Intro: Welcome to Pediatric Voices, Duke Children's podcast about kids healthcare. Now here's our host, Dr. Angelo Milazzo.

Angelo Milazzo, MD (Host): Hello and welcome to Pediatric Voices, a conversation with the people who make up the health care team at Duke Children's Hospital. I'm Dr. Angelo Milazzo, a Pediatric Cardiologist and Professor of Pediatrics at Duke Children's, and I'm one of the hosts of the show. I'm here to bring you insights about children's health from my expert friends and colleagues.

On this episode of Pediatric Voices, let's focus on the problem of gluten, gluten senstivity, wheat allergy, and Celiac Disease.

Over the last several years, these terms have become common parlance in the media, in school cafeterias, at the dinner table, in homes across our communities, and of course, across social media and the internet. Not only are patients, parents, and family members navigating a lot of conflicting information, but even physicians and other health care providers have a poor understanding of the terminology, the diagnostic methods, the medical treatments, and the dietary recommendations.

Fortunately, I have the ideal experts with me today to help us explore the subject. I'll be talking with Dr. Narayanan Venkatasubramani and registered dietician Lesley Stanford.

Dr. Venkat, or simply Venkat is what his friends and colleagues call him here at Duke, is an Associate Professor of Pediatrics in the Division of Pediatric Gastroenterology, Hepatology, and Nutrition. And in addition to being a very busy clinician, he has participated in many educational and training experiences for our medical students and our trainees. And he pioneered and directs our Pediatric Gastroenterology Fellowship here at Duke.

Lesley is a registered dietitian in the same division, the same program. And she's been working alongside our physicians and our advanced practice providers in pediatric gastroenterology for many years. She has a wealth of experience in the dietary management of a wide variety of gastrointestinal disorders, including of course, celiac disease. So both of our guests are truly experts in the evaluation and management of children with celiac disease. Welcome, Venkat and Lesley. It's a great pleasure to have the both of you on the Pediatric Voices podcast today.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Thank you, Angelo. I'm so happy to be here and I'm very excited to share my thoughts with all of you about this very important topic that affects not only the kids, but also the adult population.

Lesley Stanford, MS, RD, LDN: Thank you for having me. I'm excited to be able to talk about something that's very important to me.

Host: Wonderful. And because you guys are excited, I'm excited to bring this information to our listeners. Okay, Venkat, I'm going to start with you. Let's start at the very beginning with some basic definitions. Tell us what celiac disease is and how it impacts children.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Well, in simple words, kids with celiac disease develop symptoms when they eat gluten containing products that are present in wheat, barley, and rye. For example, products like bread, crackers, and cookies contain significant amount of gluten. I like to use this simple analogy that I reviewed online to explain celiac disease for kids using a castle and dragon story.

I want you to imagine your body as a castle, And inside the castle, there's a treasure room which is like your small intestine. In this treasure room, there are security guards called immune cells that protect it from any harmful invaders like infection. Now, let's talk about gluten. Gluten is like a sneaky dragon trying to get into the treasure room. Normally, the security guards can tell the difference between good guys, which are the good foods what we are eating, and the bad guys, which are the harmful things. But in some people with celiac disease, the security guards, or the immune cell, get confused. They see gluten as a scary invader and attack it with all their force.

When the guards attack the gluten, they accidentally damage the wall of the treasure room, which is the small intestine. This makes it harder for the good guys, which are the nutrients, to get through the rest of the castle, like the body. So whenever you are eating healthy food, your body might not maybe use it as well because of the damage caused by the troublemaker gluten.

This can make you feel tired, sick, or even cause tummy troubles. Avoiding gluten will keep the treasure room and the guards to stay calm, with the whole body or the castle running smoothly. I like this simple explanation, as most of the kids are super imaginary and love to discuss this story with other family members at the dining table.

This will not only educate the kids, but the whole family and their school friends as well. If families are interested, there are lots of comic books available to learn about more this topic in a simple way.

