I understand what you went through! It is similar now for celiacs. The symptoms are indicative of so many other maladies. It isn't a cut & dried situation. The tests are not even cut & dried. There are great #'s of false negatives. And once you discover what your problem is & go gluten free then the test requires you to gluten yourself. NOT BLOODY LIKELY!!!!!!! I'm walking the road & there's NO WAY I'm walking backwards for anyone.
You see, it is estimated that 25% of celiacs have or will get celiac rash. That would be me. Curse/blessing that mine manifested in such manner. And I use both those words emphatically! Curse: the rash will drive you straight up a wall. It itches & burns intensely & continually in a manner which defies any attempt at description. Nothing helps it. No cream, lotion or pill except a pill which has so many side effects that your blood has to be monitored every 2 weeks & it can easily damage your liver. No thanks. And each rash takes a full 3-4 weeks to resolve & there are no short cuts. Blessing: Celiacs who get the rash have less intestinal symptoms & damage. Instead, the immune system attacks the skin more than the intestines. The damage from celiac disease can cause cancer among other things.
Now we get into the really big problem ~~~ you have to go to a dermatologist to do a punch biopsy for a diagnosis of celiac rash. And derms don't want to do it. They don't really know about it. They don't know how to recognize it. The vast majority of derms have not done this procedure. It MUST be done precisely. If they don't do it right you get a false negative. Here's the real kicker: even when performed perfectly the test returns a 37% false negative.
The good news: There is a cure for celiac disease. The gut will repair itself. The skin will stop reacting. The cure: go gluten free. Period. Totally gluten free. No drug will cure this. Only getting yourself & keeping yourself gluten free will cure it. But that will cure it.
