Hi friends, I have been in and out of this forum for a bit and now wanted to update you on the latest twist. After my skin biopsy, i have been gluten-free for nearly a year. After extremely extensive rash (scalp to soles) my skin is now nearly free of active lesions. Lots of the post-lesion marks though!
We live in India but currently back home in Aus for various reasons for a couple of months. One of the main reasons was that there is a doctor here who specialises in DH right near my hometown. Before my appointment with him, I decided to have some tests done for routine check up. I wanted to have the kids tested for the coeliac genes and while I was there, I had mine done as well, just for fun. And we all came back negative. Yep, that's right. I have a positive DH biopsy, yet negative for the genes.
So I take this to my DH expert (I really really like him and trust him a lot) who says I am a 'puzzle' but my skin actually looks a lot like lichen planus (anyone else with experience with this??). No mucosal changes though. So he says the only way I can be sure is a gluten challenge. Since I've never had the gut issues really (not that I can feel) I agreed. I have known since a baby I am gluten intolerant, so I'm expecting the usual headaches/fatigue but maybe worth it if I can rule out DH. I still have a lot to get my head around. I have spent a lot of time mentally adjusting to coeliac/DH and maybe all for nothing. Will keep you posted on the gluten challenge. He says it could take 4-6 weeks to get anything decent enough to biopsy, and if no rash comes I can assume it's lichen planus.
Any thoughts on this?