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Melanie Cole (Host): . There's no handbook for your child's health, but we do have a podcast featuring world class clinical and research physicians covering everything from your child's allergies to zinc levels. Welcome to Kids' HealthCast by Weill Cornell Medicine. I'm Melanie Cole and joining me today to highlight celiac disease is Dr. Elaine Barfield. She's an associate professor of clinical pediatrics at Weill Cornell Medical College, Cornell University, and an associate attending pediatrician at New York Presbyterian Hospital Weill Cornell Medical Center.

Dr. Barfield, it's a pleasure to have you join us today. I'd like you to start by explaining to the listeners about food intolerance, how that's different than an allergy? Tell us a little bit about what you see every day.

Dr Elaine Barfield: Well, thank you, Melanie. Thank you for having me on it's a pleasure to be here and I'm happy to talk about celiac and food intolerance. It's something that I deal with quite a lot in my practice. So if you're asking about the difference between food intolerance and allergy, that's an excellent question. I think the two of them are confused quite often. So food intolerance is different from food allergy because food allergy actually involves the immune system and a person will experience symptoms usually within minutes of eating the food item.

And the immune system basically identifies some type of foreign substance. In this case, it's a food antigen and mounts, an immune response, or an attack against that trigger. And that leads to production of what we call IgE antibodies that then release various chemicals leading to an allergic reaction. And so some of the symptoms here include things like hives, itching, even as severe as Anaphylaxis. So I'd say an intolerance would cause some symptoms in the GI tract, maybe some GI upset, perhaps a little diarrhea, whereas food allergy, true allergy that's IgE mediated and tested by an allergist can be serious or life threatening.

Melanie Cole (Host): Wow. That was an excellent definition. And you are a great educator, Dr. Barfield. So tell us about some of the most common allergies and or intolerances that you see everyday. Because we're talking today, obviously about celiac, but people have dairy, gluten, they have all kinds of things that are, they're both allergic to and intolerant of. So speak about those.

Dr Elaine Barfield: You're absolutely right, Melanie. So I'd say some of the common food intolerances or sensitivities that I see in my practice of children include what you just mentioned. Dairy, gluten, some are intolerant of fruit toast, which is a simple sugar that's found in fruits and veggies. And also in certain sweeteners like agave and honey. Solfites, which are found in preservatives food coloring. These are all pretty common food intolerances. And then I'd say the common eight that we talk about in terms of allergies are milk, egg, wheat, soy, tree, nut, peanut fish, and shellfish. So I deal a lot with milk allergy, milk intolerance, Cal milk protein intolerance, and infants. So I would say those are some of the more common, both intolerances and allergies that I see.

Melanie Cole (Host): So now tell us about celiac disease. What is this? Tell us a little bit about what it is and how it reacts in the gut?

Dr Elaine Barfield: So celiac disease is an autoimmune disorder. It occurs in genetically predisposed people and really what it is, is that the ingestion of gluten in the diet, results in the mounting of an immune response that attacks and causes damage to the small intestine. So specifically the Vili or those small finger-like projections that line our small intestine and really promote nutrient absorption become damaged. They become blunted, we call it. And in that case, they're not able to appropriately absorb the nutrients and minerals that we need to stay healthy.

So this then leads to a malnourished state. And can produce significant GI and non-GI related symptoms. And we really think that celiac affects one in a hundred people or 1% of the population. We think that it's grossly underdiagnosed and that they're probably close to 2.5, a million Americans living with undiagnosed celiac disease.

Melanie Cole (Host): Wow. So this is so interesting, Dr. Barfield, so signs and symptoms, our children, as you say, get upset stomachs. Maybe they have an intolerance or a sensitivity. What would be some signs and symptoms, something that we would notice because they do get stomach aches a lot. So it's kind of hard to figure out what's causing that. Tell us a little bit about some specific things that parents should look for?

Dr Elaine Barfield: That's absolutely true. You know, children experience abdominal pain all the time. And so sometimes it can be difficult to determine if this is a belly ache. they ate a little too much candy or they're nervous about the first day of school, or if this is something more serious, like celiac disease. So I'd say celiac is a tricky disease in that it can really present with so many different types of symptoms or none at all. There can be in GI symptoms or gastrointestinal symptoms. There can be non GI symptoms.

