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MedStar Health DocTalk
Living with Celiac Disease
In this episode of MedStar Health DocTalk, host Debra Schindler sits down with gastroenterologist Dr. Jose Parungao to delve into celiac disease, a chronic immune disorder affecting approximately 1 in 100 people in the U.S. As they explore the intricacies of this condition, Dr. Parungao explains how gluten—a protein found in grains like wheat, rye, and barley—triggers an immune response that can lead to a host of health issues, including malabsorption of essential nutrients.
Listeners will learn about the varied symptoms of celiac disease, from gastrointestinal distress to neuropsychiatric manifestations, and the challenges of diagnosis that often lead to misinterpretation of symptoms. Dr. Parungao discusses the importance of screening, the diagnostic process involving blood tests and biopsies, and the critical role of a gluten-free diet in managing the disease. With insights into potential genetic links and the importance of family testing, this episode provides a comprehensive overview for anyone curious about celiac disease or seeking to understand its long-term implications.
For more information on this podcast, or to schedule an appointment with a gastroenterologist in the Baltimore, Annapolis, Bel Air area, email debra.schindler@medstar.net.
If you would like to provide feedback on this podcast, or get more information on hand tumors, send Debra an email: debra.schindler@medstar.net.
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Comprehensive, relevant and insightful conversations about health and medicine happen here when MedStar Health dog talk it's estimated that 1 in every 100 people in the US have been diagnosed with celiac disease, a chronic immune disorder caused by an intolerance to ingesting a protein called gluten. Gluten is found in grains like wheat ry and Farley, but it may also be found in medications and cosmetics. The consequences are chronic and so varied that diagnosing celiac disease is often missed or delayed. Some experts estimate as many as 2.4 million Americans could be suffering the symptoms of celiacs disease and not even be aware of it. Thats why Im talking with gastroenterologist Dr. Jose Parungao for this episode of MedStar Health DocTalk I'm your host Debra Schindler. Thanks for being here to help us understand this disease.
>> Dr. Jose Parungao:Dr. Parungao thanks for having us. Debra Definitely a pleasure to be here.
>> Debra Schindler:Celiac is described as an immune disorder, which means that when a person with celiac disease ingest gluten, their immune response mounts a sort of defense against it. What actually is happening.
>> Dr. Jose Parungao:Right. So for celiac disease, as you've alluded to, once an individual with actual celiac dise is exposed to gluten in the diet, part of the immune system recognizes gluten or gliadin as a, foreign and it triggers an immune response typically mediated by a specific segment of the immune system called T cells. Once that immune response is triggered, and this typically occurs in the lining of the small bowel, an inflammatory response to that exposure over time leads to viilous atrophy. So what I mean by that is in the bowel, in the very microscopic level, you see finger like projections called villi. And these villi are responsible for absorption of nutrients in our diet. So over time, when that sort of atrophy or when those finger like projections start eroding or flattening out, the absorptive capacity of the small bowel is greatly diminished leading to gross malellabsorption over time.
>> Debra Schindler:Which could have I guess, a lot of different consequences on one's health. Obviously if they're not absorbing vitamins and things.
>> Dr. Jose Parungao:Absolutely. And that's typically one of the presenting symptoms. So we in our practice see a lot of patients referred by the primary care physicians for issues such as iron deficiency. The prevailing thought is they're worried about bleeding. But in celiac disease it's actually not bleeding, but in, or an inefficiency in absorbing iron, which is the pathology. So that's one but other manifestations, for example, if you're not absorbing vitamin D properly, is that can lead to bone loss, osteoporosis and things of that nature.
>> Debra Schindler:But a lack of absorption would take a while really for those symptoms to reveal themselves. What about some other symptoms of celiac disease that might be more immediately experienced by a person?
>> Dr. Jose Parungao:Yes, actually, that's a good point. So typically when malabsorption M occurs, that exposure to gluten has occurred over time. But some earlier presentations can be things such as diarrhea and, believe it or not, bloating. I've d. Over the course of the years, I've diagnosed quite a few patients, on the basis of bloating alone, and they turn out to have coliac disease on further testing.
