Most people with celiac know that the tests for these conditions are lacking greatly in terms of accuracy. False negatives on the blood panel alone have been quoted in the 20% range. Obviously, if someone tests negatively on the blood test, their doctor isn't likely to schedule a endoscopy looking for further indications of celiac disease.
Even when people have the endoscopy is performed, many doctors take only one or two biopsy samples. Dr. Cynthia Rudert of Atlanta explains that the proper way to do that test, is to take at least six samples since the small intestine is so ling. Taking only two samples might not catch the damaged villi. This might result in a false negative or inconclusive results.
Many in the medical community who are "in the know" about celiac, prefer to use the California based lab Prometheus Labs for their patients celiac blood tests, among other things. To quote one doctor "generic lab techs don't know how to read a celiac panel. That is why so many people with celiac are testing negative for it". If you have a celiac blood panel run and can get your doctor to use Prometheus to interpret it, you should do so.
Finally there is a reliable test for celiac gene, which is the least invasive test on the market. Prometheus just introduced the saliva-based celiac gene test which is available without a doctors' visit at MyCeliacID. Though it's only testing for celiac genes, not the actual disease, it might be a way to convince your doctor that you might in fact have celiac - assuming you have the gene. With so many doctors telling patients they don't need to be tested for celiac, this might be a great tool to get your doctor to see things your way. Until U.S. doctors catch up with the countries we greatly lag behind on this issue, patients have to be their own health advocates. In fact, they should do that for all their health issues.
Prometheus is one of the premier companies creating innovative diagnostic medical tests. Wouldn't it be nice if they one day they were able to create a saliva-based test for the actual disease of celiac? That day might not ever come but if it does, Prometheus is likely to be responsible for it!
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