So I'd say in the children that I treat and the teenagers I treat as well, some of the GI symptoms that are common would be things like abdominal. Gas and bloating. One can present with either diarrhea or constipation, nausea, vomiting, and even poor weight gain. And then some of the non-GI symptoms, which are even more tricky to identify in some cases are things like delayed puberty or short stature, joint pain, headache, irritability, or fatigue. And then that sort of foggy brain feeling that many people describe.

So all of these really can be quite difficult to piece together. Especially if they've been occurring for years and years, and one has not been able to make that association that, ah, this could be celiac disease.

Melanie Cole (Host): So, what do we do when we start to notice these things, obviously our medical home, our pediatrician, such a great resource. When does it then become GI related? When would you come into the picture? Is there screening? How do we know? Tell us how it's diagnosed.

Dr Elaine Barfield: So if one thinks that they may be experiencing, or their child may be experiencing signs or symptoms of celiac, any provider, any physician or nurse practitioner or physician's assistant can order a blood test. It's a simple blood test, a screening test. That's the first step in diagnosis. So the test actually screens for elevated levels of certain antibodies in our bloodstream. And if the test comes back positive or abnormal, That means it's time for step number two, which is where I would become involved or a GI would become involved.

And once you have a positive celiac screening test, you really need to have that diagnosis confirmed with an upper endoscopy with biopsies. And again, that would be performed by a gastroenterologist or your GI doctor. And during that procedure, you'd go to sleep for about 10 minutes and the GI would take tissue samples or biopsies from the small intestine. And if the pathologist then later notes damage to the small intestinal cells from these biopsies, then a diagnosis of celiac disease can generally be confirmed.

One important thing about testing, though, that's really important to note is that if someone is being screened for celiac, they must be consuming gluten at the time of that test. They should have been consuming gluten really for at least six to eight weeks before the test. And if they're not, the test can actually produce false negative results. Which of course can be misleading and then lead to more delays in an accurate diagnosis.

Melanie Cole (Host): What a great point you just made Dr. Barfield. So, now you've diagnosed it. What's next? What is it that we do with kids and explain to parents a little bit about celiac diet? Because I think that's the most important message that we're talking about here today is living with it, helping your children, getting them to eat healthy, and yet something that will go along well with them.

Dr Elaine Barfield: Absolutely. So unfortunately at the moment, there is no cure for celiac disease. Our only treatment at the moment is a strict, lifelong adherence to a gluten-free diet. And compliance with that diet will allow those intestinal cells that have been damaged to heal and resolve, symptoms will improve and resolve. And one thing to note is that since gluten-free foods often have added sugar really for taste, and maybe deficient in certain vitamins and minerals like iron or vitamin D, anyone who's on that gluten-free diet really should be followed by a dietician.

I would recommend annually. There are many different ongoing phase one and two trials attempting to determine, potential drug therapies as of June actually this year, there were 22 potential therapies at various stages of development. And that's kind of fascinating because some of these include digestive enzymes. For example, that a person who has celiac would take during a gluten containing meal that would help improve the digestion of gluten by breaking it down into smaller.

That are not identified by the immune system as triggers and other therapies that we're looking at in the literature. And the research world include targeting the immune to really try to just prevent it from having that exaggerated immune response in the first place to gluten. So while there's a lot of exciting research coming along the pike, currently, the only treatment as I mentioned is a strict, lifelong adherence to that gluten-free diet. And as you mentioned, it can be challenging and daunting to think about, changing, your lifestyle and modifying your diet.

And sometimes things I talk about with my patients are we going to modify the diet for the entire home? Are we gonna make the whole home gluten? When we have a section of the kitchen, that's gluten free? It can be a difficult decision to make. If one or more people in the household sometimes need to be gluten free or have celiac disease. Sometimes it makes more sense to think about changing the home to be gluten free. But in general, gluten foods that one can eat, naturally occurring gluten free foods are many.

There are fruits and veggies, meat, poultry, fish, seafood, dairy, beans, legumes and nuts are all naturally gluten free food. So those are all safe. And then as far as grains, most grains actually are gluten free. Examples of these would be quinoa, rice, buck, wheat, corn. These are all safe grains, the grains that you have to avoid an a gluten-free diet, however, would be wheat, barley, and rye.

Melanie Cole (Host): Wow. You just got to my next question with some suggestions of foods that contain gluten and foods that don't. And tell us a little bit about how important label reading is, especially for parents shopping for gluten free products for their kids, pastas and things like that. How can that help the family? And do you have some good suggestions for like snacks? Cause school time sending our kids with lunches, what about school? Do we let the school know? Just kind of give us a little overview of the lifestyle and really what it's like for the family.