>> Debra Schindler:So I'm also seeing some other symptoms that might be fatigue. Skin rashes.
>> Dr. Jose Parungao:Yeah, so the skin rashes associated celiac disease is a separate, disease entity called dermatitis herpetiformis. So as the name implies, the rash is. Resembles herpes, but on the pathology, when they do skin biopsies, it's more consistent or more diagnostic actually of celiac disease. But it's important to note that not all patients with celiac disease develop, this condition. But yes, that's manifestation of celiac disease, which is specific to that condition. other manifestations that have been described, and I've seen some of it, although the pathophysiology is unclear, is that some patients do develop neuropsychiatric symptoms such as mood disorders, some of it, at least neurologically, potentially could be explained by the malabsorption of B vitamins, for example. So certain neuropathies can be seen in patients with celiac disease. But the psychiatric standpoint, as I've mentioned, they've been described in the literature, but it's been poorly understood thus far.
>> Debra Schindler:Well, that's quite a stretch from mood disorders to fatigue and diarrhea. I mean, who's putting their finger on celiac disease? I would think that with those symptoms, because those could be so many different things. Right. Is it hard to diagnose?
>> Dr. Jose Parungao:Yes, actually, that's a good point. And that probably is why, celiac disease isn't tested for as often as it should be, in my opinion. so celiac disease actually, has been described in terms of its presentations as these are the classic, type of celiac disease, which is what we've talked about in terms of diarrhea, ah, iron deficiency, anemia, but there's also an atypical, presentation Those who present with very minor GI symptoms, for example bloating as I just described earlier, but happen to have very subtle clues in their history such as the anemia or osteoporosis. there are also patients with celiac disease, who present subclinically, meaning they have no symptoms whatsoever and celiac disease is diagnosed incidentally. So for example, I'll give m just one example. Let's say I'm doing procedures like I was today for other reasons. And on biopsies they're found to have findings highly suggestive of celiac disease and they have no symptoms. But as I mentioned, they can present in that fashion. There's also a presentation called latent. So essentially those are patients who've been diagnosed with celiac disease in childhood, respond to treatment and then when they enter adulthood they essentially enter remission or a silent phase of the disease. And is it possible that they've.
>> Debra Schindler:Grown out of it?
>> Dr. Jose Parungao:Yeah. So that's, that's the, that's the thinking when it comes to latent celiac disease is that you know, they're treated with a gluten free diet, symptoms resolve entirely and even with the reintroduction of gluten, interestingly, some of these patients actually continue to do well. So yes, there are cases that have been described that are consistent with that, but in my experience I actually haven't come across that as of yet.
>> Debra Schindler:The difficulties in diagnosing that you just described. It makes sense then that the long term implications of celiac disease are the greater risk. And I'm going to go down down a list of these and get you to comments. some of those are. You mentioned the osteoporosis, gallbladder malfunction, heart disease, infertility and miscarriage. These are all very serious. Iron deficiency, anemia. You mentioned that with lactose intolerance, which is how it really is probably first understood by someone. Right. That they are lactose intolerant.
>> Dr. Jose Parungao:Right.
>> Debra Schindler:Liver failure, neurological symptoms including attention deficit or hyperactivity disorder, headaches, lack of muscle coordination, seizures, dementia, neuropathy, myopathy, multifocal.
>> Dr. Jose Parungao:I'm not even leuko encephalopathy.
>> Debra Schindler:thank you. Pancreatic insufficiency, small intestine cancer, M. Non hodgkins, lymphoma, corre. Those are some really serious health concerns if celiac disease is left untreatedct.
