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Increasing Numbers at a Specialist Celiac Disease Clinic: Contribution of Serological Testing in Primary Care

The following abstract was submitted to celiac.com directly by William Dickey, Ph.D., a leading celiac disease researcher and gastroenterologist who practices at Altnagelvin Hospital, Londonderry, Northern Ireland.

Dig Liver Dis. 2005 Sep 29;
Dickey W, McMillan SA.
Department of Gastroenterology, Altnagelvin Hospital, Londonderry BT47 6SB, Northern Ireland, UK.

Celiac.com 10/11/2005 - BACKGROUND.: Serological testing, using IgA class endomysial and tissue transglutaminase antibodies has high sensitivity and specificity for celiac disease and allows case finding by clinicians other than gastroenterologists. We reviewed new celiac patients seen over a 9-year period to determine how the availability of serology, particularly to primary care physicians, has changed rates and sources of diagnosis.

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METHODS.: Files of patients attending a specialist celiac clinic who were diagnosed from 1996 through 2004 were reviewed. Patients with villous atrophy consistent with gluten sensitive enteropathy (Marsh III) on duodenal biopsy were selected. Data analyzed included clinical characteristics, endomysial and tissue transglutaminase antibodies status and source of request for serology.

RESULTS.: Over the study period 347 new celiac patients, comprising adults and children aged 10 years and over, were identified, of whom 163 (47%) were identified by serological testing in primary care, 152 (44%) at the hospital gastroenterology department and 32 (9%) by other physicians in secondary care. Over three consecutive 3-year periods, the percentage of patients identified in primary care rose from 28% through 47% to 60%, with a rise in total numbers diagnosed from 93 through 118 to 136. There was no change in patient clinical characteristics over the study period. Though tissue transglutaminase antibodies were less sensitive than endomysial antibodies, combined testing obtained a sensitivity of over 90%. Patients identified in primary care were significantly younger and more likely to present with diarrhea as a primary symptom.

CONCLUSION.: Currently over half of our celiac patients are identified by serological testing in primary care, which has resulted in an overall rise in diagnosis rates. Primary care practitioners have an important role in the diagnosis of celiac disease, particularly of patients who present with non-gastrointestinal symptoms. The contribution of specialists other than gastroenterologists in secondary care is disappointing and may improve with directed education.

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It took me 20 years or more Barry so I wouldn't claim any great insight on this I had a 'eureka' moment, up until then I was walking around with multiple symptoms and not connecting any dots whatsoever. It is very, very difficult to diagnose and that's something that's reflected in so many of the experiences detailed here. A food diary may help in your case. It helped me to connect the gaps between eating and onset. It could help you to track any gluten sources should you go gluten free. It is possible for your reactions to change over time. As to whether its celiac, that's something you could explore with your doctor, stay on gluten if you choose to go that way. best of luck! Matt

I took Zoloft once. Loved it until it triggered microscopic colitis (colonoscopy diagnosed it). Lexapro did the same. However, I have a family member who is fiagnosed celiac and tolerates Celexa well.

Thanks for the update and welcome to the club you never wanted to join! ?

Jmg, I am glad you were able to come to the realisation that the culprit was in fact gluten. For me its not so simple. IBS runs in the family, as do several food intolerances. Its just in the last while that I can finally reach the conclusion that for me its gluten. The fact that it is a delayed effect-several hours after, made it harder. Friday I had some KFC, felt great. Saturday evening felt sleepy, Sunday felt awful and my belly was huge. I think I have gone from mildly sensitive to full blown celiac over the course of five years-if that possible. Thanks for all your help.

I thought I'd take a moment to provide an update, given how much lurking I've done on these forums the last year. It took a long time, but I've since had another gastroenterologist visit, many months of eating tons of bread, and an endoscopy where they took several biopsies. I have to say, the endoscopy was a super quick and efficient experience. During the procedure they let me know that it looked somewhat suspicious, causing them to take many biopsies, and then did comprehensive blood work. About a month later, I received a call telling me that the TTG came back positive a second time, and that the biopsies were a mix of negative (normal) results and some that were positive (showing blunting of the villi). As a result, I've been given a celiac diagnosis. It's been about a month now that I've been eating gluten free. Not sure if I'm really feeling all that different yet. It's a bit twisted to say, but in some way I was hoping for this diagnosis ? thinking how nice it would be to have an explanation, a plan of action, and feeling better. It's certainly no small change to be totally gluten free, but I'm hopeful.