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  • Jefferson Adams
    Jefferson Adams

    Poor and Inconsistent Medical Follow-Up Common in Celiac Disease

    Reviewed and edited by a celiac disease expert.

    Celiac.com 09/07/2012 - Many people with celiac disease will tell you that getting a proper diagnosis is just part of the battle. Maintaining a strict gluten-free diet, and getting adequate medical follow-up care can be nearly as challenging as getting a proper diagnosis.

    Photo: CC--tjmwatsonA group of researchers, led by Joseph A. Murray, MD, AGAF, of Mayo Clinic, confirms that assessment in a new study. The study appears in Clinical Gastroenterology and Hepatology, and shows that follow-up care for patients with celiac disease is often poor and inconsistent.

    For their study, researchers collected data on 122 patients diagnosed with celiac disease between 1996 and 2006 in Olmsted County, MN. The patients were 70 percent women, and averaged 42 years of age.

    The researchers then calculated the rates at which patients were given follow-up exams from six months to five years after celiac disease diagnosis.

    Of the 113 patients the study followed for more than four years, only 35 percent received follow-up analyses that met AGA guidelines. The other patients did not receive medical follow-up that met "even the most lax interpretation of current guidelines,” said Dr. Murray.

    The researchers used the Kaplan-Meier method to estimate event rates at 1 and 5 years. They classified patients according to categories of follow-up procedures recommended by the American Gastroenterological Association (AGA).

    The study shows that even with widespread circulation of follow-up recommendations, plenty of patients are not getting proper follow-up for celiac disease.

    According to Dr. Murray, gastroenterologists with the expertise in celiac disease need to encourage active follow-up of celiac patients and improve their overall quality of medical care.

    Basically, says Dr. Murray, celiac disease "should not be different from other chronic conditions for which medical follow up is a given such as liver disease, inflammatory bowel disease or even gastroesophageal reflux disease."

    Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,” Murray adds, pointing out that it is important for doctors and patients to understand the need for proper medical follow-up of celiac disease.

    The authors note that, since gastroenterologists are leading the way in the detection of celiac disease, and since it is a chronic condition, with possible long-term complications, improved communication between gastroenterologists and patients can help to ensure that patients get important follow-up care, and thus improve outcomes in celiac disease.

    What are your thoughts? Do you feel that you've gotten adequate follow-up care for your celiac disease? Share your comments below.

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    I never got any care for my celiac disease, and certainly no follow up care. I had a very hard time even getting doctors to test me for it, despite the fact that I had suffered with the classic symptoms for all or most of my life. I was always sickly, anemic, short and skinny.

    My symptoms match yours plus 14 miscarriages. The only one that held (due to a lack of folic acid) was the last. My sister suggested that I try going off gluten for a while - both brothers "had" celiac. So did I. The pregnancy took. Eventually I read the book after so many other symptoms. Alas, after the endoscopy, no celiac. Unfortunately the MD I saw was so celiac that he seemed to wish to abandon me. Oh well. Who knows. At least you got the diagnosis. Now you have to stick to the diet. It's a pain. At least you know.

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    Great article. It is so true that there is no follow up care and the doctors do not care about it, or maybe they don't know how to proceed because the waters are uncharted. More and more people are being diagnosed daily. I hope that the future brings change. I sure hope so.

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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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