Episode 4: Eosinophilic Esophagitis and Celiac Disease. What Can I Eat?

Vanessa Weisbrod:

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

Speaker 2:

The year was 1992, and all Dave wanted was to be your average college male, going to classes, dating and enjoying the typical university nightlife. But, his college experience was far from that. Instead of being the life of the party, Dave found himself with frequent bloating and heartburn and earning the nickname in his social group of, quote, Puking Dave. Dave referred to himself as a Tums addict, and by early 2005, found himself throwing up after nearly every meal. He went to the doctor and was diagnosed with acid reflux. He was given a prescription medication, but it didn’t really help. He went back to the doctor and was given a motility test to track how food moved in his body. The test showed normal digestion speed and gave no answers as to why Dave couldn’t eat normally.

Vanessa Weisbrod:

Eosinophilic esophagitis, or EOE, is an autoimmune disease that causes inflammation and damage to the esophagus, the muscular tube that connects the mouth to the stomach. It is usually caused by a food allergy and can affect one’s ability to eat both physically and psychologically. Damaged esophageal tissue can lead to difficulty swallowing or cause foods to get stuck when you swallow. This can cause a great deal of anxiety for patients at every meal. Testing procedures for EOE can be complex and many aspects of the diagnostic criteria aren’t standardized. EOE symptoms can look a lot like those of other conditions making a diagnosis sometimes a long road for patients.

Speaker 2:

And a long road. It was for Dave. By now, Dave was so frustrated with the lack of answers he was getting from his doctor that he felt ready to give up and just try to accept that eating would never feel normal again. He lived this way until 2010 when his symptoms got worse and he started having major difficulty swallowing and food getting stuck in his throat. He started a list and began to see a pattern of this happening whenever he ate eggs, beef, broccoli, apples, potatoes, pork, chicken, and salmon. Around the same time, Dave started getting severely constipated and experiencing numbness in his hands and feet. He had a burning sensation in his left calf and pain in his knees, hips, shoulders, and back. He was always cold and his mind was consistently foggy.

Vanessa Weisbrod:

Celiac disease can be difficult to diagnose because symptoms can vary greatly from patient to patient. Anemia, osteoporosis, loss of dental enamel, heartburn, headaches, tingling hands, joint pain, or a blistery skin rash. Among one of the hardest symptoms to pinpoint and connect to celiac disease is brain fog. Diagnosis gets even more challenging when there are multiple autoimmune diseases affecting the patient all at the same time.

Speaker 2:

In 2016, more than 20 years after symptoms started, Dave saw a new doctor and got his first diagnosis of Hashimoto autoimmune thyroid disease. He started taking levothyroxine daily, which helped his constipation and numbness in the extremities. But the heartburn, bloating, and regular vomiting did not get any better. So Dave did what any person does these days and turned to Google. With a little bit of research, he learned about the strong connection between Hashimoto’s and celiac disease. Armed with his research, he returned to the doctor and asked for a celiac blood test. It was positive.

Vanessa Weisbrod:

The prevalence of autoimmune thyroid disease in patients with celiac disease is four times greater than that in the general population and is likely due to a shared genetic predisposition. The symptoms of the two conditions overlap greatly, but the treatments are different. With celiac disease, the only treatment is a strict gluten-free diet. Hashimoto is treated with the drug levothyroxine, a synthetic hormone that works like the T4 hormone naturally produced by the thyroid. Both the gluten-free diet and levothyroxine are lifelong treatments.

Speaker 2:

Armed with his positive blood test for celiac, Dave immediately started a gluten-free diet and felt confident that paired with the levothyroxine, he was on the path to being well for the first time in decades. It took about four months to start noticing a difference. He says it was like, “Someone flipped a light switch.” The day he woke up and his mind wasn’t foggy and his heartburn and bloating subsided, he finally felt hopeful that he could lead a normal life. But, despite his rigorous efforts with the gluten-free diet, he was still choking on food when he ate. So he did what he does best, started doing more research and made another appointment with his doctor. An upper endoscopy later he had his answer. A third autoimmune disease added to the list. Eosinophilic esophagitis.

