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Celiac?


JASON

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JASON Rookie

I have one sister who has celiac and I do. My other sister has been tested through lab work and came back normal. She has bloating, rash once in a while, constipation, headache, muscle ache, pains under the rib cage on right side, itchy shins, lumps on her head(like cysts); she also gets hot hands and feet sometimes. She has had her gall bladder removed. She has done the gluten challenge and felt a lot better. If the Drs. said she is fine; is she really fine even with our family history? Does anybody know what else this could be? How much could stress be involved in this?


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CarlaB Enthusiast

There was an article in USA Today that even mentioned the false negative rate of the blood test. She could still have it. If she feels better off gluten and has a family history of it, I'd just call myself a celiac and go gluten-free. It's actually better than being diagnosed and having trouble with insurance down the line.

Nantzie Collaborator

I agree. She should go gluten-free. I had negative blood and biopsy and my GI symptoms and neuro issues (I had a hard time walking), and other various symptoms went away after going gluten-free. If celiac runs in the family, she should give the diet a real try because sometimes odd things are related to gluten, and everyone has different symptoms. I had IBS and body pain symptoms which went away after being strictly gluten-free (including avoiding cross contamination), also headaches, insomnia, anxiety/depression/irritability and fatigue. I'm also very sensitive to cross contamination.

My feeling is that anyone who thinks they may have a gluten-related issue, celiac or not, should just try being gluten-free for a while. You never know how it effects you until you try.

Nancy

tarnalberry Community Regular

she has one negative, and one positive - the diet test IS A VALID TEST! she could ignore what her body is telling her and feel crappy, or she could avoid gluten and feel better. :P but yes, false negatives do happen, particularly 'false inconclusives' or tests that are read far too conservatively and don't actually say negative, but the doctors read them that way. has she gotten the actual results, or just the interpretation that was 'negative'?

Guest nini

I agree she needs to be gluten-free. She's had a positive test, positive dietary response. That is THE most valid diagnostic test in my humble opinion. There is too high a rate of false negative test results and with genetic predisposition (you and other sister) and positive dietary response, that is more than enough to call it celiac and go gluten-free and start getting better. The tests are not perfect. Despite what the Medical profession continues to claim.

KaitiUSA Enthusiast

Yea, she should be gluten free. The body is the best test for celiac and she sounds like a celiac.

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    • trents
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    • GlorietaKaro
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      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
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