If Tests Are Unreliable, What Do You Do?

[rutland]

My boyfriends daughter is around 16yo, she was born prematurely and has since not grown past a certain height (she is fairly short in stature). I was recently reading in the book; Dangerous grains, (a great read by the way) that short stature, esp. when both parents are fairly tall can be a clue that celiac disease could be the underlying cause of stunted growth. They said that gluten could interfere with growth hormone production. I convinced my boyfriend to talk with his ex about testing. But Im worried because so many people Ive read about on this site, and also on my own have gotten false negatives. This is scary because so many people are out there with this disease and just never get diagnosed and go on with a host of health complications, and no idea why.

I guess what Im asking is how reliable are the tests for celiac/gluten intolerance? I myself never been tested because no doctor ever even considered celiac as a possibility for my health problems. I tried the diet on my own after much research, and continue to improve. But I feel like Im one of the lucky ones who finds out without the help of a doctor.

How accurate are the tests? And how many doctors even know which test to order? They were clueless in my case, even when I was losing weight and barely able to function. This ignorance scares me.

[tarnalberry]

I don't feel that we have good numbers of the specificity and a sensitivity of the blood tests (or biopsy, for that matter). The reason I say that is because while values have been calculated for perfect use in the lab, I've seen at least two studies that suggest that average use in clinical settings is much lower than that.

It's important to keep in mind that values tend to be calculated on a per-test basis, so when you combine the tests together, they are more helpful. But that doesn't rule out false-negatives.

How's that for an unhelpful answer?!

[GlutenWrangler]

Tests for celiac disease are accurate if there is considerable damage. When there is enough damage, antibodies are detectable in the blood, and villous atrophy is visible on a biopsy. The problem lies in the fact that the blood tests and biopsies are designed to diagnose celiac disease. They are not designed to diagnose non-celiac gluten intolerance. In non-celiac gluten intolerance, there is not enough damage to be detected by the tests. This is what causes people to have false negatives.

Stool testing is much more sensitive that blood tests or a biopsy, and easily detects the presence of non-celiac gluten intolerance. Enterolab offers a test which may be able to help you if you don't have any luck with traditional testing. I think the complete test is around $370, but you will also be able to find out if your boyfriend's daughter has the genes that predispose people to all forms of gluten intolerance. Just remember that you have a few different options and you should be able to get a definitive answer. Good luck.

-Brian

[RiceGuy]

I guess the one advantage in this case may be that the doctor would be pointed in the right direction. From the many posts about diagnosis on this board, it seems doctors usually don't have a clue unless the patient asks about Celiac. As has been said by many, the tests to order, and the interpretation of the results can often be where the doctor fails.

I've never sought an "official" diagnosis. The diet is proof positive for me, so I could care less what any test might say. Really, it doesn't hurt to try the diet and see what happens. I would think even just avoiding the obvious gluten should be enough of an indicator to say whether to pursue it further.