Why Do We Get Dh?

[GFreeMO]

Every time I get glutened, after the intestinal symptoms clear up about a week later I get the dreaded and itchy DH rash on my left knee cap. Same place, every time. It starts out as one or 2 tiny dots and after I itch it, usually in my sleep, it ends up being a huge itchy and hot feeling thick rash that covers my whole knee cap. It's very annoying. Why do some celiacs get this and some don't and why do we get this reaction?

I put Benadryl cream on it and it clears up in a few days but is there anything we can do to help it or to even stop it from happening?

Thanks!

[ravenwoodglass]

The only thing we can do to prevent it is not get glutened. I have found that the longer I am gluten free the milder my DH outbreaks are. I used to be covered in it and the tiniest amount of gluten would cause an outbreak. By the time I had been gluten free for a couple years I would just get one or two itchy little sores when I get glutened. With DH for some reason the antibodies get into the skin and form the antibody autoimmune reaction which causes the blisters and the itching. Do know that it will get better in time. Just do your best to be as gluten free as you can and avoid iodine for now as that will keep those antibodies active for some reason. After your outbreaks have calmed down do add iodine back in though since we really need a bit of it in our diet.

[GFreeMO]

Thanks for the info. I find this rash highly annoying. The benadryl cream really stops the itching but it takes a while to clear up. When I do get glutened, I usually have no idea what it was which is also annoying..but what isn't annoying about celaic?!

I use to get it on both knees now I only get it on one so maybe it is getting better...hopefully!

Does everyone pretty much get it in the same place every time?

[ravenwoodglass]

Thanks for the info. I find this rash highly annoying. The benadryl cream really stops the itching but it takes a while to clear up. When I do get glutened, I usually have no idea what it was which is also annoying..but what isn't annoying about celaic?!

I use to get it on both knees now I only get it on one so maybe it is getting better...hopefully!

Does everyone pretty much get it in the same place every time?

I don't know if everyone does but I seemed to.

[itchy]

'Does everyone pretty much get it in the same place every time?'

I had a reaction a few days ago, and it hit only the oldest spots, the spots that it first appeared in, on my arms, many months ago.

The reaction wasn't severe and it has almost stopped, consistent with what ravenwoodglass said. So yes it appears to hit the same places. The last lesions to form were the first to heal, and haven't reacted to this latest challenge. Things appear to be getting better.

Interesting that your rash shows up several days later. I may be confused, but I relate my DH symptoms to being glutened only a few HOURS earlier. As you say, it is often very difficult to determine where the challenge came from, when you are being very careful. Because I am in control of most food I eat, I generally associate glutening with ambiguous commercial food one sometimes eats by necessity (ie food that shouldn't have gluten but does) or social situations where one is assured that there is no gluten, by people who are well meaning but really don't understand.

[GFreeMO]

I guess we all react differently. But yeah, for me, the Dh shows up 3-4 days after I have the severe intestinal problems. It's almost like my body is like whew, thats over now lets get her knee and then it will be ok again. It's the final reaction in a string of them for me.

[ravenwoodglass]

When I was first diagnosed an outbreak was one of the first signs I had been glutened usually happening within a couple of hours. Now it is one of the last. I think because the antibodies have left my skin for the most part and it takes a couple days for them to build back up and cause a reaction.

[itchy]

It's interesting to hear both your experiences because I may actually be relating my DH outbreaks to the wrong events.

It is very difficult to tell sometimes.