Re: DH Rash or mystery disease?

October 8, 2004

Janet,

Does your neice have good muscle control? Small motor skills? Large motor skills? Does she fall down a lot?

Cari

DH Rash or mystery disease?

My little neice (age 8) has kept a constant body rash on her since an infant. Before birth, the doctors told her mom she had died in the womb, but when they went to do the D & C, they detected the heartbeat. She had several near close brushes with SIDS even a little past age 1. The rash flares up worse at times, but her mom can't seem to pinpoint why. She eats lots of bread and cheese. Always has stomach aches. Short stature, shows blood in her urine constantly- will go an entire day without urinating no matter how much water she drinks unless you make her go try, has chronic yeast infections. A blood screen by a naturopath showed tear drop shaped blood cells that the ND said were leaking protein, also many free radical damaged cells. I thought her rash sounded a lot like DH when I read about it in a book, but looking at images of DH online it appears to be more of a blister like rash. Her's is pindots in places with clusters in others. All of the doctors are puzzled. She has been to a kidney specialist who finally concluded the constant blood in her urine was something genetic, but unspecified. Does any of this sound like something familiar to anyone? She is a puzzle to us all and we can't figure out what's wrong. She is the one I have ordered the t-TG screen for from York Allergy Labs. Any ideas of further tests to try, etc. would be appreciated.Thanks!Janet

October 8, 2004

Sounds like my Daughter. She had same symptoms from birth. She had a rare kidney disease. Her kidneys were totally covered with cysts, and her tube from the kidney to bladder was not properly aligned. My Daughter would run very high fevers 108-112 degrees. She was on very strong meds, and would have laser surgery every 3 to 6 months to remove the cysts. This lasted until age 7. She has been fine since(and she is now 32 years of age.) Our Doctor , at the time, thought it was from Agent Orange, as her Dad spent a tour of duty in Viet-nam and was exposed to it. Was her Father in the Gulf before her conception? It is not normal for a child to have blood in their urine. The only way my Daughter could urine was to sit her in a warm pan of water or be dilated. The only food she could tolerate was cottage cheese. By the way, my Daughter is now Gluten intolerant, but not Celiac as I am. She suffers from asthma and allergy to soy. Please keep looking for answers until it is resolved. Theresa

DH Rash or mystery disease?

My little neice (age 8) has kept a constant body rash on her since an infant. Before birth, the doctors told her mom she had died in the womb, but when they went to do the D & C, they detected the heartbeat. She had several near close brushes with SIDS even a little past age 1. The rash flares up worse at times, but her mom can't seem to pinpoint why. She eats lots of bread and cheese. Always has stomach aches. Short stature, shows blood in her urine constantly- will go an entire day without urinating no matter how much water she drinks unless you make her go try, has chronic yeast infections. A blood screen by a naturopath showed tear drop shaped blood cells that the ND said were leaking protein, also many free radical damaged cells. I thought her rash sounded a lot like DH when I read about it in a book, but looking at images of DH online it appears to be more of a blister like rash. Her's is pindots in places with clusters in others. All of the doctors are puzzled. She has been to a kidney specialist who finally concluded the constant blood in her urine was something genetic, but unspecified. Does any of this sound like something familiar to anyone? She is a puzzle to us all and we can't figure out what's wrong. She is the one I have ordered the t-TG screen for from York Allergy Labs. Any ideas of further tests to try, etc. would be appreciated.Thanks!Janet

October 8, 2004

DH is indeed more like blisters. In fact, it is

blisters. I actually never even thought of mine as a

rash becasue it just didn't look like a rash.

richard

--- JanetB@... wrote:

> My little neice (age 8) has kept a constant body

> rash on her since an infant. Before birth, the

> doctors told her mom she had died in the womb, but

> when they went to do the D & C, they detected the

> heartbeat. She had several near close brushes with

> SIDS even a little past age 1. The rash flares up

> worse at times, but her mom can't seem to pinpoint

> why. She eats lots of bread and cheese. Always has

> stomach aches. Short stature, shows blood in her

> urine constantly- will go an entire day without

> urinating no matter how much water she drinks unless

> you make her go try, has chronic yeast infections.

> A blood screen by a naturopath showed tear drop

> shaped blood cells that the ND said were leaking

> protein, also many free radical damaged cells. I

> thought her rash sounded a lot like DH when I read

> about it in a book, but looking at images of DH

> online it appears to be more of a blister like rash.

> Her's is pindots in places with clusters in others.

