So sorry for your frustrations!! One thing you need to know is the DH sufferers are the most sensitive to gluten. You need to be taking Dapsone to effectively deal with the rash. You'll need to have your blood checked every couple weeks to monitor but it's worth it. I only needed to take the med's for about 2 months and now only as needed if I accidently get glutened. I have been on the diet for 2 years now with DH and the rash comes and goes and really let's me know if I eat the wrong thing. Stay strong and be vigilent about reading labels. Get the "Is that Gluten Free?" app. It's also been a life saver. Let me know if you have any more DH questions. I completely understand!!!
I was on dapsone for 15 years for bechets syndrome but stopped taking it 2 years ago when i fell pregnant and aven't gone back on it - over the last year I have become symptamatic of dh but dr's don't listen. Im not symptamatic of bechets though! Will certainly look up the ap! Am due to see a dietician who wants me to go back to eating a normal diet because they're convinced it's IBS. Should I do that or remain on gluten-free? Sooooooo confused!