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Diagnosis

ADSayegh

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ADSayegh Newbie
ADSayegh
Posted

Okay, so my daughter was diagnosed with celiac disease 4 years ago at the age of 4. Now, through routine testing I was discovered to have some positive, some negative, and some equivocal results. I do not have symptoms that overwhelm me and make me feel like gluten is my enemy, but I do have mouth ulcers, etc. The doctor has scheduled a biopsy, which we all know is the definitive test. However, I was wondering if I should wait a few months, or until my tests are more positive. I'm just concerned that if I recently developed celiac disease, then the biopsy could still read negative and I would just have to get it redone in a few years anyway.

What do you think?

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Deb O (UK) Apprentice
Deb O (UK)
Posted
Okay, so my daughter was diagnosed with celiac disease 4 years ago at the age of 4. Now, through routine testing I was discovered to have some positive, some negative, and some equivocal results. I do not have symptoms that overwhelm me and make me feel like gluten is my enemy, but I do have mouth ulcers, etc. The doctor has scheduled a biopsy, which we all know is the definitive test. However, I was wondering if I should wait a few months, or until my tests are more positive. I'm just concerned that if I recently developed celiac disease, then the biopsy could still read negative and I would just have to get it redone in a few years anyway.

What do you think?

I'm not at all sure what to advise you really - I'm very new to all of this. But reading others' comments on this board and from my own experience I would say why bother with a biopsy? There's plenty of evidence that you have celiac / gluten intolerance - why not just try the diet and see how you feel?

Good luck ;)

gfp Enthusiast
gfp
Posted
I'm not at all sure what to advise you really - I'm very new to all of this. But reading others' comments on this board and from my own experience I would say why bother with a biopsy? There's plenty of evidence that you have celiac / gluten intolerance - why not just try the diet and see how you feel?

Good luck ;)

I agree and you can take a blood test anyway,

As a definitive test that we certainly don't all know is the biopsy.

The biopsy shows damage to your villi from the sample points at a point in time. If you go gluten-free then the villi repair (to differing extents) but celiac disease is a lifelong condition. Aiming to have a +ve biopsy is a little like waiting till you have cirrohsis to stop drinking.

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