Host: Venkat, I think that's a great explanation. I love the way you frame that in terms of a story that, that children can understand, that they can talk to each other about, talk to their families about. So that's, fantastic. Lesley, I want to ask you to add some thoughts here because, it strikes me that the foods that Venkat mentioned, I mean, these are basic foods in most people's diets. What an incredible challenge it must be for people to have to avoid things as basic as bread. How do you begin to approach that?

Lesley Stanford, MS, RD, LDN: Well, we want to have good education of the parents and good education for the patient who has celiac disease, and sometimes we end up talking to the school system with the parent's permission. Sometimes we talk to grandparents. It takes a village.

Host: Very good. And like I said, that's an interesting challenge and I'm sure heavy lift for many patients and families. Venkat, turning to you for a moment, tell me how common is celiac disease and are there particular children or groups of children who are more at risk than others?

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Celiac disease is more common than many people realize. In fact, it's one of the most common autoimmune conditions in children. It affects approximately 1 in 100 people in the Western countries and the numbers are significantly higher in certain geographic locations based on genetic and other environmental factors.

Celiac disease is still largely underdiagnosed due to the varied presentation of clinical signs and symptoms. I believe that we are seeing only the tip of an iceberg. What I mean by that is for every known patient with celiac disease, there are at least 40 to 50 people with undetected disease. So this can occur at any age, but most commonly diagnosed in children and adults between the ages of 30 and 40. Certain factors can definitely increase the risk for developing celiac disease. For example, if one of the family member is affected, there is a higher chance for other individuals within the family to develop celiac disease. Few other conditions that increase the risk for celiac disease are autoimmune disorder, like hypothyroidism, diabetes, where it increases the risk of celiac disease.

So it's very important for this group of high risk individuals to contact their physician for going through the baseline test and finding out if they have celiac disease or not.

Host: Lesley, I want to follow up on that question with something directly related to the dietary issues. There may be parents out there wondering, is this like an allergy? If I expose my child to gluten early in life, am I setting them up to develop sensitivity? And then you hear this term gluten sensitivity and parents are probably wondering, is gluten sensitivity the same as celiac disease? So what can you tell us about early exposure to gluten and whether it's a risk factor either for sensitivity or for celiac disease?

Lesley Stanford, MS, RD, LDN: With a child who's got wheat allergy, that would be immune mediated and they would need to stay away from all wheat. And so that might be a child who's diagnosed with a wheat allergy as soon as wheat is introduced after six months of life.

For somebody who's got gluten sensitivity, it doesn't matter whether they're exposed to it or not, the gluten sensitivity seems to just involve the digestive system, and so it would give kids tummy aches, it would give kids loose stools, things that affect quality of life. But with celiac disease, that's going to affect their digestive tract, and we often see children present with poor growth, and so we're very concerned about children who aren't growing well, and there are lots of different reasons, but one of the reasons could be celiac disease.

Host: Well, that's very helpful. That helps me at least begin to sort out these different categories. You talked about wheat allergy, you talked about gluten sensitivity, and then you talked about celiac disease. Venkat, anything that you want to add to the distinction among or between those three terms?

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Absolutely, I think Lesley pointed out very clearly, what exactly are these different things. Specifically, the wheat allergy is like a food allergy, like, similar to peanut allergy or bee sting allergy, right? They can have mild itching, hives, or severe reaction like difficulty in breathing, anaphylaxis, which is a life threatening allergic condition.

And it's very critical for these individuals with a known wheat allergy to carry an EpiPen and seek medical attention if there is an allergic reaction, and these kids need to avoid only wheat. But they can still eat barley and rye, which Lesley will talk more about it.

And compared to gluten sensitivity, there are symptoms like celiac disease, but they do not have any intestinal inflammation, nor long term complications like iron deficiency anemia, or risk for developing cancer. And celiac disease is, as Lesley mentioned, is an immune mediated reaction, which definitely causes a lot of inflammation in the GI system.

So these kids definitely need to avoid the gluten throughout their life.

Host: Again, that's amazingly helpful to have both of you, be very specific with the distinctions among those conditions. So, I think our audience is really going to appreciate that. We're going to come back to gluten sensitivity in a little bit. I want to connect back to celiac and ask you, starting with you Venkat, about typical common symptoms. What are parents, caretakers going to see? What are patients going to experience if it truly is celiac disease?

