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Varying Degrees Of D.h.?


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4 replies to this topic

#1 mosaicmom

 
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Posted 14 September 2008 - 10:35 AM

My daughter has had DH once- perhaps twice (maybe as a baby in conjunction with a stomach flu- on her diaper area), most recent, 4 years ago, providing what she has now isn't DH.
Like I said, it has shown up more in a classic sense without a doubt- 4 yrs ago but I'm having a hard time differentiating what is on her skin now.
I thought of taking a picture and trying to load it to show the forum to get feedback- but only one computer loads chips so I haven't gotten on that.
She's had atopic dermatitits all her life, and an allergic skin reaction to peanut products when she was younger- this is different than that. That would look more like a ringworm patch, with a scaliness to it after a week, kind of thick.
This is a bunch of tiny red bumps in an area on her forearm, but not enough to be considered a blister, and definitely not acne or ingrown hair. We tried to show it to the dr. but no response. One or two within the patch are red from scratching and they don't go away easily. (background, she has to stay glutened til the end of the month).
Tiny red bumps, some a tiny bit bigger, some red and opened from itching. Not flea bites either. She has them around her knees too.
Different than the rash 4 yrs ago, different from when and if it was when she was a baby. And only in small patches around her body- another place is on the back of her neck.
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#2 ravenwoodglass

 
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Posted 15 September 2008 - 03:08 AM

It does sound like DH. And yes DH can change in presentation. When I was your DD's age I looked like I was covered in poison ivy 12 months out of the year. The only times I didn't have oozing sores was for a month or so during and after a heavy dose of prednisone. By my teen years it was only showing up on the inside of my joints at the elbows and knees and the bottom of my feet and on my face it looked like severe acne. In adulthood it was mostly on my scalp, neck, face and my shoulders (I had long hair and used gluteny shampoos and hairdyes) with only occasional outbreaks on my arms and legs. My derm kept telling me I had 'pickers acne' even though he had no answer when I asked him if acne itched and burned. His answer for the blisters were that I had an infection from picking but he again had no answer for why the clear fluid in them burned the adjacent skin. He also never remarked on the scarring. DH leaves distinctive purple scars that take a very long time to fade.
Can you get her in to see a dermatologist? Some of them are now a bit more 'up' on DH than they were back then. He can biopsy the areas beside the lesions to look for the antibodies. Stay with her while he biopsies and if he biopsies the lesions themselves you will know that he doesn't know what he is doing with DH and to ignore it if he says that he has firmly decided that it isn't.
A diagnosis of DH is a diagnosis of celiac and many of us are blanketed under the atopic dermatitis diagnosis for years when derms are not familiar with it.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#3 mosaicmom

 
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Posted 15 September 2008 - 06:53 PM

Thank you for your reply. It's a web I'm trying to untangle from... all the misinformation for almost 17 yrs. I'm so frustrated.
I can't say that hers turn purple. What's funny is, I get like... one bump occasionally that ends up turning purple... but I'm not the one being tested and it surely isn't enough to go in there.
I'm going to cling to the one time it was DH, though the ped back then said it was contact metal reaction. NO! It spread everywhere like chicken pox looked, but wasn't.

Again, thank you.
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#4 mosaicmom

 
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Posted 16 September 2008 - 09:52 AM

Ravenwood...

If the bumps are as I described, which aren't blistered, can a biopsy even be done? Do they just scrape?
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#5 ravenwoodglass

 
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Posted 17 September 2008 - 03:26 AM

Ravenwood...

If the bumps are as I described, which aren't blistered, can a biopsy even be done? Do they just scrape?


Yes the area beside these could still be biopsied. They would use a very small 'punch' to take a bit of tissue. They do numb the skin first and it is not something that is really scarey or painful. In addition DH is not the only skin effects that we can get. My DD gets excema and my DS used to have small raised bumps all over his chest. Kind of like chicken skin. They never got red or itched and I can not for the life of me remember what the doctor called them. He had them most of his life. After a couple of months gluten-free they were gone.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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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