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Medical Intel

Nov 29, 2018

Doctors know that celiac disease is a real medical condition, but too many people treat it like a trendy diet choice. Dr. Z. Jennifer Lee discusses the dangers of gluten exposure in patients with celiac disease.



Intro: MedStar Washington Hospital Center presents Medical Intel where our healthcare team shares health and wellness insights and gives you the inside story on advances in medicine.

Host: Thank you for joining us today. We’re talking with Dr. Jennifer Lee, a gastroenterologist at MedStar Washington Hospital Center. Welcome, Dr. Lee.

Dr. Jennifer Lee: Hello! Nice to be here.

Host: Today we’re talking about treatment options for celiac disease, an autoimmune disorder in which patients suffer intestinal damage after eating gluten, a protein found in wheat, barley and rye. There are currently no effective celiac disease treatments approved by the Food and Drug Administration, but a promising new drug is headed into phase two clinical trial. Dr. Lee, could you give us a brief overview of what celiac disease is and how it affects patients’ quality of life?

Dr. Lee: Sure. Celiac disease is a disease process which falls under the spectrum of gluten-related disorders. It is something that we know a lot about. It’s a genetically-based disease. It happens to genetically susceptible individuals where upon intake of gluten, they can get a reaction. It’s an immune mediated reaction. And so, what we used to tell patients, was that they were allergic to gluten. So, as we delve a little bit deeper into the topic today we’ll see that there are other gluten-related disorders that result in symptoms even without the diagnosis of celiac disease. So, another one would be wheat allergy. And another one that is actually quite commonly talked about these days is non-celiac gluten sensitivity. But getting back to celiac disease, the patients can manifest in many different ways--It can be chronic diarrhea, it could be bloating, it can iron deficiency anemia. And so, it needs to be on our minds when we see patients with these possibly non-specific symptoms.

Host: Why is the advancement of this drug, Nexvax2®, into phase two clinical trial exciting for the celiac community?

Dr. Lee: So, it’s exciting and not. Right now, as you mentioned, there are no medications for celiac disease. We have a very good treatment for celiac disease and it’s dietary--we avoid gluten, and it works for the vast majority of our patients with celiac disease. But, the difficulty is inadvertent gluten intake. Sometimes there’s cross contamination if you’re eating out. It can be an issue, and so I think it would be nice to have some sort of medication that helps with that. It’s also important to remember, though, that this is a phase two trial, and so, again, the majority of drugs that go in to phase two trials actually don’t make it past phase two. So, while it is exciting, I think we have to keep in mind that the most important thing is gluten avoidance.

Host: How is it that a disease as common and well-known as celiac disease has no effective treatments?

Dr. Lee: I think it’s because it’s a complex disease. It’s a genetically based disease. However, not everybody who has the genetic predisposition gets celiac disease. It’s a very complex thing, and where you have the propensity, genetically, and then you have other factors, and we’re not entirely sure what all those factors are. And so, it’s difficult to pinpoint or target something exactly. The medication that’s in trial now, the target would be a genetic target but, we don’t know with 100 percent clarity what causes it. So, it’s hard to say.

Host: How long would a person have to suffer symptoms before they go see a gastroenterologist for a possible celiac diagnosis?

Dr. Lee: You know, I’ll be honest with you, I’ve seen the whole spectrum. I’ve seen patients who’ve had diarrhea for many months without a diagnosis and they come and we’ve made the diagnosis at that point. But I’ve also seen patients who don’t really know that they’re anemic and they have iron deficiency anemia and we find that on testing and we’ve been able to make a diagnosis that way.

Host: What are some of the common and more uncommon symptoms of celiac disease?

Dr. Lee: Within celiac disease, very commonly we’ll have chronic diarrhea, weight loss, joint pains, even headache, rashes. So, as you can see, some of them can be very non-specific. And the important thing to note here is even across the different gluten-related disorders, you can get these types of symptoms. For instance, non-celiac gluten sensitivity and celiac disease can both present with brain fog - that’s a very common complaint that you hear about. So, very important that patients with these symptoms see a gastroenterologist and nail down a diagnosis.

