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Is It Worth Being Tested Again? Do I Have To Go Off The gluten-free Diet?

foodmakesmesick

By foodmakesmesick
in Dermatitis Herpetiformis

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foodmakesmesick Rookie
foodmakesmesick
Posted

Hi all, thank you for reading this. I have many of the celiac symptoms, but a negative blood test and negative biopsy. One of the most intense symptoms was the rash (very itchy) I had right below my butt, on my elbows, legs, and chest. All areas looked like a faint red bumpy rash, except for near my butt where there were more distinct lesions. My doctor did a biopsy, and came back with the info that it looked like an allergic reaction.

I stopped eating gluten on Sunday, and now 5 days later my skin is SMOOTH. This is major because I haven't had smooth skin in that location for years (originally diagnosed with eczema 2 years ago that never went away). Side note: the rash does get much better while on prednisone even if eating gluten.

My questions are:

1. Would DH have shown up on a routine skin biopsy or should my Dr have ordered a specific test?

2. Would I have to start eating gluten again to be re-tested? (I don't want to as I'm alreay having some withdrawl symptoms and want to avoid the yo-yo on and off gluten again path) Right now, I have no outbreak.

3. Could it really just be eczema, etc and maybe just some food intolerance that I have eliminated with the gluten-free diet?

Again, thanks for your help!

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ShayFL Enthusiast
ShayFL
Posted

1. Would DH have shown up on a routine skin biopsy or should my Dr have ordered a specific test? For DH it is important that the biopsy be done correctly. The lesion or red area should NOT be biopsied. You have to take a sample from normal healthy looking skin right next to the lesion. If your Dr. took an actual sample of the lesion/rash area, this was incorrect.

2. Would I have to start eating gluten again to be re-tested? (I don't want to as I'm alreay having some withdrawl symptoms and want to avoid the yo-yo on and off gluten again path) Right now, I have no outbreak. Yes for best accuracy.

3. Could it really just be eczema, etc and maybe just some food intolerance that I have eliminated with the gluten-free diet? Yes. It could be eczema as a result of "gluten intolerance". Or it could have been DH due to Celiac.

Either way the cure is the same = gluten-free diet.

It is up to you if you want to push for more testing and eat gluten again. It sounds like you have your answer. Congratulations!!

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