Many Dr.'s are not knowledgeable or experienced in gluten sensitivities or Dermatitis Herpetiformis, please ask upfront & continue searching for one who is if they are not.
In my case, I broke out in the "gluten rash." It was beyond extremely itchy, painful, and downright ugly. Even the soles of my feet itched unless I was standing! It is known as Dermatitis Herpetiformis. It looks much like a Rorschach test, a bilateral rash that looks the same on both sides of your body.
After about 6 weeks of seeing doctor after doctor and getting no relief (they erroneously prescribed me anti-histamines and antacids that did nothing because they had no experience or knowledge of gluten sensitivities or DH), I continued my own quest for information and found information from the Mayo Clinic and shortly after the University of Chicago Medicine's Celiac Disease Center. While I have been tested and found negative for Celiac, my Allergist told me that I have gluten sensitivity after a discussion of my symptoms and biopsy. My GP educated herself on this and also told me gluten can affect your thyroid negatively as well.
I suspected gluten issues after reading the information I found at the Mayo Clinic and UC websites and did my own elimination diet twice. I just knew I had to get this under control, I cannot and will not live in that level of pain, itch, and social embarrassment and was willing to do anything to stop it. After two separate challenges the rashes would go and reliably came back after I ate anything with gluten...even things that do not state they have gluten or in which gluten logically does not belong.
After a year and a half of suffering from the smallest of exposures, I decided to do what is being recommended for some people with food allergies...expose myself regularly to offender. It was hell...I did this for a little more than a year and kept rashing out but over the course of time the rashes and itching lessened. I tell you from the outset and through this self experiment, I looked and was miserable.
I did not go out in public much because of the rashes before and during my last ditch effort to re-acclimate my body to gluten. I still itch from gluten but thank GOD I no longer break into rashes and the itching does not immediately start in less than 2 hours after getting gluten in my system.
Since I cannot control everything & couldn't continue living as a hermit, I chose to expose myself and hope for the best. This began in 2013 and only now do I feel a reasonable level of control but why this ever happened, I may never know.
