms, to have a bathroom accessible. So thinking about the housing and the academic as parallel, because obviously they feed off each other in terms of how kids are adjusting to college.

Vanessa Weisbrod:

How is the medical team involved in the college advocacy process?

Jahna Goldmore:

Sure. Yeah. So we really provide documentation for students so that they can start this process. So when you call to meet accessibility services, the first thing they’re going to ask you is, “Do you have a letter from your medical team, or do you have a form completed?” So really our role is to give context for the diagnosis and what we think might be helpful, kind any updates on that. And we can also sit down with students, and kind of because we’ve worked with many college students, really help them to understand what their options are. So maybe they go into that conversation with the school knowing what questions to ask. So we’ll have a problem solving and brainstorming conversation beforehand to kind of educate them on what they need to look for and what they should be asking for. So that’s how we’re involved, and then we can get involved along the line if we need to.

Vanessa Weisbrod:

So let’s talk about the social elements. How can college students talk to their friends about their diseases and find support?

Jahna Goldmore:

Yeah. So a lot of kids going into college may have already been diagnosed and may have already had this experience of having to share with friends, teachers, coaches at school. So often for that population, we’re thinking through what worked for you. But then going into this new situation, I think for anyone, whether they’re newly diagnosed or they’ve had the diagnosis, kind of identifying what’s your intention in sharing? So how will you feel after you share? So sometimes I’ll kind of walk kids through what’s the intention? Do you think this will take pressure off you if someone knows, and so you won’t be worried about what if something comes up? So is the intention to decrease your anxiety? Even though it’s a hard first step to take, what will be the long-term outcome of sharing this with someone, whether it’s a roommate or a professor or coach?

So I think having them really think about why they’re sharing and what the purpose is, and then kind of thinking through how can I actually reach that intention and maybe share the amount of information I’m comfortable sharing. And then kind of we think through their circle. It’s like you have an inner circle of close friends and people that you might share more with, and then kind of friends or classmates, and maybe some teachers, professors, and then kind of the outer circle, people you may not have as many interactions with. So I think there’s levels of sharing that kids are comfortable with. So we’ll kind of walk through a script of… With some people I might be sharing, I have an autoimmune disease or I have a medical plan. And with some people, I might really be getting more into, “Here’s what comes up for me, and here’s when I might need support.”

So having them kind of be able to tease out why, and then what they want to share and what they’re comfortable with, and practice it a little bit too. So it’s great to practice with someone you’ve already shared with, or with a counselor or family member to kind of think that through. Yeah, and I think you can always, I think, figure out your own timeline for it. So there’s no right or wrong way to do it, but that’s a lot of what we’ll do to problem solve. And I think it’s a great thing to think through because sometimes it does shift things in terms of comfort level adjusting to school.

Vanessa Weisbrod:

For sure. So what are some strategies for reducing stress for patients who are feeling overwhelmed by their diagnosis?

Jahna Goldmore:

Yeah, that’s a lot of our focus, and probably one of the most common referrals we get in conversations that we have with any high school to college transition. So I think about it twofold. It’s like there’s internal kind of things that we can do that we can do. I can do this by myself to really manage my stress, and then kind of environmental things. I can set this up, or I can connect with someone else. That might be a great way to mitigate stress in the longterm. So I think some of the external things I can start with that we talked about. So especially with adjusting to school, really identifying your supports. And then if creating a health or medical plan with accessibility services takes a little bit of that pressure off, having to do everything at the deadline. Or if something comes up, worrying about, will I finish this on time? Will I be able to have my grade reflect my effort in the class? I think counseling services too, obviously is a great way.

If someone feels like they need that extra support, it’s just helpful to talk things out. And I think also setting up the dorm in a way, that is actually a huge factor for kids. I think I have some kids that are so worried about going to school and having symptoms and having to share a bathroom, that just taking that off the table and having a bathroom shared by less students, or they’re in a suite where it’s only a couple students, that actually changes the game for them, and they feel a relief about going away from home. So those, I think, are the environmental things. But internally, what can we do? Of course, what coping skills have worked? So much benefit in terms of exercise and stress reduction. We’re focusing a lot within our wellness program around yoga, meditation. Even if you’re not going to go meditate for half an hour, being able to do diaphragmatic breathing for one to two minutes can really reset your nervous system and help you kind of get to that rest and digest state.

So I think also creating good routines for college students, especially around sleep, sleep, and then all the kind of daily routines that impact their health, so nutrition, self-care, and obviously exercise and everything. So really thinking about good routines and sleep hygiene, I think, can all impact how you experience stress and emotions during the day and how you handle those. So those are just a couple, but yeah, hopefully that’s kind of helpful.

Vanessa Weisbrod:

So you have been very involved in the IBD summer camps. Can you tell our listeners about these programs and how they help young people with IBD?

