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JustMe75

Does Dh Itch All The Time?

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I posted this in another topic but it was with other stuff and I didn't get much of a response.

My youngest daughter (11) has a rash on her neck that has been there for about 6-8 months that looks like a million little pimples, some flesh color, some white heads, some red. She said they itch terrible but not all the time (probably not even most of the time). She told me last week they start itching after she eats. After she has been itching it then it burns and hurts to touch it. I took her to the doctor about a month ago and he said the usual... did I change laundry soap things, which I didn't . Its only on the front of her neck and chest and sholders but mostly on her neck. Could this be DH? Would it itch all the time? It kinda reminds me of a shaving rash if that helps you picture it. Like every pore is irritated.

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If she has already been diagnosed with Celiac then it could very well be the beginning of DH....

However, all by itself, it doesn't really sound much like DH which doesn't tend to get on the neck and face. DH is most often found on the arms, legs, and then the back and trunk (chest, stomach, arm pits, buttocks).

DH also is a "pox"-like rash - little blisters that break open easily when scratched and then scab over quickly and still itch even after scabbing. They can also burn, but always itch. DH has been described (and I can attest to it) as the itchiest rash on the planet and ever seen by anyone. But I've read on this forum from some who didn't have that much itch. But, itch, like pain, is a "tolerance" thing too!

What you are describing (from the brief description you give and without seeing), sounds a bit like a heat rash or (yes) a detergent/chemical reaction. Also, got to consider hormones at that age. You could try a gluten free diet for a while and see if that helps. Also a milk-free or wheat-free (but each one separately and not near in time) diet. I would try to change to a mild, fragrance-free detergent for her clothing and towels and sheets, etc. And then there's wool, polyester and dye - all can be culprits.

If it is DH it will be very stubborn and none of the above (except the Gluten Free diet) will help! If that doesn't start to help after a few week, you would have to go back to the Dr. (hopefully and allergist and/or dermatologist) for a complete evaluation!

GOOD LUCK! DH is an elusive Diagnosis.


Franceen

Diagnosed DH by Allergist via gluten-free Diet Success

Gluten-free since Dec 2005

Gluten-free works so why keep getting tests?

Neg skin biopsy & Neg bloodwork after gluten-free for 3 months

No Endoscopy - need to eat gluten for good test & won't do it

No other Allergies or major ailments!

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If she has already been diagnosed with Celiac then it could very well be the beginning of DH....

However, all by itself, it doesn't really sound much like DH which doesn't tend to get on the neck and face. DH is most often found on the arms, legs, and then the back and trunk (chest, stomach, arm pits, buttocks).

DH also is a "pox"-like rash - little blisters that break open easily when scratched and then scab over quickly and still itch even after scabbing. They can also burn, but always itch. DH has been described (and I can attest to it) as the itchiest rash on the planet and ever seen by anyone. But I've read on this forum from some who didn't have that much itch. But, itch, like pain, is a "tolerance" thing too!

What you are describing (from the brief description you give and without seeing), sounds a bit like a heat rash or (yes) a detergent/chemical reaction. Also, got to consider hormones at that age. You could try a gluten free diet for a while and see if that helps. Also a milk-free or wheat-free (but each one separately and not near in time) diet. I would try to change to a mild, fragrance-free detergent for her clothing and towels and sheets, etc. And then there's wool, polyester and dye - all can be culprits.

If it is DH it will be very stubborn and none of the above (except the Gluten Free diet) will help! If that doesn't start to help after a few week, you would have to go back to the Dr. (hopefully and allergist and/or dermatologist) for a complete evaluation!

GOOD LUCK! DH is an elusive Diagnosis.

Thank you for the reply. I didn't think it was in the right place to be DH but wasn't sure. I don't think heat rash because it is almost constant but seems to flare up at times. I think it is food related more then laundry soap because it is actually where clothes aren't touching her (like throat to jaw line) mostly. I will try the dairy and gluten free to see if it helps. I am gluten-free and my older daughter is allergic to dairy.

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Although this is not the 'usual' presentation for DH, DH can be know to not follow the rules. When I was a child I had the usual presentation for DH, misdiagnosed as 12 months out of the year poison ivy for years. I have also had DH present only on the neck, sides of my face and scalp. Sometimes it would itch horribly but not 24/7. Usually after I tore off the tops of the lesions and the fluid was released then the itching would stop but the sores would take months to heal and new ones would form outside the borders of the old one. One thing about DH is that it leaves distinctive scars, the scars from DH are a purplish red and take a very long time to fade. Have you eliminated gluten from all the toiletries you all use? Shampoos and lotions etc. I had to be a real gluten scout for a bit before my DH healed and it can take up to 2 years for the antibodies to leave the skin layers. Until the antibody reaction is gone it takes very little gluten to restart the DH. I am now 5 years into the gluten-free diet and even when glutened I only get one or two tiny blisters now that heal quickly. It does take time though and the only good thing I could really say about my DH was for the first couple of years it let me know within hours when I had been CC'd. If you should decide to have them biopsy the rash make very sure they know what they are doing, they need to biopsy the area next to the active lesion not the lesion itself.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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i was just diagnosed with DH and i had it on my lower back, across my belly, neck, scalp and shins of my legs....after going gluten-free and dapsone it all disappeard, now it went to my face and pubic area recently..so i'm guessing every one is different..the ones on my face don't itch as much as it does/did everywhere else. I'm starting to think this is a never ending battle anymore ;(

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I believe that DH has no limitations regarding location. Mine started on my scalp and was pretty itchy. I first thought they were fly bites (we were on vacation in Florida). I was scratching and scabbing and scratcing off the scabs, and on and on. I went to my doctor who said "I can tell you it's not cancer" (what else do you think when you have skin lesions), and referred me to a dermatologist. By the time I got to her, I had breakouts on my chin. She thought my chin looked like impetigo and then the first tests from my scalp said folliculitis. I started breaking out on my upper back and when I had a nice new fresh blister I ran to the derm, she removed it, sent it out for biopsy and bingo! Dermatitis Herpetiformis! She started me on Dapsone and a gluten free diet.

