dermatitis herpetiformis

[Guest guest]

does anyone on the list have or know about dermatitis herpetiformis?

I've developed a rash on my hands. The doctor said it was eczema, but

I'm beginning to wonder. I looked DM up, and it said it usually shows

up on the elbows, knees or back. The itching is driving me insane, and

nothing seems to help.

thanx,

Lilly

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

" I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it. "

---Elwood P. Dowd

[Guest guest]

Lilly,

When I got it I got it the WORST on my hands and my feet. They were little blisters that itched me to insanity. Are you eating GF? I know there is something that the dermo can do to help. I've only had two cases of it in my life (pre-diagnosis) sO I never got any medication for it. I know your pain though...hope you feel better soon! -----Original Message-----From: fiestacranberry@...To: Sent: Tue, 17 May 2005 09:15:30 -0700Subject: [ ] dermatitis herpetiformis

does anyone on the list have or know about dermatitis herpetiformis?

I've developed a rash on my hands. The doctor said it was eczema, but

I'm beginning to wonder. I looked DM up, and it said it usually shows

up on the elbows, knees or back. The itching is driving me insane, and

nothing seems to help.

thanx,

Lilly

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

"I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it."

---Elwood P. Dowd

[Guest guest]

>They were little blisters that itched me to

>insanity.

Were they very tiny? What I have is a red spot on the back of my hand

and the top of my finger. It's very dry, cracked, and rough. Around the

edges I get tiny little " pimples " , about the size of a pinhead, but they

don't have pus in them. If I scratch, they bleed.

>Are you eating GF?

I've been GF for about 3 years, but I have to admit to having an

occasional beer (once a week). I guess that is going to have to stop.

My problem is that I rarely have digestive symptoms, and never from

beer. So I thought I was getting away with it...sigh.

thanx for your answer,

Lilly

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

" I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it. "

---Elwood P. Dowd

[Guest guest]

I had this on the palms of my hands for YEARS. With a strict GF diet--no more itching or blisters! I wasn't certain if it was related to the Celiac dermatitus because of the location (palms)--until it completely disappeared.LSBlondie@... wrote:

Lilly,

When I got it I got it the WORST on my hands and my feet. They were little blisters that itched me to insanity. Are you eating GF? I know there is something that the dermo can do to help. I've only had two cases of it in my life (pre-diagnosis) sO I never got any medication for it. I know your pain though...hope you feel better soon! -----Original Message-----From: fiestacranberry@...To: Sent: Tue, 17 May 2005 09:15:30 -0700Subject: [ ] dermatitis herpetiformis

does anyone on the list have or know about dermatitis herpetiformis?

I've developed a rash on my hands. The doctor said it was eczema, but

I'm beginning to wonder. I looked DM up, and it said it usually shows

up on the elbows, knees or back. The itching is driving me insane, and

nothing seems to help.

thanx,

Lilly

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

"I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it."

---Elwood P. Dowd

[Guest guest]

Dermatitis Herpetiformis always appears bilaterally. In other words, if it is on your right hand, it will also be on you left hand. Last I heard the only treatment for DH other than the GF diet is a prescription for Dapsone, which I understand is a difficult drug to take. A dermatologist should easily be able to make a diagnosis with a biopsy of the affected area. In fact, this is one of the easiest ways to get a diagnosis for CD.

Also note that damage to the intestine in CD is from the top down. This means that the upper intestine, where most vitamin E is absorbed, gets damaged first and repaired last; the lack of vitamine E absorption will result in a variety of skin problems.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of fiestacranberry@...Sent: Tuesday, May 17, 2005 9:16 AM Subject: [ ] dermatitis herpetiformisdoes anyone on the list have or know about dermatitis herpetiformis?I've developed a rash on my hands. The doctor said it was eczema, butI'm beginning to wonder. I looked DM up, and it said it usually showsup on the elbows, knees or back. The itching is driving me insane, andnothing seems to help.thanx,Lilly-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~"I wrestled with reality for 36 years, and I'm happy to say that Ifinally won out over it." ---Elwood P. Dowd

[Guest guest]

NO BEER. Beer contains gluten. Gluten causes damage to the intestines whether you have symptoms or not. Once a week is absolutely enough to cause symptoms, including DH if not the gastro symptoms.

If you must have beer, check out the GF beer made by Ramapo Brewery. You can call them and order it (see below). I am hoping that other breweries will be selling GF beer in the US soon. One in Australia said they are planning to do so this year.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

Ramapo Valley Brewery

122 Orange Aveue

Suffern, NY 10901

845-369-7827

www.ramapovalleybrewery.com

Makers of Gluten-free Honey Lager (beer!). Call Janet at Ramapo to order.