Jahna Goldmore:

Yeah, absolutely. So these camps are run by the Crohn’s and Colitis Foundation. They are offered to anywhere from, I think, seven to 18, or going into senior year of high school. They’re kind of offered regionally, so this is an awesome way for kids to meet other kids with a diagnosis of Crohn’s or colitis and basically have a summer camp experience for five or six days at an awesome kind of camp location where they can do swimming and arts and crafts and sports and all the summer camp stuff, ropes course, archery, all of that. But basically the common thread here is that everyone has this diagnosis. So at breakfast, lunch and dinner, people take medications. There’s an opportunity to ask the medical team doctor, nurse, social worker kind of question. So we really help support kids to engage within their care. But I would say that’s an open conversation. But otherwise, it’s a lot of informal connections that kids make through the activities that they do, which for them is a great way to connect.

So it’s not a formal support group, but the kids that are campers end up being counselors, and then the counselors end up mentoring for the campers. And we’re there really to support kind of this experience and support kids as they need it. But it’s really one of my favorite weeks of the year to see kids not just be in the hospital setting, but to see them connect with other kids, and that can be a game changer for them, knowing that there’s someone else that’s going through the same experience that is out there.

Vanessa Weisbrod:

So our program at Boston Children’s Hospital recently launched a patient wellness program that combines yoga, mindfulness, and meditation with cooking classes. Can you tell our listeners about this program and how you’re working to reduce stress in these patient families?

Jahna Goldmore:

Yeah, definitely. So I think part of the initiative of trying to start this program also came from seeing the experience kids were having at camp with really doing activity based things that led to these connections and led to them feeling kind of more empowered around their diagnosis, so connected and feeling like they could talk about it. So they were also doing yoga at camp and had this opportunity to do all these kind of cool things. So we thought this is a great chance to bring that to a setting where it’s not a five day thing, but they’re getting a bit of a taste of that experience. So I think our aim is to really start the conversation early that stress how you deal with emotions, how you take care of yourself as a whole person really can affect your IBD or your chronic illness.

That’s an important conversation to have, whether a kid is five or 15, or heading into college. And I think the experiential part, let’s not just talk about it, let’s really see, okay, how does moving around and doing 30 minutes of yoga and 10 minutes of sitting and doing some breathing for a teen, how does that actually impact your nervous system and how you feel? And having them reflect on that. So they’re getting a bit of a taste of what could be helpful for them as a long-term strategy, and they’re getting to meet other kids with the same diagnosis. So I think introducing these strategies and making it experiential, and then helping families and kids connect. And kind of learn, how do we do this? This is your first question. It’s such a huge shift and change to have a diagnosis, but really trying to engage people in their care in a different way that thinks about the whole person and helps them with all these pieces.

Vanessa Weisbrod:

I love how you’ve done some of these events on a farm that’s just in a beautiful setting outside, doing yoga on the farm with goats right behind all the families. It’s such a beautiful thing. So if families have not checked this out yet, I can’t recommend it enough to come and see all the great work that Jahna is doing in Boston. So Jahna, thank you so much for all of the wisdom that you shared today, and also to Dr. Snapper. But now I want to head to my favorite part so that we can find out where Jay is today.

Speaker 2:

Today, Jay is 38 years old and lives with his husband in Brooklyn, New York. They have a dog named Albert and are in the process of adopting their second child. Jay’s celiac disease and Crohn’s disease are well controlled, though he still has flares from time to time. He says that years of therapy, yoga, and meditation helped him learn to control his emotions surrounding his diseases, and that very supportive friends and family helped him get to the good place he’s in today. After graduating from the Dramatic Writing program at NYU, he and a group of friends started a production company and have now produced several feature films, including two that were shown at the Sundance Film Festival. Jay is a lead writer for all of the films.

In his own words, “Living with Celiac and Crohn’s isn’t easy at all. My college years were supposed to be the best of my life, but they were really hard and stressful for me. But looking back, today, I have to believe that being diagnosed with Celiac and Crohn’s changed the entire course of my life in a way that I’m happy about. It forced me to focus on writing, and today I am still doing what I love. I watch the actors bring my ideas and words to life on stage. I can’t wait to share my love of theater with our children and take them to their first Broadway show.”

Vanessa Weisbrod:

Thanks for listening to this episode of Raising Celiac. A special thanks to the generous contribution from the Global Autoimmune Institute to make this podcast possible. A reminder to all physicians, nurses, social workers, dieticians, and psychologists, to claim your continuing education credits. For listening to today’s episode, please visit dme.childrenshospital.org/raisingceliac and complete the short survey attached to this episode. If you like what you heard, be sure to write a review, like and subscribe wherever you get your podcasts. For more information, check us out on social at @BostonChildrenCeliac, on TikTok, @ChildrensCeliac on Twitter, or @CeliacKidsConnection on Instagram. Have a great month.