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Negative Blood Tests

Mari-O

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Mari-O Newbie
Mari-O
Posted

I'm so tired and worried(and tired of being worried and feeling sick) and all the doctors are telling me different things, ranging from "it might all be in your head" (like hell it is) to "just watch what you eat."

Please tell me it can still be celiac if the blood tests came back negative? Otherwise I've no idea what it could be. All the symptoms seem to match perfectly. How seriously should I take the test results?

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sa1937 Community Regular
sa1937
Posted

I'm so tired and worried(and tired of being worried and feeling sick) and all the doctors are telling me different things, ranging from "it might all be in your head" (like hell it is) to "just watch what you eat."

Please tell me it can still be celiac if the blood tests came back negative? Otherwise I've no idea what it could be. All the symptoms seem to match perfectly. How seriously should I take the test results?

What you're being told by your doctors is not all that unusual. I've read it many times here on the forum. It is entirely possible that you have celiac and negative blood tests are not all that uncommon. Even negative biopsies are not that uncommon so when all testing has been done, give a gluten-free diet a good try and you may have your answer in spite of what the results are.

If you are going to have an EGD/biopsy, make sure you continue eating gluten until all tests are done.

ETA: Oh, and welcome!!!

Skylark Collaborator
Skylark
Posted

Welcome. Don't you hate doctors like that?

It's still possible you're celiac, but you could also have what's called non-celiac gluten intolerance. Gluten intolerance is pretty common and can cause the same sorts of symptoms as celiac.

You can push for a biopsy but it might be easier to just go off gluten for a couple months and see if it helps.

raesue Rookie
raesue
Posted

I feel exactly the same way. I wish it were just doctors, though. my boyfriend of nine years is telling me its all in my head. I wanted the test so badly just so I could prove I had a justifiable concern. I read a study someone had mentioned on a forum by Dr Peter green at Columbia. he looked at blood test results for biopsy diagnosed patients and found that in practice, the tests are only 70% accurate. for those without complete villous atrophy, the positives were below 50%. he also found no positive ttgs in that group. apparently the rate of iga deficiency in celiacs is 20%. it really made me feel like the test is practically useless. I'm sorry to hear about your trouble, but its nice to find someone else in the same situation. I think everyone I know is getting tired of hearing about it.

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