Melanie Cole, MS (Host): Welcome to AHN Med Talks, an informative resource for physicians across various specialties as we delve into the latest medical insights and best practices, ensuring you stay at the forefront of your field. I'm Melanie Cole, and our discussion today focuses on celiac disease and the AHN Celiac Center.

Joining me is Dr. Heitham Abdul-Baki. He's a Gastroenterologist at AHN Allegheny Center for Digestive Health in Pittsburgh. Dr. Abdul-Baki, thank you so much for joining us today. Before we get into celiac and all the things that go along with this complex issue, I'd like you to tell us a little bit about the Center and how it came about. Why did you see a need for this type of center?

Heitham Abdul-Baki, MD: Thank you for having me, Melanie. I appreciate the time that you're offering for me to discuss the Celiac Center. The Celiac Center was actually initiated in the early 2000s by predecessor, Dr. Kofi Clarke. It was part of his gastroenterology clinic and he dedicated time for patients with celiac disease, and tried to create a multidisciplinary approach for this complex disease.

I joined the practice in 2014. I was at the lead at the Celiac Center at the time per his request, and I took it a step further to establish it at the Autoimmune Institute, where it became more of a physical place, a physical center. And at that time, we had incorporated multiple disciplinary specialties to help with the care of celiac disease patients. That included the medical nutritionist, the dietician, the behavioral therapy team, as well as the nursing staff who coordinated the care of those patients. It was nice because it was a place, it was a location where celiac disease patients were able to, uh come to receive multidisciplinary care and also be able to meet all their providers during one visit. And that was a beacon for education for celiac disease patients. So in a sense, if they're diagnosed with celiac disease, they would show up and they would meet all these providers and get all the education information they need about the disease.

The follow up tends to be more specific, depending on their own personal needs.

Host: Thank you so much for that. So, tell the listeners a little bit about celiac disease itself, the prevalence and the scope of what we're talking about here today.

Heitham Abdul-Baki, MD: Well, celiac disease is not uncommon, but is often very commonly missed. In the United States population, we could expect that about one to 2% of people, walking the street to be carrying the diagnosis of celiac disease. Obviously it comes in different spectrum of severity. The confusing part about it is that it is not typically symptomatic.

So the symptoms that people tend to think that celiac disease cause is not really true. The common belief is that if I eat gluten, which is the trigger for celiac disease, that I would get symptoms of diarrhea, abdominal pain, GI discomforts generally, and the truth of the matter is that celiac disease commonly does not cause physical symptoms and sometimes causes neurological symptoms like fatigue, headaches, foggy brain, lack of concentration, ataxia, which is a lack of, of stability during walking or standing. These symptoms are often mistaken for other diseases and not really clarified as celiac disease. It is, as I said, common because it is genetically predominant. We have, within a hundred people walking the street, 30% of them have the genes for celiac disease, but only one or two out of those will develop the disease. And we don't know what the triggers are and what are the reasons why over a lifetime they could develop this disease. But when they do, and it could be at any age, they could have any particular symptom, of celiac disease or no symptoms, but we worry about the consequences of the disease, particularly whenit comes to

malnutrition and, uh, damage to the intestine among other extraintestinal problems.

Host: Doctor, tell us a little bit about diagnosis. Is there screening for celiac? If there is, who should be screened? Is there a risk profile that you look at?

Heitham Abdul-Baki, MD: There are multiple blood tests thatcan be done for celiac disease. I often see them misused. The guidelines tend to be clear in the United States. They are different in different countries because of certain practices and financial cost of blood testing. In the United States, the particular test that is needed to screen for celiac disease is the transglutaminate antibody. Or also known as the tissue transglutaminate antibody, TTG. And there's a specific antibody in that subcategory, which is the IgA, antibody of TTG, that needs to be used for the diagnosis. When we order the test, often it comes off as multiple results of IgA subcategory, IgG, subcategory of that antibody.

The focus has to be the IgA. And I often see the mistaken diagnoses of celiac disease because of the focus on the IgG sub portion, which is not correct. So, to screen for celiac disease, check the TTG IgA antibody. In addition to the TTG IgA antibody, it is important to check a total IgA level which provides the TTG IgA antibody, a sense of confirmation because if you have IgA deficiency and you don't create that protein in the first place, then you might not be able to mount that test or that result, you might not be able to get a positive result, so you might miss the diagnosis as well.

So check a TTG IgA antibody and check a total IgA to confirm the diagnosis or to screen for the diagnosis.

Host: That's great advice, Doctor. Now, because it can be difficult to diagnose and not all providers think along those lines, is there sometimes a confusion with irritable bowel syndrome and other gastrointestinal disorders?

Heitham Abdul-Baki, MD: This is absolutely correct. You earlier asked me if who should be screened for celiac disease apart from how they should be screened. And I can tell you that anybody walking in through the door from a GI clinic with any particular symptom, technically should be screen for celiac disease withthat TTG IgA antibody. If you look at the gastroenterology guidelines in the United States, the inclusion is so broad. They mention anything under the sun when it comes to gastrointestinal symptoms. And it's reasonable to test everybody. But often not everybody walks in with celiac disease as their complaint. We tend to identify a lot of patients with celiac disease, yet at the same time they have a complaint that may be related to irritable bowel syndrome and it tends to be a comorbid condition. And it's very hard to tease out these two from each other because, the symptoms are very similar, and there's no particular test for irritable bowel syndrome. The only pathway to this is to treat the celiac disease and address the underlying inflammation that's caused from celiac disease and few months down the line, follow up and make sure that the patient is feeling better or improving.