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Let's go over some of the common symptoms which are secondary to small bowel inflammation and injury. And again, the symptoms can vary widely from person to person and may evolve over time in the same person. In some children, they may experience gastrointestinal symptoms like tummy pain, bloating, excess flatulence, weight loss, or no increase in height at all compared to other kids in school, while others can present with general non-specific symptoms like tiredness, irritability, cannot concentrate in school, or having intermittent headaches.

We have few kids with celiac disease presenting to skin doctor with skin rash called dermatitis herpetiformis, or we get referral from dentists with dental enamel problems. And there are also reports of delayed puberty and infertility in people with celiac disease. What is more interesting to know in this condition as well, is that some children with celiac disease may not display, again I emphasize, may not display any symptoms at all whatsoever which can make the diagnosis more challenging.

Host: Lesley, I want to follow up with a related question, and this pertains to situations where a child may have some of the symptoms that Venkat described, and the family has taken it upon themselves to begin to reduce gluten in the diet; maybe in a non-professional way, but they've read something or they've talked to a neighbor and they've decided, okay, I'm going to hold back on some of these foods that contain gluten. Is that going to impact your ability to make an assessment and to evaluate the child for celiac disease?

Lesley Stanford, MS, RD, LDN: You can appreciate that parents are looking for answers if their child doesn't feel well or if their child has GI symptoms, but a parent choosing to avoid gluten is not the best choice. They need to talk to their primary care physician. If they get a referral to see someone like Dr. Venkat, it's important that they've got a wheat containing diet because that will help with diagnosis. And so, it's a place where you need to work with your child's health care team.

Host: So that's an important point to emphasize. This sounds like it's a trap that some people might fall into. They might take it upon themselves to limit gluten, but that is going to impact your ability to properly assess the patient and eventually to make the diagnosis.

Lesley Stanford, MS, RD, LDN: And that's what parents want. Parents want to get to the answers so they can start with the plan, but parents on their own eliminating gluten is not the best choice. They need to work with their child's health care provider.

Host: Venkat, turning back to you, so the child has symptoms, the parents are concerned, as Lesley said, they want to get to an answer, they come to you, you do your evaluation. How do you begin to test and how can you confirm the diagnosis and I hope when we talk about confirmation, you'll talk a little bit with us about endoscopy.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Absolutely, well this involves a simple blood test actually to check for any specific antibodies that are associated with celiac disease. If the test come back as abnormal, then the next step is going to be proceeding with an upper endoscopy. Let me talk a little bit about the endoscopy, which many of the kids want to know.

This is the test to confirm the diagnosis of celiac disease. Basically what it means is that myself or other doctors insert a tiny flexible tube called the endoscope, which has a camera its end. The flexible tube goes into the mouth and down in into the tummy. It's like a super tiny submarine exploring inside the tummy.

The camera sends picture to a big TV screen so that we can see everything clearly. They take small pieces of tissues called biopsy and see it under the microscope to confirm the diagnosis. Before the scope, you might get some special medicine to help you relax and not feel anything. And after the endoscopy, you might feel a little bit sleepy or have a scratchy throat, but that's very normal.

You can rest until you feel better. The key part here is knowing that the endoscopy helps us to take care of the kids and make sure everything is okay inside your tummy. And again, you will be completely asleep during the whole procedure, so you won't feel anything at all.

Host: So you have laid out very nicely the procedure of endoscopy and how it's used in confirming the diagnosis. Once you have the results of the endoscopy, if it does confirm the abnormalities associated with celiac disease, and I want to hear from both of you on this; what are the next steps in terms of medical treatment? And what are the next steps in terms of dietary treatment? Venkat, maybe you can start with the medical aspect and then we'll turn to Lesley to hear about the dietary interventions.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Great question. The strict gluten free diet is the mainstay of treatment, and currently we have no medication to treat celiac disease. However, significant research is going on to explore the treatment options. Some of the clinical trials are really promising. For example, using certain medications to reduce the immune response, modifying gluten, using immunotherapy, and gene editing techniques.