Vanessa Weisbrod:

The association between eosinophilic esophagitis and celiac disease is still controversial and its prevalence is highly variable. Like celiac disease, one of the treatments for EOE is the elimination of specific food groups from the diet. But, unlike celiac disease where the known trigger is gluten, with EOE it takes some deeper investigation. It’s fair to say it’s complicated. So how does a patient with celiac disease and EOE manage the dietary considerations of both diseases? How do they handle the anxiety at mealtimes? Does a gluten-free diet help with the EOE symptoms? Would Dave’s story have turned out differently if he had gotten biopsy confirmation of celiac disease? We’ll discuss this and more on today’s episode of Raising Celiac.

Today we talk about celiac disease and EOE with Dr. Erin Syverson, the associate director of the Eosinophilic Gastrointestinal Disease Program at Boston Children’s Hospital. Then we’ll be joined by Tara McCarthy, a clinical nutrition specialist at Boston Children’s Hospital, who specializes in working with families with celiac disease and EOE. Welcome to you both to Raising Celiac.

Erin Syverson:

Thanks. Happy to be here.

Vanessa Weisbrod:

Dr. Syverson, let’s start at the beginning. Dave’s story is really complicated and it took him many years to get a dual diagnosis of celiac and EOE. Can you talk to our listeners about the current diagnostic process for celiac and EOE and how you get to that dual diagnosis?

Erin Syverson:

Ultimately, the diagnostic process for both of these diagnoses are pretty similar. We can look with an upper endoscopy or EGD. So when we suspect celiac disease in a patient, we often use a blood test first to get more information. Typically, if that blood test is positive or if we have a strong suspicion for celiac disease in a patient will do an upper endoscopy or an EGD to confirm. Unfortunately, in EOE we don’t have a similar blood test as a screening tool, so we have to have a pretty high suspicion for EOE. We have to suspect it based on symptoms alone. And then, at that point, we’d recommend getting an EGD to take a look further.

Vanessa Weisbrod:

Dave did not have a biopsy to confirm his celiac disease. How could his story have changed if he’d had that procedure?

Erin Syverson:

A lot of that depends on the timeline. It sounds like he struggled with symptoms for quite a long time. If he had done an upper endoscopy right after he had that celiac blood test, it’s possible they may have seen some inflammation in the esophagus to suggest EOE also, and so we would’ve potentially gotten a dual diagnosis at the same time. That being said, we don’t have a good sense of when these symptoms or when these diagnoses develop in relation to one another. It’s always possible, maybe we would’ve just seen celiac diseases at that time and we’d have to revisit later.

Vanessa Weisbrod:

If you have a patient with celiac disease, what would be an indication to test them for EOE?

Erin Syverson:

I think a lot of that depends on where in someone’s journey they are in terms of their celiac diagnosis. For instance, someone has a known diagnosis of celiac disease and they’ve been compliant with their gluten-free diet and despite that they’re still having persistent symptoms or other symptoms come to light that don’t really fit with the way they initially presented, it’s important to take a step back and to reevaluate what’s going on with that patient. Do they need additional workup or evaluation for other diagnoses?

Vanessa Weisbrod:

How long would you expect a celiac patient to follow a strict gluten-free diet before you consider their symptoms are being caused by another condition?

Erin Syverson:

That’s a hard question to answer. All patients are different. We know that this varies a lot, patient to patient. Some of this depends on compliance and how quickly a patient and their family is able to really pick up on compliance with a gluten-free diet. But, everyone has a little bit of a different timeline. What I find most reassuring, as the clinician, is if someone’s symptoms are showing gradual improvement over time, I think that’s overall reassuring. If it feels like we’re stalling or we’ve gotten to a point where someone seemed like they were feeling good and now we’ve backtracked, that’s oftentimes when I want to reassess things and I become a little bit more suspicious for maybe the possibility of something else going on.

Vanessa Weisbrod:

Is it always celiac that’s diagnosed first and then EOE? Or have you seen patients that are diagnosed with EOE first and then celiac disease?

Erin Syverson:

There is no clear pattern that I’m aware of or anything that’s really been published. I think there’s a little bit of a bias here where celiac disease, we have a screening tool. The majority of patients are coming in with GI symptoms. At some point, if things are not lining up and they’re not improving with whatever treatments we try out first, they’re going to end up with a celiac test in their workup. If that test is positive, most of them, at least in the pediatric population, are headed toward an upper endoscopy to confirm that diagnosis. The flip side is that patients with EOE, we’re not going to have a screening test. The pretest probability is lower for EOE headed into a scope as opposed to someone with celiac disease. That’s going to bias your results.