Host: How can gastroenterologists help patients understand whether they have celiac disease or another gastrointestinal condition?

Dr. Lee: There are significant differences in long-term health consequences, depending on what you are diagnosed with. It’s very important to be diagnosed with celiac disease because, down the road, you need to be monitored for certain things like autoimmune diseases, even certain cancers, down the line. Whereas non-celiac gluten sensitivity and even wheat allergy may not necessarily result in this same long-term sequelity.

Host: If a person’s really struggling with these symptoms, what would you recommend as their first action to get care?

Dr. Lee: To definitely come see a healthcare professional. Whether that be their primary care doctor or if they want to come straight to a gastroenterologist, that’ know, we are happy to see these patients. Diagnosis involves some blood testing, and, in most cases, an upper endoscopy, where we take samples of the small intestine to evaluate for any signs of inflammation.

Host: Could you talk a little bit about your patient population?

Dr. Lee: Absolutely yes. I would say, when we first started learning about celiac disease, you would think that it was a disease found only in Caucasians or those of European ancestry. But now we’ve learned that really it can be in any population, any race. And, to follow that, it’s in anybody of any age. It’s commonly diagnosed in childhood, but I have made plenty of diagnoses in adulthood.

Host: What kind of damage do you see in your patients after years and years of symptoms?

Dr. Lee: I think the most dramatic patient I’ve seen, and dramatic being that when I first met him, he was emaciated. I mean, he had lost so much weight. He showed me a picture of his driver’s license and how he was before his symptoms started - and they didn’t start until he was in his 40s. But he looked like a completely different person. The weight loss was very marked. And so, after making the diagnosis and after starting him on a gluten free diet, and seeing him in follow-up afterwards, it was like seeing a brand-new person. It was amazing. I still keep in touch with him, to this day, you know, there’s not much that I need to do for him now that he knows exactly what he can eat, what he can’t eat. He has appropriate follow-up. We check his vitamin levels once in a while. But, I think it’s’s such a great feeling when you see that they have returned to, you know, their normal life. Yes, they need to change the way they eat but it’s possible to feel healthy and to feel like you can go out and have a normal life. There’s data to suggest that, in children, the thought of having celiac disease produces anxiety and reduces quality of life. And so, we know it is something that people think about and worry about so I think, you know, even in the quality of life aspect--eating out, being social--it’s rewarding to see that we can, you know, get someone to that point.

Host: How is it that a disease that has genetic components can manifest so late in somebody’s life?

Dr. Lee: There’s so much that we still don’t understand about celiac disease. We are not sure why, in one person, it would manifest in childhood and another it manifests in adulthood.

Host: What do you say to people who say, “Oh, celiac disease is just a trend and it’s not real.”

Dr. Lee: I think I just tell them what we know, based on the evidence that we have. What trials we’ve done. And I explain to them that there IS a spectrum of gluten related disorders - celiac disease, wheat allergy, non-celiac gluten sensitivity. And, you know, it can be a bit of a fad thing. I mean, right now we’re all hearing about a gluten free diet. I would say that many people who are on a gluten free diet don’t have a gluten related disorder. But there are a subset of people who don’t have celiac disease yet feel very poorly on a gluten containing diet. So, these would be the non-celiac gluten sensitivity patients. And, you know, it is a very poorly defined disease but yet, it’s there. There is some evidence to suggest that there may be a little bit of inflammation in these folks as well but we’re very early on in our research in that aspect. You know, all three of these conditions have overlapping features, which is why it can be confusing. So, with the fad diet - of a gluten free diet - it’s, I think, both a good and a bad thing. I love that it allows my celiac patients to have more possibilities, especially going out to eat. Many restaurants offer a gluten free diet now and I think that’s great because before, patients were stuck with very little to eat. They would have to cook at home, stick to maybe like a tiny little space within the grocery store where the gluten free stuff was. But now, you know, the possibilities are much more. However, having said that, because it is a bit of a fad, I think some people tend to maybe roll their eyes at it and say, ‘Oh well, you know, you don’t really have some allergy or sensitivity or whatever, you’re just following this fad diet.’ And so, the danger in that would be that maybe like a restaurant person would not take it as seriously and not take into account the cross contamination that’s possible. I mean, some people with celiac disease really just take that one exposure and they can, you know, throw them into their symptoms. So, it’s both a good and a bad thing. But, again, it’s important, you know, from patient to patient like, to know what it is that you have and what is potentially life threatening and what is not. I just want to bring up another point and that to test positive for celiac disease, you have to be on gluten at the time. So, you have to be eating gluten and so you’re therefore not feeling well, but you need to have that exposure in order for us to pick it up on our testing.

