Celiac Disease & Gluten Sensitivity – PediaCast 274
Dr Ivor Hill joins Dr Mike in the PediaCast Studio to discuss the nuts and bolts of celiac disease. We cover the cause, symptoms, diagnosis and treatment… along with the latest research topics. Find out how gluten sensitivity differs from celiac disease… and the benefits of a gluten-free diet!
Every Gift Matters – 1-855-885-5437
All About Celiac Disease (NCH Health Library)
Gluten-Free Gang (Central Ohio Support Group)
CONTACT DR MIKE – Ask Questions, Suggest Show Topics
CONNECT NOW with a celiac disease specialist from Nationwide Children’s – Referrals and Appointments
Announce 1: This is PediaCast.
Announce 2: Welcome to PediaCast, a pediatric podcast for parents. And now direct from the campus of Nationwide Children's here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone and welcome once again to PediaCast, it is pediatric podcast for moms and dads this is Dr. Mike coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio it is December 11, 2013 this is episode 274, we're calling it Celiac Disease and Gluten Sensitivity. I want to welcome everyone to the show we have another nuts and bolts program lined up for you today, this time on celiac disease and gluten. And in our usual fashion we're going to cover all the details including the cost, symptoms, diagnosis, treatment, and complications of celiac disease.
We'll also talk long term outlook and the hottest research topics as well, and then what about gluten sensitivity? Is that the same as celiac disease? If not, how's it different? And gluten free diets, they're all the rage these days and essential for those with celiac disease, but what about those who do not carry an official diagnosis of celiac disease? Is going gluten free helpful, or is it harmful? We'll consider that question. And I brought along an expert to help me this week, Dr. Ivor Hill, he is a pediatric gastroenterologist and Director of the Celiac Disease Center here at Nationwide Children's Hospital. We'll get to him in a moment but first it is December, the holidays are fast approaching now and as you know every gift matters. Here at Nationwide Children's Hospital we rely on your gifts and our effort to advance ground breaking pediatric research and to provide the best pediatric care on the face of the planet. Please consider helping us as we help kids from across the United States and around the world.
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Dr. Mike Patrick: We are back and Dr. Ivor Hill joins me in the studio today. Dr. Hill is a pediatric gastroenterologist and Director of the Celiac Disease Center at Nationwide Children's Hospital, and a professor of pediatrics at the Ohio State University, College of Medicine. He's one of the leading celiac disease experts in the world, Dr. Hill recently chair the committee of the North American Society for Pediatric Gastroenterology, Hematology and Nutrition which developed the first evidence based guidelines on the diagnosis and treatment of celiac disease in children. These guidelines have led to the identification of many more kids with celiac disease which is resulted in many more kids receiving the treatment they need. Dr. Hill has also published more than 80 papers in peer reviewed scientific journals and has authored 37 chapters in medical text books. He adds another impressive credential to his resume today: a guest appearance on PediaCast and it's with a warm welcome that we say hello. Thank you for stopping by the studio today.
Dr. Ivor Hill: Thank you for having me Mike, I enjoy this.
Dr. Mike Patrick: I really appreciate you stopping by. Let's start with this simple definition, what exactly is a celiac disease?
Dr. Ivor Hill: In simple terms we think of celiac disease as one of the auto-immune conditions, and what is really specific about this is it has a characteristic inflammatory process that leads to progressive damage to the lining of the intestine.
Dr. Mike Patrick: And that's in response to gluten?
Dr. Ivor Hill: Absolutely.
Dr. Mike Patrick: What exactly is gluten?
Dr. Ivor Hill: Gluten is a broad term that is used to describe proteins that are found in three main products, wheat, barley, and rye and the collective term for these three products is gluten.
Dr. Mike Patrick: And so exposure to gluten causes an immune response and then you have inflammation and that's going to damage the lining of the intestine that's sort of the process we're talking about. And who is affected exactly? How common is this problem?
Dr. Ivor Hill: It's probably one of the most common chronic conditions we find in the world today, it affects in most people about one in a hundred, so in the general population about 1% of the population has celiac disease, many of whom still remain undiagnosed but there are certain groups we know with they're at increase risks. For example if you have a family member who has celiac disease your chance of having celiac disease increase of a 1% to somewhere between 10% and 20%. There're also some other conditions like type 1 diabetes, people who have autoimmune thyroid disease where their risk is increased about that of the general population.
Dr. Mike Patrick: Do we see differences between ethnic groups or regions of the world? Is it more common in different countries?
Dr. Ivor Hill: We certainly know that the vast majority of Caucasians that's frequencies, it does occur in African-Americans but probably not as commonly.