Vanessa Weisbrod:

Is this an argument for why, at least in kids, we should keep doing a biopsy?

Erin Syverson:

As a pediatric gastroenterologist, I definitely have a bias there. I think kids, depending on the age that they’re presenting symptoms, may not be super reliable. In EEO specifically, the symptoms change a lot, as kids get older. In younger kids, we can see really subtle non-specific symptoms. As kids get older, we start to see that more classic textbook presentation that was described for Dave where food’s sticking in the esophagus, vomiting, heartburn. But, young kids sometimes don’t present that way, so we have to be alert and aware.

Vanessa Weisbrod:

What do you see more commonly in young kids?

Erin Syverson:

Really depends on how young. The little kiddos, thinking like toddler age, we can see trouble with advancing with solids. Moving from more formula-based diet to more solids and more textured foods. Feeding refusal and feeding difficulties. Vomiting is more prevalent in younger kids. We hear vague complaints, belly aches, which is so non-specific, so that can be hard. As kids get older, we’ll start to hear more about belly aches and heartburn. Kids can start to describe that feeling of heartburn that maybe like a three or four year old might not be able to. And then as we head toward those middle school to high school years, that’s when we start to hear more about food sticking, heartburn. We may still see some vomiting then, too.

Vanessa Weisbrod:

Almost every study you read about the connection between celiac and EOE starts with, the link is controversial. Why is this?

Erin Syverson:

It’s a great question. I think really what it comes down to is the controversy is the fact that the studies that are out there report such a wide range of how common it is to have both diagnoses. They range from not having any relationship at all to really high percentages. That’s really where the controversy comes from. I can say just anecdotally, I do feel like we see it more, the two diagnoses together, as compared to one versus the other. I think that’s really where it stems from.

Vanessa Weisbrod:

Is there any evidence suggesting that when you biopsy a patient for celiac disease that you should also look for EOE while they’re having that procedure?

Erin Syverson:

When someone’s going in for an upper endoscopy for celiac disease, we are looking everywhere. We’re looking at the esophagus. We’re looking at the stomach. We’re looking at the small intestine, the duodenum, that first part. That’s where we’re looking for celiac disease. We’re looking in there. Sometimes we can see features that suggest celiac disease. Sometimes we don’t, to the naked eye. When we’re looking for celiac disease, we’re always taking biopsies or little tissue samples to look at under the microscope to confirm. Everyone’s practice varies, but I think a large percentage of pediatric gastroenterologists are probably taking biopsies in most areas. That would also include, in addition to the small bowel, the stomach and the esophagus. If that is the case, we’re, by default, evaluating for EOE among a number of other diagnoses. We’re also looking to see what things look like. If things look off, we’re definitely taking biopsies there.

Vanessa Weisbrod:

You’ve diagnosed a patient with celiac and EOE. What happens next? Do they go for allergy testing to determines which food they need to eliminate?

Erin Syverson:

That is also something that has changed a lot in the past decade or so. We have found that specific allergy testing, like skin testing, blood testing, really does not pan out well for figuring out what someone’s trigger is in EOE. After a few studies were published looking at that, many people have transitioned over to what we call empiric food elimination, if we’re going to do dietary treatment for EOE, which means we know what the top triggers are in EOE, and so we look at that list and say, “Where do we want to start?” In patients who have a diagnosis of both celiac disease and EOE, your hands are a little bit tied a bit more because we have to eliminate gluten to treat the celiac disease. Then we can see where things fall into place after that in terms of how someone responds for treatment of their EOE.

Vanessa Weisbrod:

Talk to us about the treatment options for EOE, both dietary and adding in a medication.

Erin Syverson:

I think of this as two big categories. We can either go with diet elimination or we can go with medication. Diet, which I touched on just a little bit ago, we will take a look and if someone has both EOE and celiac, we’ve cut out the gluten. In terms of other foods that we may or may not need to also pull out, we know that the top offending agent in EOE is dairy. That is followed by, in someone who’s already got gluten out of their diet, followed by egg, soy, peanut, tree nut, fish, shellfish. We have a top list there. It’s a lot of shared decision making with a family about how we want to address someone’s EOE, if we’re looking past just cutting out the gluten. Do we pull out milk also? Do we pull out milk and egg?