If not, then most likely what you're dealing with is an alternative diagnosis. Very commonly, physicians tell the patient that it's your celiac disease, but this is not or may not be true. What is necessary is that diagnose the celiac disease and you treat the celiac disease, and once you do and you normalize the blood test in three to six months, if it's normal in three to six months, it is unlikely for celiac disease to be the cause of the active symptoms, and you need to turn your head elsewhere and try to look for an alternative cause, most commonly tends to be irritable bowel syndrome in that case.

Host: You clarified that very well for us, Dr. Abdul-Baki. Now treatment options. Speak about what tools that you have in your gastrointestinal toolbox to work with patients that have celiac and even other GI disorders, because as you said, they can be comorbid conditions, so there's not necessarily the direct relation, but they can be together.

 You're dealing with a lot. Tell us some of the treatment options that are exciting in your field.

Heitham Abdul-Baki, MD: The treatment ofceliac disease is fairly straightforward, which is the good thing. If I were to pick a disease that may be easily managed, I would pick celiac disease. And the reason is that it's only diet, it's diet, diet, diet. And the particular reason it's diet is because gluten, which is a protein in certain foods that are out there, gluten tends to be the trigger or the enzyme that facilitates the activity of the disease.

 If you have celiac disease, that's something within you. It's something that you carry. It's sort of like someone who has diabetes. It's something that I have, it's a problem within my body, but if I don't eat right, or if I eat a lot of sugar that day, or I take a lot of fats that day, that could affect the disease activity.

It could cause a disease to be less controlled. It's the same situation with celiac disease. Celiac disease is something genetic inherently, and it is active within my body. If I eat gluten, then the gluten will activate it, will turn it on, and then it will cause more inflammation and problems in the body.

If I stop eating gluten, I can quiet it down and get it down to a level where it's no longer active. That doesn't mean that celiac disease is cured. I still have celiac disease, but it is well controlled. The mainstay of therapy, as I said, is diet, which is basically avoid gluten. You have to be on a strict gluten-free diet.

And it can come in different variations. Because some people say, well, I don't eat gluten, but I shower with shampoo that may have gluten or I use toothpaste that has gluten. And there are certain things that people are exposed to that have gluten, that they're curious about whether that's going to cause them problems or even eating out at a restaurant where the chef is preparing things with a different knife.

But we don't know if there's exposure to gluten. These are different spectrum of exposures that we can talk about more in detail, in an individualized sense with tahe patient, but the most important rule that I tell every patient walking out of the clinic with is I will not intentionally eat gluten.

That's the rule. And if you can do that, then you could probably achieve a good treatment of celiac disease in about 95% of cases. The other 5% of cases tends to be a little bit more difficult because the disease may have been a little bit more far gone. And this is what we call refractory celiac disease.

That means it's refractory to the diet. And then we would have to attempt certain medications, particularly, immunosuppressants. The first line of therapy in that situation is a medication called budesonide, which is a steroid that tends to suppress the inflammation within the small intestine.

And those are rarity of cases in this situation. But those are dangerous cases because those are the cases where you can have significant complications down the line, apart from malnutrition. It's rarely has been associated with malignancies such as lymphoma. These are cases where they definitely have to be followed by a specialist for celiac disease.

As far as the comorbid conditions that could happen, whenever a patient walks into our clinic with celiac disease, we keep our minds open and we keep an earful to any other symptoms that may be happening. And we try to hit every nail on the head. So assuming that the patient may have irritable bowel syndrome or may have another autoimmune disease because it can coexist with thyroid disease, it can exist with Crohn's disease, inflammatory bowel disease.

So we have to keep an open mind to other possibilities and while assessing the patient, if we have a sense that there might be a case that has a comorbid condition, we try to hit every nail on the head and treat those accordingly.

Host: Well, I'm so glad that you mentioned other autoimmune disorders because I was going to ask you the prevalence really of it coexisting with these other immune disorders. So when you do notice this, whether it's Crohn's or any of these others that could crop up, how important is that multidisciplinary situation at that point?

Because then you're bringing in all different specialists on a team. So I'd like you to speak about your team and the importance of the fact that this can get more complex as time goes on.

Heitham Abdul-Baki, MD: Thank you for that question. It's really important to address celiac disease in a multidisciplinary approach. That's the only way to appropriately treat celiac disease. The difference between a single clinic where a diagnosis is made and the patient is told to be on a gluten-free diet and told to follow up with a dietician, versus really seeing someone who has the support system, including a dietician and a behavioral therapist, and a nutrition doctor, makes a big difference.

