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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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    Ha! Follow up? I was diagnosed in 2007 and a new doctor I just got about six months ago mentioned that I should be monitored, but that was the first I heard of it. 5 years ago, the gastroenterologist basically handed me my diagnosis and wished me the best of luck. Suggested I go look at a couple of websites. That's it. I think my doctor now actually is going to do something but I didn't even know there was SUPPOSED to be follow up until recently.

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    I echo the "what follow up care?" sentiment. Two doctors have said to me that as long as I'm not eating gluten I'm fine. All three of my doctors act like I'm a hypochondriac when I try to discuss what tests I should have and what supplements I should be taking.

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    I couldn't agree more. If a patient presented with diagnosed heart problems or diabetes, there is immediately recognised attention and follow up. But "'coeliac disease?' It's only a fad." Or "If you go gluten-free you'll open yoursef up to celiac disease," both of which are total rubbish. It's like saying if you cut out sugar you're up for diabetes! However, in the remote West Coast of New Zealand where we moved for my husband's job we discovered a highly competent South African general practitioner who immediately improved my quality of life with his interest and expertise in celiac disease. I am indebted to him and all physicians whose knowledge and empathy allows us to lead a normal life. Thank you!

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    What follow up care? I once found an article that explained exactly what follow up was necessary and took it to my doctor. She asked if she could keep it and of course I let her thinking that finally someone would help. Next visit she said she didn't understand what I wanted her to do.

    My daughter asked the doctor at Madigan hospital to test her to see if she was getting hidden gluten. The doctor had no idea how to even order the blood test.

    Finally found a doctor who moniters my osteoperosis and checks my vitamin levels but doesn't think it's necessary to do a blood test to see if I'm getting hidden gluten.

    I really haven't found a doctor that knows much about how to diagnose let alone follow up.

    As far as I know, the only way to know you have celiac disease is to have a biopsy of your small intestine. Mine was not found by multiple blood tests. It was found in trying to determine a reason I was losing my iron and being very anemic. That resulted in having a paraesophageal hernia repair. However, since I was diagnosed with celiac disease, I have followed a gluten-free diet but NO follow ups have ever been ordered by the doctor. I plan to contact him.

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    I believe that most gastrointestinal doctors don't understand the need for follow up. I agree with the author "what follow up?". Plus not many Internists even understand the scope of the disease. You are on your on and you must be proactive with your own care.

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    Follow up? Ha ha. I was diagnosed over 3 years ago and my doctor still doesn't really believe I have anything to worry about. This, after a positive biopsy and almost complete recovery from all symptoms I had been having. I do all my own research and then tell them what to do. It's pathetic.

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    "Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,†- This certainly matches my experience thus far.

     

    Where can one find the latest follow-up procedures recommended by the American Gastroenterological Association (AGA)?

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    I was "diagnosed" by my endocrinologist after he observed that my hyperparathyroidism stopped once I went on a gluten-free diet and vitamin D therapy, and that my osteopenia improved. The blood tests he had given me were inconclusive, but the other evidence persuaded him that gluten was the problem. I see him every six months, and he does blood tests to make sure all is well.

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    I certainly agree. I really feel most patients have to learn on their own with little guidance. Follow up may be a long year ahead. Hopefully you are following the diet carefully. Thank goodness for sites like this.

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    My daughter had problems. The nurse called to tell her she had celiac disease. NO follow up, NO scheduling with nutritionist... nothing. As a mother, it makes me upset to see how this is treated. Most auto-immune diseases cause outlaying problems. This is the way she found out about it: vitamin deprivation, hair falling out, etc.

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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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