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New To Dh

tetleyt

By tetleyt
in Dermatitis Herpetiformis

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tetleyt Newbie
tetleyt
Posted

I am new to all of this, even to talking on forums. I was diagnosed with celiac in 2005, probably had it for the twenty years previous. My symptoms weren't the normal gastro ones, but the main ones were that I had extremely severe leg cramps, was iron deficient anemic, and was a very gassy person. I've been gluten free since my diagnosis and all my symptoms disappeared. Even with an accidental glutening I would have no reaction. And then comes July 16th and I break out in these little welts that I thought resembled bug bites on the top of both legs, behind each knee, and a few on my stomach and lower back. The welts turned into blisters and started to itch like crazy. I spent a good deal of time searching online as to what it could possible be but it wasn't til last Friday that I suspected DH. I saw a doctor on Monday (not a dermatologist, that appt. will take 3 weeks) and when I suggested DH, he did some checking online and said it looks like it to him. My question is, can I be gluten-free for seven years and now break out with this rash? After reading the threads on this forum and all about the iodine thing I am sort of in disbelief. My husband wants to believe it's poison ivy even though he knows it isn't.

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squirmingitch Veteran
squirmingitch
Posted

Well, tetlyt, either you really did get into some poison ivy, oak or whatnot OR you got glutened & didn't know it. Actually, since I've been here on this board there have been a surprising number of celiac "veterans" such as yourself who have posted here that they suddenly have dh after it having never presented prior. I remember one of the first ones I saw on here was someone who has been on this board & gluten-free since 2008.

It's interesting that you mention you never had all the normal gastro symptoms of celiac. Did you know that celiacs with dh tend by & large NOT to have the normal gastro symptoms? We tend to have far less gastro stuff & less severe. SO, this fits exactly with the dh celiac.

So what does this mean to you? I'm going to say you certainly got glutened and/or you have been getting cross contaminated or glutened far more than you suspected all along. DH is extremely sensitive to the slightest gluten. You are going to have to be ultra careful! DH is NOT fun!!!!!!!!!!!!! As you are finding out.sad.gif

Read some of the threads in this dh forum & you will find lists of things to do to help with the itch as well as limiting your iodine intake & why.

I'm so sorry this happened to you but from here on out when you get cc'd you will likely break out in dh. So now you will know when you get cc'd or glutened. Fun, fun. NOT! ph34r.gif

tetleyt Newbie
tetleyt
Posted
  • Author

Obviously you are right! I have never (in the past) been too concerned about cc when eating out. I have never been concerned with whether or not products were made in dedicated facilities or not. My son has always been my barometer as to whether I had been glutened because he always reacts. There have been occasional times, not too many. I have been thinking that being gluten free isn't so bad, except for social situations, I even eat healthier. I guess everything changes now. I have a vacation scheduled in Mexico in less than two weeks and I'm nervous to go. I will try to do the low/no iodine thing until we leave at least. My last possible cc was Sunday evening, do you think I have finished breaking out from that or can it still come out?

squirmingitch Veteran
squirmingitch
Posted

Oh gosh tetley, it's hard to say if you're done or not. Everyone is an individual --- even with dh. But I will say that the low iodine (thyca.org) works pretty quick for all of us. Again, individuals, but for me low iodine (li) I start to not itch in about 3-4 days & by the time 7 days has come I'm healing up. My husband seems to take about 10 days for things to begin to get better but then it goes real fast for him.

I will warn you though that when you go back on the iodine you may break out again. You see, the IgA is in your skin now & iodine can really fire it up. One of our members says gluten lights the fire but iodine keeps it burning & that is such a perfect analogy.

It might be time for you to have a "refresher course" on cross contamination especially if you have a shared household. This link should help:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Remember it's not just the dh which is a MAJOR PITA, but the unseen, unknown damage to your gut & risk of other AI diseases that makes it sooo important not to get cc'd. I know you know this & I'm not honking on you --- just trying to gently remind you.

  • 2 weeks later...
itchy Rookie
itchy
Posted

All good advice from Squirmingitch, except re iodine, which we disagree about. I have never been able to detect an effect from iodine, and I choose not to mess with iodine in my diet due to frequency of thyroid diseases in my family. You will get better if you concentrate on eliminating gluten. I think people should experiment with iodine limits, don't assume automatically that you need to eliminate it. There are many factors to take into account.

Tetleyt, your experience parallels mine. For years I controlled GI symptoms by limiting gluten, but not strictly. I had no noticeable DH symptoms. Then one day I had a big gluten meal when I felt it was socially necessary. A few days later I had the start of my major DH outbreak.

Only when I got rid of all the minor gluten sources, and the accidental glutenings, did things start to improve.

But realistically, I was probably damaging my GI system even previously, because I feel much better now than I did then.

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