Celiac Disease in Pediatric Patients

Podcast Transcript

Dr. Scott Steele: Butts and Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end to end.

Dr. Scott Steele: Hi again, everyone, and welcome to another episode of Butts and Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. It's always nice to have a repeat guest on, and today we're lucky enough to have Dr. Deborah Goldman, a Pediatric Gastroenterologist in Cleveland Clinic Children's. And we're going to talk a little bit today about celiac disease, specifically in pediatric patients. Welcome.

Dr. Deborah Goldman: Thank you, Dr. Steele, and thank you for having me back.

Dr. Scott Steele: So, for those who didn't listen to your previous episode, why don't you give us a little bit more information about your background. Where are you from? Where'd you train? How'd it come to the point that you're here at the Cleveland Clinic?

Dr. Deborah Goldman: So, I'm a pediatric gastroenterologist at Cleveland Clinic Children's Hospital. I'm from Newport, Rhode Island. And I was educated in New England and then moved to Minnesota for about 30 years. And I've been in the lovely city of Cleveland for the past seven years. It's now my home.

Dr. Scott Steele: We are glad to have you here. And so, as I said, today we're going to be talking a little bit about celiac disease in pediatric patients. So, to start out, can you tell us a little bit about what celiac disease is?

Dr. Deborah Goldman: Sure. So, celiac disease is an immune-mediated disease where there is an intolerance to gluten. Gluten is a protein found in wheat, rye, and barley. This is in contrast to what's called a wheat allergy. And celiac disease is not an allergy, nor is it a gluten sensitivity. So, it is an intolerance to wheat, and it can cause damage to the small intestine.

Dr. Scott Steele: So, truth or myth: about one in 300 children in the United States has celiac disease?

Dr. Deborah Goldman: That is true. We have a worldwide prevalence of about 1.4 percent of the global population who have celiac disease. And this has been seen on all continents except for Antarctica. Really, it needs to have increased awareness of this disease, and who do you screen, and who is at an increased risk for celiac disease?

Dr. Scott Steele: So, what are the symptoms of celiac disease, and when can they first present in a child?

Dr. Deborah Goldman: So celiac disease, given its immune-mediated disease, occurs in a genetically predisposed host or person along with exposure to gluten. And then there's some kind of a trigger and we're not exactly sure what the trigger is. For example, you can have identical twins who have the same genetic makeup. One can have celiac and the other may not.

The symptoms that we see in children really vary according to their age. And it can be poor growth, constipation, diarrhea, abdominal distension. We see elevated liver enzymes, and also dental erosions. So, there needs to be an awareness that it has a protean manifestation in children and is often seen once wheat is introduced into the diet.

Dr. Scott Steele: Yeah. So, let's kind of unpack that a little bit further. So first, just in very kind of an overview level, what is "immune modulated?" What does immune disease mean for some of our listeners who may not know that. And then, what causes a child to have celiac disease? I know you mentioned that this is the immune system when they have exposure to wheat. But is there anything that they may make - a predisposition - to certain kids over others who may have celiac disease?

Dr. Deborah Goldman: So yes, what an immune-mediated disease means is that the protein sets up a pathway which alters the immune cells and that they attack the lining of the small intestine. In children who have certain conditions, they are at increased for celiac disease, including those who have an IGA deficiency, children who have trisomy 21, children with diabetes, first degree relatives of celiac disease, in children who have Turner syndrome, Noonan syndrome. So, in those children we're very careful about screening. Also, we can see it in association with other autoimmune diseases such as thyroid disease.

Dr. Scott Steele: So, do patients - and specifically pediatric patients - start the process the first time they're exposed to it, or is this something that kind of ramps up over time?

Dr. Deborah Goldman: So, in general, it ramps up over time. And when we see children in our pediatric offices who come in with concerns about diarrhea, poor growth, even constipation, we often screen for celiac disease. And it really needs to be aware amongst pediatric practitioners who need to be screened for this disease because it's fairly prevalent in our population.

Dr. Scott Steele: So, at what point should a parent or a legal guardian seek medical treatment for their child if they suspect that maybe after listening to this podcast their child may have celiac disease?

Dr. Deborah Goldman: The screen in general is a blood test and it's a simple blood test that can be performed in general labs that are done in children less than two can vary to what we do in children over two. But it is a blood test that we use to screen for celiac and it has very high sensitivity and specificity. So, it's specific and it's sensitive to pick up those cases.

Dr. Scott Steele: So, is there anything more to the diagnosis? Is it just simply that? And if they do have that, can you talk a little bit more about what are the next steps for a pediatric patient following that diagnosis if it indeed it is positive.

Dr. Deborah Goldman: So, if a child comes in and there's a suspicion of celiac disease or they have signs or symptoms that raise concern for celiac disease, we do a screening blood test. If that is positive, we will recommend that they have an endoscopy and a small bowel biopsy done to confirm the diagnosis. The recommendation from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition recommends that if it's above a certain level, that a child have an upper endoscopy with biopsy of the small intestine to confirm the diagnosis.

