looking to interview DH sufferers for national magazine

[ljgs]

Hi, all. I'm a longtime member of this group as the mother of a celiac patient. I'm also a professional writer doing a story for a national magazine about DH. I'm speaking to physicians, but I'd also love to talk to a couple of DH sufferers about their experiences. Unfortunately, there's not a lot of info out there about DH. So I'd like to know: What has been your DH journey? Do you have other celiac symptoms? What makes your DH flare up/calm down? Anything else I should know? Please PM me if interested. I do have the admin's permission to post here. Thank you!

[joycesmith]

I have systemic lupus (SLE), sjorgens, gluten intolerant to wheat, hypothyroidism and DH. I'm on 100mg of dapsone. With the DH, it's my left leg with nodules that have popped up on the back of my thigh. The rash is on both my feet and ankles. Nothing on my face, right hand or arm or leg. It itches, but, even with moisturizing twice a day - my skin is excessively dry - my skin peels. I've tried so many creams but nothing seems to help.

[girlinthesun]

At the age of 10, a bright red itchy, bumpy rash appeared on my back and doctors were stumped.  It grew slightly and turned dark brown over the years.  A head of dermatology for a local university did a biopsy at 27 and declared it "Epidermal Nevus" which essentially means birth mark, which also means I was born at the age of 10.  My symptoms of minor gastrointestinal issues and localized itchy rash on my back, expanded rapidly to many, many symptoms at 40.  Three weeks ago I saw an Eastern/Western medicine doctor who proclaimed "gluten" without a test of any kind.  Now, three weeks later, my 32 year old back rash has faded in color by 60%, my lupus style face rash has reduced in size by 75%.  In the three weeks that I have been gluten free, my hands haven't been numb a single day and I haven't overslept once.  My brain fog is slowly lifting but my acid reflux does remain.  The transformation is game changing.  I don't have an official diagnosis, only circumstantial evidence of an intolerance.  However, if a dish has gluten in it, and I consume it, my face reacts nearly immediately.