The big question has always been, does it occur in Asians in East Asia? We used to think that it probably didn't because the genetic potential wasn't there, now there's emerging data suggesting that it does in fact occur in cases such as China and perhaps this is because the gluten products are being introduced there more frequently than they have in the past.
Dr. Mike Patrick: Do we see difference between men and women, any male and female?
Dr. Ivor Hill: That's very interesting, it seems to be a much more common in woman if you look at most studies it's about 2:1 both male to female. What we don't know is whether that's just because many men don't go seek help for their problems and so don't get identified but certainly it's more frequently diagnosed in women than men.
Dr. Mike Patrick: What exactly causes this? If you take the 1% who has celiac disease, what's different about them compared to those who don't have a problem with the gluten?
Dr. Ivor Hill: You have to have the genetic potential so that is a genetic pre-disposition to getting celiac disease, that's the first thing.
The second thing is you have to be exposed to gluten, once those two comes together you have the potential of creating a situation at least to celiac disease. What we don't know is whether there is an additional trigger factor and we're starting to suspect that there may be in some cases that there's something that when you've got the genetic potential and the gluten exposure there's an additional factor which then precipitate the disease, it could be an infection, it could be a major stress event in life like a pregnancy, something that may lower your immunity and the, precipitate the disease at some stage in life.
Dr. Mike Patrick: Take us down to the cellular levels, this inflammatory damage that happens, what does that look like in the intestinal wall, and what are the consequences of that?
Dr. Ivor Hill: What happens is the people who have this genetic pre-disposition, when they ingest gluten some of the proteins are not completely broken down and they cross the lining of the intestine and that sets up a whole inflammatory cascade that leads to serious of reactions which then go back and start damaging the lining of the intestine so that you got get progressive flattening of these 12 finger like villa which are very important for absorbing nutrients and it leads to the flattening and destruction with a lot of inflammatory cells in the intestine.
Dr. Mike Patrick: If normally the lining is like a plush carpet, if we decrease that you're really decreasing the surface area that you have to absorb nutrients?
Dr. Ivor Hill: Absolutely, it decreases dramatically.
Dr. Mike Patrick: Do you see malabsorption as a problem with celiac disease?
Dr. Ivor Hill: You certainly can see a frank malabsorption in some individuals, it's very rare they will have frank malabsorption where they will have a lot of weight loss because they just not absorbing nutrients, but you can also have very minor degrees where people may just not absorb nutrients such as iron or certain vitamins things that gets more subtle type of malabsorption.
Dr. Mike Patrick: What does that look like in terms of signs and symptoms? If a parent out there is worried their child might have a problem with gluten and possibly have celiac disease, what kind of signs and symptoms would they see to make them worry about that?
Dr. Ivor Hill: This is the real fascinating thing to me about celiac disease because although the problem is related to damage of the lining of the intestine, you expect all symptoms be related to the gastro intestinal tract. In fact in children many of them are still so they will have things like abdominal pain, diarrhea, malabsorption type stools, weight loss, bloating, nausea, vomiting, you could even have constipation. But interestingly as you get older you can have a variety of other manifestations that are not related to the gastro-intestinal tract. For example people with unexplained anemia as the only finding, bone disease, you can have arthritis, you can have liver disease, finding that your liver in such elevate of reasons you don't understand. Woman of child baring age can be infertile and legged corrected, they can have low birth weight babies as a problem related to it. There's a variety of skin changes, a variety of different manifestations as you get older.
Dr. Mike Patrick: You talk a little bit about the skin changes, there's a particular rash, dermatitis herpetiformis that can go along with celiac disease. Describe what that is, and do you see it more in children, or adults, or equal in both?
Dr. Ivor Hill: This is what we now regard as a skin manifestation of celiac disease it's so characteristic that if you see it you virtually don't even have to know that they got small intestinal damage, they've got it. It's characterized by this little what we call papules which occur on the extended surfaces or on the knees, the elbows, they then form little blisters, they're intensely itchy and so people scratch them by the time medical profession see them they scabbed over. And in fact if you do biopsy to the skin you can find a very characteristic finding of an appearance which tells you that this is dermatitis herpetiformis and it's related to celiac disease. It's much more common in the elderly and adults but we have seen a few cases in children, I think the youngest case subscribe is about nine years of age.
Dr. Mike Patrick: With all of these different manifestations that you can see of celiac disease, I suspect that others are pretty big differential diagnosis, there are a lot of other conditions that could cause similar things, what are some of those?
