New research out this month investigates why there’s such a high rate of “under-diagnosis” of celiac disease in the United States.  Researchers said doctors performing biopsies on the small intestine may be, in part, to blame for the 97%* of the celiac population that remains undiagnosed.

Most of us who have experienced a celiac diagnosis (or suspected celiac) have gone through a biopsy after testing positive to blood tests.  The biopsy is considered the gold standard in celiac testing.  But what many of us may not have known, until this study was released, is that the recommended guidelines for a celiac biopsy say doctors should take at least 4 samples in the small intestine.

The Celiac Test Research

According to an article in e! Science News and research published in the July issue of Gastrointestinal Endoscopy, researchers looked at the records of  132,000 patients who had had a biopsy of the small intestine for a variety of medical symptoms : diarrhea, abdominal pain, esophageal reflux and anemia.  Plus, doctors suspected celiac disease — only 35 percent of the patients had at least four samples taken.

“Celiac disease can affect the small intestine in a patchy distribution, and so just one or two biopsy samples could potentially miss the evidence of the disease,” said lead author Dr. Benjamin Lebwohl from the Celiac Disease Center at Columbia University Medical Center.

So what was the most common number of specimens taken?  2!  What may have happened if the correct number of specimens was taken? The article explains “adhering to the recommendation of submitting at least four specimens more than doubled the diagnosis rate of celiac disease.”

“The process of increasing the number of specimens from two to four takes approximately one extra minute during endoscopy,” Dr. Lebwohl said.

Dr. Peter Green, Director of the Celiac Center at Columbia University Medical Center, summed up the research by saying they will continue on to look into other reasons for lack of diagnosis of celiac disease.  Dr. Green said “In this study we identified just one of the factors contributing to the high rate of under-diagnosis….We plan on studying other physician-related factors that may also be operative.”

My Take

What the article DIDN’T mention that the research DID, was another possible reason for the outcome of the study:  “The guideline publication occurred during the study period, possibly influencing clinical practice and confounding results.”

So the minimum 4-specimen guideline was apparently launched during the span of 2006-2009 — the years from which the data came.     While it gives us an idea as to why many celiacs may still go undiagnosed, I would like to see the results of the same study after the guidelines were announced.

I appreciate Columbia University digging for reasons for the underdiagnosis rate of celiac disease in the country.

*Source:  University of Chicago Celiac Disease Center Fact Sheet

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