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celiac disease/ncgs Or Nothing?

jramfischer

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jramfischer Rookie
jramfischer
Posted

All of my test results are in and here is how they stand:

tTG: positive

Prometheus Labs: HLADQ2 positive

Dietary Response: positive

Vitamin D deficiency: positive

Vitamin B12 deficiency (pernicious anemia): positive

Biopsy: negative

Capsule Endoscopy: negative

My GI says I don't have Celiacs and am a "mystery". When I told him that the diet has seemed to help, he didn't really seem too impressed or offerr any advice. I'm glad that the dietary response has been positive, but I'm starting to feel pressure (probably internal) when people ask me why I'm on the diet when I don't have a diagnosis. I thought I'd come to the experts on this board to give me some feedback. Thanks in advance!

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CarlaB Enthusiast
CarlaB
Posted

I don't know how GI's can know that the biopsy can prove celiac but can't rule it out, then say someone like you doesn't have it! The damage is spotty, and often the biopsies miss the damage, especially if they don't take enough of them. Or maybe your were just lucky and caught it before there was damage.

Be thankful you don't have an official diagnosis ... you won't have insurance problems that many have because of it! Stay gluten-free! The blood test and positive dietary response should be enough proof.

BTW, I would stop mentioning that you don't have a diagnosis. People will only know that if you tell them. I just say that I have to eat gluten-free and no one asks questions. They might ask what happens if I eat gluten, and I just tell them it makes me sick. If you really feel it's necessary, tell them you have a positive blood test, inconclusive biopsy (there is no such thing as a negative biopsy), positive gene test, and positive dietary response.

jayhawkmom Enthusiast
jayhawkmom
Posted

If not eating gluten makes you feel better... don't eat it.

I don't even tell people I'm gluten intolerant, or anything - anymore. I learned very quickly that people who don't understand WON'T understand and will just give you trouble. So, I just say, "I'm avoiding gluten" and leave it at that. If someone asks why... I just say, "personal choice." No one ever asks anything after that. =)

happygirl Collaborator
happygirl
Posted

You had a positive tTG test (which is a highly indicative marker for Celiac), a positive response to the diet, and a positive gene test.

Celiac is a very patchy disease. The damage could easily be missed. Your whole intestine isn't damaged...so for some people, its trying to find a needle in the haystack!

I am assuming you were eating normal amount of gluten when you had the biopsy, correct?

The biopsy can rule Celiac IN, but it cannot rule Celiac out. There are many people on this board who were dx'ed with bloodwork alone. You CAN tell people you tested positive for Celiac!!!!!!

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