Dr. Ivor Hill: You're so right, just taking a gastro intestinal symptom there're a lot of causes of diarrhea, there're a lot of causes of abdominal pain things like irritable bowel syndrome, lactose intolerance all those things can give you very similar manifestations. And the you've a got a whole lot of other things like there's a lot of causes of arthritis, there's a lot of causes of liver disease, there're variety of reasons why you can become anemic, it's an extremely broad differential diagnosis that you have to consider when you're thinking of celiac disease.
Dr. Mike Patrick: I guess if it's not on your radar and you don't think about it, you're not going to test it then it's not going to get diagnosed?
Dr. Ivor Hill: This is one of the reasons that we in America been so far behind the rest of the world in diagnosing our cases. If you go back to the early 90's hardly any people with celiac disease ever diagnosed because nobody thought of the condition. Now that we've got the campaign out the young people are aware of it and doctors are screening for it, we're finding many more cases and we diagnose them sooner.
Dr. Mike Patrick: How do you go about diagnosing celiac disease?
Dr. Ivor Hill: it's really a two-step process, first of all you have to consider the diagnosis and then there's a blood test you can do that will screen to see if you may have celiac disease, if that test is positive the definitive diagnosis at this stage still requires an intestinal endoscopy with intestinal biopsy taking a small piece of the lining of the intestinal tract and examine it under the microscope for this very characteristic changes.
Dr. Mike Patrick: A lot of people, they may have been twain with the idea that they could have celiac disease and so they attempt a gluten free diet at home prior to seeking medical advice or trying to get a diagnosis, have been gluten free and then going in for testing, will that mess up the testing in any way?
Dr. Ivor Hill: This is so important to understand that once you go on a gluten free diet and you have celiac disease the intestinal lining can heal, the blood test can go back to normal and it's then very difficult to make a confirm diagnosis as celiac disease. It's very important to be sure of the diagnosis before you go down the street because you are talking about a lifelong dietary change, it's not something you try for little bit and then you're going to go back to a regular diet. You need to be absolutely sure that you have celiac disease before you start implementing what is really a quite a cumbersome diet and it's not easy to follow, and it has a lot of quality of life implications.
Dr. Mike Patrick: So you would encourage folks just to continue with the regular diet but seek medical attention and try to get the diagnosis?
Dr. Ivor Hill: Absolutely.
Dr. Mike Patrick: Now once you have confirmed that celiac disease is indeed the problem, how do you go about treating it?
Dr. Ivor Hill: At the moment the only treatment we have is a strict adherence to a gluten free diet, in other words taking out all foods that contain anything that comes from wheat, barley, or rye and as I say that sounds very simple but it's actually quite a cumbersome thing because this products are hiding all sort of processed foods and the potential of contamination of other foods with wheat products. It really does require a lot of education, a lot of careful reading of food labels, being very vigilant about not getting any gluten in your diet, and it is a lifelong diet, you can't stop it and go back to your regular diet at any stage.
Dr. Mike Patrick: This sounds like something that you've probably want a dietician to help educate you and figure it out.
Dr. Ivor Hill: I certainly agree, I do not have the expertise to advice people on all the ins and outs, we have a wonderful nutritionist who's really expert at the gluten free diet and she will interview every one of our patients and make sure that they are educated, they followed up, they know what to do, it is a steep learning curve in the beginning.
Dr. Mike Patrick: You talked about cross contamination, is it true that even a tiny amount of gluten can set things off again for someone who has their celiac disease under good control?
Dr. Ivor Hill: There are certain people who seemed to be more sensitive than others that even a smallest amount will give them really severe symptoms immediately. Other people can tolerate small amounts of gluten without feeling any symptoms but the problem is that even though they're not having any symptoms the damage to the lining is coming back if they continue to do that. So we don't know the minimum amount of gluten is and certainly it can be as low as half a slice of bread could do a lot of damage to some people.
Dr. Mike Patrick: And if there's damage occurring but they don't have symptoms that may put reassurance in their mind that this is OK and they keep doing it but then that damage continues to the point where then you do have the symptoms back.
Dr. Ivor Hill: You are so right and this is one of the biggest problems we face with some of our teenagers who go after their friends and knowingly cheat and don't feel any symptoms that they think that they don't have a problem and they feel like to continue to cheat but that damage comes back long before the symptoms return in some cases.
Dr. Mike Patrick: If you have celiac disease and it goes undiagnosed over long period of time what kind of complications can arise from that?
