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Doctors Causing Significant Delays in Celiac Diagnosis for Women


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.

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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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4 Responses:

 
Rose
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said this on
27 Sep 2016 6:05:32 AM PDT
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 CD.

 
Laura
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said this on
27 Sep 2016 5:18:02 PM PDT
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."

 
Cindy Maxwell
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said this on
28 Sep 2016 11:02:37 PM PDT
I am a woman diagnosed with IBS and have been pretty sure I have CD, so been on GF 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 CD, 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 CD 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.

 
Didi Magnin
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said this on
29 Sep 2016 6:06:12 AM PDT
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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Yes but...

I didn't read that far. Yikes... A hefty dose of perspective in that one. For anyone reading this is the post:

Hi! I'm new to the Celiac world. I have been gluten free for around seven months, but still seem to get glutened on a regular basis. I have been sick since January '16 and think that is when it triggered, but I didn't realize until October what it was. By that time I was pregnant with my little boy who is due in June. I also have an almost 4 year old daughter. I am really torn and wondering if I need to really be tested? I have very strong suspicions that I am a true celiac because my aunt has been diagnosed. Part of me says it doesn't matter, just live gluten free and assume you are, but the other part says I need to get tested so I know if my kids are at risk. So far my daughter is fine. She was grain free until after her first birthday, I plan on doing the same with my son. But I also don't want them to suffer the way I have. What would you do? The reason I don't want to get tested is I don't want to start eating it again and feel terrible while I have little kids, last year was so hard and I just want to get strong again. I also plan to bf for a few years and don't necessarily think it's a good idea to eat gluten while bf right? Thank you!

Welcome too! Sorry to hear you're suffering now. If you can nail the diet you should improve. You should also think about vitamin supplements. There's a good chance that you're suffering from one or more deficiencies as a result of the affects of celiac on your intestine's capacity to draw nutrients from your food. A good multi vitamin is a must, just make sure its gluten free and see if your doctor can refer you to a dietician as Lochella's has.

Oh I had heard his name and read some stuff about him but hadn't come across this video! Thanks!!