But these are all still in the early stages of development. We at Duke are looking forward for these clinical trials, as this can significantly improve the quality of life. Now, let's listen to Lesley about the dietary modifications.

Lesley Stanford, MS, RD, LDN: Yes, currently, celiac disease is a lifelong illness. There are no medications to treat celiac disease at this time. We're hopeful in the future there will be, but right now it's the avoidance of gluten, and that means no wheat, no rye, and no barley. So we help patients and families navigate what does that mean in regard to grocery shopping, what does that mean in regard to planning dinners for your family.

What does that mean in regard to eating out or going to a birthday party? So we work with families to figure out what's going to be the foundation of their diet. So meats will be okay. Fruits and vegetables will be okay. All of those are safe. We're finding substitutes for wheat, barley, and rye. And in this country, wheat is a foundation grain. So we're looking for substitutes for cereals and crackers, cookies, dinner rolls, biscuits, and we're looking for all of those things to help families find substitutes. Some of those foods are more expensive and some families struggle with some food insecurities. So we are always, dietitians throughout the Duke system and other academic children's hospitals are looking to help them find ways to get their child's foods that are safe while trying to not have to spend any more money than you have to.

Host: Lesley, I appreciate the complexity of the task. I mean, you're asking young children and their families to make a major lifestyle and dietary modification. What do you do in the terms of the context of the family? So if you have a patient who has celiac disease and they can't eat a number of things in their diet, but other people at the dinner table can, or their friends at school can, or as you said, they go to a birthday party and it's available. How do you begin to help the child navigate that?

Lesley Stanford, MS, RD, LDN: Well, we try to look at age appropriate behaviors, so what we're doing with two and three year olds is different than what we're doing with teenagers at the time of diagnosis. We want to include school aged children in on decision making. So often we start with a meal like breakfast. What do you like to eat?

And then we look for substitutes that would be appropriate. You think about what most of the people eat for breakfast. There are many wheat containing foods. And so we're looking for appropriate substitutes that are foods that would be safe. For birthday parties, we want to make sure that our party guests get to enjoy the party.

So many of our children with celiac disease take their own cupcake. So they'll take a gluten free cupcake with them to the birthday party so they can enjoy the party because all of us, whether we're children or adults, enjoy food and social settings. So we want to help kids to feel confident that they can have something safe.

And often our kids will tell us that they take two cupcakes, one for them and one to share with a friend because many gluten free foods are very delicious. They're not all bad. And the cupcakes are very good.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Yeah, one thing I would like to add, is, on top of what Lesley said is, I tell the families, if you are newly diagnosed with celiac disease, my advice is to take it one step at a time. While moving to a gluten free diet may initially seem intimidating, some individuals are delighted that it opens up a world of new taste experiences and ultimately contributes to their improved health and well being.

Host: That sounds like a really positive spin that you guys are both putting on it. I like the idea that you're telling these children they don't have to do it all at once and that you're emphasizing the idea that they're opening themselves up to other dietary choices which they may not have considered in the first place. Lesley, do you want to add something to that or comment on that idea?

Lesley Stanford, MS, RD, LDN: With some of our families, they struggle with how to create a gluten free environment for one child, while they might have other children or other family members living there. Sometimes the entire family goes gluten free and the whole household is gluten free. And for some families, that's the best choice.

For other families, that one child who needs to follow a gluten free diet is partnered with one of the parents who chooses to follow gluten free with them to be their cheerleader. So families have to decide what makes the most sense for them. With many of our younger children, the entire household is gluten free, so there's not any accidental ingestion of a food that a child might not understand contains wheat.

Angelo Milazzo, MD (Host): Lesley, I'm so glad you brought that up because it actually begs a question that I wanted to ask both of you. And that is you do hear in the popular press, you see it on social media, health influencers, people advocating certain changes in lifestyle to improve general health. You definitely hear people say that a gluten free diet could benefit anybody.

Is there any truth to that?

