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Can Dh Disappear For Years And Then Come Back?


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#1 lizk

 
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Posted 19 March 2012 - 10:58 AM

A really weird thing that I happened to remember recently is that several YEARS ago - I'm talking like 6 years ago - I had a patch of tiny bumps on my feet and it was ridiculously itchy. Nothing would help - I had no idea what it was and tried cortisone cream, calamine lotion, that spray stuff for athlete's foot (had never had that before so I didn't know what it looked like, didn't look like any description I saw but I thought what the heck, I'll try it), even rubbing alcohol on it to maybe dry it out. Nothing worked. They were tiny liquid-filled blisters that looked a lot like the photos I have now seen of DH. They were so itchy I couldn't sleep and could barely wear shoes. It lasted about 2 or 3 weeks, maybe longer (so long ago I can't remember!) and then it was gone and after that I would occasionally get a similar tiny bump or two on my hands or fingers or maybe just one here or there on my ankles or feet. The bumps usually reoccur in the same place. I don't remember noticing any digestive symptoms at the time or at least not to the degree that made me do anything about it.

Fast forward to last November and I was having bloating after almost every meal, occasional D and occasional itchy bumps, mostly on my ankles and legs. They itched worse at night and sometimes I would find random bruises from scratching so hard during the night. I didn't know enough to connect the skin issues to gluten, but I went gluten-free based on things I had read and my GI symptoms. I have been gluten-free for about 3 months. The gluten-free diet seems to be working, as most of my GI symptoms are gone. Like many new to the diet I am still learning. I think I may have DH but am not sure - I get tiny, itchy bumps that no amount of lotion, cream, etc. will help, and then after a few days or a week they go away. I am still having them even since going gluten-free but I realize I could be getting CC'd or they could be triggered by iodine or something else. I am not sure if I have DH, but I wonder if it is at all possible that the breakout I had many years ago was also DH and it went into "hiding" until last fall? This seems crazy to me, but got me thinking maybe I have been having some reactions to gluten for longer than I realize. Has anyone known DH to do this?
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#2 itchy

 
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Posted 19 March 2012 - 11:02 PM

As an auto immune disease DH will also relate to our own bodies and the environment we are in.

I think most people with DH will say that they had a variety of skin issues off and on before DH really took hold. Many of these disappeared or got better on a gluten free diet.

So were the other issues DH?

I've got to the point where I don't think the labels matter particularly. If it responds to a gluten free diet it's coeliac/DH, in my opinion.

If it doesn't respond then it's either not a coeliac related condition, or one isn't on a strict enough diet.

Your blisters sound simlar to blisters I used to get, but no longer get on a gluten free diet, so maybe they were coeliac related.
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#3 declan

 
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Posted 20 March 2012 - 02:57 AM

I will follow these replies with great interest. The same thing has happened to me. I have had DH since i was a child but it was only diagnosed on a stay in the US and treated with sulphapiridine and then dapsone. When i could not get dapsone (They stopped making it in Spain where i live now.) i stayed clear of rash for nearly three years. But recently it has returned in the hair in my head. This was the worse part of my body in my twenties. Now i buy dapsone on the internet and i only need a very small dose to keep it under control. I did not go to the doctor with this, i go to him with too many other complaints and he would only give me Colchicine which does not work for me.

Maybe there are some who are cured of DH, but of course they will not have any further interest in the web site and we won´t hear from them. But i would like very much like to hear their story, so if you are one of them please, please let us know.

declan
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#4 lovegrov

 
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Posted 20 March 2012 - 05:20 AM

Yes, DH can disappear (without going gluten-free) and then return. Happened to my father.

richard
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#5 lizk

 
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Posted 21 March 2012 - 03:09 AM

Yes, DH can disappear (without going gluten-free) and then return. Happened to my father.

richard



So interesting to know that this has happened to others. I am so curious if that's what I had back then...looking at the photos of DH makes me think it was.

Thanks for the replies!
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