Understanding Celiac Disease

Podcast Transcript

Dr. Scott Steele: Butts & Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end to end. Hi again, everyone, and welcome to another episode of Butts & Guts. I'm your host, Scott Steele, colorectal surgeon and president of Main Campus here at Cleveland Clinic in beautiful Cleveland, Ohio. And today, I am super pleased to have a first time guest on here, Dr. Claire Jansson‐Knodell, who is an assistant professor of medicine and a staff gastroenterologist in the department of gastroenterology, hepatology and nutrition here at the Cleveland Clinic. Claire, welcome so much to Butts & Guts.

Dr. Claire Jansson‐Knodell: Thank you for having me here. Very excited to talk today.

Dr. Scott Steele: Well, we're going to talk a little bit about celiac disease, but for the listeners out there who are longtime listeners, as you know, we first want to get to know you a little bit better. So tell us a little about your background, where you're from, where'd you train, how did it come to the point that you're here at the Cleveland Clinic?

Dr. Claire Jansson‐Knodell: I'm originally from Minnesota, that's where I grew up. I did my medical training at the University of Minnesota, and then my residency at Mayo Clinic, also in Minnesota. For GI fellowship, I went to Indiana University. And then, I took my first job as a faculty member here at Cleveland Clinic.

Dr. Scott Steele: Well, we're glad to have you here. So as I said briefly, we're going to talk about celiac disease. So to start, can you give us an overview of really what is celiac disease at a high-level for our listeners?

Dr. Claire Jansson‐Knodell: Absolutely. Celiac disease is an autoimmune disorder that affects the small intestine. The small intestine is the area of the GI tract located between the stomach and the colon, and it's responsible for a lot of the absorption of vitamins, minerals, fluids, nutrients. What celiac disease does to the body is flatten the villi, which are these finger-like projections in the small intestine that help increase the surface area for absorption. So it's really interesting the small intestine that it is about five to seven meters long, but the surface area is actually 250 square meters, and that's because, in part, of these villi. So when a person has celiac disease, the villi get damaged by eating gluten, and gluten is a storage protein that's found in wheat, barley and rye. So in order to treat celiac disease, you have to avoid eating gluten altogether, and that allows the small intestine time to heal.

Dr. Scott Steele: Well, we're going to delve in a little bit more into each of those, but first of all, tell me a little bit more about this eating gluten flattens the villi. What, does the gluten just attack the villi, or is it an autoimmune process, or what happens that it flattens?

Dr. Claire Jansson‐Knodell: reat question. It is an autoimmune process. We define it as an immune-mediated disease where the body has a strong response to the protein, and this creates all sorts of changes in the small intestine mucosa. The villi get flattened, there are increased intraepithelial lymphocytes, which are inflammatory cells, there's crypt hyperplasia, all sorts of changes that we see under the microscope that can be attributed to this protein that damages the small intestine.

Dr. Scott Steele: So if I'm sitting at home and I'm thinking, that's great, but what type of symptoms am I going to feel that would lead me on to think that I might have celiac disease?

Dr. Claire Jansson‐Knodell: This is the tricky part, because celiac disease is a notorious clinical chameleon. Patients who have celiac disease can have a whole range of symptoms, both those related to the gastrointestinal tract and those that we consider extraintestinal manifestations, or outside the GI tract. So some classic GI symptoms for a malabsorptive condition like celiac disease would be diarrhea, weight loss, and nutritional deficiencies. But patients with celiac disease can also present all sorts of different ways, bloating, abdominal pain, even constipation, which is unusual for something that we traditionally think of as a disease where you get diarrhea. Outside of the GI tract, it's a multi-system disorder, so patients can have neurologic symptoms, like headaches, migraines, patients can have dermatologic changes, like dermatitis herpetiformis, which is a classic rash related to celiac disease. There can be basically any system of the body involved, those are just a few examples.

Dr. Scott Steele: So, if I was to come in and see you, how do you diagnose it? What type of tests do I have to undergo, what does that all involve?