> All of the doctors are puzzled. S

> he has been to a kidney specialist who finally

> concluded the constant blood in her urine was

> something genetic, but unspecified.

> Does any of this sound like something familiar to

> anyone? She is a puzzle to us all and we can't

> figure out what's wrong. She is the one I have

> ordered the t-TG screen for from York Allergy Labs.

> Any ideas of further tests to try, etc. would be

> appreciated.

> Thanks!

> Janet

>

__________________________________________________

October 8, 2004

, DH can be in a form of a rash, which you react to after eating gluten. My daughter has this form. Theresa

Re: DH Rash or mystery disease?

DH is indeed more like blisters. In fact, it isblisters. I actually never even thought of mine as arash becasue it just didn't look like a rash.richard--- JanetB@... wrote:> My little neice (age 8) has kept a constant body> rash on her since an infant. Before birth, the> doctors told her mom she had died in the womb, but> when they went to do the D & C, they detected the> heartbeat. She had several near close brushes with> SIDS even a little past age 1. The rash flares up> worse at times, but her mom can't seem to pinpoint> why. She eats lots of bread and cheese. Always has> stomach aches. Short stature, shows blood in her> urine constantly- will go an entire day without> urinating no matter how much water she drinks unless> you make her go try, has chronic yeast infections. > A blood screen by a naturopath showed tear drop> shaped blood cells that the ND said were leaking> protein, also many free radical damaged cells. I> thought her rash sounded a lot like DH when I read> about it in a book, but looking at images of DH> online it appears to be more of a blister like rash.> Her's is pindots in places with clusters in others.> All of the doctors are puzzled. S> he has been to a kidney specialist who finally> concluded the constant blood in her urine was> something genetic, but unspecified. > Does any of this sound like something familiar to> anyone? She is a puzzle to us all and we can't> figure out what's wrong. She is the one I have> ordered the t-TG screen for from York Allergy Labs. > Any ideas of further tests to try, etc. would be> appreciated.> Thanks!> Janet> > > __________________________________________________

October 8, 2004

As far as I know, eating gluten is the only thing that

causes DH.

richard

--- Theresa

wrote:

> , DH can be in a form of a rash, which you

> react to after eating gluten. My daughter has this

> form. Theresa

__________________________________________________

October 8, 2004

My eldest has the same pin dot rash over his body. Okay, maybe it

doesn't follow the typical DH picture, in fact the doctor called it

ketosis pilaris (basically his pores are a extra large and get clogged

or irritated.) BUT, since he's been diagnosed and on a GF diet (since

June '04) the rash has almost completely gone away. He only has it on

his upper arms and even there, they're not red anymore, just tiny

bumps. The bumps on his face have completely gone away (this was a

major turning point in his accepting, wholeheartedly, eating GF.) This

all is, EXCEPT when he eats something with gluten in it. Then, the

full body rash returns, his face is red, he has other reactions too,

poor guy. My second child was beginning to show signs of the bumps

forming on his face (he's 10). Since he's been GF, they've gone away

too.

> My little neice (age 8) has kept a constant body rash on her since

an infant. Before birth, the doctors told her mom she had died in the

womb, but when they went to do the D & C, they detected the heartbeat.

She had several near close brushes with SIDS even a little past age 1.

The rash flares up worse at times, but her mom can't seem to pinpoint

why. She eats lots of bread and cheese. Always has stomach aches.

Short stature, shows blood in her urine constantly- will go an entire

day without urinating no matter how much water she drinks unless you

make her go try, has chronic yeast infections. A blood screen by a

naturopath showed tear drop shaped blood cells that the ND said were

leaking protein, also many free radical damaged cells. I thought her

rash sounded a lot like DH when I read about it in a book, but looking

at images of DH online it appears to be more of a blister like rash.

Her's is pindots in places with clusters in others. All of the

doctors are puzzled. S

> he has been to a kidney specialist who finally concluded the

constant blood in her urine was something genetic, but unspecified.

> Does any of this sound like something familiar to anyone? She is a

puzzle to us all and we can't figure out what's wrong. She is the one

I have ordered the t-TG screen for from York Allergy Labs. Any ideas

of further tests to try, etc. would be appreciated.

> Thanks!

> Janet

October 8, 2004

I believe that in addition to eating gluten, people who have DH

could react by having their skin come in direct contact with gluten

or gluten-containing substances.

