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Blood Positive, Biopsy Negative-Now What

rose-thorn98

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rose-thorn98 Rookie
rose-thorn98
Posted

I had the following test positve:

TISSUE TRANSGLUTAMINASE IGA 1.38 (normal range below .90)

Just got biopsy back, was negative. My main symptom is neuropathy, some stomach issues. Dr. said try gluten-free anyway to see if it helps with my neuropathy. Just feel so confused. I really wanted a firm diagnosis! This was the only test I had positive when they were looking for the cause of my neuropathy. Feeling so defeated right now.

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Skylark Collaborator
Skylark
Posted

Don't be upset. Gluten neuropathy will not necessarily give a positive intestinal biopsy. Your immune system is attacking your nervous system, not your intestine. Based on the TTG-IgA, your doctor is giving really sensible advice. The firm diagnosis comes from trying the diet very strictly for a few months and seeing if the neuropathy improves. You want to be strict, as many people around here who have neuropathy are really sensitive to small amounts of gluten. Did your doctor also suggest taking some B vitamins or test for deficiencies? A lot of celiacs and gluten-intolerant folks are B12 deficient, which can cause nerve damage.

SGWhiskers Collaborator
SGWhiskers
Posted

As one of the neuro celiacs here, I'll second Skylark's response. I didn't believe how strict I needed to be, but once I got rid of all cross contamination, my neuro symptoms started to improve.

Emilushka Contributor
Emilushka
Posted

That's the same way I was. You can't expect every test to be positive - they're imperfect, and that's why there are so many tests that they run. If only one was enough, they'd run only one.

Welcome to the Celiac Club! You've got a firm diagnosis. Time to go gluten-free.

cassP Contributor
cassP
Posted

dont be discouraged- so many of us did not have a clear and obvious test result.. A lot of celiacs and people with gluten intolerance get neuropathy.. And i THINK its a side effect from a B12 deficiency which many gluten intolerants suffer from. You should get your B12 levels checked and ask for your results.. My sis in law was within range but ONLY by a FEW points- and she had the neuropathy.

I also think u should just go gluten free- clearly from the ttg- your body makes antibodies to gluten. iMHO, its only a matter of time till the gluten starts damaging your SI or any other organ for that matter.

mushroom Proficient
mushroom
Posted

Sometimes we have to live in the grey - there is no black or white. Your decision should be made on what makes you feel better, not on what any test shows.

Skylark Collaborator
Skylark
Posted

dont be discouraged- so many of us did not have a clear and obvious test result.. A lot of celiacs and people with gluten intolerance get neuropathy.. And i THINK its a side effect from a B12 deficiency which many gluten intolerants suffer from. You should get your B12 levels checked and ask for your results.. My sis in law was within range but ONLY by a FEW points- and she had the neuropathy.

I also think u should just go gluten free- clearly from the ttg- your body makes antibodies to gluten. iMHO, its only a matter of time till the gluten starts damaging your SI or any other organ for that matter.

It is not only B12 problems, although I agree that that B12 and other B vitamins can a big issue for celiacs with neurological problems. The celiac autoimmunity can attack the nervous system as well as the gut. (It can attack skin too, causing DH.) That's why the intestinal biopsy may not be positive. Some folks with only neuro symptoms don't have anti-TTG either. Instead researchers have found anti-gliadin and autoantibodies against nervous system proteins.

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