Turning the Page on Celiac Education

BooksBy Matt Wood

Celiac disease, an auto-immune disorder that prevents the digestion of gluten in the small intestine and inhibits absorption of nutrients, is gaining awareness in the United States. Gluten-free options are popping up on restaurant menus, television stars such as Elisabeth Hasselbeck and Jennifer Esposito are going public with their diagnoses, and major food companies including General Mills are developing more gluten-free products and market directly to the celiac community.

A 2003 study estimated that 1 in 133 people in the United States have celiac disease. That means at least 3 million people in this country are living with celiac, but screening studies show that identification of patients lags behind the actual prevalence of the disease. Up to 97 percent of those cases are undiagnosed.

Concerned that a lack of physician awareness of celiac could be contributing to a delay of up to 11 years in the diagnosis of adults in North America, Stefano Guandalini, MD, Medical Director of the University of Chicago Celiac Disease Center, co-authored a study that looks at how well gastroenterologists adhere to established diagnostic and treatment guidelines for celiac disease.

Guandalini and his colleagues at the Celiac Disease Center and the NorthShore University Health System conducted a survey of gastroenterologists who attended the annual Digestive Disease Week conference in 2009. A total of 169 doctors answered questions about vignettes that described cases of possible celiac disease. Guandalini’s team compared the responses to those of 22 experts on celiac disease, and found that very few of the non-expert physicians were able to follow correct diagnostic approaches. “This is a bit alarming because if you think of it, the people who were there were already screened in a way because they are those who actually want to attend a national meeting, so they are seeking an education,” Guandalini said. “Not only that, but they received this paper requesting to participate in this survey, so it means that they already thought themselves to be familiar with celiac disease.”

Until very recently, Guandalini said, basic medical education didn’t teach that celiac disease was widespread in the United States. “Nobody really was ready to accept the 1 percent prevalence of celiac disease,” he told the New York Times recently. In that article he pointed out the example of a medical textbook that put the prevalence of celiac in the United States at 1 in 10,000 as recently as 1999. And when doctors did have any familiarity with celiac, it was with the “classical presentation” of a small child with chronic digestive problems, instead of the myriad symptoms in both children and adults that can lead to a celiac diagnosis, from muscle cramps to an itchy skin rash, especially around the elbows.

As one of the country’s leading authorities, the Celiac Disease Center is doing its part to close this gap in medical education. It recently hosted its sixth annual Preceptorship Program, an on-site, intensive two-day training course for medical professionals who want to learn about diagnosing and treating celiac disease. This year more than 30 doctors, nurses and dieticians attended seminars, got hands-on training and sampled gluten-free foods. While the center offers a comprehensive approach to caring for patients and research toward finding a cure, Guandalini says that medical education is a primary goal. As demonstrated by this latest study, he said, “Clearly there is a lot of education that needs to be done.”

Parakkal D, Du H, Semer R, Ehrenpreis ED, & Guandalini S (2011). Do Gastroenterologists Adhere to Diagnostic and Treatment Guidelines for Celiac Disease? Journal of clinical gastroenterology PMID: 21959324

About Matt Wood (531 Articles)
Matt Wood is a senior science writer and manager of communications at the University of Chicago Medicine & Biological Sciences Division.
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