Dr. Claire Jansson‐Knodell: So first, I would talk to you about the symptoms that you're having, see if they fit any of those classic ones from the gastrointestinal side or any of those extraintestinal manifestations that we know have close associations with celiac disease. Then we would start with a blood test. This is a serology to look for the tissue transglutaminase antibodies. If that was suggestive of celiac disease, or if you had symptoms that were very concerning for malabsorption, we would then go on to an upper endoscopy and take biopsies of the small intestine. That's a procedure where we put you to sleep and use a camera, in through the mouth, down through the esophagus, stomach and small intestine, to take samples of the small intestine to look at them under the microscope for the damage related to celiac disease.

Dr. Scott Steele: So what's the difference between celiac disease and SIBO, the small intestinal bacterial overgrowth? You said it's a wide range of symptoms, so people with SIBO sometimes get bloating, they get diarrhea, they get abdominal pain, and as you said, it's a chameleon, so could you have both or is it this is really specific here and it's diagnosed completely separately via the microscope and the biopsies and what you see there?

Dr. Claire Jansson‐Knodell: That's a very good question. Symptoms can definitely overlap between SIBO and celiac disease. To diagnose SIBO, we typically use a breath test which measures the hydrogen levels that you breathe out, and this is a surrogate marker for the gas that's produced in the GI tract. Typically, if a patient had SIBO, they're testing for antibodies, the tTG antibodies would be negative, but they may, if the SIBO was very extreme, have the villus atrophy or damage to the small intestine on biopsy.

Dr. Scott Steele: So you mentioned a little bit before about the mainstay of therapy being to avoid gluten, but is there any other ways you treat celiac disease?

Dr. Claire Jansson‐Knodell: No. The only available treatment at this time is the strict, lifelong gluten-free diet. There are some therapies that are being evaluated and in phase two and hopefully soon starting phase three clinical trials, but there are no FDA-approved medications for celiac disease.

Dr. Scott Steele: Okay. So I'm going to ask you this one of both ways. How important is it to follow a strict gluten-free diet, and what are the potential ramifications or consequences of not adhering to it? Can you have a little bit of gluten every now and then? And then, the other way around it is, are there downsides to following that strict one and consequences from not eating any gluten at all?

Dr. Claire Jansson‐Knodell: For patients who have celiac disease, it is absolutely essential to follow a strict, lifelong gluten-free diet. This is the only treatment that we have available right now and it treats celiac disease, it allows the villi a chance to heal in the small intestine and for a patient to absorb nutrients like they should and to feel better. And for your second question, it's so important that patients with celiac disease follow a gluten-free diet, but there are some consequences of being very strict in terms of being gluten-free, and that's something that your physician will help you monitor. A gluten-free diet can be lower in some of the B vitamins and it can also be higher in fat, salt and sugar, so that's something that we have to keep an eye on to make sure someone's not at risk of developing type two diabetes, for example, or issues with cholesterol levels. For patients who are gluten-free, this has to be the case lifelong, there aren't any cheat days, there's not a birthday cake at a party, things like that, it's really essential that they follow a lifelong gluten-free diet.

Dr. Scott Steele: So truth or myth, truth or myth, everyone would benefit from giving up gluten?

Dr. Claire Jansson‐Knodell: It's very funny that you asked that and I'm glad that you did because this is definitely a myth. A lot of people think that a gluten-free diet may be healthier or lead to less of an inflammatory state, better athletic performance, it's really popular right now and it probably shouldn't be. We don't recommend that patients follow a strict gluten-free diet unless there's a medical necessity to do so, and that would be celiac disease or a limited number of other conditions, like non-celiac gluten sensitivity, wheat allergy, and in some cases, irritable bowel syndrome.

Dr. Scott Steele: So let's dig in a little bit further to something you just mentioned, so what is this sensitivity to gluten but not having celiac disease? How do we know that, and what is that all about?

Dr. Claire Jansson‐Knodell: Non-celiac gluten sensitivity is when someone does not have the immune response, so they don't develop the tissue transglutaminase antibodies, and they don't have the damage to their small intestine, but they still feel sick when they eat gluten. So it's not dangerous to the body, but patients just don't feel good when they eat gluten and they have non-celiac sensitivity. In terms of management, there's a little more flexibility there, it doesn't need the strict avoidance of gluten that celiac disease does. A lot of times, we do have them meet with a nutritionist or a dietitian with expertise in the gluten-free diet to figure out what level of gluten they're able to eat, but I think it's very reassuring that it's not causing damage to the small intestine. But these patients need to be worked up for celiac disease first before they start implementing a gluten-free diet.