>

> > , DH can be in a form of a rash, which you

> > react to after eating gluten. My daughter has this

> > form. Theresa

>

> __________________________________________________

>

October 8, 2004

I aked her mom and her motor skills are OK and she doesn't fall a lot. Her mom

(my sis) told me the last kidney specialist she went to told her that since my

sister always runs blood in her urine and my neice did too, it was no need to

test further since it was apparently genetic and harmless.

Our grandmother had kidney complications and severe osteoporosis before dying.

I remember

my grandmother saying her own grandmother died in her 30's or 40's of Bright's

Disease. My grandmother's son (my dad) and his sister both have/had diabetes- my

dad since age 14. My aunt also had kidney problems and had to have her legs

amputated before dying of diabetes around late 40's or early 50's in age. Also

my neice's brother developed diabetes at age 9. Lots of asthma and autoimmune

disorders on this side of the family, my husband has one side very similar so we

have quite a mix of genes handed to our kids. I wonder if there is some

underlying gluten intolerance here.... Plan on testing every one of them I can

as I can afford it.

Janet

Re: DH Rash or mystery disease?

> Janet,

> Does your neice have good muscle control? Small motor skills?

> Large motor skills? Does she fall down a lot?

> Cari

October 8, 2004

That does sound a lot like my neice. When my sister finally got someone to do

some allergy tests that would take her insurance it was an Ear Nose Throat

Specialist. She walked in and the ENT said he was sure my neice had a wheat

allergy. They took 2 tubes of blood- very traumatic!- and tested for 8 IGE

reactions. All were negative so they told my sister her kids (another got

tested too) did not have allergies, it was a contact rash and to change

detergents!!! (GRRR- some doctors!)

Janet

Re: DH Rash or mystery disease?

>

> My eldest has the same pin dot rash over his body. Okay, maybe it

> doesn't follow the typical DH picture, in fact the doctor called it

> ketosis pilaris (basically his pores are a extra large and get clogged

> or irritated.) BUT, since he's been diagnosed and on a GF diet (since

> June '04) the rash has almost completely gone away. He only has it on

> his upper arms and even there, they're not red anymore, just tiny

> bumps. The bumps on his face have completely gone away (this was a

> major turning point in his accepting, wholeheartedly, eating GF.) This

> all is, EXCEPT when he eats something with gluten in it. Then, the

> full body rash returns, his face is red, he has other reactions too,

> poor guy. My second child was beginning to show signs of the bumps

> forming on his face (he's 10). Since he's been GF, they've gone away

> too.

October 8, 2004

Wow, that sound like that was some tough years for you and your daughter! I am

glad she is better now. My neice's dad hasn't been in the Gulf or anywhere like

that as far as I know. My neice also has asthma and I would bet money a soy

allergy (soy formula as infant and drinks tons of soy milk now). Her hands also

get very red after she handles plastic toys such as pushing a plastic shopping

basket. She says that redness is not itchy, but her rash (mostly on her tummy,

chest, back and bottom is severely itchy. Her mom keeps her covered in

cortisone cream.

Janet

Re: DH Rash or mystery disease?

> Sounds like my Daughter. She had same symptoms from birth. She

> had a rare kidney disease. Her kidneys were totally covered with

> cysts, and her tube from the kidney to bladder was not properly

> aligned. My Daughter would run very high fevers 108-112 degrees.

> She was on very strong meds, and would have laser surgery every 3

> to 6 months to remove the cysts. This lasted until age 7. She

> has been fine since(and she is now 32 years of age.) Our Doctor ,

> at the time, thought it was from Agent Orange, as her Dad spent a

> tour of duty in Viet-nam and was exposed to it. Was her Father in

> the Gulf before her conception? It is not normal for a child to

> have blood in their urine. The only way my Daughter could urine

> was to sit her in a warm pan of water or be dilated. The only

> food she could tolerate was cottage cheese. By the way, my

> Daughter is now Gluten intolerant, but not Celiac as I am. She

> suffers from asthma and allergy to soy. Please keep looking for

> answers until it is resolved. Theresa

October 8, 2004

This has not been my experience. I have DH and have regularly been

in dermal contact with gluten containing substances, including

planting and harvesting wheat without incident. As long as I adhere

strictly to the GF diet I am OK. My dermatologist had told me that

ingestion was the only way I would be affected and so far he is

correct.

> >

> > > , DH can be in a form of a rash, which you

> > > react to after eating gluten. My daughter has this

> > > form. Theresa

> >

> > __________________________________________________

> >

October 8, 2004

[i also meant to say she was tested for 8 IGE allergy reactions (not gluten)

such as peanuts, milk, wheat, etc.]