Dr. Ivor Hill: Certainly we know that people who have symptomatic celiac disease and do not get treated are at major risk for long term adverse health consequences. I've mentioned a few infertilities as one problem, a bone disease sort of progressive thinning of the bone, wasting demineralization of the bone so that increase for fractures, there is a relative increase risk for intestinal cancer, certain types of cancer we see in the intestine and there're risk for lot of whole host of nutrition deficiencies, vitamin deficiencies from malabsorption.
Dr. Mike Patrick: When we talk about diseases here on PediaCast we always talk about complication of the disease but then also complications of any treatments so you can look at risk benefit and since with the celiac disease the only treatment is a gluten free diet. Are there any problems with that? Do you worry about nutritional deficiencies based on the gluten free diet?
Dr. Ivor Hill: The gluten free diet, that's a very healthy diet emphasizing natural food s fruits, vegetables, things like that. there are potential deficiencies one is calcium, another is iron, and there are certain vitamins B1 and B2that are not present in gluten free food to the same they are in gluten containing food, such very important to have a nutritionist involved who can monitor you, who can advise you and taking supplements to replace this things in the diet.
Dr. Mike Patrick: What is the long term outlook for those with celiac disease? Does going gluten free always work?
Dr. Ivor Hill: This is the beauty of the condition, if you're going to choose one condition in this life, to have celiac disease is a good one it is tightly curable just by dietary change, it doesn't require any drugs, it doesn't have any side effects in related to drugs. When you go in strict gluten free diet in the vast majority of people symptoms will completely resolve and the intestinal damage will repair
Dr. Mike Patrick: Now you say vast majority of people so there's a tiny sub set where that may not happen?
Dr. Ivor Hill: We see the symptoms or else where there's a small group that have what's called refractory celiac disease we're not sure exactly why those people develop when they don't respond to the gluten free diet, they continue to have major problems and they're required alternative treatment.
Dr. Mike Patrick: Maybe they even have something that's a little bit different that's going on that we don't really understand quite yet.
Dr. Ivor Hill: Correct, I think you're right.
Dr. Mike Patrick: Is there a way to figure out that you have a gluten problem before there's any symptom at all. If you have a strong family history, will there be a way to prevent damage from happening in the first place?
Dr. Ivor Hill: This is the big debate game at the moment as to what we should do with people who are increase risk for celiac disease let's take a family member. You have somebody in your family with celiac disease that means everybody else in the first degree relatives are increase risk.
The question is should we be screening them at intervals to see if they have the elevated anti-bodies and then maybe go ahead and do the biopsy if they do. What we don't know is the natural history of celiac disease, we don't know that you can be a symptomatic and have a little bit of damage and yet it's not going to have any long term consequences. It's possible that you can go your entire life with a little bit of damage because you're one of the milder types of celiac disease. We also worry that maybe if you do have celiac disease in early stage we could prevent some of this other conditions going on. There's a lot of debate going on in medical circles at the moment as to what to do with those that are completely a symptomatic but an increase risk. We have the option to screen people with the blood test so if anybody wants to know if they have a problem because they're at an increased risk, we could do that for them.
Dr. Mike Patrick: But again if you've been going gluten free for a significant amount of time that blood test might not be accurate.
Dr. Ivor Hill: Absolutely, you have to be on a good containing diet to have that test be of any useful to you at all.
Dr. Mike Patrick: What are some of the hot topics right now in a celiac disease research?
Dr. Ivor Hill: I think some of the things that are really exciting, people are looking for alternatives to the gluten free diet is there some way that we could develop a tablet that you could take that would help you completely digest these peptides, these proteins so that they don't cause any damage? There's work going on for that, there's other work going on looking at a vaccine that may be able to immunize you against the infection of gluten and that's very exciting to me this is in Australia and there's some studies going on there as well. Other avenues looking at alternatives is can we come up with medications that will block the inflammatory path ways that lead to the damage? My concern there is that anything we do must be as effective as the gluten free diet, and as safe as a gluten free diet this things will all have potential side effects there's a lot going on in that field there as well. There's also some interesting, are we able to prevent celiac disease by modifying feeding practices in infancy?
There's some evidence suggesting that if you have prolong breast feeding and you introduce small amounts of gluten between four and seven months of age you can prevent the disease but we certainly will delay the answer to the disease on those so there's exciting avenue going on there.
Dr. Mike Patrick: What is the difference between celiac disease and then gluten sensitivity? What I mean by that is gluten free diet is becoming a fad to a degree where people do it and they think they feel better. Did those folks have some degree of celiac disease?
