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  • Jefferson Adams
    Jefferson Adams

    Low Rates of Biopsy May Drive Under-diagnosis of Celiac Disease

    Reviewed and edited by a celiac disease expert.

    Caption: Photo: CC--a.drian

    Celiac.com 08/01/2012 - Failure to conduct small bowel biopsies during endoscopy, especially on men and people of color, may be one of the reasons that celiac disease remains under-diagnosed in the United States, according to a new study. This finding was made by a research team that set out to study sex and racial disparities in duodenal biopsy evaluations for celiac disease.

    Photo: CC--a.drianThe study, by researchers at the Celiac Disease Center at Columbia University Medical Center (CUMC), revealed that the United States has low overall rates of small bowel biopsy.

    The research team included B. Lebwohl, C.A. Tennyson, J.L. Holub, D.A. Lieberman, A.I. Neugut, and P.H. Green. They are affiliated with the Celiac Disease Center of the Department of Medicine at Columbia University Medical Center at Columbia University, and the Department of Epidemiology at the Mailman School of Public Health at Columbia University in New York.

    Celiac disease is a common but under-diagnosed condition in the United States. Moreover, studies indicate that, although celiac disease occurs at the same frequency in both sexes, women are diagnosed at a rate that is twice that for men (2:1).

    Black patients are also diagnosed with celiac disease less frequently that non-black patients, though the rates of celiac disease in the black population remain unknown.

    For their retrospective cohort study, the team set out to measure the rates of duodenal biopsy during Esophagogastroduodenoscopy (upper endoscopy, or EGD) in patients with symptoms consistent with celiac disease. These were adult patients undergoing upper endoscopy for symptoms including diarrhea, anemia, iron deficiency, or weight loss, in which the endoscopic appearance of the upper GI tract was normal.

    To accomplish their study, the team searched the Clinical Outcomes Research Initiative National Endoscopy Database from 2004 through 2009.

    They looked at data for 13,091 individuals who met the inclusion criteria, 58% of whom were female, and 9% of whom were black.

    They found that doctors performed duodenal biopsy an average of 43% of the time; 45% for female patients and 39% for male patients (P < .0001). Black patients received duodenal biopsy in 28% of EGDs performed, compared with 44% for white patients (P < .0001).

    Multivariate analysis showed that male patients (odds ratio [OR] 0.81; 95% CI, 0.75-0.88), older patients (OR for 70 years and older compared with 20-49 years, 0.51; 95% CI, 0.46-0.57), and black patients (OR 0.55; 95% CI, 0.48-0.64) received duodenal biopsy at lower rates overall.

    Over time, rates of duodenal biopsy rose slightly, but overall remained low in patients with possible clinical indications for biopsy.

    From these findings, they conclude that non-performance of duodenal biopsy during endoscopy may be contributing to the under-diagnosis of celiac disease in the United States.

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    The problem here is not that there is failure to perform biopsies, but that the biopsy is required at all for diagnosis of celiac disease, but this goes back to how celiac was defined as a disease 50-60 years ago--before the sophisticated blood tests of today were available.

     

    A biopsy should not be necessary if:

    1) blood work is positive and

    2) dietary response is adequate.

     

    It's great to report on the findings of recent studies, but it's also important to analyze--and in some cases, criticize--those findings.

     

    In most cases, it's OUR tax dollars, and the dollars WE have paid the pharmaceutical industry, that are funding these studies. We have every right to question, analyze, and criticize them.

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    My husband was just diagnosed with blood work for celiac disease in June and the doctor immediately scheduled him for a biopsy. We opted out for a couple of reasons. We have a very high deductible so the burden of cost of the biopsy would fall to us, and if the treatment plan is "change your diet" why would we have the biopsy? It has been 2 months and he is doing great. He has only had 3 times that he has been sick (and we know what he ate). He is putting on some weight. Leg cramps don't exist anymore. Bowels seem to be normal. I am anxious for a year to pass and have a CMP done to see if all his blood work is in the normal range. It took about 12-15 years of misdiagnoses to finally figure this out, so he has been extremely malnourished. Dietary response has been excellent and cheap.

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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