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New To Forum, Looks Like I May Have Dh

36Hatt

By 36Hatt
in Dermatitis Herpetiformis

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36Hatt Newbie
36Hatt
Posted

After nearly two years, the third doctor I have had has finally said that I have DH. I am going to a Gastro doc in December to confirm Celiacs disease. I started with a dermotologist about a rash and itch in the groin area. No blisters, no sores, just redness and itchy. Went through a number of creams. They all seemed to help with the discoloration and itch, but none of them made it go away.

More recently, I have had the blisters and sores on my forearms and knees, and some on my head. I think that is what lead them to DH and Celiacs.

At this point, I guess I don't know what questions to ask, but I do have a couple of them.

Could the redness and itching in the groin area be from Celiacs?

Are there varying levels of DH and Celiacs? Looking at some of the posts, I feel pretty fortunate. The rash, blisters, sores and itching and are annoying, but they don't interupt my lifestyle. Maybe just getting started?

Is it possible to go partially gluten free? Would just cutting back make a difference.

I have tried for four days to be gluten free. I suppose it's to early to see any difference.

I am sure there will be more questions, but thats it for now.

Thanks in advance for your responses.

Blaine

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Dixiebell Contributor
Dixiebell
Posted

Welcome! Did your Dr. take a biopsy next to one of the blisters? If it is DH then you have celiac. That might be the easiest test for you to do along with the blood tests.

36Hatt Newbie
36Hatt
Posted
  • Author

Welcome! Did your Dr. take a biopsy next to one of the blisters? If it is DH then you have celiac. That might be the easiest test for you to do along with the blood tests.

He did two biopsies. One was right on a blister. The other was doen in an area were I didn't really have any sores. but had some itching.

Blaine

bparravicino Newbie
bparravicino
Posted

Welcome Blaine,

Unfortunately, cutting back wiil not help.I went gluten free about six weeks ago and finally about four nights ago the itching subsided and I've been able to sleep through the nights, even with the girlfriend's snoring. Hope she does'nt read this.

Do lots of reading on here and wherever you can get info. There are many hidden triggers that a newcomer can easily fall pey to, (Like licking a stamp. Who would have thought?)It is very difficult to get your head around the thought of cutting out the many favourite foods that we've been using all of our lives but the option does not bear consideration.

Even with celiac disease we can still eat better than 90% oe the world's population

cassP Contributor
cassP
Posted

i cannot answer as to what is in your groin area- but i CAN tell u my experience with gluten & wheat & skin issues.

i have had DH, psoraisis, excema, dandruff, and hives-> all but the DH have disappeared with going gluten free.

ive only had this DH for about 2 months, and have only been 100% gluten free for 3 1/2 months.

over the past decade- when i was on Atkins/BloodtypeO/Paleo-> i always noticed that when i would "cheat" and have a piece of pizza or a 1/2 sandwich 1x a month- i would notice almost immediately i would feel like the skin ALL OVER MY BODY was itching!!!

that's it :)

rosetapper23 Explorer
rosetapper23
Posted

You'll need to eliminate iodine, too, in order to help get rid of the hives/rash. DH has a tendency to be caused by BOTH gluten and iodine ingested together. Iodine can be found in iodized salt (so it's used a lot on potato chips and fries), some fish, crustaceans, asparagus, and dairy products in some areas of the country. I've found that organic dairy products usually don't contain iodine.

As for me, iodine and gluten cause DH, but iodine ALONE causes an itchy rash that doesn't have blisters. This might be what you have in the groin area. I've used Clobetasol to ease the itching and rash, since I have to take thyroid meds that contain iodine. As long as I don't eat gluten, though, I don't get DH--just the itchy rash from the iodine. If you get rid of the iodine, that rash just might go away.

36Hatt Newbie
36Hatt
Posted
  • Author

Thanks all for your response. I hve been working at being gluten-free, but it's hard to tell what does and does and doesn't have gluten when eating out. Think I'm good so far. Guess we'll see what happens.

Blaine

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mushroom Proficient
mushroom
Posted

Eating out is a fraught experience for an inexperienced gluten-freer - there are so many pitfalls!! So many sauces, so many marinades, so many products that they purchase pre-made by someone else and don't know what's in them :o:blink: So much lack of knowledge of what is in a dish, in fact so little knowledge about what gluten even is :unsure: Best to avoid at first until you get the hang of it or you will never know if you are truly gluten free, just IMHO.

  • 2 weeks later...
dh mom Newbie
dh mom
Posted

After nearly two years, the third doctor I have had has finally said that I have DH. I am going to a Gastro doc in December to confirm Celiacs disease. I started with a dermotologist about a rash and itch in the groin area. No blisters, no sores, just redness and itchy. Went through a number of creams. They all seemed to help with the discoloration and itch, but none of them made it go away.

More recently, I have had the blisters and sores on my forearms and knees, and some on my head. I think that is what lead them to DH and Celiacs.

At this point, I guess I don't know what questions to ask, but I do have a couple of them.

Could the redness and itching in the groin area be from Celiacs?

Are there varying levels of DH and Celiacs? Looking at some of the posts, I feel pretty fortunate. The rash, blisters, sores and itching and are annoying, but they don't interupt my lifestyle. Maybe just getting started?

Is it possible to go partially gluten free? Would just cutting back make a difference.

I have tried for four days to be gluten free. I suppose it's to early to see any difference.

I am sure there will be more questions, but thats it for now.

Thanks in advance for your responses.

Blaine

hi

Our son has dh, so unfortunately, I am very familiar with it. It's trademark locations are to start up on the elbows, the front of the knees and on the buttocks. It is extremely itchy. One of the itchiest diseases known. The blisters will appear with a clear liquid in them. After having it, it will spread across shoulders, neck, face, down the arms etc. When this rash is that extensive, it will take almost a full year to go away, because, it only goes away when the anti-bodies go down. Until that time, the doc is apt to put your son on dapson. Dapson is a medicine which is used to treat leprosy. Some people cannot toleratte Dapson as it affects their liver, (our son couldn't) So, the next step most docs do is to stick the patient on very large doses of steriods. Do NOT do this. Any doc worth their salt will tell you the big dangers of steriods. After months of everything from steroids to chemotherapy drugs, our son was finally put on sulfapyradine, which is made by Jacobus Pharmaceutica. It is an old-school drug widely used in the U.K. and pre-dates dapson. it does not have the nasty side effects of dapson, however, it is more expensive to produce. sulfa-pyridine is free. Jacobus does not market it due to the limited market for it, so your doc needs to request it. DH is diagonosed with a skin biopsy taken from NEXT TO the blister.

you do have to entirely give up gluten. cutting back won't matter. also, if your blisters are related to your diet, it will take about a year for your intestines to repair themvsetves before the blistering goes away. good luck

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