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Not Sure


Yoekie

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Yoekie Apprentice

I've been glutenfree since beginning of december, since diagnosed with gluten/egg/lactose intolerance and leaky gut. The doctor who told me so, didn't think I could be celiac and didn't think it was useful to get it checked. But I do, so I went to a GI for a second opinion and he thought I might be celiac and he immediately had a bloodtest done on me. The one in december had shown 'specific IGg' but obviously he didn't think that was valuable or enough information. Now I wonder if this last blood test won't be influenced by the fact that I'm glutenfree for over a month now...

It's important because based on the results, he'll take the decision if a biopsy is needed to see if I'm celiac.

Also: I don't know yet if I'll have to have a biopsy, so what do I do? Stop eating glutenfree?? But I hear it's not good to switch too often... so maybe I shouldn't as long as I'm not sure I'll have a biopsy. How long before do you have to start eating gluten?

Yoekie


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RiceGuy Collaborator

I've read that the suggestion is to be consuming gluten for at least six weeks before a biopsy. Some say longer. If you decide to eat gluten again, and if it makes you feel awful, then you're next decision will be whether to listen to the doctors, or to your body.

However, Enterolab claims to be able to test up to a year after starting the gluten-free diet. There are other labs doing testing too, though I haven't seen their claims. Perhaps others will chime in with comments on them.

Whatever you do, I hope it works out for the best!

leadmeastray88 Contributor
However, Enterolab claims to be able to test up to a year after starting the gluten-free diet. There are other labs doing testing too, though I haven't seen their claims. Perhaps others will chime in with comments on them.

Please take note though that Enterolab cannot diagnose Celiac disease. It can only detect active dietary gluten sensitivity by stool sample.

Enterolab can find gene markers for Celiac, but this in itself is not a diagnosis.

What you should do is really up to you. Do you feel better gluten free? If you do, then you know gluten is a problem for you. Now you need to make a decision, is your reaction to gluten enough to make you stick to the diet? Or do you really need a diagnosis to be sure? Some people here are self-diagnosed and are comfortable with that decision.

If you DO want the biopsy, you need to be eating gluten. How much and for how long is up for debate, there is no 'handbook' for this. Considering you have only been gluten-free since December I'd say a few months should be enough.

Hope that helps :) Good luck!

Yoekie Apprentice

I do not feel better glutenfree. But I've had to make many dietary changes at once so it's difficult to know what glutenfree in itself is doing for me. Hence the confusion, I thought it would be good to have a biopsy done, but as I'm reading on the board, I came to understand a negative result is no total exclusion of celiac?

RiceGuy Collaborator
I do not feel better glutenfree. But I've had to make many dietary changes at once so it's difficult to know what glutenfree in itself is doing for me. Hence the confusion, I thought it would be good to have a biopsy done, but as I'm reading on the board, I came to understand a negative result is no total exclusion of celiac?

That is correct - a biopsy cannot rule out Celiac. Plus, it is possible to be gluten intolerant, and not Celiac, although the diet is the same either way.

I would add, that it can take a while to see improvement. It was six months before I noticed any real change on the gluten-free diet. Then it became quite obvious. I did not seek any "official" diagnosis.

Can you outline your symptoms?

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