Dermatitis Herpetiformis

[Gary Berger]

I was diagnosed with celiac a couple of years ago.  Fortunately, my symptoms relatively minor and less severe than most.  However, I do need to closely monitor my gluten intake and minimize it as much as possible.  My purpose for posting today, has nothing to do with my celiac.  Very recently my 32 yr old daughter was diagnosed with "Dermatitis Herpetiformis".  The way my daughter explained it to me was like this ...  "Dermatitis Herpetiformis" is a chronic rash that is associated with people who have a severe form of Celiac Disease.  Her doctor took two skin biopsies... one off her right upper arm near her shoulder and the other on her right elbow. The results of those biopsies should be in next week.  She also had four blood tests done to confirm the celiac diagnosis.  One of the skin biopsies will confirm the Dermatitis Herpetiformis diagnosis.  The other biopsy is a direct immunofluorescence test of the skin.

 

Her doctor sent home with Prednisone (a 15 day treatment which is set up just like a Z-pack), an ointment called Triamcinolone to apply to the skin twice daily, and Hydroxyzine HCL 50mg tablets (1 before bed each night) to treat her itching symptoms as well as to help her sleep since she hasn't been sleeping well lately.  If confirmed by both skin tests that she has Dermatitis Herpetiformis, the doctor informed her that he will begin chemotherapy right away to clear up her rash due to it's severity.  The Prednisone and ointment should help stop the spread of the rash any further and even clear up some of it now, but in order to get her skin back to normal she will have to go through the chemotherapy treatments.

 

Back two years ago I did a lot of research on celiac to educate myself about the disease, however I don't remember reading anything about this Dermatitis Herpetiformis.  So my questions are:

 

• Has anyone heard about this skin disorder and if you have what can you tell me about it?
• This chemotherapy that my daughter's doctor has mentioned to her ... can anyone elaborate on that kind of treatment?

 
Thanks in advance for any information you can offer,
Gary (a concerned father)
 

[Kelly Simpson]

Gary,

My now 12 year old daughter has both celiac and dermatitis herpetiformis. The DH actually led to the diagnosis of celiac disease. We went through almost 2 years of trying to clear up what the dermatologists thought was eczema, to then find out that gluten was the source of her trouble. It was very severe - on her knees, elbows and buttock area - blistered, bloody and terribly itchy. The cream that we used that worked was called Dapsone (not sure if I spelled this right). The cream, along with a gluten free diet, took about 9 months to clear up completely. It sounds like your daughter has been prescribed a very harsh prescription and probably unnecessary treatments. I would ask her to wait for a possible celiac diagnosis, then eliminate the gluten and use the Dapsone cream to alleviate symptoms until the GF diet clears it up. If is is the gluten that is the problem, then I doubt the "chemicals" will do much in the long run and may cause more damage than needed.

Please feel free to call me if you would like to discuss this further. I can be reached at 513-646-8980.

Kelly

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[paws...@yahoo.com]

Gary...I agree with Kelly. I find my skin breakouts are worse now at this time of year too. Less sun (I'm guessing) and look out if I slip up with ingesting gluten.

Sensitive to lots of skin products..soaps etc..

I'd try going the less evasive way first. Eliminate all Gluten..and yes the Dap. Cream.. It may surprise you.

It is a one step at a time process. Really no "instant" fixes.

---

From: "Kelly Simpson" <Kel...@cinci.rr.com>

Sender: cinci...@googlegroups.com

Date: Fri, 25 Nov 2011 23:11:46 -0500

To: <cinci...@googlegroups.com>

ReplyTo: cinci...@googlegroups.com

Subject: Re: [cinciceliac] Dermatitis Herpetiformis

[Gary Berger]

Thanks for the information Kelly,
 
My daughter's case was similar to your daughter's in the DH led to her diagnosis of the celiac disease.  Now, in my daughter's case ... the diagnosis is so recent that it has not yet been verified ... but that should happen next week.  My daughter was in my wedding last month and her skin condition was so bad, she nearly dropped out of the ceremony.  The skin liaisons were so bad that a lot of people mistook them for bruising ... mosly on her back.  Right now I am helping her do some research and compile a list of questions for her doctor.  Of course I'm also counseling her on her diet and advising her on where she can purchase gluten-free foods.
 