-----Original Message-----From: [mailto: ]On Behalf Of fiestacranberry@...Sent: Wednesday, May 18, 2005 8:32 AM Subject: [ ] Re: dermatitis herpetiformis>They were little blisters that itched me to >insanity. Were they very tiny? What I have is a red spot on the back of my handand the top of my finger. It's very dry, cracked, and rough. Around theedges I get tiny little "pimples", about the size of a pinhead, but theydon't have pus in them. If I scratch, they bleed. >Are you eating GF? I've been GF for about 3 years, but I have to admit to having anoccasional beer (once a week). I guess that is going to have to stop.My problem is that I rarely have digestive symptoms, and never frombeer. So I thought I was getting away with it...sigh.thanx for your answer,Lilly -~-~-~-~-~-~-~-~-~-~-~-~-~-~-~"I wrestled with reality for 36 years, and I'm happy to say that Ifinally won out over it." ---Elwood P. Dowd

[Guest guest]

thanx to all who responded to my questions about DH. Yes, my rash is

bilateral, affecting both hands and forearms. I haven't had any beer in

2 weeks, and I've also been using a new cortisone cream from the Dr.

that is helping somewhat. At least the itching is not as bad, anyway.

I made an appointment with my celiac Dr. for June 1, and I'm going to

ask him to do a biopsy.

It is encouraging to hear that it WILL go away if I am " good " . The

thing I don't understand is why it popped out now, at the age of 45?

Why not when I really WAS eating gluten? Even if it isn't DH, and just

eczema, my understanding is that eczema is a life long type of thing,

and I've never had anything like this before, altho I've always been an

" itchy " person with lots of allergies.

I've been doing a lot of reading on DH and eczema, and interestingly

enough, even in non-celiacs, eczema is often helped by going

gluten/dairy free. Also, a lot of vets are starting to think that

gluten may be the cause of many skin problems/allergies in dogs! I read

that gluten binds to the opium receptor sites in the brain, and makes

you feel good. That's why it's so hard to give it up. I know I went

thru massive withdrawal when I went GF 3 years ago. It's also been

implicated in schizophrenia. Makes you wonder what else it causes. I

wonder if anyone has thought to check all those poor autistic kids out

there for CD?

Lilly

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

" I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it. "

---Elwood P. Dowd

[Guest guest]

Check out the book Dangerous Grains. The Autism spectrum group in SF is

certainly aware of the gluten connection, although they are also dealing

with the mercury thought. And I've heard that DH can react to iodine as

well, if you are not completely gluten free.

Connie

-----Original Message-----

From: [mailto: ]

On Behalf Of fiestacranberry@...

Sent: Wednesday, May 25, 2005 9:15 AM

Subject: [ ] Re: dermatitis herpetiformis

thanx to all who responded to my questions about DH. Yes, my rash is

bilateral, affecting both hands and forearms. I haven't had any beer in

2 weeks, and I've also been using a new cortisone cream from the Dr.

that is helping somewhat. At least the itching is not as bad, anyway.

I made an appointment with my celiac Dr. for June 1, and I'm going to

ask him to do a biopsy.

It is encouraging to hear that it WILL go away if I am " good " . The

thing I don't understand is why it popped out now, at the age of 45?

Why not when I really WAS eating gluten? Even if it isn't DH, and just

eczema, my understanding is that eczema is a life long type of thing,

and I've never had anything like this before, altho I've always been an

" itchy " person with lots of allergies.

I've been doing a lot of reading on DH and eczema, and interestingly

enough, even in non-celiacs, eczema is often helped by going

gluten/dairy free. Also, a lot of vets are starting to think that

gluten may be the cause of many skin problems/allergies in dogs! I read

that gluten binds to the opium receptor sites in the brain, and makes

you feel good. That's why it's so hard to give it up. I know I went

thru massive withdrawal when I went GF 3 years ago. It's also been

implicated in schizophrenia. Makes you wonder what else it causes. I

wonder if anyone has thought to check all those poor autistic kids out

there for CD?

