Brian Lacy, MD, and Benjamin Lebwohl, MD, on the Consequences of Uncontrolled Celiac Disease

Drs Lacy and Lebwohl conclude their podcast series with a conversation about the long-term consequences of uncontrolled celiac disease.

Brian Lacy, MD, is a professor of medicine and gastroenterologist at Mayo Clinic Jacksonville, and Section Editor for Stomach and Small Bowel Disorders for the Gastroenterology Learning Network. Benjamin Lebwohl, MD, is the Louis and Gloria Flanzer Scholar, an associate professor of medicine, and director of the Celiac Disease Research Center at Columbia University Medical Center in New York.

For more from the podcast series, click here.

TRANSCRIPT

Rebecca Mashaw:  Hello and welcome to another podcast from the Gastroenterology Learning Network. I'm your moderator, Rebecca Mashaw. Today, our series on celiac disease will conclude with a conversation between Drs. Brian Lacy and Ben Lebwohl about the importance of controlling this condition to avoid long-term consequences of untreated disease.

Dr. Brian Lacy:  Hi, I'm Brian Lacy, professor of medicine at the Mayo Clinic in Jacksonville, Florida. I'm continuing my conversation on celiac disease with Dr. Ben Lebwohl, associate professor of medicine and director of the Celiac Disease Research Center at Columbia University in New York City.

We're continuing our conversation on celiac disease today with some important points about the long-term consequences of untreated celiac disease. We've alluded to the concerns about downstream, serious consequences of having celiac disease, and fortunately, they're not that common. Could you let our listeners know what are some of the most common long-term, serious consequences of untreated celiac disease?

Dr. Ben Lebwohl:  Celiac disease can be serious even though it's very treatable with this dietary treatment. Undiagnosed celiac disease in the long term, especially in people who are having symptoms and yet are going on to continue to eat gluten, that can cause major problems down the road.

Mechanistically, you can imagine, if you're not absorbing calcium, vitamin D, iron, you could have long-term consequences, iron deficiency anemia which can cause symptoms but also osteoporosis and osteoporotic fractures. That, we know.

There's data to support the notion that in people with celiac disease who failed to heal on follow-up biopsy, for example, they have a greater risk of hip fracture and other likely osteoporotic fractures than people whose celiac disease have healed after adoption of a gluten-free diet.

There's also an increased risk of certain cancers. The one that we think the most about is lymphoproliferative malignancies. There's enteropathy-associated T cell lymphoma, a kind of lymphoma centered on the gut that has a poor prognosis but thankfully is very rare.

The more common kinds of lymphoma, your non-Hodgkin's lymphomas, those are adding increased risk among people with celiac disease. There is somewhere between a 2- or 3-fold increase rate of developing non-Hodgkin's lymphoma in the long term among people after a celiac diagnosis.

The good news is that it does appear that healing matters. Adoption of the gluten-free diet, which can result in healed intestinal villi, is associated with a reduction in that risk. In one such study out of Sweden, among people with celiac disease who have healed on follow-up biopsy, they no longer have an increased risk of all types of lymphoma compared to the general population.

That's one of the motivating factors when talking about the need to heal histologically on follow-up biopsy and, related to that, the need to stick to a strict gluten-free diet. There is a category of celiac disease that we also worry about, that thankfully is rare but can be dire if it occurs. That's refractory celiac disease.

That's a situation in which a patient has ongoing symptoms of malabsorption, predominantly diarrhea but often unintentional weight loss, ongoing intestinal villus atrophy despite all efforts to strictly adhere to the total gluten avoidance.

These people, they tend to be older. Most commonly, it will occur in someone who is actually diagnosed with celiac disease at a later age, again, underscoring the importance of identifying, diagnosing, and treating celiac disease early.

Our treatments for that are limited. Often, we borrow from other conditions. We might use IBD medicines including 5-ASA agents like mesalamine for refractory celiac disease, or budesonide.

One strategy that's been employed with some success is to take budesonide that's been aimed for ileal release for Crohn's disease, but actually to open up the capsule and to have it open because there you have more proximal release in the duodenum where the lesion in celiac disease is.

Strategies like that are sometimes employed to treat refractory celiac disease. There's a subset of people with that kind of refractory celiac disease that do go on to develop enteropathy-associated T cell lymphoma.

These are the patients that keep us up at night. We really worry about them. Thankfully, they're a very small minority. Far less than 1% of people with celiac disease will go on to develop that form of refractory celiac disease and lymphoma.

But again, it's a motivator. It's a reason why we take this condition very seriously and take the gluten-free diet seriously.

Dr. Lacy:  Ben, thank you. This has been a great discussion. I learned a lot. I know our listeners learned an awful lot, as well. Any last comments for our listeners?

Dr. Lebwohl:  I would add that celiac disease is more common than it used to be, and that's not just because we're testing for it more. We're aware of it more. There's more celiac disease out there that's probably related to these other autoimmune conditions that are rising, related to the hygiene hypothesis, the idea that we're being exposed to fewer germs and more antibiotics in more recent generations.

But realize that because there's more celiac disease out there, it's on us to recognize it and diagnose it so we can treat these patients and get them on their way to wellness.

Dr. Lacy:  Ben, thank you once again for taking the time and effort to share your wonderful expertise and insights into celiac disease during this podcast series, and thank you to our listeners for joining in today.

We hope you found this podcast helpful and informative, and we hope you join us in the future for other wonderful podcasts on these disorders of gastrointestinal disease. Thank you.