Dermititis Herpetiformis

I am a 65 yo cau female suffering with dh x 3 years.  I have been absolutely strick on a gf diet for 1 1/2 years, treated with dapson.  First time I responded to dapson and dh abated, but only at 300 mg daily.  It returned, and have been taking 300 mg dapsone for at least 6 months, plus Clobex Spray and some other itch deterrents.  It is not responding to treatment.  Earlier this week my derm and I decided to dx the dapsone because neither think it is helping.  We will see if it gets worse (God forbid).  I have it on both shoulders and down both arms to elbows, and a very difficult patch lower on my left shoulder blade.  
Any suggestions or recommendations would be greatly appreciated.

Qikat

[meniere135]

I know my brother's dh rash took two years to go away on a strict gluten free diet, and I've read that it can take that long to dissipate.  

If you take medications or vitamins, etc., as you know, they must also be gluten free.  I remember when I went gluten free for Meniere's disease, the noise in my ears escalated, as if I did something right by going on the diet, but not completely right.  So I called my pharmacy and they checked on all my medications and one of them did contain gluten - this teeny tiny pill.  So I stopped that pill (which was safe to do - checked with doc) and 12 hours later, my ears completely calmed down to a low "shhhhhh" sound.  And they've been fine ever since.  I just thought I'd stress "when they say COMPLETELY gluten free, they mean it!

I hope this helps!

[Caryopteris]

You might try taking zinc 50 mg for a couple of weeks and see if that helps.  Good luck.  

[Caryopteris]

Also, make sure all your shampoos, conditioners, hair color, fragrances, makeup, toothpaste, etc are GF.  Yeah, docs may say it doesn't matter, but many of us find it does.  

[CalGal]

You may also want to check to see if you cross-react to casein, the major protein in dairy. Many celiacs do. In some, they also get similar 'blotching' with the reaction of casein as if found in the reaction to gluten.