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lub2bmom

Could It Be Dermatitis Herpetiformis?

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I have been suffering from hives for 6 years now. They are small tiny hives that match almost identically to pictures of dermatitis herpetiformis. I have seen every doctor under the sun it seems (and i have the doctor bills to prove it unfortunately) to find someone who can help me get rid of the hives. Nothing helps... steroid creams, antihistamines, etc. The only way they go away is with prednizone (an boy is that horrible stuff to be taking..). I've seen an allergist, dermatologist, Thyroid Specialist, Rhumatologist,etc. I've been tested for lupus to cancer to arthritus, to allergies of everything under the sun. No one has ever brought up the idea that it may be dermatitis herpetiformis or celiac related. A friend of mine suggested that I look into it further. So I had my doctor do a blood test for celiac ... which came back negative. But the more I read... the more it sounds like dermatitis herpetiformis wouldn't be found in a blood test. I also have a very itchy scalp -- the hives show up on my arms, hands, feet, legs, and face. They are the itchiest things in the entire world. I just need some relief. I also notice they are worst after being out in the sun -- but all doctors who have treated me agree it's not a sun allergy. I started looking into celiac and dermatitis herpetiformis about a month ago... and decided to go gluten free. I noticed a fast improvement in the hives. Usually they hang around for 2-3 months at a time of endless itching, pain, burning which causes stress and little sleep. Upon going gluten free they have lessened and started to go away after about 4 days. I am hopeful! It's been a month now, and i am noticing that I still have hives... and this past week they got especially bad on my hands... it hurts to close them i've itched so much! I am trying to stay hopeful and tell myself it can take time to fully heal. Has anyone had experiences like this with dermatitis herpetiformis? How long did it take before symptoms finally went into remission? Any information is appreciated! I've been suffering 6 years too long!

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If it is DH ,along with being gluten free,restricting your iodine intake will be helpful.

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Ditto on the advice about iodine! For many of us, it takes BOTH gluten and iodine to cause the blisters. Iodine can be found in seafood, iodized salt (and salty snacks), asparagus, and some dairy. I've had good luck with organic dairy products. Remember, too, that you should be using a gluten-free shampoo (Desert Essence Organics and EO are good gluten-free brands), gluten-free lipsticks or chapsticks, and gluten-free lotions, etc. Be careful when you kiss people, because they may have eaten gluten or are wearing chapstick/lipstick. Make sure that you're not using a toaster that has ever been used for toasting wheat-containing bread, that you've bought all new condiments (peanut butter, mayo, butter, etc.), that you've thoroughly scrubbed all of your pots and pans, that you've cleaned your silverware drawer (crumbs hide there), and that you're washing your hands after touching pet food, since it usually contains gluten.

With regard to your test, blood tests can be notorious for being inaccurate, and celiacs who suffer from DH sometimes test negative for celiac--even though they do, in fact, have it.

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My DH was never diagnosed by a Dr.

It was VERY sensitive to the sun.

You could be on the right path.

It took mine an entire year being gluten free and I still have 4 small sores.

However, don't lose hope. If you eliminate gluten then the reactivity of these sores/blisters/hives/DH lesions will be waaay less than it was. The burning and itching will be way less intense in a matter of weeks. However the antibodies remain in the skin for a long long time and can easily be activated by iodine.

I also have salicylate sensitivity which is notorious for causing hives. Just something to consider in addition to gluten as if having DH is not enough. 1 in 100 are sensitive to salicylates and if 1 in 133 have DH then it makes sense there are some people with both. I had to eliminate gluten and severely restrict salicylates...initially I had been taking Ibuprofen to deal with the pain of DH. Then learned that DH is very reactive to NSAIDS so you will want to avoid NSAIDS if this is what you have.

I saw a bunch of Dermatologists, Internists, Rheumatologists, and no one thought I needed them. They thought I needed the Psychiatrist. Keep reading and eliminate gluten....you have nothing to lose but your sores.

Salty foods are terrible for DH.

If you are sensitive to salicylates you will find yourself reacting to preservatives, tartrazine, benzoates, food coloring, and maybe even fruits that are high in salicylates. Annatto and yellow and red dyes also cause reactions if you are salicylate sensitive.

Don't know if anything but gluten applies to you, but wanted to mention it because I'm not the only one with DH who reacts to salicylates also. See the articles.

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