There’s not a right or a wrong in this. It’s really tailored to families. When it comes to medications, there’s three big categories of medications that we use for EOE. One is proton pump inhibitors. They’re a special antacid that’s been shown to help in eosinophilic esophagitis. That’s medications like omeprazole, Prevacid, those kind of things. That works in about 50% of patients. There’s swallowed steroids that come in a variety of different forms which can treat the inflammation on contact when a patient swallows the medication. Works in up to about 70% of patients. And then there’s a new medication that was the first FDA approved medication for EOE just approved in May of last year called dupilumab or Dupixent, which is a biologic and it’s an injection that’s weekly for patients who are 12 and up.

Vanessa Weisbrod:

What is the deciding factor for adding in a medication?

Erin Syverson:

Tends to be a very personal decision for families and their physician. I think the first thing to figure out is, once someone’s cut gluten out of their diet for the treatment, clear treatment of their celiac disease, is their EOE going to also respond? If it does, awesome. We’ve killed your birds with one stone and we can move forward. And when I say respond, we’re thinking both symptom improvement, like for Dave, but also, unfortunately, repeating a scope at some point, seeing if the inflammation has gone away. Then moving on from there. When, I think at that point, we’ve cut out the gluten, say someone’s EOE is still active, that’s when we have to make that decision. Do we pull more foods out of the diet or do we add in a medication? There’s not a right or wrong, and a lot of this depends on a patient’s age, lifestyle, and family preferences.

Vanessa Weisbrod:

It’s obviously challenging to cut out gluten. It’s challenging to cut out more foods. Does adding in the medication allow the patient to eat whatever they want? Obviously, gluten-free diet continues on, but for the EOE symptoms.

Erin Syverson:

I think in medicine, we would never say, “Yes, always.” That’s not always a simple answer. But for the most part, adding in medication should allow for a lot more flexibility with diet, a lot more flexibility. Yeah, one could argue that that could be a better way to go for a family who is having trouble with restrictions and the idea of pulling another food group out of their diet is an overwhelming thing.

Vanessa Weisbrod:

Does having celiac disease impact any of the decision making around the treatment for EOE?

Erin Syverson:

Yeah, it does. It does. I think from the very first step, what we’ve talked about. You clearly have an intervention you need to do, when you get both of these diagnoses. I think the most clear cut thing is that we have to cut out the gluten first. I personally don’t like to be overly restrictive with diet if we don’t need to. There are no clear, I think this is an important part, is there are no clear guidelines about how we do this. There’s not a step-by-step way that everyone is following when you get a patient who has celiac disease and EOE about how we’re going about management. It’s a little bit stylistic, physician to physician, but, in the end, we’re really talking to families about what’s going to work best for them.

Vanessa Weisbrod:

A study from the University of Chicago Celiac Center looked at the reintroduction of certain foods once the gut is healed. Can you talk a little bit about this study and how likely it is for a dual diagnosis patient to be able to add back in common foods like dairy?

Erin Syverson:

The study that we’re talking about is the authors looked at the medical records of 350 patients who had been diagnosed with celiac disease. They found that 6% had both celiac disease and EOE when they looked back at records. There were 17 patients in this group who had repeat scopes. The sample size was small and that needs to be considered. But just to give you a sense, just under 25% of those patients, of those 17 patients, had resolution of their EOE on a gluten-free diet alone. Just under 60% needed to eliminate other food groups for their EOE to resolve. And then when they looked at what food groups they pulled foods out and then they reintroduce foods. And when they tried to reintroduce foods back into the diet, they saw that, this is a gross oversimplification, but they found that about about 50% could tolerate reintroduction of dairy or eggs or nuts into the diet, whereas 100% tolerated reintroduction of soy into the diet.

One of the conclusions that they pulled from this is, when we’re reintroducing foods into diet for patient, maybe we start with soy and then go from there, which I think is not unreasonable, for sure. This pattern of tolerance isn’t unlike what we see in patients with EOE alone. If we’re going to go and pull a bunch of foods out of someone’s diet and then try to reintroduce, we do try to start with the less likely offenders. We’re just looking at that list of top ones. I’m always adding in dairy last. It’s consistent what we’re thinking about in patients with EOE alone. But, I think this was a really interesting study. And something to keep in mind though, is it generalizable to the entire population that has both celiac and EOE? I don’t know if we can say that just yet because it’s a pretty small study, but well done.