Dr. Scott Steele: So, what's important for a parent or legal guardian to discuss with their child's medical provider while they're trying to help manage that child's celiac disease over time?

Dr. Deborah Goldman: So, when we confirm a diagnosis and it's based on findings at the time of the endoscopy with looking at the tissue under the microscope, if it has changes consistent with celiac disease, we very quickly refer them to a pediatric dietitian to start on a strict gluten-free diet. That's the recommendation. And we follow these patients very closely over time to make sure those blood tests normalize and that the children start to grow, gain weight, and their symptoms improve.

Dr. Scott Steele: Okay. So now they're a little bit further on in life. Is this something that they can never have anything with certain exposures? Does it get better over time? Or is there any treatment or any advancements on the horizon in terms of diagnosis or treatment in celiac disease?

Dr. Deborah Goldman: So, in 2023, the management of celiac disease, whether it's made in an infant child, adolescent, or adult, is a strict gluten-free diet for life. We have very nice resources now that there is availability of a lot of gluten-free products in most supermarkets. In addition, non-food substances also have to be used with caution. The good news is that there's a lot of research going on to try and help those patients because it is difficult to follow a strict gluten-free diet for life. There are no holidays; you can't cheat. And it really needs to be a very strict diet that impinges on a lifestyle.

So, there are some new developments. We're looking at vaccinations that may offer these patients in the hope that they may be able to eat gluten in the future. However, it's not for primetime yet.

Dr. Scott Steele: So, if a child would like to, if you will, if they got to have that certain something they really, really like but it does not follow the diet that's recommended, can they sneak a little bit or will they be, something like, diarrhea or belly pain or just kind of they'll bounce back from it? Or is this something that can have a little bit longer term manifestations or ramifications because of it?

Dr. Deborah Goldman: So celiac disease is unique in that a diet will cure it. So once a gluten-free diet is initiated, the small intestine regenerates itself, it returns to good health, children will grow, gain weight, and some of the nutritional deficiencies that we can see with it, such as an iron deficiency anemia, vitamin D deficiency, we can have an associated elevation of liver enzymes. They all revert to normal.

If there is inadvertent gluten exposure, there's small bowel damage over time that can lead to serious issues medically, osteoporosis, anemia. And there is a fear that it can lead to small intestinal cancer or lymphoma.

Dr. Scott Steele: So, how long, or is this dose dependent, is the small bowel down if you do inadvertently take in some gluten? Is there a direct correlation and effect between that and how long does it take the small bowel to recover back to normal?

Dr. Deborah Goldman: Luckily, it recovers fairly quickly, and if patients inadvertently take gluten in their diet, they may be symptomatic, and they're aware of it. Others are not. And that's why they need to be followed closely by a support team, have a gastroenterologist make sure that their antibodies are negative.

There are certain cases that are refractory to a gluten-free diet. However, that's seen more in adult patients than we see in pediatrics.

Dr. Scott Steele: That is very, very interesting stuff. And so, now it's time for our quick hitters and for those of you who have not listened to Dr. Goldman's episode in the past, we're going to ask her a couple more things just to get to know her a little bit better. So, first of all, salt or sweet?

Dr. Deborah Goldman: I like salt.

Dr. Scott Steele: Fantastic. And if I was to turn on your car and listen to what you're playing on the radio, what would I be listening to?

Dr. Deborah Goldman: The Metropolitan Opera.

Dr. Scott Steele: Whoa. There we go. And let's take us back to the time of your first car. What was it?

Dr. Deborah Goldman: It was a stick-shift Fiat.

Dr. Scott Steele: Oh, fantastic. That was my sister's first car as well. That's fantastic. And either a trip that you've been on that was quite memorable or a trip that you want to go on, what would that be?

Dr. Deborah Goldman: Well, I mentioned the last time that I'd like to go to Antarctica. But I'd like to go back to Italy. It's a beautiful, beautiful country and I plan to go in December of this year.

Dr. Scott Steele: That's absolutely fantastic. So, give us a bit of a final take home message, if you will, about celiac disease in pediatric patients.

Dr. Deborah Goldman: So, I think that there needs to be awareness amongst pediatric practitioners. There needs to be an awareness in the community that this disease exists. Luckily, we've made advancements in the diet and adhering to the diet over time. I remember when I started my career, we would have to hand a family how to cook for your child with celiac disease. And it's become a lot easier that you're able to buy things on The Internet or go to the supermarket and see aisles with gluten-free foods. Companies make gluten-free cakes and brownies and cookies, and I think that there's also an awareness and a sensitivity in schools, in restaurants, and in other venues where food is provided.

Dr. Scott Steele: Well, that's fantastic to see how far we've come. And so, for more information about celiac disease in pediatric patients, visit clevelandclinicchildrens.org/gi. Again, that's clevelandclinicchildrens.org/gi. You can also call us at (216) 444-5437. That's (216) 444-5437. Dr. Goldman, thanks so much for joining us again on Butts and Guts.

Dr. Deborah Goldman: Thank you for having me, Dr. Steele.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.