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JustCan

Gluten Free But Not Celiac?

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I just got my biopsy results and there's no evidence of celiac disease. But, after having done a gluten challenge, I know that gluten is poison for me and will definitely maintain a gluten free diet.

That said, while I'm happy the biopsy was negative, I'd still like some kind of proof that I'm gluten intolerant other than the diet itself.

Am I crazy? I'd love to hear from others that live gluten-free but aren't celiacs (wisdom from celiacs is welcome too :D) .

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Guest j_mommy

It's totally possible that you have results from the diet!!!!

Were you gluten-free before your biopsy???? Did you do a gluten challenge prior to the biopsy if you were gluten-free????

Also remember that you can have false negatives with biopsies if they don't take enough samples!

All that said if the gluten-free diet is working for you, stay with it!!! Do whatever you need to to be healthy.

Have you had testing done for gluten intolerance???

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It's totally possible that you have results from the diet!!!!

Were you gluten-free before your biopsy???? Did you do a gluten challenge prior to the biopsy if you were gluten-free????

Also remember that you can have false negatives with biopsies if they don't take enough samples!

All that said if the gluten-free diet is working for you, stay with it!!! Do whatever you need to to be healthy.

Have you had testing done for gluten intolerance???

Thanks for your response! Yes, I was gluten-free before the biopsy and did a month long gluten challenge. I was really sick by the end of the month but there's no way to know if it was long enough. I also had bloodwork that was negative but I was gluten free at that time so it wasn't accurate. But no, I haven't been tested just for gluten intolerance. Is that the Enterolab test or is there another way?

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Guest j_mommy

You're right on the part about length of gluten challenge.....there are standards but like celiac...I think it's different for everyone!

I would say your dietary response is enough of proof that you need to be gluten-free.

As for testing...I believe you could get that through entrolab....others will be able to comment on that more! i more knowledgeable about celiac than gluten intolereance!

Good Luck :D

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Dietary trial is the ultimate diagnosis, nothing else is really needed.

A negative biopsy just means that they did not see any abnormality in the tissue samples that they took. You could still have villi damage, it can be patchy & they might not have biopsied that area.

Also, the biopsy is up to the doc's interpretation, did he read it right????

I would not be betting my health on the result of anything as unreliable as a biopsy.

You can test thru Enterolab.com & see if you have a problem with gluten, diary... & get the gene test. I think the gene test is a real clue.

enterolab can just tell you if you have a problem with gluten not whether you are gluten intolerance or celiac, or allergic, well some people use the genes for that gauge, which is really not right either.

Anyway, good for you for figuring out that you are healthier gluten free.!!!

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I had negative blood tests (had been gluten-free 2 weeks at the time), no biopsy and have been gluten-free for 16 months. Positive dietary response is all I need to confirm that for me, gluten is poison. My doc wrote "non-celiac gluten sensitive" in my chart. I don't feel the need to know anything beyond what I already know.

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My bloodwork came back negative and my biopsy came back with no signs of damage, but my doctor lists me as gluten intolerant based on my dietary response. So I would say that dietary response is proof enough. I too was gluten free before I went to get the blood test and biopsy, but I felt so good that there was not a chance I would eat gluten again just for test results. I went from 9 years of feeling so ill that my general doctor had me tested for lyme disease, lupus, r.a., and cancer of every type to not feeling ill every single day.

If you do want to get other testing done there is also a company called Kimball Genetics that does it(blood and cheek swab). I know they were recently at the Gluten Free Vendor Fair at SUNY Farmingdale. I've never been tested by them, but did contact them for information and they seem very professional. Maybe somebody else on here has used them.

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Guest Doll

If you feel better gluten free, (and all your tests checked out OK), stay gluten-free. My 2 cents.

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I had no signs of damage in the 2 (!) samples the GI doc took during my biopsy (and he was a jerk in person too). I went gluten-free anyhow, as my father and grandfather both have celiac and I was having classic symptoms. It's been 5 months and I feel like a new person--totally miraculous change (except the couple glutenings...). When I described my family history, symptom, and dietary response to my new house doctor (the old one got fired for reading my "negative" biopsy to me and suggesting I eat more WHEAT BRAN for my "IBS"), he wrote "celiac" in the chart and we moved on to the next topic. Even without that I would have stuck with it since I feel so good!

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I just attended a lecture by Dr. Fine of Enterolab. He discussed all this...so here's the bottom line, which MOST DOCTORS DO NOT UNDERSTAND!!!!

Think of gluten sensitivity as a SPECTRUM of reactions: at one end of the spectrum are those with zero observable symptoms. At the other end of the spectrum are very very sick individuals who OFTEN are diagnosed with celiac disease via biopsy. ONLY those with the celiac gene will end up with celiac disease. However, you do NOT have to have the celiac gene to be sensitive to gluten and to get very sick from it. The symptoms run the gamut of zero to horribly sick. There are some celiacs who have no symptoms. Some celiacs are terribly ill. Some people with gluten sensitivity (but no celiac gene) are just as sick as a sick celiac. And with or without the celiac gene, a gluten sensitive person can eat gluten and cause other auto-immune reactions.

There are a fair number of celiac specialists who are beginning to say it's probable that MOST, if not all Americans are at the very least gluten sensitive, and probably no one should eat gluten. Period.

Ultimately, we have to change the mindset of all this: Lacking a diagnosis of celiac disease (whichis after all, the worst end of the spectrum), you still must look at dietary response: If eating gluten makes you sick, it's probably doing damage to your body and you must stop eating it. If eliminating gluten makes you feel better, there's your answer. You don't need, I repeat, you DO NOT NEED a doctor to say you have celiac disease in order to follow the diet. Eventually, all this will be common medical knowledge, but right now it's not, unfortunately.

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