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Many people today follow a gluten-free diet for a number of reasons. But for people with celiac disease — a serious, lifelong autoimmune disorder — it’s absolutely necessary. Gastroenterologist Alberto Rubio Tapia, MD, explains how celiac disease is more than a gluten sensitivity and details the steps to getting a diagnosis, including who’s most at risk and how to get tested.

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Understanding Celiac Disease (and Gluten's Role in It) with Dr. Alberto Rubio Tapia

Podcast Transcript

Deanna Pogorelc:  Thank you for joining us for this episode of the Health Essential podcast brought to you by Cleveland Clinic. I'm your host Deanna Pogorelc and we are recording here today at Cleveland Clinic main campus with Dr. Alberto Rubio Tapia.

Deanna Pogorelc:  Dr. Rubio Tapia is a gastroenterologist here who is developing a comprehensive celiac disease treatment and research program here at Cleveland Clinic and he's here to talk to us today about celiac disease, which is an autoimmune disease triggered by the protein gluten. Thank you so much for being here today.

Dr. Rubio Tapia:  Thank you.

Deanna Pogorelc:           And to our listeners, please remember that this is for informational purposes only and is not intended to replace your own physician's advice. So, Dr. Rubio Tapia, I am assuming that most people who have heard of celiac disease associate with gluten, and which we see all over in the grocery store and in restaurants, that gluten-free signage. So, can you start by talking a little bit about what actually is gluten and is it inherently harmful, or what is it?

Dr. Rubio Tapia:  So, gluten, actually, is a natural protein in wheat, barley and rye. It's not harmful for persons without celiac disease but it's the real enemy for patients with celiac disease.

Deanna Pogorelc:  Okay. And it's something that occurs naturally in food, not something that's added.

Dr. Rubio Tapia:  That's correct.

Deanna Pogorelc:  Okay. So, why is it dangerous to people who have celiac disease?

Dr. Rubio Tapia:  So, gluten is a protein. And for patients with celiac disease, when they eat gluten, that protein cause an inflammatory reaction in the gut that leads to destruction of the absorption processes in their small bowel that are called villi and also to systemic manifestations of the disease and complications.

Deanna Pogorelc:  Okay. So, it's inflammation. So then, if people say they're avoiding gluten because of an intolerance or an allergy, that's something different, right?

Dr. Rubio Tapia:  Yeah, it's totally different. I will say, in terms of the wheat allergy it is a very common disease in children. It affects about 1% of the children, but most children get over that allergy by age five. So, that's more a childhood disease.

Dr. Rubio Tapia:  Intolerance is more like a controversial topic. I think there is some people who really develop symptoms after eating gluten without having celiac disease and they get better on the gluten-free diet and that's the current definition of gluten intolerance. We don't know exactly if gluten is the cause for the symptoms or a different components in wheat and celiac disease, on the contrary, is a very well-defined entity.

Deanna Pogorelc:  Okay. And how long has celiac disease been a known condition? It feels like we're hearing about it a lot more now. But is that just because we're getting better at noticing it?

Dr. Rubio Tapia:  Yeah, that's true. So, celiac disease was described in the first century by a Greek physician. But the real knowledge about the link between gluten and celiac disease is more new, about 1950s ,by a Dutch physician called William Dickey. So, that's the modern version celiac disease that we know.

Deanna Pogorelc:  And it happens all over the world, not just here in the US?

Dr. Rubio Tapia:  That's correct. So, the prevalence of celiac disease around the world is around 1%, so if you think about this, for example, for countries like India, with a population of millions of people, a prevalence of 1% means a lot of celiacs.

Deanna Pogorelc:  Yeah. So, what happens in the body of someone who has celiac disease when they consume gluten? What happens and what are some of the symptoms that they might have?

Dr. Rubio Tapia:  So, this is a very important point. Patients with celiac disease, when they eat gluten, the gluten causes injury in the small bowel, there is all inflammation and destruction of the villi. Symptoms may or may not be present, but it's very important for the patient to stay gluten-free because damage always occur.

Deanna Pogorelc:  Okay. So, in terms of someone, if someone just has general digestive symptoms, what would be the process of figuring out whether celiac disease might be the culprit?

Dr. Rubio Tapia:  So I think that first step that is most important is that doctors, in general, think about the diagnosis, because when we start thinking about the diagnosis the initial step is a blood test to look for antibodies that are commonly associated with celiac disease and if these antibodies are positive, the next step is confirmation of the disease by doing a biopsy of the small bowel.

Deanna Pogorelc:  Okay, so this will be something that if somebody has digestive problems, they would mention it to their primary care physician who might refer them then to a gastroenterologist?

Dr. Rubio Tapia:  So, that's correct. So, many of my patients are diagnosed, or at least is suspicious for the diagnosis, is made with the primary care physician.

Deanna Pogorelc:  Yeah. Are there any hallmark symptoms? Is there any one way that a diagnosis tends to look? Are there hallmark symptoms that people tend to generally have, or you mentioned some don't even have symptoms?

Dr. Rubio Tapia:  Yeah. This what is very complicated about celebrities. Some people may have seen symptoms. Classic symptoms are diarrhea, abdominal bloating, constipation, weight loss that is unexplained. In children, it's a growth retardation, is a common symptom, but as much as 70% of the patients with newly-diagnosed celiac disease may not have any gastrointestinal symptoms and the diagnosis is made by testing high risk populations.

