I Think I've Got Celiac But Test Results Say Otherwise.

[MarkO]

Hi all,

Great informative site.

Anyhow, I've been doing a lot of reading, but now I'm confused more than ever. I just got my results back from the doc and she says everything looks fine (TRANSGLUTAMINASE AB (IGA) < 20, IMMUNOGLOBULIN A = 475). Yet when I eat foods containing wheat I get the typical celiac reactions bloated, light cramps, mucousy runs and gas.

My sister and best friend have the disease, so I've been informed about it. I guess I wonder what do I do? Shoudl I jsut cut the gluten out and not worry about it, or do I force myself to eat wheat for a couple weeks, deal with it and retake the blood test? I'm 99% sure this is no coincidence. When I eat gluten, I get sick. Sometimes for up to 3 days.

[skymgirl]

Hi Mark -

You have nothing to lose by trying the gluten-free diet to see how it makes you feel. Sometimes blood work can be tricky and hide celiac disease, there can be false negatives. If you try the diet and your symptoms go away I think that will give you a good indication of whether avoiding gluten is the right thing to do. Of course, it would be up to you to decide if after doing the diet and seeing how you fare you and your doctor choose to do a challenge to try and obtain a more definitive diagnosis. (If that's important to you.) You can talk it over with your doctor and see what she thinks, but the nice thing about the diet is that you don't need a prescription for it! Good luck!

[MarkO]

Going <mostly> gluten free has been my approach for the past 6 months or so. Since then I've only occasionally had symptoms. Maybe 2 days a week. But I never really put one and one together and looked at ingredients and still had bread on occasion like with a burger. But I told the doc I <think> I might have it and she put the order for the test in and also to get tested when I was experiencing symptoms. So with my annual checkup due next month, I figured I'd try gluten after a week of going strictly gluten free. I had 3 pale ale beers and within an hour I was in the bathroom the rest of the night. Then I held off for a day then had a big pasta dinner and what do you know more of the same for the nest 2 1/2 days. Then I took the blood test midway through, then went gluten free and had been fine for the past 8 or so days. Results came in, doc says fine, I eat a bagel and more of the same. That was today.

Some folks keep telling me "get more tests"! but I figure why bother? I'm almost positive it's the gluten. Why not jsut cut it out and not worry if I'm clinically diagnosed? I must admit I'm somewhat concerned being classified as "celiac" may affect my insurance premiums some day. Hopefully not, but you never know.

[mushroom]

Going <mostly> gluten free has been my approach for the past 6 months or so.

If you were mostly gluten free at the time of your tests that would definitely affect your results. The folks here say you need to be eating 2 slices of bread or equivalent every day for 2-3 months for a valid test. If not eating gluten makes you feel better, and eating it makes you feel worse, I think you have your answer. There are those of us for whom an official celiac diagnosis is not important, it's the outcome that counts. It is up to each of us to decide for ourselves whether that diagnosis is important. If you want the blood test or biopsy diagnosis, I am afraid there is an awful lot of gluten eating in your future Another option is to try the stool testing through Enterolab, or have the genetic testing done to see if you carry celiac genes, although they are finding new genes all the time.

By the way, you are not the only one who does not necessarily want to have a celiac diagnosis in their records. It is all up to you really.

[MarkO]

There's no way I'm going to eat a couple slices of bread the next few months.

Never hear of the stool test, but that may be an option. I'll have to discuss that one with my doctor.

Other than the symptoms, I'm mostly western european and mostly Irish. Plus my sister is Celiac. So there's probably a decent chance I'd come back with the gene(s) for a good candidate.

Thanks for the help!

[lizard00]

Some folks keep telling me "get more tests"! but I figure why bother? I'm almost positive it's the gluten. Why not jsut cut it out and not worry if I'm clinically diagnosed? I must admit I'm somewhat concerned being classified as "celiac" may affect my insurance premiums some day. Hopefully not, but you never know.

I'm clinically diagnosed. I got new life insurance in Sept, and I got the standard rate. Some people here have had issues, others haven't. But my insurance carrier didn't recognize it as official, which worked to my advantage. My doctor believes I have it, and he treats me accordingly. That's really what matters anyway.

As for your testing, I can only add my voice of agreement with the others. Being pretty much gluten-free for 6 months will most definitely skew your results. My GI wanted me to do the equivalent of 2-4 slices of bread a day for a month, although I've read elsewhere that the better time frame is around 3 months. Either way, it wasn't worth it for me.