Debra Silberg, MD, PhD, on Celiac Disease: “The Guidelines Are Really Helpful, but They Have to be in the Right Hands”

Celiac disease screening among patients aged ≤ 20 years is low and has significant disparities by age, race, and ethnicity, a recent study found. The research was presented at 2024 Annual North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) Meeting in Hollywood, Florida, from November 7 to 9, 2024.

Guidelines state that physicians should recommend celiac disease screening for patients who have a particular condition, such as dental enamel defects and iron deficiency, but as investigator Debra Silberg, MD, PhD, from Beyond Celiac, told HCPLive at NASPGHAN, not everyone reads the guidelines.

Getting screened for celiac disease is simple, requiring only a blood test. If a patient screens positive, they may need an endoscopy, but this is not necessary for all patients. Since the screening process is so simple, Silberg said the most important thing is educating physicians about who should get screened for celiac disease.

Other than education, Silberg said that physicians should not be biased to what ethnicity or race someone else when determining who should get screened for celiac disease. Approximately 20% to 30% of the entire population has a genetic predisposition to celiac disease, and Silberg explained this was not based on race or ethnicity but “across the board.”

“We're actually finding now that there's a high incidence of celiac disease in India, and I know that when I was in medical school, we were taught that it was a Northern European disease,” Silberg said. “We're understanding that that's not the case, but it's hard. It's kind of ingrained, so we need to do better education to change that.”

Silberg said the main barrier when it comes to celiac disease is what comes after the diagnosis—the expense of the gluten free diet, the concern about food insecurity, and the act of getting the gluten free food.

Silberg emphasized the importance of educating physicians on celiac disease and the importance of looking at these guidelines.

“I would say that the guidelines are really helpful, but they have to be in the right hands,” Silberg said. “So, you need to make sure that primary care physicians are getting it, family physicians are getting these guidelines, can't just be gastroenterologists because by [the] time they get to a gastroenterologist, someone's already thought that they have a GI issue, and so they're presenting to you as a gastroenterologist, and a lot of the guidelines are from GI societies. We need to get these into the general physician population, so primary care physicians, family physicians.”

References

^{Miller, E, Avery, K, Ratner, A. Insufficient Adherence to Celiac Disease Screening Recommendations With Disparities By Race, Age, And Presenting Condition. Presented at NASPHGAN 2024 in Hollywood, Florida, from November 7 – November 9, 2024.}