>> Dr. Jose Parungao:Absolutely. So a lot of these conditions can persist and impact one's health significantly if celiac disease is left Untreated. Absolutely. Fortunately, a lot of these are actually reversible with the introduction of the treatment, which is the gluten free diet. There are a couple here, which you've mentioned, which is, small intestinal cancer, non Hodgkin's lympoma, which is seen in the fifth presentation of celiac disease, which is refractory celiac disease. So that's where celiac disease, despite the gluten free diet, persists. the type of lymphoma in this particular situation is called enteropathy associated T cell lymphoma, or eatl. So as the name implies, it's a lymphoma that develops over time when refractory celiac disease is untreated. And again, despite the gluten free diet. These patients unfortunately develop these conditions and the treatment involves immunosuppression to varying degrees.
>> Debra Schindler:But are you still, as a gastroenterologist, involved with the care of someone there, or they then now moved on to a medical oncologist for those cases?
>> Dr. Jose Parungao:So, yeah, I think once, ah, lymphoma develops, yes, then, we would need the help of an oncologist, in treating that specific condition, but we would still be a part of that patient multidisciplinary care.
>> Debra Schindler:I'm, imagining that there are people listening to this and they're thinking, oh, my goodness, she just read off a whole list of things that are very concerning and I have diarrhea all the time, or I have headaches all the time. Could I have celiac disease? When's the right time for someone to go check out their concerns? And what is the diagnostic process?
>> Dr. Jose Parungao:Right. To answer your first question, I think, as soon as any of those red flags come about, definitely consult your primary care doctor and talk about celiac disease. And if the primary care physician may not necessarily be as comfortable with a diagnosis, and by all means, we're happy to see them. Going on to your second question. In terms of diagnosis, the first screening test would be a blood test. The blood test would detect antibodies to gluten. there are several, involved. But the screening tests actually come in a sort of a package now where all the antibodies are checked simultaneously. And if it is positive, the gold standard is a biopsy, which we obtain during an upper endoscopy, where we obtain biopsies in the soma small bowel. And that would be the gold standard of diagnosing celiac disease.
>> Debra Schindler:How are you extracting that biopsy?
>> Dr. Jose Parungao:An upper endoscopy? Yes. so essentially, to Describe that procedure, which we do in our practice routinely is you come into an endoscopy suite, you receive anesthesia. Ah, an endoscope, which is a flexible camera, is put down your mouth, into your esophagus and into the stomach and into the first part of the small bowel, which is right past the stomach. And that's where we obtain those biopsies.
>> Debra Schindler:I assume that's an outpatient procedure. People come in, they go home the same day.
>> Dr. Jose Parungao:Correct. It's a very similar procedure to a colonoscopy. We just go the other end.
>> Debra Schindler:Okay.
>> Dr. Jose Parungao:Right.
>> Debra Schindler:I'm reading now about, a breath test to test celiac disease. How does that work?
>> Dr. Jose Parungao:I'm not aware of a very good breath test for celiac disease. As I mentioned, as of the moment, the standards of care still involve doing, the blood test to check for antibodies and then the biopsies. But more recently, in terms of diagnostics, one of the things that's been introduced because there are certain situations where there certain diagnostic dilemmas. so for example, a patient comes in with a positive blood test, we go in, we do the biopsies. The biopsies are non diagnostic or equivocal. Then what then? Right, so there's discordance. There's one thing telling you I have it, there's another thing telling you I may not have it. So one of the things that's been proposed recently in the updates to diagnostic testing is to do genetic testing. So one of the identified, CAUS target is in terms of genetic predispositions is something called human leukocyte antigen or HLA. specifically DQ2 and DQ8. So those are genotypes that are identified using a blood test. So if abnormalities are identified, then that sort of breaks the tie. Right. So, in that situation where there's discordance between biopsies, blood and antibodies, a positive, HLA test would then clinch the diagnosis or rule it out. So if a patient were negative for both DQ2 and DQ8, the diagnosis of coliac disease is extremely unlikely. The experts, hypothesize that majority, or if not all patients with actual coliac disease are positive for one or both of these genotypes.
>> Debra Schindler:Well, since the data puts misdiagnosis at such a high percentage, what is celiac often mistaken for?
