Scott Webb (Host): It seems like gluten is everywhere, and though some of us avoid it for dietary reasons; folks who suffer from celiac disease should avoid it at all costs. And joining me today to discuss the signs, symptoms and treatment options for celiac disease is Dr. John Dowd. He's a Gastroenterologist with Emerson Health Gastroenterology. This is the Health Works Here Podcast from Emerson Health. I'm Scott Webb.

Doctor, thanks so much for your time today. We're going to talk a little bit about gluten and why it matters in the scope of this conversation, but specifically I want to talk about celiac disease today. So let's start there. What does it mean to have celiac disease?

John Dowd, DO: Celiac disease is an autoimmune condition that is triggered by gluten. And gluten is a structural protein found in certain types of grains. Particularly the aspect of gluten that causes a problem in celiac disease is a protein called gliadin. Gliadin and gluten are in breads and pastas, pizza, cereal, beer, things like that. So, people with celiac disease cannot have typical beer and pizza, which is such a tragedy.

Host: That is very disappointing to hear, unfortunately.

John Dowd, DO: But anyway, what happens when they ingest this protein is that it triggers an immune mediated inflammatory process in the gut, particularly in the small intestine. And the small intestine is where our food is digested and our nutrients are absorbed, and when there's inflammation, the surface area of the small intestine gets diminished by the inflammatory process and the damage that's done to the small intestine, and that can result in malabsorption of micro and macronutrients, diarrhea, weight loss, bloating, and multiple other symptoms. The symptoms of celiac disease run the gamut and really are head to toe from, you know, people complain of brain fog and fatigue and vision problems to rashes. And I mentioned already some of the gastrointestinal symptoms of Celiac Disease. So, it's quite encompassing.

Host: Yeah. And I'm wondering, how common is this? Are some people more prone than others? Is there a family history? Take us through that.

John Dowd, DO: So that's a great question. And it's very dependent on where you're from. It seems to have the highest incidence in Northern Europeans. In America it's approximately 1%. It's one of the more common digestive conditions that we see as Gastroenterologists. But there are parts in the world where it's not at all common, such as China, Australia, Japan. But there are parts where it's more common, particularly high in people of Northern European descent.

Host: You mentioned the symptoms, you know, and I was just thinking about, boy, it could be a multitude of things and most of those things could be something else, right? So, what gets someone to think, oh, I might have celiac disease. And then what do you do when folks come in the office? You say there may be some genetic markers, but generally speaking, how do you diagnose Celiac disease?

John Dowd, DO: There is a wide variety of symptoms for that people would come in for. I recently had a patient who came in with relatively new onset of abdominal pain, loose stools. She'd had some urgency, bloating, gassiness. She woke up at night with loose stools. Waking up at night with loose stools is consistent with a real disease, an organic disease, not irritable bowel syndrome or other conditions like that. So, weight loss, things like that. Patient also had a coexisting deficiency of IGA, which is an immunoglobulin, a protein that helps us fight infections and had a few infections.

Turns out that those two things, the IGA deficiency and celiac disease come together quite often. But it's more difficult to make the diagnosis in patients with IGA deficiency because some of the testing that we use, uses that technology to make the diagnosis. So we have to use all different kind of testing in those patients.

But, they can come with a variety of symptoms, some of which are not even GI. Some patients will just say, you know, I'm having a really difficult time concentrating, or I have this mental fogginess, is something that we hear quite a bit or headaches. Certain types of rashes that we see with celiac disease are very common and even in the absence of any GI symptoms, would prompt investigation for celiac disease. There's a specific rash that's called dermatitis herpetiformis.

Host: Yeah. And so they have some symptoms. They come in and see you, you diagnose. Yep. You have celiac disease, so it's just avoid gluten. Easy peasy. Right?

John Dowd, DO: It sounds like it should be, but it's really not. It's gotten easier than it used to be. Thanks to technology. There are a lot of great apps that are available on smartphones where you can scan labels, for instance, and it will tell you if there's gluten in that product. But there's a lot of sources of hidden gluten. There are certain things that might be, you know, on a label like modified food starch, that's code for probably has gluten. And there's also a big problem, especially in this country because we rotate our crops and there can be contamination and some people are exquisitely sensitive to gluten.

So for instance, in the Midwest, somewhere in Iowa, they they might be growing a thousand acre field of wheat one year, and the next year it's corn. But some of that wheat spills out of the combine, the grain carrying equipment onto the field and can contaminate the next year's crop. So some people are so sensitive that that cross reaction can cause problems. Also in this country, our processing of grain. There's these huge, grain processing plants in the Midwest. They might be, you know, having wheat in one part of it and corn in another with some of that dust goes up and mixes with other grains. And again, some people are so sensitive that can bother them. So they have to be very, very careful that some places, and eating out is also challenging for patients with celiac disease because, not all restaurants take this with the same degree of seriousness. And eating out can be challenging for patients with celiac disease if the restaurants and the chefs and the serving staff aren't acutely aware of what can happen and why it's important to avoid gluten and gliadin in patients with celiac disease.

There also used to be, and I'm not sure that this is still the case, but there also used to be gluten in things that were not food materials such as stamps. Stamps used to contain a glue gluten, that when you lick the stamps you could actually have gluten contaminate and you're basically going to swallow that gluten and if you have celiac disease that can cause problems. Some cosmetics also contained gluten previously.