I'm not sure if my sis has tried All Free and Clear or not yet, I will have to

ask her- I know she's tried several kinds over the years to see if they would

help, but I have found most everything bothers my sensitive son. I use Seventh

Generation (sparingly) liquid detergent and occasionally vinegar instead of

fabric softener and live with the static. Also instead of bleach I use a

product- don't know the name of it right off, but I got it at Whole Foods and it

is hydrogen peroxide based- along with hot water and double rinses as you say.

I'm glad you caught your daughter early before damage was done and that she has

a support system. I'd like my kids to meet other people dealing with the same

things, but haven't found many yet...

Janet

Re: Re: DH Rash or mystery disease?

> Hi. This happened to my daughter about 2 years ago. She had

> hives all over her trunk, arms, cheeks, legs, and stomach. I

> started using All Free and Clear detergent and rinsing her clothes

> twice and it has not happened since. She was diagnosed with

> Celiac 1 year ago. Her labs were obvious Celiac and her biopsy

> was negative. Dr. Guandalini at the University of Chicago

> Hospitals stated that we caught the Sprue before it actually did

> any damage to her intestine. She was 3 years old at time of her

> diagnosis. My mom and I both have had Celiac for 6 years. It

> helps a lot to have three in my family going through this

> together. Ali

October 8, 2004

I am sensitive to detergents on my skin. I am very picky with what I

use. I can use regular ALL detergent, but when I was at Costco last

time they were out of the regular, so I got the ALL FREE AND CLEAR. I

have had a rash for more than a week! It gets worse when I wear the

clothes I washed in it, and gets a better when I wear other clothes

washed in different detergent. So I am pretty sure that it is the ALL

F & C detergent. It is free of perfumes and dyes, but there must be

a chemical in it that bothers me. Strange that it doesn't happen with

the regular though...

JanetB@... wrote:

[i also meant to say she was tested for 8 IGE allergy reactions (not

gluten) such as peanuts, milk, wheat, etc.]

I'm not sure if my sis has tried All Free and Clear or not yet, I will

have to ask her- I know she's tried several kinds over the years to

see if they would help, but I have found most everything bothers my

sensitive son. I use Seventh Generation (sparingly) liquid detergent

and occasionally vinegar instead of fabric softener and live with the

static. Also instead of bleach I use a product- don't know the name of

it right off, but I got it at Whole Foods and it is hydrogen peroxide

based- along with hot water and double rinses as you say. I'm glad you

caught your daughter early before damage was done and that she has a

support system. I'd like my kids to meet other people dealing with the

same things, but haven't found many yet...

Janet

Re: Re: DH Rash or mystery disease?

> Hi. This happened to my daughter about 2 years ago. She had

> hives all over her trunk, arms, cheeks, legs, and stomach. I

> started using All Free and Clear detergent and rinsing her clothes

> twice and it has not happened since. She was diagnosed with

> Celiac 1 year ago. Her labs were obvious Celiac and her biopsy

> was negative. Dr. Guandalini at the University of Chicago

> Hospitals stated that we caught the Sprue before it actually did

> any damage to her intestine. She was 3 years old at time of her

> diagnosis. My mom and I both have had Celiac for 6 years. It

> helps a lot to have three in my family going through this

> together. Ali

October 8, 2004

For us the only detergent that doesn't trigger asthma symptoms is Arm

& Hammer Perfume and Dye Free. Soemtimes I use Clorox II and double

rinse cycle for extra grubby stuff (like Pre-K uniforms....)

> I am sensitive to detergents on my skin. I am very picky with what I

> use. I can use regular ALL detergent, but when I was at Costco last

> time they were out of the regular, so I got the ALL FREE AND CLEAR. I

> have had a rash for more than a week! It gets worse when I wear the

> clothes I washed in it, and gets a better when I wear other clothes

> washed in different detergent. So I am pretty sure that it is the ALL

> F & C detergent. It is free of perfumes and dyes, but there must be a

> chemical in it that bothers me. Strange that it doesn't happen with

the

> regular though...

>

October 9, 2004

I've always been extremely allergic to TIDE so don't use it and when I started using Dreft while pregnant with my first I'd get itchy blisters all over my hands. I don't have any problems as long as I stay away from those two. I use Wisk or Arm and Hammer with no problems. Now I've also been warned to not use fabric softeners of any kind however I've never had a problem with them and neither have any of the kids.

:-) In VA