>> Dr. Jose Parungao:By far, I think in my practice at least, it's often punted off as irritable bowel syndrome. You know, so patients with those very nonecific symptoms, bloating, diarrhea, Ah, because to Be fair. there is disease entity with irritable bowel syndrome with diarrhea predominance, for example, which is more of a functional disorder. But clearly celiac disease has a biologic genetic component to it. And I strongly encourage testing for celiac disease before such a diagnosis is made.
>> Debra Schindler:Let's say the genetic test comes back positive for the genome. Does that suggest that other members of the family may also have celiac disease?
>> Dr. Jose Parungao:That's a great question. And that's actually, something I do encourage my patients to advocate for. because there is a strong genetic component to it. And in fact I have patients who have come to see me because, hey, my sister was diagnosed with coliac disease. I'd like to get tested. And yes, that certainly is, something to strongly consider. And I've certainly done that for patients.
>> Debra Schindler:What's the average age of the patients coming to see you for this?
>> Dr. Jose Parungao:Actually, that's also a good question. I wouldn't necessarily put the. Because classically celiac disease has been diagnosed, you know, in children, adolescents, but I've diagnosed celiac disease in patients as late as their 60s. So it's, that sort of thinking has kind of, shifted. And as you've noted earlier, the prevalence of celiac disease currently is estimated to be 1%. But that number may very well be higher because again, it's not being tested for as much. It's not in the general GEAL as of yet.
>> Debra Schindler:I'm curious about that. People coming to you for the first time for celiac disease in their 60s is, are they ignoring symptoms? Did they have it all along or has it just gotten worse because of those long term implications?
>> Dr. Jose Parungao:Right, right. So in that situation, patients may have had, symptoms all their life and misdiagnosed by other clinicians, for example, or yes, they've developed something like iron deficiency anemia, for example, and were sent to us to evaluate that. But they end up diagnosing them with celiac disease instead of bleeding, for example. So celiac disease never ceases to amaze me in terms of how patients present. Because there's, what I've learned over the years is there's definitely no one size fits all kind of, patient, when it comes to coloct disease.
>> Debra Schindler:Okay, let's talk about the treatment, which is kind of disturbing to me because you've already said that the only treatment is to stop ingesting gluten.
>> Dr. Jose Parungao:Right. So. And as of now, it is the only approved treatment for celiac disease. If you think about it. Right. Effects of celiac disase are seen when one is exposed to the offending agent, which is gluten. So I think one way to think about it ism, and it's not the same, but it's at least an easy way to understand it. If one is allergic, for example, to nuts, it sounds intuitive to never expose yourself to nuts, right? So with celiac disease, I think the reason it's a little bit more challenging to grasp when it comes to avoiding gluten is that the effects aren't as immediate as it would be for an allergy. Right. So for, someone with a nut allergy, they get exposed to nuts more often than not. They need an EpiPen, because if not, something catastrophic may occur. With celiac disease, a patient can ingest gluten today and not feel the effects maybe a few days down the road or even weeks down the road. It depends on the amount of gluten they're exposed to. But yes, it's the only, recognized way of treating celiac disease as of now, because without the exposure of that offending agent, the immune response isn't mounted, allowing your small bowel to go on living its happy life.
>> Debra Schindler:Moving forward, I think after our conversation today, I'll have a greater appreciation for when I see gluten free on labels of food. What are some of those foods? You know, we talked about the grains, wheat, rn, barley. Where else might gluten be found that people should be wary of?
>> Dr. Jose Parungao:So that'that's a great question. So aside from the normal breads, you know, containing any of these agents, things that we don't think about too much are, beer, for example, ale, lager, and even malt vinegar. So all of those things would likely contain gluten. But fortunately, to your point in terms of gluten free, they've actually started manufacturing gluten free beers now. And I tell that to my celiac patients who, you know, it's one thing I tell them all the time is it's not like a death sentence. It's not the end of the world. A lot of manufacturers have really recognized that this is more prevalent, than we once thought. And so there's technically a market for that. I'm sure if you've perused groceries recently, there's likely to be a gluten free section. Now that's been a godsend for our celiac patients.
