A positive biopsy is the cornerstone of a celiac disease diagnosis, so most GI doctors will not give you a diagnosis without it. It is considered standard of care.
On the other hand, if there is highly positive bloodwork for anti-endomysial or anti-tTG, some GI's will settle on that. It really depends on the doctor, AND as a patient... you have input, too. Endoscopy w/biopsy is considered a relatively safe procedure, but no procedure is without risk. If you have concerns about the procedure and whether it is necessary, talk to the doctor about it. Nobody can force a procedure on you that you don't agree to. Particularly, if one plans to go on a gluten free diet regardless of the result, you might ask what is to be gained. An endoscopy biopsy can look for other problems that might be co-existing, such as H. pylori, ulcers, etc.
The blood work when positive is fairly conclusive. There are a small number of false positive blood results, but the risk for false negative is much greater. When one is blood work positive/ biopsy negative... the chances are greater that the biopsy was false negative...particularly in someone who is symptomatic and responds to the diet. Generally, if the blood work is positive/ biopsy negative they will suggest a gluten free diet if the patient is symptomatic. They sometimes look at genetic testing in ambiguous cases to see if a patient carries one of the main celiac genes (HLA DQ2 or HLA DQ8). Some doctors will ask you to keep eating gluten for another year to see if you get sicker~ enough to show biopsy damage on the test next time around
. I don't think any of us here like that idea!
Quote:
Among 11 relatives, at the time of the first screening, 6 already had a positive serology and histology for CD, while 5 became positive only after a period of 2 to 5 y of negative testing.
CD can manifest itself after years of negative serological testing
Also: Follow-Up to the Catassi Study -- Scandinavia
Colin, et al, published a follow-up study to the Catassi (Coeliac Disease in the Year 2000:Exploring the Iceberg - University of Ancona, Italy) in the Scandinavian Journal of Gastroenterology 28(7):595-8, 1993, which demonstrated that approximately one third of the patients from the Catassi Study who had raised antibodies but no villous atrophy, did have villous atrophy when tested two years later. These results raise the number of diagnosed celiacs from the Catassi, et al study to over 1 in 200.
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Again, the bottom line for me is even if the blood tests and biopsy are both negative, a gluten free trial is worthwhile...because so many people who fall short on Celiac Disease diagnostics benefit from the diet. I do believe the blood testing is a good idea. I'm personally neutral on the biopsy, and feel it is a decision best made between patient and doctor depending upon individual circumstance. I believe gluten sensitivity outside of celiac disease matters. Not all doctors agree, but a growing number do
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Cara