NCGS Skin Rash

Hey all. So I was diagnosed with NCGS a little over two years ago. The entire process was really drawn out. I had a terribly itchy rash that caused me to go to urgent care one day. I was basically told that it isn’t easy to figure out what’s causing a rash, so I was prescribed a topical steroid cream and sent on my way. The rash kept coming back, and my doctor’s were completely confused by it.

It took many visits and even a dermatologist referral before my main doctor finally realized I could have an issue with gluten.

So here we are with NCGS.

My skin is the biggest problem. I strictly follow a gluten free diet, though not everything is certified GF. Even though I very rarely get glutened, I still get little bumps and itchy spots. If I itch, it spreads, etc. If my legs are bare and it is kind of cool (not even cold, just not hot) I get itchy. If something rubs against my skin or tickles me, I can get itchy. My skin is so sensitive at this point and I don’t really know where to go from here. I do not feel like my doctor is familiar in the slightest with this issue so I don’t feel like I can ask her for help because it took 9 months to even get a diagnosis.

I have also read (https://gluten.org/resources/getting-started/dermatitus-herpetiformis/) that this could actually be Celiac (a form of it), and there’s a false negative half of the time.

Does anyone have any experience with this? Thank you for reading my little novel.

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