Inconclusive?????

[Nikster57]

Somebody help me out here. I was told after my blood test that I had Celiac also due because I am allergic to wheat. They did the biopsy and he told me it was inconclusive. What does that mean??????????? My gliadin test was 78 and I get terribly ill after eating bread and such. Should I go somewhere else? I guess I was anticipating a diagnosis not a inconclusive response.

Nikki

[skbird]

It could be that you just don't have enough damage yet for them to call it a postive. I would think that's what they mean when it's "inconclusive". If you have antibodies and positive dietary reaction, then that's enough of an answer there. Not everyone shows damage in their gut when they have sensitivity, and it's actually a good thing you don't have damage yet (if that's the case) because then you don't have to heal the damage.

It's funny, when I first went gluten free I didn't get tested, just went by diet. Later I tested through EnteroLabs and while I thought I understood the results, I didn't really. It took other people explaining it to me for it to sink in. Yet I could easily see anyone else's results and say oh yeah, I'll bet you have it, etc.

I don't know if that helps you or not but I think you're in the right place and going gluten free is the answer for you.

Take care
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Stephanie

[aklap]

Hi Nikki,

I agree with Steph, you may be in the gray area. Gluten affects you, but you don't have damage to show it (ie damaged villi). You might check out Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone from Dr. Fine at Enterolab. What he explains makes a lot of sense. It certainly gives credibility (and explains why we feel like we feel) to us that are in the gray zone. It sounds like I am in the same boat as you...no offical dx...but I know I feel better off of gluten.

Some docs will diagnose CD by "improvement on GF diet".

You could always do the enterolab test as a double check. Many people do that.

Should you go somewhere else? Sure, if you feel that there are other issues going on and feel more comfortable with an offical diagnosis. There's nothing wrong with that - get as many opinions as you need. Please know that you may run into the same type of results. Many docs are not up to speed on CD or gluten sensitivity as a whole. Some feel that CD is just the tip of the gluten sensitivity ice berg. Currently most doc will only dx CD (damaged villi). If you don't have damaged villi - they'll tell you to keep eating gluten. Could you eventually be dx'ed with CD then in the future? It's very possible. Some studies say YES. My feeling is...why wait for for all the damage to occur. Stop it now, before it happens.

While you're searching for answers, at some point in time you may just have to decide..."Enough is enough...if I know that I feel better off of gluten...so be it!"

Good luck!! Read and learn as much as you can!!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[WheatFreePDX]

Hi Guys: Isn't it true that "normal" people don't have anti-gliadins in their system? (Well, very minimal if any; my gastroenterologist said 10 EU's or less).

So that fact that you have such a high number definately means you are gluten sensitive at the VERY least; on it's way to full blown celiac disease. Getting off all gluten will do you a world of good.
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Diagnosed with celiac disease (bloodwork & biopsy). GF (again in my adult life) since March 2005.

[skbird]

Here's a bit from my email I got from Dr. Fine at EnteroLab about my results - I had a 9, <10 is considered normal but I had been gluten free for 6 months at that point and asked if I could have been in the normal range because of that reason.

[quote]Yes that might have made it 9 rather than 10 or 11 but really there is no difference, we just have to have a cut off. No antibodies really should be the result if no reaction. Stay gluten free.[/quote]

So while I don't have official Celiac or even high antibody numbers, I am still convinced by the fact I have antibodies at 6 months gluten free that I have a problem. That is backed up by my very positive response to diet. I don't need any more reinforcement than that.
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Stephanie

[Nikster57]

Thanks for all the advise. I will just stay gluten free. It hurts my stomache to even think about putting anything in my mouth that has gluten. I have seen so many people talk about that website that I will check it out today. I really appreciate this and the other forums. All of you are so helpful to me....Nikki