I think they're largely trying to get rid of that, but it is still a problem for some people. Also, people who have celiac disease, their family members may not. And if there's baking being done in the house with regular flour, that can contaminate their food products. And basically we tell people who have celiac that they should have their own toaster and some need their own utensils and own cookware. So it can be a very pervasive condition.

Host: Is it just more common now than it used to be? Or we just talk about it more than we used to?

John Dowd, DO: There is definitely an increased awareness of the condition. I think that, you know, wheat and wheat products have become more and more ubiquitous in society than they used to be. There's a whole cadre of folks who, although don't have celiac disease, have some non-specific symptoms, when they consume gluten and that's this sort of trendy, gluten-free. A lot of people are on gluten-free diet that may not necessarily need to be. And then there are some people who have what we've termed, non-celiac gluten sensitivity or non-celiac gluten sensitive enteropathy. And basically they have symptoms like celiac disease, but they don't have any intestinal damage if we took biopsies of their intestine, for instance. So they can have normal blood tests when we test them, but they just say, Hey, if I eat gluten, I have, you know, symptom X, Y, and Z. I have brain fog and diarrhea and bloating, for instance.

Host: Yeah, clearly one of us is a doctor and one of us isn't. So I'm thinking to myself, all right, well, yeah, you can try to avoid gluten, but that's not always the easiest task. Is there anything else? Is there, some sort of medications and things that can sort of cancel out so that if you accidentally or unintentionally ingest some gluten, that it sort of can stop it in its tracks before it really triggers a full blown reaction?

John Dowd, DO: Although you're not a doctor, you are definitely, you definitely are onto something here.

Host: I thought it was maybe just wishful thinking.

John Dowd, DO: No, they're actively working on medications that patients with celiac disease can take and to try to eat a regular diet, that they're not quite there yet. They're working on it. There is a role for medication. I mean, generally, in patients with celiac disease, we tell them to go on a gluten-free diet and if they're very, very strict with it, and what I mean by strict is hundred percent compliant because anything less than a hundred percent compliant is what we consider non-compliant.

Because it's immune mediated, it doesn't take much to kind of get this condition going. And I tell patients that, you know, once this gets going, it's kind of like a cruise ship. It doesn't just stop the immune system. Once it's activated, it takes a while for that inflammatory process to quell down.

So it's very important that patients with true celiac disease remain compliant. In patients who are completely compliant with the gluten-free diet, but continue to have symptoms; that's another condition that we call refractory celiac disease, and we do use medications for that. We can use steroids or immunosuppressants for that condition. It's a different kind of celiac disease. It's more difficult to treat and oftentimes if those patients can't be managed medically or by dietary means they can develop certain types of cancer that are associated with celiac disease.

Host: Yeah. So, some folks avoid gluten just because they want to and because it's trendy. Others may have, yeah, may have a sensitivity but not celiac disease. Even others may have celiac disease and even those who are a hundred percent compliant may still have a form of celiac disease that can be treated by meds today. I think I've got it, Doctor, I just want to give you a chance.

John Dowd, DO: Well done, well encapsulated. So what you've described is sort of a spectrum of conditions, a spectrum of disease, which is how a lot of our gastrointestinal conditions and other medical conditions are. There's really a spectrum of mild, moderate, and severe. You pretty much just laid that out.

Host: I just want to give you a chance here at the end. When you think about celiac disease and how many people you know are potentially suffering from it and are undiagnosed, right? So how do we get them to get diagnosed? What would be your words of encouragement when they're thinking about all these symptoms and what it might be, and they're looking on the internet trying to figure it out themselves. How do we get them to come in and see the experts?

John Dowd, DO: I think the best thing for patients to do is talk to their primary care doc and we have all ranges of tests in medicine. Some of them are very good and some of them are not very good. For celiac disease, we have tests that are very sensitive and very specific. So it's one of the few conditions that, you know, we can oftentimes make a diagnosis or at least make a presumptive diagnosis that we can then confirm by endoscopy and duodenal biopsy, which is considered the gold standard. So we have really good testing for this condition. So if you, if a patient has symptoms that are unusual and new onset, you know, atypical or a constellation of symptoms like I keep talking about this mental fogginess or brain fog that people will talk about and fatigue and they're anemic or they have diarrhea; then some testing, some screening tests can be obtained and if they're, suggestive of celiac disease, then they should be referred to a Gastroenterologist who can kind of take it from there and get additional testing if necessary to possibly include endoscopy with biopsies. That is the gold standard and can also be used to some extent, although not necessarily necessary, depending on the patient; can be used to kind of follow their progress with a gluten-free diet, if necessary.

Host: Yeah, that's perfect. I mean, as we've sort of learned here today that celiac disease is going to affect our quality of life in a variety of different ways, but there can be some serious consequences to it being undiagnosed and untreated and just continuing to ingest gluten because it's everywhere apparently. So, great words of wisdom and advice from an expert today. Great to speak with you again, and you stay well.

John Dowd, DO: Thank you, you too.

Host: And for more information, visit Emersonhealth.org/gastro or call 978-287-3835 to make an appointment. And thanks for listening to Emerson's Health Works Here podcast. I'm Scott Webb. And make sure to catch the next episode by subscribing to the Health Works Here Podcast on Apple, Google, Spotify or wherever podcasts can be heard.