Dr. Scott Steele: So Claire, does gender play a role in celiac disease, and do symptoms differ between men and women?

Dr. Claire Jansson‐Knodell: This is very interesting. There are more women than men diagnosed with celiac disease, and a number of studies have shown that this is the case in terms of if patients are referred for celiac disease or if we're testing general populations as well just to look for the markers for celiac disease, we tend to see it more in women, and this is common for a lot of autoimmune diseases. In terms of how patients present with celiac disease, it can be a little bit different. A number of studies have looked at this area, I did one when I was a resident during my training, and we found that women were more likely to present with constipation, anemia and bloating compared to men with celiac disease.

Dr. Scott Steele: So we talked a little bit earlier about a myth, is there any other misconceptions about celiac disease out there?

Dr. Claire Jansson‐Knodell: Yes, that you don't have to be strict in terms of the gluten-free diet, that some or a little is okay is definitely a myth. Another myth is that being gluten-free will improve your athletic performance. There are a number of professional athletes, Novak Djokovic being one of them, who follow a gluten-free diet and attribute that to a lot of success. There was a very interesting study that was done, which was a time trial of professional cyclists, they had them eat a gluten-containing or a gluten-free diet for two weeks, and they were blinded and then crossed over and served as their own controls. And then, they had them do a 13-minute timed cycle ride, and they found that there was no improvement in their speed or performance whether they were on a gluten-free or a gluten-containing diet.

Dr. Scott Steele: So are there any advancements on the horizon when it comes to the diagnosis or treatment of celiac disease?

Dr. Claire Jansson‐Knodell: There are, there's a lot of interesting research being done right now. In terms of diagnosis, we are looking at other ways to diagnose celiac disease which are less invasive. One of them is IL-2, which is a blood test for interleukin-2, which could look at the inflammatory or cytokine response when someone has an ingestion of gluten, or eats gluten. This is emerging and is not yet available for clinical practice, but something that is being explored from a research standpoint. In terms of diagnosis as well, we're also looking at if patients need a biopsy to diagnose celiac disease. This is traditionally how it's been diagnosed. In children in Europe, the guidelines allow for a diagnosis without a biopsy, and so that's being explored in terms of the tissue transglutaminase antibody levels across the world. In terms of what's new for potential treatments for celiac disease, there are multiple medications being developed. Some of them allow the body to digest gluten, and some of them build an immune response or immune tolerance to gluten. These are still in clinical trial phases, and there's research ongoing in these areas.

Dr. Scott Steele: So now it's time for our quick hitters to get a chance to get to know you just a little bit better. So first of all, what is your favorite food? It can be gluten-free if you'd like.

Dr. Claire Jansson‐Knodell: I think my favorite food is ice cream.

Dr. Scott Steele: Fantastic. What's your first car?

Dr. Claire Jansson‐Knodell: Well, in high school, I drove the family minivan.

Dr. Scott Steele: Fantastic. Do you have a favorite trip that you would love to go on or that you went on?

Dr. Claire Jansson‐Knodell: There's so many to think about here. I think one of my favorite trips was a road trip that I took across Europe. My husband is originally from Sweden, and we drove all over, and probably my favorite place on that trip was Lake Bled in Slovenia.

Dr. Scott Steele: Wow, sounds interesting. And then, finally, do you have a favorite superhero?

Dr. Claire Jansson‐Knodell: No.

Dr. Scott Steele: That's fair enough, I'll take that one. So give us a final take-home message for our listeners.

Dr. Claire Jansson‐Knodell: Celiac disease is very common, and there are a lot of patients out there with a wide range of symptoms who don't know they have it. If you or someone you know is concerned about having celiac disease, please talk to your doctor about it and undergo a workup, including the tissue transglutaminase antibody, and if needed, the upper endoscopy with biopsies of the small intestine. We're happy to care for any and all patients with celiac disease, and would love to help you in your gluten-free journey.

Dr. Scott Steele: Fantastic. And so, to learn more about celiac disease or schedule an appointment for a treatment at Cleveland Clinic, call the Digestive Disease Institute at 216.444.7000. That's 216.444.7000. You can also visit our website at clevelandclinic.org/digestive. That's clevelandclinic.org/digestive. Claire, thanks so much for joining us on Butts & Guts.

Dr. Claire Jansson‐Knodell: Thank you for having me.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.