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My Dh Is Not Disappearing...

Woolygimp

By Woolygimp
in Dermatitis Herpetiformis

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Woolygimp Contributor
Woolygimp
Posted

I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.

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lovegrov Collaborator
lovegrov
Posted

You're absolutely sure this is DH? Those are not the most common places for DH. Those are some of the places I have psoriasis.

richard

mushroom Proficient
mushroom
Posted

Richard, I wondered the same thing. Those are two of the places my psoriasis pops up. Woolygimp, can you describe this rash to us? Does it have any scales or flakes? What color is is when it fades?

YoloGx Rookie
YoloGx
Posted

Whatever it is, you might want to consider using the detox herbs (dandelion, milk thistle, cleavers) and /or a variety of other ways to detox: exercise, saunas, mudpacks, fresh juiced or blended vegetables (esp. add some parsley or coriander) each day.

Bea

ravenwoodglass Mentor
ravenwoodglass
Posted

Are you using iodized salt or taking a supplement with iodine? If you are stop using them for a bit. Iodine can keep the reaction active even if your not consuming gluten. You can add it back in after you have healed completely and the antibodies have left the skin.

Maggie Mermaid Apprentice
Maggie Mermaid
Posted
I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.

Are you taking any vitamin supplements? Could be something in them you are reacting to, especially something like fish oil supplements. My husband had a reaction to the iodine in seafood and is allergic to tomato sauce and large tomatoes.

byoung20415 Newbie
byoung20415
Posted

You could be having a reaction to the gluten in your laundry soap or shower soap. I have reactions to stuff like that. I can't walk on our carpet bare footed because it has a stain sealer that contains gluten and it causes a reaction for me. Be sure your not sitting on a sofa that may have a stain sealer on it, too. Good luck! Stay gluten-free!

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lovegrov Collaborator
lovegrov
Posted

Please, byoung, there's no use in scaring people to death. If you truly react to walking on a carpet or sitting on furniture, you are the very FIRST person with celiac I've ever heard of having this problem. This simply is NOT a problem for celiacs.

richard

ravenwoodglass Mentor
ravenwoodglass
Posted
Please, byoung, there's no use in scaring people to death. If you truly react to walking on a carpet or sitting on furniture, you are the very FIRST person with celiac I've ever heard of having this problem. This simply is NOT a problem for celiacs.

richard

I agree. I am super sensitive and these are just not things I would worry about.

psawyer Proficient
psawyer
Posted
Please, byoung, there's no use in scaring people to death. If you truly react to walking on a carpet or sitting on furniture, you are the very FIRST person with celiac I've ever heard of having this problem. This simply is NOT a problem for celiacs.

richard

I agree too. Like the vast majority of celiacs, I do not react to skin contact. In my business, I frequently handle products containing wheat. I wash my hands thoroughly after doing so, and have never had a problem. Worry about what you eat, not about what you walk or sit on.

If you have an allergy to something, then skin contact might be an issue.

ChemistMama Contributor
ChemistMama
Posted

Woolygimp:

My DH got much worse before it got better. I eventually broke down and went on dapsone to clear it up. However, in one spot with the oldest lesions I"m still trying to heal them after a year due to secondary skin problems I ended up with because of the scratching.

However, the posters below are right, it doesn't sound like DH. DH (1) itches like crazy, and (2) leaves behind purple scars. If neither of these are true, you may want to see your dermatologist.

As for skin contact, DH is initiated in the intestinal tract, when gluten you eat causes antibodies to form which attack your skin. If you are sensitive to touching things with gluten, you have an allergy, not DH.

nasalady Contributor
nasalady
Posted

Hi Woolygimp (and ChemistMama),

My DH got much worse before it got better. I eventually broke down and went on dapsone to clear it up. However, in one spot with the oldest lesions I"m still trying to heal them after a year due to secondary skin problems I ended up with because of the scratching.

Same thing with my husband, Paul. His DH got worse before getting better, even after being gluten free. Ended up on Dapsone for quite a while.

However, the posters below are right, it doesn't sound like DH. DH (1) itches like crazy, and (2) leaves behind purple scars. If neither of these are true, you may want to see your dermatologist.

The problem for Paul was that he developed a severe case of psoriasis simultaneously with the DH, and in a lot of the same places! It was terribly confusing and delayed treatment of the psoriasis.

It was tough at first to figure out which was which, but then it became obvious because the DH itched like crazy, and either looked like blisters or like craters where blisters once were, and it turned very dark purple as it healed.

The psoriasis behaved very differently from the DH....and it even looks and acts different depending where it is on his body! On his hands it makes his fingers crack and split, while on his knees and ankles it gets crusty. But he has DH on his knees too. :(

There are several different types of psoriasis, and some of them superficially resemble DH. You may want to consult a dermatologist to help you sort things out.....

Good luck!

