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Negative Test - Need Some Advice

beanbird

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beanbird Rookie
beanbird
Posted

Hi Everyone,

I'd be really grateful if anyone could give me some advice on what to do.

I went gluten-free for 2 months (I felt AMAZING!), then started a gluten challenge, I managed to get 3.5 weeks in before I decided I couldn't face anymore, and got tested. Although my digestive symptoms weren't quite as bad as they had been before I went gluten-free, I had a whole host of other symptoms I couldn't cope with, (continuous stabbing pains, itchy skin, achy joints, and feeling depressed).

I got my results back yesterday, negative, and I am gutted. Although I know it was unlikely I would get a positive, I had hoped some how it would be. I knew I had to keep on eating gluten until I got my results, I have a docs apt in 3 days now, and I know they would retest me when I have done the full 6 weeks (I'm not at 4.5 weeks eating gluten), but I'm not sure if it is worth it. I feel like just going gluten-free, after all getting a positive result sounds like hardwork!

So what would everyone do? Just go gluten-free now? or wait another 1.5 weeks, get another test done?

I was looking at the EnteroLab website, and wondering if I should find a UK equivalent (I am in England) and try that route of testing.

I am just so drained from all this gluten, I am so depressed and I have no fight left in me. :(

Thanks for listening.

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darlindeb25 Collaborator
darlindeb25
Posted

Gluten intolerance is much bigger than just celiac disease. Just because you didn't test positive for celiac, does not mean you are not gluten intolerant. Scientists have, so far, only been able to create testing for celiac, they do not have a test specific to gluten intolerance yet. Did you have gene testing done? There are many genes specific to gluten intolerance.

If you want to have Enterolab testing done, then go for it...many people feel better once they have this testing done, it gives them answers that simple celiac testing doesn't give. I did not have the money to be tested 9 years ago when I went gluten free. I did have gene testing done last year, and I have double DQ1 genes, which are gluten intolerant genes.

If gluten free makes you feel amazing, then truthfully, that should be your answer.

ang1e0251 Contributor
ang1e0251
Posted

I haven't been tested because I don't think I could take a challenge long enough for it. I was gluten-free about 6 months when I was financially able to be tested. I don't care about the test, I'm just glad I feel like a normal person again.

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