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Thankks Bartfull, but I guess I'm looking at it from the other side. What if it's a chance I don't have DH? I think it's worth it, given that it's such a huge, life long change. Lichen Planus clears up by itself after running its course, so it was not necessarily eating gluten-free that cleared my rash. I will always be eating low gluten regardless because I have had issues since infancy. But there is a big difference in terms of vigilance and lifestyle changes between being intolerant and having coeliacs.
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?
Hi Krystal, just the description of what happens sounded exactly like how my DH started and felt. And I'm not sure about the combination of gluten+msg etc, but it is worth remembering that those of us with DH don't often get the severity of illness from the gut suddenly after ingesting gluten. Mine is definitely a gradual build up. Some people can tell straight away,even with DH. I cannot. So it could just be a function of the build up process...also if you are really serious about doing the gluten challenge, you'll need to have some good 'active lesions' and make sure your derm biopsies from beside the lesion, not the lesion itself (my derm did both!) And I totally hear you about having a confirmed diagnosis for your own mental strength. it was extremely validating for me. Lots of people do fine without it, though. Let us know how you get on.
heat, humidity and sweat...absolutely make the itch worse. I mean if you're sweating, the salt goes into any open lesions, you're automatically itching and stinging! Here in India, the heat and humidity are huge factors, over 100 for most of the year, and not much less than that at night. In fact, we're planning on going back home to Aus for the hot season, partly because that's how bad it makes my skin. But more than the sun, I would say it's humidity.
lol!! You sound like my mum, and of course you are right. Hubby and I have decided to slowly start transitioning out, but it is not easy. We run a business here so need to sort that out. We're home in June(to be able to skip the hot season here) and already have the specialist appointments lined up, then back after that for another 18 months
Squirming did you look this up for me? Or are you just a dermatology whizz?? Either way you are so lovely. Thank you. Hmmm, I never thought about the face not being mentioned. I did think that it's often said DH is not on the face (although I know that to be untrue.) I just thought it was later in the DH lifespan that it appears on the face. Which now that I think about it, is silly. That's just what happened to me but I guess everyone is different.
although if you had a sympathetic doctor, the genetics test and your own observations may be enough for a diagnosis?? Ahh, I don't know. It really is a dilemma. But if it was me, I probably would continue the gluten. It's such a lifestyle change and particularly hard with children. I personally would need the formal diagnosis behind me. BUT that is only me. I guess it depends somewhat on how you feel like you will go later on.
Grrrr. After having to figure out my son's skin and all that mental stress, my dear daughter (nearly 6) has popped up with her own variety of skin blisters. A few on her fingers, two on her face. One on the back of her leg near her foot, all within the last 3 days or so. I'm thinking maybe dyshidrosis (relying on google here...) Does anybody have any experience with this? Not looking like DH I don't think because each blister is beautifully isolated. No redness around it. But wondering if it could be related.Would appreciate any advice :-/
Hi friends, I have been sent an article on DH, written by a dermatologist who has coeliac disease himself and specialises in DH. Only problem is it is electronic (PDF) and I'm not sure how to make it available. If anyone wants it, perhaps email? Or can I attach things in private messages here? Anyway, let me know if you're interested in figuring it out. Otherwise I won't worry!