Can Dh Be Mistaken For Hives?

[jessicalw28]

I have been dealing with terrible hives along with other problems that have lead me to believe I may have celiac disease. I have seen a dermatologist, immunologist, GP and GI doctor. All say it is hives and have not done any biopsies of my skin. I have had an endoscopy and biopsy done and am currently waiting for the results.

I have been having them for about 6 months. They can appear almost anywhere and some days are much worse that others. They are usually bilateral (both legs, both arms, etc). They itch very badly and I have not been able to find an antihistamine that keeps them down. This includes prescriptions. They do not blister or ooze, but they do burn sometimes when I scratch them.

Does this sound like DH?

[JoeB]

I had DH for a couple of years before I was disagnosed with celiac and I've also had hives from food allergies. The main difference I found is that Benedryl brought the hives under control within about 20 minutes of taking the pills. Also, I found that when I got hives, I could feel them start in one part of my body and then travel to other parts of my body over a short period of time.

The DH symptoms improved when I took Benedryl, but they never completely went away. DH symptoms were always there, sometimes more severe than others. The DH rashes I had were generally symetrical - both shoulders, both elbows, both knees, etc. My dermatologist thought I had psoriasis and never did biopsies either. My GI doctor finally confirmed celiac after doing an endoscopy. The DH symptoms finally disappeared a couple of months after going gluten-free.

I hope you get a definitive answer when you get your endoscopy results.

[eatmeat4good]

I have been dealing with terrible hives along with other problems that have lead me to believe I may have celiac disease. I have seen a dermatologist, immunologist, GP and GI doctor. All say it is hives and have not done any biopsies of my skin. I have had an endoscopy and biopsy done and am currently waiting for the results.

I have been having them for about 6 months. They can appear almost anywhere and some days are much worse that others. They are usually bilateral (both legs, both arms, etc). They itch very badly and I have not been able to find an antihistamine that keeps them down. This includes prescriptions. They do not blister or ooze, but they do burn sometimes when I scratch them.

Does this sound like DH?

I had hive-like skin reactions for years before the full dermatitis herpetiformis appeared. The hives would last for days, then for weeks, then for months, then they never went away. I had them in various places. On the face, forehead, chin, cheeks, legs, elbows. But never all at the same time. The skin reactions became more severe...though the area was not larger. More pain, swelling, brief blistering, more pain, like burns. As I look back now, I believe dermatitis herpetiformis starts as hives and progresses to full blown DH. I wish I had known that. Also, it doesn't always look like the pictures on the internet. It can take various forms, from one small painfull lesion to whole areas that are inflamed. The only remedy for me was going gluten free. That came after years of seeing dermatologists who said it was "adult acne" and dozens of antibiotics, and skin cultures, and steroids etc. 7 years later I am left with awful scars, and the sores I had in the beginning were very superficial but burned when scratched. Try going gluten free because it may be your anser. But please remember the antibodies remain in the skin for a long time...so it can take 6 months or more to heal even if you remove gluten from your diet. You are right to be concerned at this point. If it is gluten you won't have to buy all the prescriptions or see all the Dr.'s who really aren't familiar with it. If you can get a biopsy done that would be definitive...if they biopsy next to the lesion...even if it just looks like hives. Advocate for yourself, but if they won't do it, you can try gluten free anyway and see if it helps. Good luck

[jessicalw28]

Thanks for the help guys. I will wait for the endoscopy biopsy results before I push for a skin biopsy. Hopefully will get them in a couple of days. These hives have been driving me crazy for 6 months! And taking several prescription antihistamines is pretty expensive too.

I was concerned becuase most descriptions of DH are that it is painful. My hives have never been painful, but they are intensely itchy. If I scratch too much, they can feel kind of like a mild sunburn, but they have never had blisters. I didn't know that DH started out milder, then became more intense.

I tried the iodine patch test at home. Got some 2% iodine at the drug store and soaked a piece of gauze in it. I taped it over with a bandage and left it on about an hour before it started burning like heck. I haven't seen any blisters or sores around it, but it still burns the next day. I read you were supposed to do it for 48 hours, but it really hurt! Not sure what to think of this reaction? It's hard to tell if it's red because my skin is stained.

[jessicalw28]

My hives or whatever they are, can be just about anywhere (face, neck, trunk, legs, arms, feet, scalp). They never completely go away, but just move around. They usually are symmetrical (both arms, both legs.) I also occasionaly get some swelling under my eyes and in my lips along with mouth and tongue ulcers. The iodine patch test that I did at home created a burning lesion that eventually peeled off. The skin underneath it is a bit red and shiny.

I have contacted my immunologist/allergist and am trying to see if he will do a skin biopsy. My endoscopy and blood tests came back negative. I also had some D and gas, which has improved after being gluten free a little over a week.

Benadryl does not help with the swelling or the hives. I am taking allegra, hydroxyzine and zantac and still have hives.