Vanessa Weisbrod:

Really interesting, especially, so many gluten-free products have dairy added to them. I know for patients with celiac disease, it’s something that would be ideal to be able to add back in. As you heard from Dave, quality of life is severely impacted for patients living with these conditions. How do you address the quality of life issues in your clinic? And is it different for younger kids than for college students like Dave was?

Erin Syverson:

It’s so important, but so underappreciated. I try to think about that regularly for families. Cutting anything our from the diet is really hard. Gluten-free diet alone is really hard. And then if you’re going to go tell someone now you have to cut dairy, it’s a lot. It’s a lot. Regardless of a patient’s age, I’m trying to keep these things in mind. The age really can impact it. I’m always mindful that when we’re cutting a number of foods out of, say like a young child’s diet, a toddler, what kind of relationship are they developing with food at that same time? These are really important times in a kid’s life where they’re trying new foods. We want it to be a positive experience. I don’t ever want kids to feel like food is a bad thing. Food is the enemy.

Food is always associated with negative connotations. I try to be really thoughtful about that when we’re talking about restricting a young child’s diet. On the flip side, you can think about someone, like Dave, who’s in college, and what is lifestyle like there. If you’re in a dorm and you’re on the school meal plan, what are your options? I want to set someone up for success. But, if your options are limited and you’re eating in the school cafeteria, maybe that’s not going to be the best option. It very much depends on the kid though. If someone’s living on their own, they’re a college student, they want to cook for themselves, they have the time. That’s great. But, that’s not everyone. It’s really very much a personal decision.

Vanessa Weisbrod:

Thank you so much Dr. Syverson, for all of this wonderful information. We’re going to take a quick break and when we come back, we’ll have our Boston Children’s Hospital dietician, Tara McCarthy, here to talk to us about nutritional support for patients with a dual diagnosis.

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

Speaker 4:

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

Vanessa Weisbrod:

Welcome back and welcome Tara to the podcast.

Tara McCarthy:

Thanks for having me.

Vanessa Weisbrod:

Living with both celiac disease and EOE can be very challenging. Where do you start in nutritional counseling for dual diagnosis patients?

Tara McCarthy:

That’s a great question. I think it really depends on what came first, the celiac or the EOE. If they’ve been on a gluten-free diet and now they’re asked to follow another elimination diet, they’ve already been used to it and they’re probably watching cross contact and things like that. Adding a few things, they feel okay, but sometimes they also know how difficult it was just to eliminate gluten. And then they remember or look at all their packages that they like and they realize, “Oh my gosh, those other foods are now in there, so now my favorite products are gone.” It is difficult. I really try to meet patients where they are and really involve them with what the treatment is going to be, as well. I know Dr. Syverson was talking about really getting the family on board of what is good for them at that time.

There are some families who just can’t think about doing another elimination after they already have done gluten-free. If they’re diagnosed with EOE and then celiac, I think sometimes wheat is part of one of the things we might take away. They might have already even been taking away wheat and now we’re just going a little bit deeper dive with celiac disease, avoiding the other things. So it really just depends. I think though when you have EOE and then you’re diagnosed with celiac disease, the cross contact is much bigger with celiac disease and the gluten-free diet. That’s the piece that really families struggle with.

Vanessa Weisbrod:

If a patient comes to you with celiac disease and they’re still having symptoms despite reporting vigilance with the gluten-free diet, how do you determine if they’re inadvertently getting gluten in their diet or if something else could be going on?

Tara McCarthy:

We get this question a lot. I get a lot of patients like, “Help. We think there’s gluten still in the diet.” This is where put on my detective hat and really deep dive into what the patient is eating. We ask the families to do a three-day food record with really details about the products, where they got them, what’s on the label, and then looking for other things and ask them tons of questions about everything from, do you eat gluten on purpose? Do you eat gluten to be polite? Do you ever take the cheese off of pizza? Because the cheese, maybe think that’s okay. All of those things. There’s a ton of questions. I have this whole big list that I say to families, “I’m going to ask you a ton of questions and some I know are not relevant for you, but we really just want to be consistent when we’re looking for gluten and how it’s getting in.”

Vanessa Weisbrod:

What are the most common foods, besides dairy, that we know of that we have to eliminate on top of gluten for these dual diagnosis patients?