 There are studies that actually show that in a private setting where a patient is diagnosed with celiac disease and told to be on a gluten-free diet, often the information that they get, for the celiac disease or the diet itself, they get it from online resources or they get it from the internet, or they get it from, you know, a friend, but not typically from a dietician.

And that may be false information and that might be misleading. So having the team is necessary for the patient. It's a necessary treatment for the patient. My team consists of phenomenal people. I have Dr. Paige Totino. She's a nutrition physician, who addresses so apart from me addressing the disease and the, the prognosis of the disease and education about the disease, Dr. Totino addresses the vitamin deficiencies, the weight gain, weight loss that may be associated with the disease, as well as the appropriate nutritional deficits that are necessary for the patient to fulfill. I also have Chelsea O'Rourke, who is our, registered dietician, who is an expert at Celiac disease.

I can't see the Celiac Disease Center functioning without her. She's technically providing the treatment. She is the therapy for the patient because in a sense, she gives them the guidelines and the diet that they need to follow. But not only telling the patient what is gluten and where to avoid it, but also giving real life advice about where to go shopping, where to get your groceries, what kind of recipes you could use, where you can find those recipes.

And also providing her own vast expertise and advice about the therapy, which is really important in our Celiac Center. Also, we have our team of behavioral therapists. Candace is currently our behavioral therapist, and she does a phenomenal job at making sure that there are no additional stressors that come along with celiac disease.

You see, it's a simple therapy to go on a gluten-free diet, yet it comes with a big lifestyle burden. This is the tricky part, is that you have to imagine every outing, every family meal you're going on, or every holiday; if you think about the feasts at the holidays, and how you are going to have to navigate a gluten-free diet when all the family is not eating a gluten-free diet.

And that is something that can be significantly stressful, emotionally jarring. And, particularly hard for patients who tend to travel a lot to locations where there aren't a lot of gluten-free options when it comes to restaurants and diet along the way can be very tough. So Candace addresses the behavioral stressors, the, the emotional stressors.

And also we have to be cognizant about any background anxiety state or depression state that may be contributing to the symptoms of celiac disease. And that's where the background irritable bowel syndrome can be like waving its hand. That team that I have, and also, we have to mention that our nurses are phenomenal.

Amy and Erin who coordinate the care of the patient, make sure that the testing is done on time, and also screen the patients to make sure that they are appropriate for the center to allow for appropriate allocation of those patients in the center to be seen in a, in a very, appropriate timing.

So this is my team at the Celiac Center, but the additional benefit of the Celiac Center, and the reason why we wanted it to be physically at the Autoimmune Institute is because of the need of screening for other autoimmune diseases, as you mentioned. The most common autoimmune disease associated with celiac disease is Hashimoto's thyroiditis and that's an autoimmune thyroid disease. So we need an endocrinologist. But that is not to mention that the patients do come in with joint pains. So often we tend to see a lot of psoriatic arthritis and sometimes they get diarrhea and that is not responding to the gluten free diet, which in rare situations we could identify Crohn's disease and colitis, and we have rheumatologists, dermatologists, other internal medicine specialists that also see autoimmune diseases within that physical realm of the Autoimmune Institute, which makes the transfer or the visit for the patient much easier. That means I could simply walk over to the next door and say, Hey, can I ask you to see my patient because I think he may have a rheumatological disorder and that facilitates the patient's care rather than having to wait for a few months later for another appointment. The patients tend to appreciate that facility.

Host: Doctor, you've given us so much great information. I'd like you to offer up some final thoughts for other providers and what you would like them to know as the key takeaways about celiac disease and the AHN Celiac Center.

Heitham Abdul-Baki, MD: I would like to welcome them all to visit our site, on the AHN website. I'm happy to take any of their questions anytime if they reach out to me personally. I'm always happy to provide advice regarding celiac disease. What I would tell them to do in their own practices is that keep an open mind to the possibility of celiac disease.

Avoid falling into the trap that celiac disease should cause gastrointestinal symptoms and maybe allow for a screening for celiac disease in patients where you may have a thought or possibility that they could have the underlying disease. Remember that it is genetic, so it runs in families. So first degree relatives need to be screened if a patient has celiac disease. Also, remember the testing necessary for that is only the total IgA and the TTG IgA antibody. Any other antibodies in that situation may not be accurate. I'm happy to give additional advice because there's a nuances to the testing and sometimes it can be a little bit confusing.

When you diagnose someone with celiac disease, please provide them the opportunity to visit our Celiac Center, to come and, and get the education necessary. What I'd like to do typically is provide them all the education they need. Give them that one visit where they meet with all of us, and then I will send them back to you for their follow-up care with a detailed instruction of their disease activity and what we need to be doing. So I'm happy to work with you because we have so many patients and there's no way to fit them to get them the care. So your care is absolutely essential for the follow-up, but we're happy to provide the advice and the additional recommendations that might facilitate your care of these patients.

Host: Thank you so much, Doctor, for joining us today and sharing your incredible expertise for other providers and to learn more or to refer your patients to Dr. Abdul-Baki, please call 844-MD refer, or you can visit ahn.org. Thank you so much for listening to this edition of AHN Med Talks with the Allegheny Health Network.

Thanks so much for joining us today.