Host: You mentioned that there are three main conditions. Could you give us a small recap of each of them?

Dr. Lee: Sure. Well, there’s celiac disease and that, we’ve spoken about, it’s in genetically susceptible individuals. They have this proven inflammation in their small intestine resulting in a gamut of symptoms. There’s wheat allergy and that is your typical ‘quote/unquote’ food allergy where you, you know, can potentially get anaphylaxis to it. And then there’s non-celiac gluten sensitivity and that’s the very poorly defined one. But, again, there can be a lot of common symptoms. But, I think that, based on my patients, what I usually hear, is the abdominal pain, the fatigue, and the brain fog. Those are three of the very common ones for gluten sensitivity.

Host: Are there any health benefits for going gluten free for people that don’t have a gluten sensitivity or celiac disease?

Dr. Lee: That’s a good question and I think it’s going to be a bit of a complex answer. When people tend to take out gluten they do take out a lot of carbs and so, you know, limiting your carb intake can be healthy. But what are you replacing that with? Are you replacing it with, you know, a bread that you’re buying in the gluten free aisle, in which case, that’s actually a heavily processed food item. It can be very high in calories and so it makes a difference what you’re replacing that food with. One thing we do need to think about though is, are there any consequences of going on a gluten free diet. And the answer to that is potentially yes. We do have some studies showing that there can be nutrient or/and micronutrient and vitamin deficiencies, you know, even ten years down the road. And these are based on our celiac patients, but we think it’s due to them being on a gluten free diet for a long period of time. We’ve seen some data showing that patients who have been on a gluten free diet for a prolonged period of time are more obese than patients who have not been on a gluten free diet. And then not to mention the cost. You know, it’s’s not cheap buying the foods from the gluten free section.

Host: I’ve noticed that a lot in grocery stores, it seems like any kind of health product seems to be more expensive than the assumed not healthy product.

Dr. Lee: And I think part of that is a little bit of marketing preying on consumers. If you’re in the shampoo aisle and you see a shampoo labeled gluten free and it’s three times the price of regular shampoo, people don’t necessarily know that. They just think that gluten is bad, and they may buy the shampoo that’s gluten free, but really that makes no difference. There was one small study suggesting that in adults who follow a gluten free diet, they may be at risk for cardiovascular complications because, the thought process was that they were consuming less whole wheat. But again, very early on in our research regarding this. You know, the most scientific way to go about it would be to remove gluten from your diet and then you’ll notice that you feel better. And when you reintroduce gluten, do it in a blinded fashion. Then introduce something that you may or may not know whether it has gluten or not and see how you feel. Maybe your friend knows, maybe your friend knows which bread is the, you know, gluten free bread and which one’s the regular bread. But, I think mostly, it’s how you feel - how you feel on it, how you feel off of it.

Host: Thanks for joining us today, Dr. Lee.

Dr. Lee: Oh, you’re very welcome. Thanks for having me.

Conclusion: Thanks for listening to Medical Intel with MedStar Washington Hospital Center. Find more podcasts from our healthcare team by visiting or subscribing in iTunes or iHeartRadio.