JoAnn

  • 2 weeks later...
TSC1 Newbie
TSC1
Posted

It may be for others. Lotions and potions included, if they contain gluten may cause a reaction in some. Therefore, it is best to avoid them. Remember, for some, Celiac has no symptoms, but the damage is being done. For me, even a soup base that was once used for pasta or French fries in the same oil as fried goods with batter or flour cause a reaction. I am sure these are in minute amounts and I do not get a full reaction. Therefore, I think that lotions and potions applied to the skin or coming in contact with your hands could also be absorbed especially if you eat or touch your mouth without thinking afterwards. Even in that amount it could be enough in some people to cause a reaction.

TSC1 Newbie
TSC1
Posted

Tricky. If as I making my partner a sandwich, I segregate it and all utensils, and wash my hands each time I cross over, most times no reaction, but sometimes some, even if I am careful. Remember, all you need it an eight of a teaspoon to cause a major reaction. Therefore, I would not make a pizza from scratch for your friends if I were you.

TSC1 Newbie
TSC1
Posted

Joann,

I had both too. Therefore, I know the difference. One has bumps that appear and are very itchy and almost look like miniature pimples. The other has the symptoms you described. My father had it on his chest as I did for many years. Sometime on my arms and waist. The doctor gave up and finally stated he had "scabies". Where would he get scabies and my stepmother who slept in the same bed did not have them. He also had low blood calcium and boats of diarrhea until he was diagnosed with Pancreatic cancer, but never diagnosed with Celiac. When they opened him up for an operation to minimize the cancer, the doctor stated his small intestine was so scarred it was impossible not to believe he had a terrible accident at one time. My father never had an accident or was hospitalized except for hepatitis when he was 17. Otherwise, the doctor stated there was no other reason. Now that I have been diagnosed with Celiac, it confirms for me that through his Northern European roots, he maybe was never diagnosed. On question, where can I be tested for the genetic disposition?

mushroom Proficient
mushroom
Posted

Joann,

I had both too. Therefore, I know the difference. One has bumps that appear and are very itchy and almost look like miniature pimples. The other has the symptoms you described. My father had it on his chest as I did for many years. Sometime on my arms and waist. The doctor gave up and finally stated he had "scabies". Where would he get scabies and my stepmother who slept in the same bed did not have them. He also had low blood calcium and boats of diarrhea until he was diagnosed with Pancreatic cancer, but never diagnosed with Celiac. When they opened him up for an operation to minimize the cancer, the doctor stated his small intestine was so scarred it was impossible not to believe he had a terrible accident at one time. My father never had an accident or was hospitalized except for hepatitis when he was 17. Otherwise, the doctor stated there was no other reason. Now that I have been diagnosed with Celiac, it confirms for me that through his Northern European roots, he maybe was never diagnosed. On question, where can I be tested for the genetic disposition?

A company named Enterolab does genetic stool testing by mail. A quick google should find lots of information here and on the web about Enterolab.

mysecretcurse Contributor
mysecretcurse
Posted
I agree too. Like the vast majority of celiacs, I do not react to skin contact. In my business, I frequently handle products containing wheat. I wash my hands thoroughly after doing so, and have never had a problem. Worry about what you eat, not about what you walk or sit on.

Hey. While I am happy you guys arent that sensitive and I agree a lot of celiacs probably aren't, I just wanted to point out that I DO react, violently, to even touching gluten. I broke out in an intensely itchy and painful rash all over my hands and lower arms just from moving a clump of (didnt know at the time, but wheat) straw from one place to another while cleaning out a chicken house... I am deathly, deathly reactive to gluten and have had these reactions from accidentally touching it multiples of times... so I think the cleaner/carpet stuff, and anything else a person could touch, IS to be considered. Sorry not meaning to sound like I have attitude, its just frustrating to hear people say "don't worry" and what not about something that I know could make ME personally very very ill.

dh mom Newbie
dh mom
Posted

I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves.

It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there.

Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.

dh mom Newbie
dh mom
Posted

Hi, it still may be DH. Our son's was diagnosed a yr and ahalf ago and at the time had an extremely bad breakout everywhere, arms, neck, face, eyes, eyebrows, back and chest, knees(front) and elboiws(outside). Sulphapyradine (from Jacobus pharmaceuticals, ....see note to Martha in "looking for soothing relief blog) provided relief. It gets RID of the rash. However, (the point of all of this....) when our son gets into gluten now, even trace amounts, he does breeak out on arms, back and chest, even before knees and elbows. Have you had a lesions biopsied?

Glamour Explorer
Glamour
Posted

I am allergic to horses, cows, most dogs, some cats, etc.

I can't go anywhere near hay, animals around or not. A barn is enough to send me to the hospital.

Remember allergies, eczema and other skin issues, along with asthma are often found together along with other autoimmune conditions.

My DH (if it is DH) is not going away, and I keep wondering if maybe it is a contact allergy, food allergy or whatever.

I also wonder if I am making myself crazy and reactive to gluten, because of the stress of trying to figure out exactly what this rash is. The only stomach issues I have, is really bad gas after eating almost anything, after a lifetime of rarely having gas issues.

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