Dr. Ivor Hill: This is a very hard topic at the moment if you look at the dietary habits in the United States at the moment you'll see that there's been a progressive and rapid rise in the number of people who are going gluten free. In fact it's estimated there's going to be a $6.4 billion industry in the next couple of years for gluten free foods. Many of these people are going gluten free for no medical reason at all I think some of it has become the fad diet as you say, there are some people who genuinely feel that they are better when they're on a gluten free diet. These are people who have symptoms that are very similar to celiac disease it could be abdominal discomfort, bloating, fatigue, just not feeling well and they go on a gluten free diet and they feel much better. Now the difference between celiac disease and non-celiac gluten sensitivities, if you study those people that don't have celiac disease you'll not have any of the blood test that are positive if you biopsy and there's absolutely no changes on their biopsies and they have no damage to the lining at all, but when they take gluten out of their diet they feel better. With the debate is going at the moment is we don't know whether it's the protein content of the gluten or whether it's everything else you take out of the diet when you put them in a gluten free diet and that's the carbohydrate fractions that change and things like that. It may be this other components in the gluten free diet that are making them feel better.
Dr. Mike Patrick: Maybe there's benefit to eating lots of fruits and vegetables and minimizing grains.
Dr. Ivor Hill: One thing I do want to emphasize, you cannot make a diagnosis of non-celiac gluten sensitivity until your first excluded celiac disease and possibly a way to allergy as well.
Dr. Mike Patrick: And again in order to do that you have to be on a gluten containing diet before you get the testing done?
Dr. Ivor Hill: Correct, absolutely.
Dr. Mike Patrick: Tell us a little bit about the Celiac Disease Center here at Nationwide Children's Hospital.
Dr. Ivor Hill: I'm very excited about this we've assemble a huge team of people with a lot of expertise in addition to our physicians who have expertise in celiac disease, we've got this wonderful nutritionist who's really expert, we have a pathologist who's outstanding and has got some special techniques for helping us try diagnose difficult cases where it's not obvious in the first biopsies, we have endocrinologists, we have social workers, we have psychologist if we need them.
So we've got this big group of people and our objectives are to provide expert, timely, efficient clinical care but we also have a quality insurance improvement program that's going on, we have large educational program which is aim not only at parents and patients but also to physicians to try and help them identify patients more readily, and then we're going to have a research component that we're just initiating at the moment so it's a comprehensive center that we're going to try and give the best care possible.
Dr. Mike Patrick: I will put a link in the show notes for this episode 274 over at pediacast.org and the link simply says, "Connect now with a celiac disease specialist from Nationwide Children's", and this is just for our referrals and appointments. It really puts people in touch with our welcome center so that they are able to get in touch with you guys and get an appointment. We also have some other links in the show notes for you as well, there's information page from the Nationwide Children's Health Library it's called All About Celiac Disease there's also a central Ohio support group called the Gluten Free Gang I'll put a link to that.
And then the dietician that you talked about she's written some blog post for us and one is a Gluten Free Diet Healthy For My Child and another was Gluten Free Summer Time Recipes and so I will put links in the show notes for those as well so people can find them.
Dr. Ivor Hill: Wonderful, thank you.
Dr. Mike Patrick: We really appreciate you stopping by today and talking to us about gluten and celiac disease.
Dr. Ivor Hill: It's been my pleasure, thank you.
Dr. Mike Patrick: We're going to take a quick break and I'll be back to wrap up the show right after this.
Dr. Mike Patrick: I just want to thank everyone for taking time out of your day to make PediaCast a part of it. Again thanks to Dr. Ivor Hill for educating all of us on celiac disease and gluten sensitivity. I want to remind you the iTunes reviews are helpful as our reviews on iHeart Radio, those are helpful too so if you do check out PediaCast or PediaBytes on iHeart Radio Talk be sure to leave a comment which will help propel us up to directory and in front of the eyes of more moms and dads. Your links and mentions, and shares, and re-tweets, and re-pens and all those things are important on our social media sites. PediaCast is on Facebook, twitter, Google Plus, and Pinterest and be sure to tell your family, friends, neighbors, and co-workers about the show and also your child's doctor so they can share PediaCast with their other patients and we do have posters available under the resources tab at pediacast.org.
Don't forget if you have a question you'd like to ask or idea for a topic on the program, or you want to point me in the direction of a news article or a journal article it's easy to get in touch, just head over to pediacast.org and click on the contact link. That wrap things up for today, until next time this is Dr. Mike saying stay safe, stay healthy, and stay involve with your kids, so long everybody.
Announce 2: This program is a production of Nationwide Children's, thank you for listening. We'll see you next time on PediaCast.