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Negative Celiac Panel But Gluten Free Helping

L-NO

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L-NO Newbie
L-NO
Posted

I got my test results:

Immunoglobulin a : 92 (normal range= 82 to 453)

Transglutaminase IgA: < 20 (normal range= <20 units)

I understand that there are alot of false negatives. I feel like the gluten free diet has been helping me over the past few days. When I am on it, I dont get diarrhea. Yesterday, when I accidentaly ate gluten (soy sauce)I could immediately tell. It felt like I had drank bleach, and had diarrhea. I am going to continue gluten free until my GI appointment on September 15th. Is it possible to have gluten intolerance and not celiac? If so, does the intolerance still cause intestinal villa damage or just stomach upset?

Thanks,

LNo

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Skylark Collaborator
Skylark
Posted

Your total IgA is really low. I'm wondering if you are somewhat IgA deficient. If you want to a pursue medical diagnosis, you might keep eating gluten and see about getting IgG tests. You also need to keep eating gluten until your GI appointment if you are interested in asking for a biopsy.

Yes, you can be gluten intolerant with normal bloodwork. Sometimes a biopsy is positive with negative bloodwork. It seems to take a lot of damage for the antiboties to "spill over" from gut to bloodstream. Other people have totally normal bloodwork and biopsy and still get rather sick from eating even small amounts of gluten.

It is not clear whether gluten damages gluten intolerant people. There is an idea of "latent celiac" where people who are gluten-sensitive can have a triggering event like an illness or a pregnancy can become celiac. Also, some people who are gluten intolerant have signs of malabsorption. My mom is gluten intolerant and her B12 is so low that she has to get shots.

chrisv Newbie
chrisv
Posted

I just had my endoscopy and biopsies taken this afternoon. My blood work was negative but I was also experiencing relief in symptoms when gluten-free. The doctor said she wasn't seeing the typical flattening of the villi, but that the biopsy was the only definitive way to determine whether I have celiac disease or not. Is it possible that the villi were able to regenerate between June and up to 2 weeks ago when I went back on gluten? The doctor said the biopsy would show either way, as I had not been gluten-free long enough for my system to recover. Crossing my fingers and glad to be going gluten-free again.

caligirl2001 Newbie
caligirl2001
Posted

My test was negative as well, but I react very strongly to gluten. Within 20 minutes, I am nauseated and in serious pain, and it lasts for several days. I was pretty sure it was food that was making me sick and I figured out with a food diary that the more gluten foods I ate, the worse I felt, so tested my theory with my own elimination diet like you did. I've now been gluten-free for almost 2 years. I'm glad you are getting thoroughly tested. I lost my health insurance a few days after my single blood test. I never had the chance to get any other tests done, so I never found out if my test was a false negative. It is absolutely possible for you to have a gluten intolerance without having Celiac. It is believed that with the intolerance, no damage is done, but the symptoms are often the same. God luck with your appointment!

scuzy Rookie
scuzy
Posted

If you go to my post, people have posted a lot of useful information that you might want to read:

  • 3 weeks later...
Skibunny Newbie
Skibunny
Posted

I just had my endoscopy and biopsies taken this afternoon. My blood work was negative but I was also experiencing relief in symptoms when gluten-free. The doctor said she wasn't seeing the typical flattening of the villi, but that the biopsy was the only definitive way to determine whether I have celiac disease or not. Is it possible that the villi were able to regenerate between June and up to 2 weeks ago when I went back on gluten? The doctor said the biopsy would show either way, as I had not been gluten-free long enough for my system to recover. Crossing my fingers and glad to be going gluten-free again.

Chrisv - did you get your biopsy results back? i have been gluten free as well since june and just scheduled a biopsy. The GI told me I only need one week of gluten in my diet to show a positive biopsy if I have celiac...interested to see what you found.

Skylark Collaborator
Skylark
Posted

Chrisv - did you get your biopsy results back? i have been gluten free as well since june and just scheduled a biopsy. The GI told me I only need one week of gluten in my diet to show a positive biopsy if I have celiac...interested to see what you found.

Your GI is not correct according to everything I've read online and in the literature. You need more like two months of full gluten before a biopsy.

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