A major reason why celiac disease is still under-diagnosed in the U.S. may be because of under-performance of small bowel biopsies during endoscopies.

These findings were published recently online in the journal Gastrointestinal Endoscopy. Leading researcher, Benjamin Lebwohl, MD, MS, assistant professor of clinical medicine in the Division of Digestive and Liver Diseases, and a gastroenterologist and epidemiologist at the Celiac Disease Center, CUMC said:

“The vast majority of people with celiac disease in the United States remain undiagnosed. This stands in contrast to countries in Western Europe and Scandinavia, where patients with celiac disease are much more likely to be diagnosed. Are patients with celiac disease in the United States not seeking medical attention? Actually, this study shows that some of these undiagnosed patients may be coming to see a gastroenterologist and still are not getting the biopsy they need for a diagnosis.”

Dr. Lebwohl and his team obtained data from the Clinical Outcomes Research Initiative National Endoscopy Database (CORI-NED) to identify all patients who had an upper gastrointestinal endoscopy between 2004 and 2009 for reasons, such as weight loss, iron deficiency, anemia, or diarrhea. CORI-NED a multi-center database, which contains a broad section of U.S. endoscopy centers, including community-based and academic settings.

Lebwohl explained: “Any one of these symptoms could be compatible with celiac disease. We know that the blood tests for making this diagnosis are not perfect, and so we argue that most patients having an endoscopy for one of these reasons should have a biopsy of the small intestine to test for celiac disease.”

The findings revealed that from more than 13,000 patients who underwent an endoscopy during the 6-year period, physicians performed a small biopsy in just 43% of these patients.

Dr. Lebwohl remarked: “We thought that biopsy rates would be higher, especially considering the increased public awareness of celiac disease.” Even though the rates increased slightly with time, in 2009, the biopsy rate was only 51%. Lebwohl continued: “As a result, it remains possible that a patient with celiac disease may seek health care, see a gastroenterologist, and have an endoscopy, and yet may still remain undiagnosed.”

The researchers observed that men were less likely to have a biopsy than women, which may offer a clue in a long-observed phenomenon of an unequal gender ratio amongst celiac patients.

Senior study author, Peter H.R. Green, MD, professor of clinical medicine in the Division of Digestive and Liver Diseases, and director of CUMC’s Celiac Disease Center said:

“Men are just as likely as women to develop celiac disease, but women are much more likely to be diagnosed. Perhaps men aren’t being diagnosed because their doctors aren’t biopsying them, even when symptoms are compatible with celiac disease. This becomes a self-fulfilling prophecy: men aren’t being biopsied, diagnosis rates in men remain low, and so doctors erroneously think that celiac disease is a ‘woman’s disease.”

The results also showed lower biopsy rates amongst African-Americans, Hispanics and older patients. Dr. Green explained: “We know that celiac disease can occur at any age, and is not limited to Caucasians; but here again this celiac disease stereotype of the young Caucasian is reflected in the biopsy practices of gastroenterologists nationwide.”

The researchers will be continuing their studies and aim to educate physicians on the benefits of small bowel biopsies.

Written by Petra Rattue