Diagnostic Frustration

[frogrun]

I am so frustrated right now. I know what I feel like when I eat gluten and I know what I feel like when I don

[glutenmommy]

I really don't think you can get an accurate blood test result when you haven't been consuming gluten regularly. 2-3 days off of gluten might skew the results, and 2 months off of gluten would certainly skew the results! Even if you are regularly consuming gluten, the antibody tests can have as much as a 30% false negative result, according to my doctor. Also, consuming gluten for only 10 days before an endoscopy/biopsy is simply not long enough. Your intestines had probably healed considerably after just a few gluten-free days; my doctor says you need to be consuming it steadily for 6-8 weeks prior to bloodwork or biopsy.

If you know that gluten makes you feel bad, why not just stop eating it? Do you really need a diagnosis or a label? You can still have routine labs to check for things like vitamin levels and malabsorption issues, so why put yourself through the agony of chasing down a diagnosis? (Just my opinion.) Personally, I am having the antibody tests and a biopsy for DH in about 3 weeks. Regardless of the results, I will be giving up gluten permanently. Having pinpointed the culprit through an elimination diet, I am only doing this one set of tests at my doctor's recommendation and also to satisfy curiosity. Either way, it's gluten-free for me in 3 weeks! Counting down the days...

[elye]

Many, many people, myself included, believe that the only truly accurate diagnosis of a gluten problem is dietary response.

You have your diagnosis - - a screamingly bang-on diagnosis: when you eat gluten, you get weak, sick, rashy, and sore. How much more accurate a result do you need? I say listen to your body LONG before you listen to any "tests" that have a known predisposition toward false negatives.

Good luck!