Lesley Stanford, MS, RD, LDN: I'll answer and then we'll see what Venkat has to say. I think diet modification is difficult, so I don't think people should arbitrarily take gluten out of their diet because it can be more expensive and more complicated. There are some people who find some benefit from removing wheat from their diet because of the gluten sensitivity, so it's another component in the wheat called fructans and some people have some bloating and distention and if they find removing wheat from their diet helps them in that regard. So I think with any decision you make taking care of your child or taking care of yourself, you have to think of why you're doing it and what are going to be the financial costs and also the social cost of doing that. So it can't hurt you to be gluten free, but it's a big decision.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: No, I agree totally with Lesley. One is the higher cost, social issues, and gluten free, there are some nutrients that are missing. That's why, they need to be on some of the supplements and they don't have much fiber. So they need to be on a fiber supplements or adding some other fiber supplements.

So one, it's expensive, lot of other things. So unless they have celiac disease, it's sort of a little bit challenging for the families as well to start this gluten free diet, just for the sake.

Host: You had both mentioned in previous answers that celiac is a lifelong condition. There is no specific medical treatment for it. What do you tell patients in terms of prognosis? Is this something that they should expect to deal with their entire lives? Is it going to shorten their life expectancy? Is it going to put them at risk for other gastrointestinal disorders? What are the elements of long term prognosis that you find are important to discuss with children and their families?

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Most of us, and I'm very open in my approach in telling the families that celiac disease is a lifelong condition, which means that there is no cure for this condition at this time. However, the good news is the symptoms can be controlled and the patient can lead a healthy lifestyle by following a strict gluten free diet.

Of course, this can be challenging at times for some families and it's fundamental for the families to recognize that accidental exposure to gluten can still occur. And even with a small amount of gluten, it can trigger symptoms and cause damage. So what happens if they don't follow the extreme gluten free diet?

Untreated celiac disease can lead to various long term complications, including nutrient deficiencies such as iron and vitamin D, which in turn leads to iron deficiency anemia, fatigue. Because they are not absorbing the vitamin D and calcium, they are at risk for developing fractures. They are also at risk for developing other autoimmune conditions and certain cancers like lymphoma at a later part of their life because of constant inflammation and change in their intestinal cells.

So therefore, it's utmost importance for the families to work closely with the healthcare team, dietitian, doctors, who is familiar with celiac disease, making sure you are getting the correct nutrition you need while strictly avoiding gluten containing diets. Lesley, I just want you to add a little bit more on top of it, please.

Lesley Stanford, MS, RD, LDN: I think it's important to do that. Use a gluten free vitamin. I think it's important to look for all the choices that are out there. There are so many more choices that are gluten free than previously. I'm hopeful that there are scientists and researchers around the world that are looking for answers for Celiac disease, and I'm hopeful that we will know something more in 10 years.

Currently, there are food scientists in Italy that are learning how to remove gluten from wheat products, so some people can use a gluten free wheat, and that would be important in making pastas and making bread. And so the food scientists are out there trying to help this population by opening up new foods, and that's exciting.

Host: That is very exciting. I don't want to betray my biases here, but, kudos to the Italians for working on that problem. Lesley, I wanted to ask you, I know you spend a lot of time with patients and families, probably in many cases more time than the physicians. and other clinicians are spending, not because the physicians and other clinicians don't want to, but it's just the way our system is set up.

You're probably, in the line of fire a lot. Are there any anecdotes or stories that you think are powerful? You know, Venkat shared a really interesting way earlier for children to conceptualize this disease, but you have a lot of real world experience hearing what patients are saying. Anything in particular that you want to share with the audience?

Lesley Stanford, MS, RD, LDN: I like it when kids take charge. And we have so many kids that we see throughout the medical center that are resilient, and have good ideas and we see kids all the time that are coming up with really good ideas about how to change something or how to add something and so while avoidance of gluten is very difficult; we have children at many different ages who take it on and they are strong and they come up with great ideas and that's wonderful to see.

Host: Well that is a terrific story, and I agree, it is wonderful to see that. You know, it's amazing what, comes from our patients, sometimes. We foolishly underestimate, I think, in many cases, what they're capable of doing, and that's a great example. I love that. Venkat, I wanted to ask you, for families who are struggling with this or maybe worried about their child or children, having these symptoms, how do they reach you? Do they typically go to their pediatrician, their family doctor, their primary care clinician, or can they come directly to a gastroenterologist? What is the preferred route for them to get to someone like you and to someone like Lesley?

