Diagnosing Celiac W/stool & Saliva Testing

[Lisa]

"There are well accepted criteria for the detection and diagnosis of celiac disease. The tests used to fulfill these criteria have been subjected to scientific scrutiny and validation. To our knowledge tests of antibodies in stool or saliva have not been validated as a robust test for the diagnosis of celiac disease. Many insurance companies base their decision to cover the costs of testing on the scientific evidence that supports the testing of that individual (indication) and the actual test used (validation).

Our organization relies on the expertise of its physician members, as well as the recommendations of the:

- American College of Gastroenterology;

- North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN);

- NIH Consensus Panel on Celiac Disease; and

- Childrens Digestive Health and Nutrition Foundation

for the most current scientifically proven information on the diagnosis of celiac disease.

The ACDA promotes awareness and understanding of celiac disease among the general public and to also disseminate scientifically validated information to guide physicians in the detection and management of the disease. "

Andrea Levario

Executive Director

American Celiac Disease Alliance

www.americanceliac.org

[OBXMom]

Thank you for posting this information, it is good to learn. What I am wondering, though, is whether the same statement could be made for "gluten sensitivity" as for celiac disease in relation to the tests. In other words, maybe a positive stool test doesn't correlate to a strict celiac diagnosis, but indicates other problems with gluten. (Or maybe I'm just hoping, since I've already ordered the enterolab tests for myself and my daughter . . .)

-Jane

[tom]

Jane, from all I've heard & read, I think you can rest assured that enterolab does accurately show gluten intolerance.

[mftnchn]

Jane, my MD who I see for treatment of lyme disease said he and his partners have found the Enterolab testing very useful. In his practice he treats a lot of autistic kids. His practice does tend to be more non-traditional though.

What he told me was that he had sent a lot of patients in for biopsies, and NOT EVEN ONE had come back with a positive. However, Enterolab was picking up the sensitivity and the diet was helping many of his patients.

I think we have to recognize that while the policy about biopsy for diagnosis is useful--in the sense that a positive biopsy confirms celiac for sure, there is also evidence that many celiacs go undiagnosed with that criteria. Also I think that there is a variation of skill in both taking and reading the biopsies.

[Nancym]

Remember there's a difference between unproven and untrue. Unproven just means it isn't widely accepted by current standards, untrue means it doesn't work or the results are false. In the case of Enterolab, I'd say their testing is unproven but likely to be true in testing gluten sensitivity. At least for me and many, many others.

I wish Dr. Fine would publish but... he's been saying for years now it'll be next year. So I wouldn't put too much faith that he is going to publish.

[Lisa]

"There are well accepted criteria for the detection and diagnosis of CELIAC DISEASE."

Keep in mind, that the article only refers to diagnosing Celiac Disease, not a gluten intolerance/allergy/sensitivity. To my knowledge, Enterolabs has never claimed to diagnose.

[mmaccartney]

The current standards FAILED to dx Celiac in me. All my biopsies were neg. My blood tests showed pos IGG , neg IGA and neg on the rest.

Capsule Endoscopy showed patterns pointing towards celiac

Enterolab showed positive for Celiac, both from stool and genetic testing.

Stopping gluten intake saved my life.

It takes years and years to change accepted medical practice, and in most cases, rightfully so. In the case of Celiac, the "Gold standard" is, IMHO, old, and outdated. The disease was just discovered several decades ago, and medical science has chagned quite a bit, as well as the understanding of the disease.