Celiac Tests Conflicting - Now Have To Go Back On Gluten - Need Advice

[thecatlady]

I had a couple antibody tests for Gluten come back high (the doctor said not extremely high, but high enough to be abnormal). My genetic test was 'low risk.'

I did a very through gluten-free diet for almost three months (including some new cookware) and have not noticed a significant improvement. I have another health condition, which has stayed about the same. The main thing I noticed was overall less joint pain/body aches.

I was told most people with Celiac have quite noticeable improvement and to slowly go back on Gluten (which is needed to do a biopsy). I'm trying to incorporate a little everyday, but am struggling with just how much for how long.

Will I have symptoms for going back on Gluten after not eating it for months? Does anyone who has done this before have advice?

I would like a biopsy, I think, for a more definitive answer. I have a hard time distinguishing my aches/joint pain (it could be from my other problem, it is hard to tell), and at least a biopsy would let me know if Gluten damages me. Obviously if my pain gets much worse on Gluten, I'll have to eliminate it again after the biopsy.

If I feel 'worse' back on Gluten - does that necessarily mean Celiac or could it be Gluten Sensitivity?

I spent all this time getting used to gluten-free and now going 'back to normal' is stressful. Thanks!

[mushroom]

I do wish doctors would do things the other way around; do the biopsy and if that is negative then try the gluten free diet. This other way is just too stressful for the patient (the doctor doesn't give a jot whether or not you suffer in the process).

Some people will react immediately to the reintroduction of gluten, others will react after about a week, and others, depending on what symptoms you were having before, may not notice much difference. It is a very individual thing. A worsening of your symptoms could mean either celiac or gluten sensitivity - oftentimes there is very little difference between the two except for the results of the tests.

Try increasing the amount of gluten each day. You will need to be up to the equivalent of 3-5 slices of bread per day.

I am sorry you are having to go through this. Good luck with the process and I hope you don't suffer too badly.

[julandjo]

I too had been 100% gluten-free for just over 3 months. I self-diagnosed based on my kids' intolerances. (They're 1 and 3 and both *very* intolerant of gluten, plus several other foods.) After learning how hereditary this can be I decided to try going gluten-free as well, and immediately felt so much better! No more joint pain, better sleep, better focus, etc. I was referred to a GI specialist because my gut issues, even after a few months of being gluten-free, had worsened. I had an endoscopy and colonoscopy last week, but of course since I'd been gluten-free so long the biopsy was negative. So he instructed me to begin eating gluten "with gusto", and I'm having the genetic and serology test done 2 weeks after starting. From what I've been reading, 2 weeks is not long enough for the serology portion, but this dr. assures me that with this particular test it should be long enough.

My gluten symptoms started up within 2 days. Overall body aches, mental fog, low energy, increased acid reflux, and tons and tons of bloating. I had lost 20 pounds when I went off gluten, and in the first 3 days back on it I had to get out my bigger pants! I'm bracing to be told that the tests show nothing, which will suck. I know I definitely have a problem with gluten; it would be nice to have a test that clearly shows it, you know? A lot of my family does not take me seriously about this. Either way, I'm going right back to 100% gluten-free the moment I get my blood drawn!