Deanna Pogorelc:  Okay. And so, who would some of those high risk populations be?

Dr. Rubio Tapia:  So, family members with celiac disease, patients with type one diabetes, auto-immune conditions, unexplained anemia, unexplained bone disease, fatigue.

Deanna Pogorelc:  Okay. So, if someone is diagnosed with celiac disease, what's the next step?

Dr. Rubio Tapia:  So, the next step is confirmation of the diagnosis. Make sure that the diagnosis correct because that treatment for celiac disease is a lifelong strict adherence to a gluten-free diet that is very complex and difficult for the patients sometimes. So, confirmation of the diagnosis is the next step, then they will need a visit with a dietician for instruction on the diet and regular follow-up.

Deanna Pogorelc:  Does that affect a family also, if one person has to eat gluten-free, how does that play out in a household?

Dr. Rubio Tapia:  It's a big change for the family and also important to recognize that about 10% of first degree family members may be affected with celiac disease. Then it's very important to check for celiac disease in first degree family members and follow the diet if the diagnosis is confirmed.

Deanna Pogorelc:  So, a first degree family member would be a parent or a sibling?

Dr. Rubio Tapia:  Parents, siblings and children.

Deanna Pogorelc:  Okay. So then, if my father has it, would I also go to my primary care physician and ask for a blood test?

Dr. Rubio Tapia:  That would be the way to do it. We are working very hard in this celiac program to make that transition easy for the patients and trying to help them with everything that is necessary to be tested because I think that's one of the most important quality celiac care points after the diagnosis.

Deanna Pogorelc:  Okay. What about a genetic test? Is there any place for that?

Dr. Rubio Tapia:  So, the genetic test is very tricky. It's not necessary for diagnosis for the vast majority of the patients. It's helpful when there's discrepancy between the antibodies in the blood and the biopsy, for example. It presents in 30% of the general population, then having the genetic test is not equal to celiac disease, but it's very helpful to rule out the disease because if you don't have a genetic test, then celiac disease is not possible.

Deanna Pogorelc:  Okay. Interesting. Okay. So, in terms of the gluten-free diet, do you think there is hope for any other kind of treatment in the future? Is that something that researchers are working on?

Dr. Rubio Tapia:  Yeah, there is a significant need for alternatives to the gluten-free diet. There's no alternative currently available for patients with celiac disease, but that's the focus of research.

Deanna Pogorelc:  What about a vaccine? Is that still in development or no?

Dr. Rubio Tapia:  So, the vaccine unfortunately is no working. So, the current way they were testing the vaccine, it didn't work. So, I think probably in the future with a different technology, maybe possible, but not currently.

Deanna Pogorelc:  Okay. What about when it's a child who is diagnosed? Is treatment approached in the same way, and what should parents know about the process?

Dr. Rubio Tapia:  So, the treatment is similar. It's a strict adherence to a gluten-free diet? Parents are key because the instruction goes to parents and also to children to make sure that they follow a regular gluten-free diet. The diagnosis is a little bit different because in children is the potential to avoid confirmation with biopsy in some cases.

Deanna Pogorelc:  So, that's a little bit invasive. That's why we would want to avoid that?

Dr. Rubio Tapia:  Exactly.

Deanna Pogorelc:  Okay. So, when someone who has celiac disease cuts gluten from their diet, how long does it take the body to heal and does it heal?

Dr. Rubio Tapia:  They heal. So, for the symptoms to go away, just within weeks. The antibodies that could be very high at the time of the diagnosis usually go back to normal after six months of following a gluten-free diet, and for sure it should be normal by 12 months after following the gluten-free diet.

Dr. Rubio Tapia:  Healing of the bowel takes longer and depends on the age of diagnosis. For example, for children, healing is achieved within two years in 90%. For adults, healing is achieved in about 40% within two years.

Deanna Pogorelc:  Okay. But the fact that they have celiac disease never goes away.

Dr. Rubio Tapia:  No. Celiac disease is a definitive diagnosis and a lifelong diagnosis.

Deanna Pogorelc:  So, somebody who thinks they are intolerant to gluten or somebody cuts gluten out of their diet without having celiac disease, is that a bad thing? Are they going to be missing things from their diet?

Dr. Rubio Tapia:  So, what we don't know about it, so the clinical implications of following a gluten-free diet long term without having the diagnosis of celiac disease isn't known. I think if the patient or person is getting some benefit for staying gluten free, it's very reasonable to consider continuation of the diet. But I will say what is most important is to get tested before starting a gluten-free diet.

Deanna Pogorelc:  Well, is there anything else about celiac disease that you think our listeners really need to know or any other message you want to leave them with?

Dr. Rubio Tapia:  So, celiac disease is a very common problem. We need to think about this diagnosis in many conditions beyond gastrointestinal symptoms. There is a definitive treatment for this condition that's the gluten-free diet with regular medical follow-up, and most patients do really well on the diet with treatment.

Deanna Pogorelc:  Okay. Well, thank you so much for talking with us today and if you'd like to schedule an appointment with Cleveland Clinic's Digestive Disease Institute, please visit clevelandclinic.org/digestive or call (216) 444-7000, and to listen to more of our Health Essentials podcast episodes with our Cleveland Clinic experts, you can visit clevelandclinic.org/hepodcasts or subscribe wherever you get your podcasts. For more health tips, news, and information, follow us at Clevelandclinic, all one word, on Facebook, Twitter, and Instagram. Thanks for joining us.

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