Narayanan Venkatasubramani, MBBS, MRCPH, MD: We at Duke are starting our specialized Celiac Disease Center soon. We'll have a team of healthcare professionals with expertise in celiac disease management.

These include myself, Lesley and Angie in another different clinic, nurses and social workers who work closely with the family to provide the personalized care tailored to the unique needs of these patients. So one of the key benefits of this specialized clinic is having a family centered, comprehensive care including diagnostic testing and expertise in interpreting test results because there could be some false positive or false negative tests which we will address to the family.

So this ensures accurate diagnosis and appropriate management of celiac disease including guidance from the dietician on following a strict gluten free diet and addressing any related complications or concerns. I know you are working very hard with Dr. Reed and Dr. Bruno Cimpatacci to streamline the whole appointment process. Meanwhile, families can schedule their appointment by patient portal, appointment hub or through their referral from primary care pediatrician at this time.

Host: Lesley as patients are getting referred as they're going through the process that Venkat outlined; are there any resources you would point them to in advance of the visit that could get them, beginning to think through these issues, particularly as it relates to dietary modification?

Lesley Stanford, MS, RD, LDN: There are several national advocacy groups, and they are, available on the internet. There's the Celiac Disease Foundation. There's the North American Gluten Intolerance Group. And what's important about these resources is they have medical advisory boards that can have doctors who review all the content and dieticians who review all the content.

So while the internet can be a sketchy place to find information for some things; it can be an excellent resource for our families. And so any of the National Advocacy Groups are good resources for information and they help with how to get ready for college. Where can you go to camp and have a gluten free diet?

What do you do when you're traveling? So these national resources are great places. We also work with some of the other places that have celiac disease centers and they have great resources and parent groups. So we're hoping maybe we can have a parent group in the future.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: I also, learned something new from the families like during the clinic visit, like what Lesley was mentioning, right? One cool thing that I learned recently from one of the families is the celiac cruise. And these a specialized cruise aim to provide a safe and enjoyable vacation experience for individuals and families following a gluten free diet.

And I believe the food items are prepared in a separate dining room by trained chef to cook with strict gluten free choices. Along with other social events, activities and educational seminars.

I understand these cruises are very popular and gets booked at least two years in advance. So that's one thing I always learn something from the parents.

Host: Well, that is fascinating. It's really interesting to see some areas of society adapting to the reality that there are so many people struggling with this disease. This has been just a utterly fascinating look at celiac disease. As I mentioned at the outset of the show, there is a lot of misinformation, a lot of misunderstanding about the topic.

I know I learned a lot. Venkat and Lesley, thank you so much for being guests on the show today. It's been an absolute pleasure to have you and to hear, these expert insights into celiac disease. I hope you will both come back and talk with me again, not only about celiac, but about other topics in gastrointestinal health. I think our listeners, parents, caretakers, children are going to be really interested to hear more about these topics in the future.

So thank you so much.

Narayanan Venkatasubramani, MBBS, MRCPH, MD: Thank you, Angelo.

Lesley Stanford, MS, RD, LDN: Thank you for having me.

Host: Pediatric Voices is brought to you by Duke Children's Hospital and the Department of Pediatrics at the Duke University Medical Center here in sunny Durham, North Carolina. The show was created by Dr. Richard Chung and by me, Dr. Angelo Milazzo. Courtney Sparrow keeps us on track and organizes the work. Special thanks to Debbie Taylor, to Dr. Anne Reed, and to the amazing producers and engineers at Dr. Podcasting. You can find the podcast and please hit the subscribe button wherever you find your favorite shows. You can connect with us online at our website which is pediatrics.duke.edu/podcasts.

You can also connect with us on all the usual social media channels and at dukechildrens.org. We would love to hear from you, so please leave us a review at Apple Podcasts or your favorite podcasting app. Thanks so much for being a part of the show. We'll see you next time.