Once considered a rare disorder, celiac disease is now one of the most common small bowel disorders in the U.S. Every gastroenterologist deals with celiac disease, celiac patients and celiac misinformation.
During Monday’s AGA symposium Celiac Disease: Causes and Dilemmas, a panel of experts will review the latest epidemiologic evidence surrounding celiac disease, providing insight into the diagnosis and clinical management of the disease.
According to Carol E. Semrad, MD, AGAF, the session’s co-chair, the prevalence of celiac disease has increased five times over the past 40 years. The drivers behind this increase are not clear, nor is it clear why some patients with celiac disease do not respond adequately to treatment. Widespread misinformation adds more complications, Dr. Semrad said.
“The most common presentation has changed from diarrhea to predominately extraintestinal manifestations or silent disease,” said Dr. Semrad, a gastroenterologist and professor of medicine at University of Chicago Medicine. “Some individuals don’t even know they have celiac disease and others are convinced they have the disease when they do not. Making a secure diagnosis remains a problem.”
This is particularly true from patients who are already on a gluten-free diet or have mild inflammation that may require specific application and interpretation of serology, biopsy and genetics, or possibly all three, Dr. Semrad said. Celiac disease is treated with a gluten-
free diet, but sensitivity to gluten is not sufficient to confirm celiac disease.
Meanwhile, many patients are trying to shortcut the diagnosis by using stool-based antibody tests that have not been validated for celiac disease, or genetic tests that are misinterpreted as positive for celiac disease. Other patients attempt to self-diagnose based on symptoms. Still others seek out practitioners who espouse alternative and untested theories such as “five cardinal signs of celiac” or “foods guaranteed to stop celiac.”
“There is a danger that we are losing celiac disease — a real disease — in this morass of non-science,” said session co-chair Joseph A. Murray, MD, professor of medicine at the Mayo Clinic in Rochester, MN. “The field has almost been hijacked by non-scientists. The practicing gastroenterologist is getting swamped by misinformation.”
Another emerging area of confusion is the patient with celiac disease who is nonresponsive or has incomplete symptom or biopsy improvement on a gluten-free diet. Recent data confirm that not all patients with celiac disease respond to a gluten-free diet, Dr. Murray explained. But questions about nonresponse or inadequate response to a gluten-free diet are particularly difficult for patients who removed gluten from their diet before appropriate testing to confirm that they have celiac disease.
Different approaches to patients who do not respond to gluten-free diets can be even more confusing than making the original diagnosis of celiac disease. Some patients appear to be true nonresponders. Others may admit to nonadherence with the gluten-free diet and some may be suffering the consequences of unrecognized gluten.
“There are no clear answers to questions about how we manage patients with celiac disease and partial histologic recovery,” Dr. Semrad said. “But this symposium is going to address the latest evidence on these dilemmas to facilitate decision-making and management of celiac disease. Regardless of where you practice, you are going to see these patients and these dilemmas. This symposium is your one opportunity to get some answers.”
Please refer to the schedule-at-a-glance in today’s issue for the time and location of this and other DDW® events.