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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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    The reason I said this article is so good is because of what it doesn't say. Even if you are testing positive, (and really what sort of tests are there, what medicine is there to take?) will elimination be the only cure? At this point of having this disease for 10 years, I have found the only way to stay safe is to watch what you eat and read as much as possible so that you can be educated about the topic.

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    I have received no followup care from my gastroenterologist since being diagnosed with celiac disease in early January 2012. I point blank asked him when he needed to see me again and he said, "I'll let you know, just eat gluten free and you will be fine". I was hospitalized in January and February due to complications with the celiac disease (neurological problems, difficulty swallowing, dehydration and weight loss). Still no followups to check to see if I am absorbing enough nutrition. I asked my local doctor to please run a test to see if my body was reacting to other foods like it does to gluten, gave her the information where to get the test, etc., and she still does not see the importance of it and has not ordered the test! It is frustrating and I do feel like if I want anything done, that I just have to do it myself.

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    I agree... follow up? What is that? I've never had a doctor say anything about follow up... I don't even know what follow up would be. It's been almost 2 years since my celiac disease diagnosis and none of my doctors even discuss it with me, other than to ask if I'm sticking to the gluten-free diet. I still have stomach problems.

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    My gastroenterologist told me I had celiac disease and that was it. No explanation (I was familiar with it because my sister has it), no suggestions, no anything - just "you have celiac disease." He never mentioned ever seeing me again. And you can bet I won't ever go back to him.

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    I have been diagnosed for 7 years and no follow up, blood tests, etc. even suggesting that I need continued follow up care. Thanks to this article, i will seek a doctor that treats celiac disease long term. I have, up to now, considered it my total responsibility.

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    Admittedly, I've been a difficult case. Celiac disease has resulted in seizures, visual anomalies, painful neuropathy and joint pains, in addition to the gastrointestinal difficulties. Also, I cannot tolerate most gluten-free foods without triggering devastating and painful symptoms that will last 4 to 6 months. My Midland Texas gastro told me there wasn't a doctor anywhere in the West Texas area that could help me. He adamantly suggested that I go to a diagnostic hospital (Scott & White of Temple, TX) for further testing. Not having any insurance, I told him that that was impossible for me to do. With the 3rd insistance for me to go to a diagnostic hospital, I asked him why and what he thought they might find. His response: "It will be something genetic and something autoimmune." Doesn't that define celiac disease fairly well?!I thought that was his way of dismissing (aka dumping) me. I haven't been back to him since--almost 3 years ago. I have gotten to the place that I seldom want to discuss this illness with doctors. Frustration is an understatement, and I feel medically abandoned and alone. It is no wonder to me that many do not follow through with consistent medical care.

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    How typical! Australia is NO better! my local general practitioner even prescribed me medicine containing gluten, despite knowing I'm a coeliac! They just don't care. If the medical condition doesn't affect your doctor they don't care about your condition. Money is all that matters! I nearly died before I was finally diagnosed! It took more than 13 YEARS of my push, push, pushing and finally I told a gastroenterologist what test I wanted! Was he a humble man when he came out of surgery! Let's hope my battle with him helps someone else. Mind you, he still wasn't sure if i had Crohn's disease or coeliac disease! Great medical care, eh?

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    Follow up? I had to find out I was a celiac on my own. (I heard a radio broadcast on it and immediately ceased eating gluten, which resolved my symptoms.) For years, doctors had just shrugged when I complained about my symptoms (many of which, including dermatitis herpetiformis, are classic celiac symptoms). After my discovery, I told my doctor, who nodded and suggested I go back to eating wheat so she could test me. I declined. I repeatedly have to educate my doctor about life, gluten-free. She relies on me to let her know what she should do. With help like this, you can see why I don't often go to the doctor, for anything. I've been doing this successfully since 2005--so I can't see the harm in it--but I wonder at the fate of patients who are not as highly motivated, or who may not have the skills I have in doing all the necessary research.

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    Yes, I researched and gave info to our general practitioner to get my husbands dermatitis herpetiformis and coeliac disease diagnosed. He had no idea and asks now what we want him to do. General practitioners need major education on this common issue. Coeliacs are not just hypochondriacs.

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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.

    ALL of my information since diagnosis found incidentally - took my medical to teaching hospital's Gertiatrics Department for unrelated concerns, did not mention last years sudden onset of horrendous bout of never diagnosed stomach ailment. My then MD did routine bloodwork, treated me for dehydration, PYLORI (HPYLORI bloodwork was negative), ordered abdominal scan, then basic endoscopy done by gastroenterologist who found inflammation of stomach lining. Did not biopsy or look at small intestine. Went another year with pain, etc. - stopped complaining as I felt I was being looked at as a hypochondriac. Due to history of thyroid and family history of Hashimoto's in my daughters, the geriatric MD ordered celiac test - POSITIVE. Repeat endoscopy - this time small intestine biopsied - viii flat, "scalloped", 100% am celiac. Sent out with diagnosis, referral to nutrionist which I cancelled as I already have gotten my information in detail on line from people who have gone through the process, books, cookbooks. I have a Nov. 30th appointment with an Endocronologist at the teaching hospital who treats my daughters (due to the autoimmune blood test numbers). She is also a patient advocate and will help me to get whatever followup I need in conjunciton with Geriatric practice. I was stunned by diagnosis. Angry for long time MD's failure to diagnose and bewildered by enormity of changing my life at age 66. After 3 weeks on the diet, I felt better - at six weeks over the anger, depression, fear. the Gastroenterologist that repeated the endoscopy but including small intestine said he will be interested to see how stomach inflammation also responds to celiac diet.

    In summation I agree that follow up or guidance through the process is lacking. Diagnosis is lacking. I could have been diagnosed a year ago! I feel with current medical care in place I will get the necessary followup - primary, endocronologist, gastroenterologist. BUT I will continue to read, look for websites, what are other celiacs finding out. What do I need to ask/advocate for. One last thing. A nine year old granddaughter was tested due to my diagnosis and carries the celiac disease gene! She has had stomach issues since birth.

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    Follow up care? No type of follow up care has ever been mentioned. I saw the gastroenterologist once when he did the endoscopy, but after a call to confirm the results he never recommended I return for anything. It seemed to be "goodbye and good luck". I've been pretty much on my own.

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    My GI doctor basically gave me the option to follow a strict Gluten free diet when he diagnosed me with celiac disease.

     

    He wasn't knowledgeable at all and he was actually surprised that I had celiac disease as my symptoms were not as typical as what he knew.

     

    I walked out of his office feeling sort of lost. I had the help of the internet and my dietitian and the Celiac Association. He did not mention anything about follow up.

     

    My dietitian was willing to check my vitamin levels regularly and suggested I get tested for osteoporosis. I'm glad she did because I found out I have osteopenia. Other then that, how do I even go about ensuring that I'm getting proper follow up?

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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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