Lilly

-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~

" I wrestled with reality for 36 years, and I'm happy to say that I

finally won out over it. "

---Elwood P. Dowd

[Guest guest]

I wonder if you have been in contact with any gluten, say mixing dough, using Playdough, using a lotion, shampoo, or soap with gluten (vitamine e can be made from gluten), or preparing sandwiches? Mixing gluten-containing dough is not recommended at all for celiacs. Making sandwiches shouldn't have any effect on a celiac as long as you aren't licking the crumbs off your fingers, but if you had some sort of a cut on your hand where gluten could get into your system, I think there could be a possibility of a reaction. Note that doctors say that celiacs don't have a reaction to gluten unless it goes through your gut, but I have heard one person say that she had to change her shampoo because the wheat in it was causing a reaction on her scalp (she herself wasn't touching the shampoo, she goes to a salon weekly to get her hair done!). I have never heard of any research out there that has tested the response of celiacs to topical application of gluten or exposure via the blood contamination, so until I do I leave open the possibility that the doctors may be wrong about this issue.

Another thought is that I have know of celiacs that have a detox period where they have symptoms again after being GF for a while. Skin reactions of this sort are not uncommon in my experience.

Pam Newbury Santa Cruz Celiac Support Group 831-423-6904 pknewbury@...

-----Original Message-----From: [mailto: ]On Behalf Of fiestacranberry@...Sent: Wednesday, May 25, 2005 9:15 AM Subject: [ ] Re: dermatitis herpetiformisthanx to all who responded to my questions about DH. Yes, my rash isbilateral, affecting both hands and forearms. I haven't had any beer in2 weeks, and I've also been using a new cortisone cream from the Dr.that is helping somewhat. At least the itching is not as bad, anyway.I made an appointment with my celiac Dr. for June 1, and I'm going toask him to do a biopsy. It is encouraging to hear that it WILL go away if I am "good". Thething I don't understand is why it popped out now, at the age of 45?Why not when I really WAS eating gluten? Even if it isn't DH, and justeczema, my understanding is that eczema is a life long type of thing,and I've never had anything like this before, altho I've always been an"itchy" person with lots of allergies.I've been doing a lot of reading on DH and eczema, and interestinglyenough, even in non-celiacs, eczema is often helped by goinggluten/dairy free. Also, a lot of vets are starting to think thatgluten may be the cause of many skin problems/allergies in dogs! I readthat gluten binds to the opium receptor sites in the brain, and makesyou feel good. That's why it's so hard to give it up. I know I wentthru massive withdrawal when I went GF 3 years ago. It's also beenimplicated in schizophrenia. Makes you wonder what else it causes. Iwonder if anyone has thought to check all those poor autistic kids outthere for CD?Lilly-~-~-~-~-~-~-~-~-~-~-~-~-~-~-~"I wrestled with reality for 36 years, and I'm happy to say that Ifinally won out over it." ---Elwood P. Dowd

[Guest guest]

Jill, clanthompson.com has particularly good information on your situation.

The easiest way to locate the area in archives that deals with it is to google:

clanthompson dermatitis herpetiformis

That entry brings it right up.

Clanthompson provides pretty good information on gluten restricted disorders, including celiac disease and dermatitis herpetiformis. They have free information and they also have for-fee services.

Best wishes.

H.

In a message dated 10/6/06 12:46:53 PM, jillerscroft@... writes:

Hi,

My name is Jill and I live in Sunnyvale.  I have just been diagnosed with dermatitis herpetiformis, which is a skin disorder related to celiac.  I have suffered from it for years, and was misdiagnosed by doctors (they all thought it was eczema).  Autoimmune disorders run in my family though, I have a cousin with Lou Gherigs, aunt with lupus, and another aunt who was just diagnosed with celiac ...I myself have autoimmune hypothyroidism) 

 

My husband and I had tried for 3 years to get pregnant, but had several miscarriages.  When my aunt was diagnosed with celiac, she told me one of the symptoms was multiple miscarriages, so I began to look into it more thoroughly.  Well, last fall, I found out I was pregnant, and during that time my symptoms subsided, so I forgot about it.  In August I gave birth to a healthy boy, but 5 days afterwards, completely broke out in a itchy rash.  I went to the dermatologist and demanded to be tested, and sure enough, it was positive for DH. 

 

I have some questions, perhaps some of you can help me with. 

I am pretty sure, but since I have DH, does that mean I automatically have celiac?  Do I need further testing, or should I go on the diet?

 

Did anyone else get upset about going on this restrictive diet?  I am putting it off, because I can't imagine giving up everything I love.  Plus, I can't imagine going to parties, and family get togethers, only to stare and salivate over food I can't have.  With kids in the picture now too, the stress of being on a specialized diet scares me. 

 

Any encouragement you have would be great!

 

Jill