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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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    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.

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    I was diagnosed with celliac disease 7 years ago and have had one followup to see how things are going since then. My doctor seems to think no followup is needed if I follow a strict gluten-free diet. I told him that no matter how closely I watch my diet there can always be hidden gluten in products that I am totally unaware of. You are so right, we more often than not don't get any followup at all unless we stomp our angry feet and demand we get some care on this.

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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.

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    After being diagnosaed with celiac disease and being sent to a nutritionst, I was not made aware of any further followup or care being necessary. Other than following a gluten-free diet.

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    What follow-up care? Our PC agreed with the celiac diagnosis after I found what he had by research of his symptoms. He almost died, after a severe diverticulitis attack and the doctors didn't know what was wrong with him. "Just stay away from gluten" is the only treatment that we know about and was told to do. He was 76, is now 81, and is experiencing loose stools. The new PC is doing stool cutlures for parasites and C-Diff. He also has diabetes, PAD, hypertension, atherosclerosis. and diverticulosis. A dietary challenge for sure! I don't think most doctors know they are supposed to followup celiac disease.

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    I have had celiac disease for over 5 years. I get no follow up at all. If I ask a question, no answer. The doctor I started with was great, but moved out of area. My regular doctor did say she would check my blood once a year for vitamin levels. With my muscle spasms, I now know from experience what vitamins I need. My doctors are no help at all.

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    I agree with above. WHAT FOLLOW UP!? I was diagnosed 23 years ago. I was my doctor's FIRST celiac patient and he was THRILLED to have me. He was great and insisted on regular visits. 5 years later, my insurance changed. I have had several serious bouts and ALL the doctors have done VERY LITTLE for me. I really believe they have no idea how to handle someone with 23 years of gluten-free!

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    So true! Eight years ago, I went gluten-free after suffering, losing 20 pounds, having my gall bladder removed, and having my gastrointestinal doctor tell me nothing was wrong with me and maybe I would benefit from hyphosis. After doing my own research, I went on a gluten-free diet, and was miraculously better within 2 days. When I went to make an appointment with a supposed celiac specialist in the area, I was told I had to wait 2 months. When I finally saw him, he said I had to go back on gluten to give me an official diagnosis. I told him that I would dig a grave and jump in before I would eat gluten. So, he just told me to stay on the diet and released me - no concern for a followup. I think most doctors just don't know where to go with it.

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    Take a previous copy of the lab test for diagnosis of celiac disease; the tissue transglutaminase IgA antibody test. Take it to your health care provider and "tell" them you want this lab test. Call the lab testing company and ask for the test code. Give this to the doctor and tell them this is what you want. It works for me.

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    I was self diagnosed with celiac disease at after 40, after 35 years of symptoms. Many general practitioners and specialists did not diagnose the problem over the years.

     

    I have very little follow up care at this point from my gastrointestinal doctor. My PCP checks into my complaints, but related problems such as neuropathy, abdominal pain, and other issues are addressed individually without any coordinated care.

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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 biology, anatomy, medicine, science, and advanced research, and scientific methods. 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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