>> Debra Schindler:I actually just, you know, yourself, phone is always listening or paying attention to what you're looking up, and it sent me a video ad for an app that you can download and you put in that you have celiac disease and it will list all of the foods that you shouldn't, you should not eat.
>> Dr. Jose Parungao:Right.
>> Debra Schindler:It was it was actually a really impressive guide or tool. Do your patients ever use that, that you have any feedback?
>> Dr. Jose Parungao:So, so some of them have reported using apps to help them out in terms of, of the gluten free diet. But I think this is a good segue into part of the holistic approach when it comes to the management of celiac disease. The acronym that they like to use in terms of management is, not surprisingly, celiac. So C is the consultation with the nutritionist. So that's key. Whenever I diagnose some of celiac disease, involving a nutritionist who has experience with the gluten free diet is very important education about you. That's the E part about the disease. L is the lifelong adherence to the gluten free diet. There's just no getting out of that. I is identifying deficiencies such as iron deficiency, vitamin D deficiency, the B vitamins, A is, access to support groups or advocacies, for celiac disease and C is the continued follow up with a gastroenterologist and the rest of the team members to manage the disease effectively.
>> Debra Schindler:What other products do people need to be wary of? You know I mentioned before cosmetics and shampoos, but what else?
>> Dr. Jose Parungao:So apparently there are some, medications that are, when they're manufactured, may contain gluten. So'that's one area to be mindful of. So definitely reading the labels or key. The other thing is oats. oats seem to be a, topic that needs to be monitored very closely. The current guidance is that patients with celiac disease can consume oats, but there's always the thought of how the oats were processed, for example. So if oats were to be introduced, it should be under the close guidance or monitoring of both nutritionist and the gastroenterologist.
>> Debra Schindler:The most recent advancements in treating celiac disease include enzyme therapies showing some promising developments and treatments that could help break down gluten in the digestive system, potentially reducing symptoms for those who accidentally ingest gluten. What can you tell us about that?
>> Dr. Jose Parungao:So the treatments that are still in development, so they're not yet approved. There are promising aspects of the therapies. there are also some other therapies that include genetically modified wheat products that don't contain gluten, for example. But again all of these are still, in development. So, so I can't actually recommend any of them at this point. it still goes back to the gluten free diet as of now.
>> Debra Schindler:Fair enough. What about vaccines?
>> Dr. Jose Parungao:Yeah, so I think I've read about some of these but again I think it's too early on to really look into that. but if the clinical trials are successful then that would be obviously game changing. But I'm just wondering who to administer these vaccines to. It may be targeted in terms of family members, things of that nature. But, but I can't really think of a population based strategy when it comes to such vaccines. Potentially patients who test positive for those HLA, DQ2 and DQ8 things of that cause, there are certain members of the population who may test positive for those genotypes but not necessarily have the phenotype of celiac disease.
>> Debra Schindler:As a gastroenterologist you probably see so many different issues. How often do you treat celiac? Is it very common?
>> Dr. Jose Parungao:It would probably depend on who you're asking because in my practice I do check for celiac disease a lot. Like I said, it could be a very innocent presentation and I would have a very low thresheshold for checking it. But I think because of that I tend to diagnose celiac disease, you know, more often. It's because I do check for it more. But yes, it's I do have quite a sizable complement of patients with celiac disease. But fortunately, at least in my practice, I haven't seen the refractory ones as of yet because coliac disease as mentioned, as long as they're very, very vigilant about the gluten free diete, they tend to do very well afterwards. If anything. The only patients who tend to relapse, by far the most common reason they do is contamination. So what I mean by that is at home they prepare their foods very well and the moment they eat out, that's when they run into problems. Because even if they order from the gluten free menu, there's no telling how it's actually prepared in the back room. What if the, you know, the chef is using a knife that was used to cut bread, for example, you know, traces of gluten can make its way into the unote.