Tara McCarthy:

Really the top four I would say now are dairy, wheat, egg, and soy. In the past, we definitely have eliminated nuts and tree nuts and shellfish. Fish, however, we do that a lot less now.

Vanessa Weisbrod:

Gluten is eliminated from the diet. And for some of these patients, so are many other common foods. What is your approach to helping these patients find food that excites them and participate in their everyday social activities like going to school, out to dinner, and family gatherings?

Tara McCarthy:

The most important thing, I think that I can bring to the table, is really telling the families what they can eat because they hear, “You can’t have gluten. You can’t have dairy. You can’t have eggs.” Really, telling them all the foods that they can eat. All fruits, all vegetables, all meats, legumes, seeds. There’s lots of foods out there that are naturally gluten-free and also free of the top eight. I think that’s really where I start. I also tend to look at what they’re eating now and see how difficult it’s going to be. Really, what foods are they going to miss and try to figure out some other foods that might work for them.

Vanessa Weisbrod:

Gluten-free foods, as well as foods free of other common allergens, are really expensive. What suggestions do you have for maintaining good dietary adherence while being mindful of the budget?

Tara McCarthy:

This happens for so many families. We really talk about it right in the beginning when we’re talking about any elimination diet. Again, I go back to the whole natural foods. I do tell people, I say, “I’m a dietician, but I’m also a mother of three, so I understand we’re not all going to eat whole natural foods.” But, really that’s where the cost adds up is when you have processed foods. Really thinking about a bag of potatoes is going to be a lot less money than a box of gluten-free pasta. Just being mindful of where you’re going to spend your money on those different things. You are going to have to buy a gluten-free bread. Then you might want to make some other choices for some other foods.

Vanessa Weisbrod:

We all know how important it is to find a dietician who specializes in celiac disease and EOE. We know that not every hospital has many readily available to see patients. Can you talk to our listeners about how they might find a dietician who specializes in dual diagnosis in their own community?

Tara McCarthy:

First, I always say, ask your GI for a recommendation. The Academy of Nutrition and Dietetics has a resource of providers. Many local children’s hospitals also have dieticians that specialize in both. And then I also tell people to look on their social media feeds because when someone has a really good provider, they’re usually happy to share that. That’s usually the best place.

Vanessa Weisbrod:

You bring up social media, and I can’t let you leave the studio today without talking about some of this negativity we’ve seen online recently about meeting with dieticians to help with things like celiac disease. I think meeting with a dietician should be the gold standard of treatment for celiac disease. It’s really the place where you learn so much. Can you talk to our listeners about why it’s important to see a dietician and how you can really help them have a better quality of life?

Tara McCarthy:

I would say it’s just like any provider. If you start off and you’re not enjoying the experience, then you need to switch providers. It is so important, the diet in both of these diagnoses. I think taking the word diet out sometimes is really important, and really talking about a lifestyle and not bringing to the table the negativity of, you can’t, you can’t, you can’t. But, really encouraging people to the, you can, you can, you can. There’s so many delicious, wonderful foods out there that families can eat.

Really trying to turn the tables on looking at what is important. A dietician is really important because these are lifelong. It changes. You might have a three-year-old that you’re able to feed everything and they’re meeting their needs. And then you might have a teenager who is walking home and getting things at the corner store. They’re very different, as the child is in different milestones. I think it’s important to keep the dietician in their life. But, really find a provider that you click with, someone that you connect with, someone that you feel comfortable with asking questions and really enjoy the experience.

Vanessa Weisbrod:

For sure. Thank you so much, Tara and Dr. Syverson, for all of the wisdom that you shared today. Now, let’s find out where Dave is today.

Speaker 2:

It’s been decades since Dave began his journey to getting a diagnosis. He now lives on a strict gluten-free and dairy-free diet and feels healthy most of the time. However, he lives every day with major food anxiety issues, and rarely eats outside of his home unless he’s at a well-established, gluten-free eatery. Dave has learned to love cooking and is having fun discovering how to modify recipes to prepare his favorite meals at home. In 2018, his sons helped him create an Instagram account to post his gluten-free recipe photos. It’s now become his hobby. In his own words, “I turned 50 last January and I feel like a new person. I don’t think I knew how sick I was until I felt normal. My best advice? Don’t stop advocating for yourself because you might just find yourself feeling well.”

Vanessa Weisbrod:

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