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  • Jefferson Adams
    Jefferson Adams

    Doctors Causing Significant Delays in Celiac Diagnosis for Women

    Reviewed and edited by a celiac disease expert.

    Caption: Doctors are causing delays in diagnosing women with celiac disease. Photo: CC--Erik Wilde

    Celiac.com 09/22/2016 - There really hasn't been much study done on diagnostic delays and factors associated with celiac disease, as well as on its potential impact on the course of disease.

    To get a better idea of the issue, a research team recently conducted a large systematic patient survey study among unselected celiac disease patients in Switzerland.

    The research team included SR Vavricka SR, N Vadasz, M Stotz, R Lehmann, D Studerus, T Greuter, P Frei, J Zeitz, M Scharl, B Misselwitz, D Pohl, M Fried, R Tutuian, A Fasano, AM Schoepfer, G Rogler, and L Biedermann. They are variously affiliated with the Division of Gastroenterology and Hepatology at Triemli Hospital Zurich in Zurich, Switzerland, IG Zöliakie, Basel, Switzerland, the Division of Gastroenterology and Hepatology at University Hospital Zurich, Zurich, Switzerland, the Division of Gastroenterology and Hepatology, Gastroenterology Bethanien, Zurich, Switzerland, the Division of Gastroenterology and Hepatology, Spital Tiefenau, Bern, Switzerland, the Pediatric Gastroenterology and Nutrition, MassGeneral Hospital for Children, Boston, USA,and with the Division of Gastroenterology and Hepatology, University Hospital Lausanne - CHUV, Lausanne, Switzerland.

    They broke their study down into patient-associated delays, and doctor-associated delays. They found an average total diagnostic delay of 87/24 months (IQR 5-96), with a range from 0 up to 780 months, which was fairly equally divided between doctor delay and patient delay. Both mean/median total (93.1/24 vs. 60.2/12, p<0.001) and doctors' (41.8/3 vs. 23.9/2, p<0.001) diagnostic delay were significantly higher when comparing female vs. male patients, and interestingly patients' delay was similar even after an irritable bowel syndrome diagnosis.

    Patients with a diagnostic delay shorter than 2 years showed a substantially lower dependence on steroids and/or immunosuppressants, better substitution for any nutritional deficiency, and were more likely to be symptom-free between 6 and 12 months after diagnosis.

    Regular, substantial delays in diagnosing celiac disease, are linked to worse clinical outcomes, and this data shows that such delays are significantly longer in female patients.

    This increased diagnostic delay in women is the fault of doctors, not patients, in part because the delay statistics cannot be explained by a diagnosis of IBS prior to celiac disease diagnosis.

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    This is SO true. I had to switch doctors because after 2 YEARS of telling him that my own mother has celiac, he still wouldn't listen. Went to a new doctor, ordered the test, came back positive...I could finally move on and feel good! I have to say, I hold my doctor accountable for the delay in my diagnosis of celiac disease.

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    My doctors told me it was depression, anxiety, and then perimenopause. Symptoms got really bad in my late teens, and I wasn't diagnosed until my 40's when I was bedridden and having trouble with blindness and neurological symptoms. Changing my diet eliminated all the "depression" and "anxiety."

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    I am a woman diagnosed with IBS and have been pretty sure I have celiac disease, so been on gluten-free diet for 5 years, with several incidents of glutening. I know all too well the resulting symptoms. I wanted to get biopsy diagnosis and the Dr. tried to convince me I did not have celiac disease, but agreed to do the gastroscopy/biopsy anyway. I had to consume gluten daily for a month before the test. Still waiting for the results, but now I have read several reports from celiac disease sufferers who had negative biopsy results previous to their eventual positive biopsy result. Now I am feeling even if I get a negative result, I won't believe it. What a waste of time. And now I am suffering with diarrhea, mouth sores, blurred vision, fatigue, disrupted sleep patterns, and an itchy rash on my arms, legs and back. I have lost trust in the medical profession.

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    How very true this has been for me - do I beat the record with 22 years? I made the diagnosis myself, thanks to the Microscopis Colitis Group and Dr. K. Fine. The diagnosis was confirmed only in 2013 by Prof. Michetti of Lausanne. I'd been seeing GPs and G-I specialists during these many years and no-one thought of looking, just IBS and microscopic colitis! My father and his brother always had gut problems and their cousin was only diagnosed at 68 - with acute osteoporosis, she lost 10 cm. height.

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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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