>> Debra Schindler:Gluten free, it's that sensitive. I mean I know there are nut allergies that would, would create such a problem. But even with celiac it's the same level of sensitivity.
>> Dr. Jose Parungao:Not everyone presents that way. But yes, I do have patients who are that sensitive? Definitely. Like I said, whenever they flare they can trace it back to the time that they ate out. And so it's a, they can be very sensitive when it comes to gluten.
>> Debra Schindler:Is there anything that might surprise people that you have come across through the years that like M&MS. Or something, I mean it's like trying to track down kosher food. Sometimes I'm surprised by what is kosher and what isn't.
>> Dr. Jose Parungao:Right, right, right. So one of the less commonly thought of sources of gluten would be the communion hosts, which do invariably contain wheat or gluten. Surprisingly, in our church we do have gluten free hosts, available for patients with coliac disease. And that's been helpful. And that again goes to show how coliac disase and the gluten free way of life has really entered psyche of the community and it's been more accepted and adapted to over time.
>> Debra Schindler:Well, 3 million Americans are living with a diagnosis and as we pointed out, it's underd diagnosed. So absoutely a lot of people have this.
>> Dr. Jose Parungao:Right.
>> Debra Schindler:So with celiac disease being so difficult to diagnose and also limited with treatment, why is it so important for continuity?
>> Dr. Jose Parungao:First of all, just going back to what can occur if it's untreated in terms of the deficiency, it's important to keep up with that. But also in my practice over time I actually have them come back, you know, maybe a year or two after the diagnosis, to do another scope to make sure that the small bowel biopsies are showing histologic response to the interventions. So I think doing that over time is very critical. And you can alternate that with checking antibodies because for someone with actual celiac disease that they're very successful at avoiding gluten, their numbers in terms of their antibodies actually go back to normal. That goes back to that acronym I gave earlier about celiac ceeliaac support. In terms of websites that they can go on to. celiac.org is a good resource to look into, for support. But overall I think it's one thing to bear in mind for celiac disease. It's a multidisciplinary approach, that involves the GI doctor, the nutritionist and primary care doctor as well. In terms of managing their symptoms and keeping them in remission for as long as possible.
>> Debra Schindler:Can it ever go away?
>> Dr. Jose Parungao:Yes. It ever just disappear? Technically the to. I think the, the answer to that would be a little bit more nuanced. The predisposition to celiac disease. You know, if you're diagnosed with it, that part doesn't go away. Meaning if you are exposed to gluten, there's a high probability that you would respond to it, in the same way in terms of the inflammatory response and the malabsorption that can occur over time. But if again, the gluten free diet is instituted properly and adhered to vigilantly, the symptoms and even on a, microscopic level that can improve over time. So yes, there is a way to make it and go away. And right now the only way to do that is to adhere to that diet.
>> Debra Schindler:So in this region of the country, in Baltimore, for example, where steamed crabs are such a popular food item, many people don't want to eat them without a beer. Can a celiac patient ever hope to enjoy a beer with steamed kraic?
>> Dr. Jose Parungao:Again, maybe the gluten free beers? Yeah, yeah, they do. They do sell the gluten free beers now. Interesting. So, but only that. But the regular beer is probably not right.
>> Debra Schindler:I mean, what is the general reaction to a patient who gets that diagnosis? What do you say? What's your advice for feeling helpful?
>> Dr. Jose Parungao:Right. Yeah. So I think, with all our patients, as I mentioned, I think the recognition that this is a potentially lifelong event because, being vigilant about their diets, things of that nature, important. But we're here as a team to help you navigate this through the rest of your Life.
>> Debra Schindler:Thank you, Dr. Parungao for all that you do to help patients manage celiac disease and for sharing your expertise with us today on doctalk. If you live in Maryland, in the Baltimore, Annapolis or Bel Air areas, and would like to schedule an appointment with a gastroenterologist, call, 443-782-7640. If you have feedback about this podcast or you would like to suggest Another topic for DocTalk, send me an email. Debra Schindler medstar.net.mhm.