12 years now. (Shopping is much easier now than it was then) I do have small breakouts from time to time, mostly on my scalp, near my elbow, on one (not both) breast and they don't itch like the original breakout did.

A diagnosis of DH is a diagnosis of Celiac even if there are no intestinal symptons. But a diagnosis of Celiac does not mean someone will have DH.

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I believe that DH has no limitations regarding location. Mine started on my scalp and was pretty itchy. I first thought they were fly bites (we were on vacation in Florida). I was scratching and scabbing and scratcing off the scabs, and on and on. I went to my doctor who said "I can tell you it's not cancer" (what else do you think when you have skin lesions), and referred me to a dermatologist. By the time I got to her, I had breakouts on my chin. She thought my chin looked like impetigo and then the first tests from my scalp said folliculitis. I started breaking out on my upper back and when I had a nice new fresh blister I ran to the derm, she removed it, sent it out for biopsy and bingo! Dermatitis Herpetiformis! She started me on Dapsone and a gluten free diet.

12 years now. (Shopping is much easier now than it was then) I do have small breakouts from time to time, mostly on my scalp, near my elbow, on one (not both) breast and they don't itch like the original breakout did.

A diagnosis of DH is a diagnosis of Celiac even if there are no intestinal symptons. But a diagnosis of Celiac does not mean someone will have DH.

Interesting... the doctor said maybe impentigo and tried a cream and an antibiotic and nothing changed. I thought maybe folliculitis cause it looks like the pores, or hair follicules are inflamed. Its scattered on her upper back and chest but mostly on her neck. Maybe I will ask to see a derm. It almost looks like acne but they are everywhere... like every pore is irritated. Like a mans shaving rash.

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Interesting... the doctor said maybe impentigo and tried a cream and an antibiotic and nothing changed. I thought maybe folliculitis cause it looks like the pores, or hair follicules are inflamed. Its scattered on her upper back and chest but mostly on her neck. Maybe I will ask to see a derm. It almost looks like acne but they are everywhere... like every pore is irritated. Like a mans shaving rash.

Get her tested. Tell the dermatologist you want her tested for DH and maybe have a full set of allergy tests.

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It sounds to me like what my daughter and I have, keratosis pilaris. It looks like you have goosebumps, but they're inflamed. They don't always have to be red, but when a flare occurs, they usually turn red and can bleed too. Mine just feels like bumps, but my daughter's is worse and really makes her skin feel like sandpaper.

With this skin disorder, your body produces too much keratin, a hard waxy protein, and it clogs hair follicles. Infact, if you squeeze the bumps, you usually get a hard white waxy bit of stuff out. It can itch like crazy, and can occur anywhere on your body, although some areas are more likely than others.

While you wait to see a derm, you might want to try what we do to help with ours. It's important to exfoliate the affected skin to break open the bumps and help remove the keratin. Then blot yourself dry, don't rub. You want to keep as much of the water moisture on your skin as possible. And apply a good thick lotion (we use Suave for extra sensitive and dry skin). This usually helps keep it pretty well controlled, although my daughter's never completely goes away.

I can say though that our rashes appear to be getting better since we went gluten-free about 3 weeks ago. Good Luck!!!

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I posted this in another topic but it was with other stuff and I didn't get much of a response.

My youngest daughter (11) has a rash on her neck that has been there for about 6-8 months that looks like a million little pimples, some flesh color, some white heads, some red. She said they itch terrible but not all the time (probably not even most of the time). She told me last week they start itching after she eats. After she has been itching it then it burns and hurts to touch it. I took her to the doctor about a month ago and he said the usual... did I change laundry soap things, which I didn't . Its only on the front of her neck and chest and sholders but mostly on her neck. Could this be DH? Would it itch all the time? It kinda reminds me of a shaving rash if that helps you picture it. Like every pore is irritated.

Wanted to throw my 2 cents in a little late, but none the less.

I have DH and have found that anything that I put on my skin ( lotion shampoo conditioner hair products laundry detergents soap ) will cause me to break out. I've had this same rash since about June of 2007. Since starting on a single elbow, it moved to the back, legs, arms, stomach, scalp and torso. I've been gluten-free since January with little improvement in symptoms. I really think it varies on the person.

I would check the ingredients of all the products that you and your daughter are using. If she's in sports and they collectively wash the jerseys it might be that or something she's using in her hair. Every pore being irritated is the same characteristics that mine has in random blotchy spots. I would none the less have her tested or just do an elimination diet. Although that might be hard with a school aged child as you ( and they too ) don't always really know what they're eating. Good luck and keep us posted.


-Patricia

Celiac & Duhring Disease

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