Testing Negative But Positive Symptons

[Jeeplady]

My husband tested negative to Celiac Disease but appears to be gluten intolerance.Anything with wheat sets off the diarrhea and upset stomach. Is it possible to test negative but stil have this. He was diagnosed with Polycythemia this past February also and cannot get control of the stomach.

[tmk]

I tested positive through Enterolab, but had a negative biopsy. I decided to try the gluten-free diet anyways, and so far so good. It's only been just under a month for me, but I used to have diarrhea all the time(every day) and have not had it but once since I started (and I think that's b/c I accidentally had some gluten). Good luck to you!

[tBar-251]

Yes, it's definitely possible to have false negative blood results. It happened to me. I went with my "gut" anyway, two months after my negative result, but still with this nagging doubt.

I asked the NP about it and he believes the best indicator is how your body responds; NOT what the test results say, so he was all for a trial run, just based on all my weird symptoms.

It's been 30 days as of today, being gluten-free, and I'm so happy! My most obvious problem has been chronic sinusitis, we're talking 30 years of it---! And four years of unrecognized DH before that! Today, for the first time in memory, I have had no Sudafed, which I believe is cause for celebration since I've been taking 120mg every four hours for years and years, ever since I was in high school, just so I could breathe. And other less obvious gut issues are starting to feel better as well.

According to some studies, the blood tests aren't always as reliable as you might expect, particularly with people who are older (as opposed to children) and have been undiagnosed for a long time, though they (researchers) don't quite know why that is. There's always the "gold standard" biopsy, but for me, it's the results that are happening to me, right now that count for much more than gold.

[mftnchn]

Yes false negatives are frequent, from what I have learned on this forum. Also, you have to be eating the equivalent of 3-4 slices of bread a day for a number of months prior to the blood testing and biopsy, or the false negatives are very high. Dependence on these for diagnosis is the current medical standard, but the research is very clear that this misses many. You have to have extreme damage before these tests pick it up.

My impression is that your husband has not been eating enough gluten for the tests to show. Don't despair, many many of us have discovered we are celiac, or at the very least, gluten intolerant, despite test results. We ultimately are the ones who have to live in our own bodies--and the key is in our own hands. We can choose to not eat gluten!!!

Also, Enterolab is an option, though it does not diagnose celiac and isn't accepted in the general medical community (at least not yet, as research on it has yet to be published).

[melie]

I read somewhere that the only two Labs that should be used for Celiac blood testing are Prometheus and Mayo Clinic, the others just don't have enough expertise. I am twice negative on blood tests, postive on Enterolab, positive dietary response after 4 days, that's all I needed to know. I am hoping someday the medical community will give up its insistence on the biopsy as the gold standard, even if they pick ten sites to biopsy, by chance they could be ok and they could miss the damaged areas, and they would tell you you are fine. So according to the medical community, all of us with negative blood tests/biopsies but with positive dietary response don't have celiac..hmmm.

[Osprey101]

I'm a biochemist with a background in medicine (vaccines, actually- nothing to do with celiac), and after two months of exquisite discomfort, I finally saw a PA (I couldn't see a GI for over a month). After two rounds of tests, she narrowed it down to IBD or celiac. A light came on, as my aunt had told me she had celiac- as did her daughter, and one of her granddaughters. I immediately cut out wheat gluten, and had the blood test. (Supposedly the blood tests are good if you've been off WG for a week or two- the antigens are still there.)

The blood test was negative, and the next step was a biopsy. I figured- if the biopsy was positive, they're going to tell me to go off WG. If the biopsy was negative, they're STILL going to tell me to go off WG.

If it looks like a duck, quacks like a duck, and swims like a duck- get the WG out of the diet, and keep it out. And the first time a crouton makes it into a salad and into the mouth, you'll know about it in 24 hours.

You can test, test, re-test, and test once more just to be sure- but if the wheat gluten is the problem, the solution is straightforward: knock out the wheat gluten!