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Gluten Challenge. Ugh.

purplemaryjane

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purplemaryjane Newbie
purplemaryjane
Posted

So I was "mostly" off gluten for 3 years (not worry about crumbs in the peanut butter, eat some icing off the cake at work, still eat soy sauce etc), and feeling good. I had classified myself as NCGI because I had some negative TTGs before going off. I decided to do the genetic test in the hopes that I didn't have a celiac gene, and would then feel quite fine doing my "mostly" diet and not causing any long term health problems vs doing a poorly controlled celiac person's diet. Lo and behold ... DQ2 AND DQ8 possible. Oh well, so much for that strategy.

Now I'm at the 2 month mark of full gluten challenge - hasn't been fun. My ibs is worse, but the worst is my skin - I have overall itchyness, random mouth sores, swollen scaly patch on the edge of my lip that won't go away, fatigue, irritability, and somehow my husband is still hanging in there with me! My usually clear skin is covered in tiny little bumps (not exactly acne, although I have some of that on my face too) but if you look close it's millions of little skin coloured bumps, like keratosis pilaris but all over my neck, shoulders and back. Yuck!! I haven't changed anything else. I always feel like scratching (but don't). My joint stiffness is worse (I also have ankylosing spondylitis and am on a biologic and celebrex).

I was planning on doing 2-3 months, but I'm so done!!! Going for my labs this week and then probably I'll book an endoscopy asap.

In the meantime, I have been checking things off my gluten "bucket list" - this week I had mcnuggets and fries (yum! eat that about once every 3 years anyways), and a mini Cinnabon. In heaven. Food cravings, however, are out of control. I need my test results back before I gain too much weight!!

Anyways, I'm amazed I made it this far, can't wait for my skin to clear up. Anyone else get these funny bumps all over?? I've had it on the backs of my arms before, but this is ridiculous (and gross).

Hopefully I'll be posting some negative test results, and happily going back to my "celiac-lite" diet and feeling way better, and clearing up before the warmer weather and lighter clothing arrives!!

Thanks for reading :)

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Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Just wanted to throw something else in there, though you might not thank me :). I tested negative for celiac from blood and biopsy, and then in a gene test. I been gluten light for years. I did 3 weeks of a gluten challenge, which was enough to convince me to try strict gluten-free. I have found a massive difference between gluten-free and gluten light, I have my life back.

I have been diagnosed non celiac gluten intolerance, on the basis of my response on and off gluten, and medical history.

I am not saying it will be like that for everyone. Might be worth considering a short spell strictly gluten-free.

Good luck

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