Dr Elaine Barfield: Sure. A lot of people ask along those lines, can we go out to eat? Can my child attend a birthday party? Can they safely go to school? I tell people that absolutely we encourage our families and our patients to try to lead normal lives. But just to exercise caution, when doing any of these particular activities. One thing that's important to do before you go anywhere. A restaurant, a birthday party, a friend's house is really for you to understand the gluten-free diet.

That's the first key. Calling ahead or researching restaurants that offer gluten-free options can sometimes be a good idea. Sometimes I tell people though, to try to stick with those naturally occurring gluten-free foods that we just talked about or dishes that can easily be made gluten free. So for example, a salad without the wontons or the croutons or a burger or hot dog without the bun. avoiding breaded items and soups and sauces is a good idea.

And I tell people, parents and children alike that at the restaurant or at the birthday party, they wanna be assertive, polite but assertive and inform the weight staff about the celiac condition or the gluten intolerance condition. And really let them know you cannot have anything with wheat, barley, or rye, which again are all containing gluten. And you really can't eat things like bread crumbs or flour or soy sauce, let them know. If you eat these things, you will become quite ill.

And if they don't seem to understand, perhaps the server doesn't seem to understand, it's okay to request, to speak to the manager of the restaurant or the chef to ask about food preparation, as well as risks of cross contamination. And you mentioned something that's really important, which is label reading. We try to empower our patients at a young age to really learn how to label read. It's really critical to managing celiac and adhering to that gluten-free diet that we discussed.

So I always talk about a few ways that you can tell if an item is gluten free. The first is really check the label for obvious ingredients. We mentioned again, wheat, barley and rye, malt, and brewers, yeast as well are things that you would want to avoid. on most labels, there are also allergy lists. And so anything saying contains wheat should definitely be avoided, but it's important to know that the lack of an allergen being listed does not necessarily mean that, that food or food product or item is gluten free.

Then finally with label reading, it's important to look for gluten free labels. So in 2013, the FDA established the gluten free food labeling rule. And under this rule, they said that a food or a food item is allowed to be designated gluten free, as long as it has less than 20 parts per million of gluten in the product. So if you see a gluten free label, you can be pretty sure that that item truly is gluten free. And if there's not a gluten free label on the package, it's important to read that ingredient label carefully.

Melanie Cole (Host): Wow. What an informative podcast this has been Dr. Barfield. Do you have any final words? What you'd like to take home message to be for parents about celiac disease? Awareness and what you would like them to know about it?

Dr Elaine Barfield: Absolutely. One thing that I just wanna leave parents with is understanding how to keep their kids safe at school, they spend the majority of the year at school. And so we know children and students with celiac disease may face academic and social challenges for various reasons. And so given this it's critically important to advocate for your child's needs to ensure that they have all of the resources and accommodations necessary for them to thrive and to succeed in school to the best of their ability.

So, one thing that many parents don't know about when we diagnose celiac. Is the 504. So section 504 of the rehabilitation act of 1973 promises, equal opportunities for Americans with disabilities and celiac disease is considered a disability under this act. So parents can submit a 504 plan generally written by the doctor. We do hundreds of these E in my office, and you submit that plan to the school or the college. And this really is to ensure that these accommodations such as provisions of gluten free meals or snacks, unrestricted bathroom access, should it be needed.

And stop the clock testing, are employed and respected during the child's school experience. These 504 plans are considered legal documents and they must be renewed annually. So that's just one way that parents can make sure to advocate for their children. And again, to make sure that their children are provided whatever accommodations they are due in order to make sure that they can live safely and hopefully happily, despite having celiac disease.

Melanie Cole (Host): I learned so much from you today, Dr. Barfield, what a great podcast and interview this was thank you for joining us and sharing your incredible expertise for parents. What great information and Weill Cornell Medicine continues to see our patients in person, as well as through video visits. And you can be confident of the safety of your appointments at Weill Cornell Medicine.

That concludes today's episode of Kids' HealthCast. We'd like to invite our audience to download, subscribe, rate, and review Kids' HealthCast on Apple podcast, Spotify and Google podcast. And for more health tips, go to weillcornell.org and search podcasts. And don't forget to check out Back to Health. I'm Melanie Cole.

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