Gary
 
 

---

From: Kel...@cinci.rr.com

To: cinci...@googlegroups.com
Subject: Re: [cinciceliac] Dermatitis Herpetiformis

Date: Fri, 25 Nov 2011 23:11:46 -0500

[Gary Berger]

Pawsandme,
Since my daughter was only recently diagnosed with celiac, she hasn't been on a gluten-free diet so I'm sure that played havoc with her system.  The interesting thing is when I was diagnosed with celiac two years ago, my doctor wrote out a prescription for the blood test required to test for celiac and I gave it to both my son and my daughter and suggested they have it done.  Unfortunately when both of them gave these prescriptions to their doctosr they were told that their insurance would not pay for it.  In my daughter's case, she opted not to get the test done.  I'll have to check to see what my son's decision was but based on my duaughter's recent discovery, if he hasn't had the test done I plan on strongly encouraging him to do so.
Thanks for the info & suggestions!
Gary
 

---

Subject: Re: [cinciceliac] Dermatitis Herpetiformis

To: cinci...@googlegroups.com
From: paws...@yahoo.com
Date: Sat, 26 Nov 2011 14:20:33 +0000

[Christine Cengel]

I have the rash from Hades.  For several years I have taken Cyclosporine MOD, 2 100 mg tablets each day. Works like a champ. Now 'they say' my kidneys might be bothered from the drug.  So dr Lower will run a tider level  blood test next week.  Hate to mess with a perfect fix but, no choice.   Chris

God bless..

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[du...@fuse.net]

Gary, Our 8 year old son was just recently diagnosed with DH as well (just around Halloween). We are very fortunate that it was diagnosed quickly within ~ 3 months from when the rash began and we've been pleasantly surprised at how quickly the skin lesions/blisters have started healing now that he is on a GF diet. His blisters were severe on his face and extremely severe on the buttocks and we went through a similar diagnosis process - biopsies of the skin (both affected and healthy areas), blood-work and an endoscopy.

The only medication that came up between all the conversations with the pediatrician, dermatologist and Gastroenterologist at Children's Hospital was Dapsone. I'm surprised by the comment regarding chemotherapy to clear up your daughter's skin. That didn't come up in any of the conversations we had with our doctors.

Karla

---- Gary Berger <londo...@hotmail.com> wrote:
>
> Thanks for the information Kelly,
>
> My daughter's case was similar to your daughter's in the DH led to her diagnosis of the celiac disease. Now, in my daughter's case ... the diagnosis is so recent that it has not yet been verified ... but that should happen next week. My daughter was in my wedding last month and her skin condition was so bad, she nearly dropped out of the ceremony. The skin liaisons were so bad that a lot of people mistook them for bruising ... mosly on her back. Right now I am helping her do some research and compile a list of questions for her doctor. Of course I'm also counseling her on her diet and advising her on where she can purchase gluten-free foods.
>
> Gary
>
>
>
>
>

> From: Kel...@cinci.rr.com
> To: cinci...@googlegroups.com
> Subject: Re: [cinciceliac] Dermatitis Herpetiformis
> Date: Fri, 25 Nov 2011 23:11:46 -0500
>
>
>
>
>

> Gary,
> My now 12 year old daughter has both celiac and dermatitis herpetiformis. The DH actually led to the diagnosis of celiac disease. We went through almost 2 years of trying to clear up what the dermatologists thought was eczema, to then find out that gluten was the source of her trouble. It was very severe - on her knees, elbows and buttock area - blistered, bloody and terribly itchy. The cream that we used that worked was called Dapsone (not sure if I spelled this right). The cream, along with a gluten free diet, took about 9 months to clear up completely. It sounds like your daughter has been prescribed a very harsh prescription and probably unnecessary treatments. I would ask her to wait for a possible celiac diagnosis, then eliminate the gluten and use the Dapsone cream to alleviate symptoms until the GF diet clears it up. If is is the gluten that is the problem, then I doubt the "chemicals" will do much in the long run and may cause more damage than needed.
> Please feel free to call me if you would like to discuss this further. I can be reached at 513-646-8980.
> Kelly
>
> ----- Original Message -----
> From: Gary Berger
> To: cinci...@googlegroups.com
> Sent: Friday, November 25, 2011 9:09 PM
> Subject: [cinciceliac] Dermatitis Herpetiformis
>
>
>

[Rosemary Welz]

Dermatitis herpetiformis is the only symptom I've ever had of my celiac disease.  I was diagnosed about 4-1/2 years ago.  The dermatitis was confirmed by a skin biopsy.  I currently see Dr. Diya Mutasim at UC Physicians for the dermatitis.  I also take dapsone to control the rash.  No one every spoke to me about using chemo to treat it.

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

From: Gary Berger

To: cinci...@googlegroups.com

Sent: Friday, November 25, 2011 9:09 PM

Subject: [cinciceliac] Dermatitis Herpetiformis

--

[John Libonati]

And be sure to look for nutritional deficiencies. Removing the trigger (gluten) is the first step. Identifying and correcting nutrient deficiencies is absolutely necessary, will speed up the recovery and lead to lasting good health.

 
John Libonati

 

GlutenFreeWorks.com
http://www.glutenfreeworks.com
Tel. 215-591-4565

 

"Recognizing Celiac Disease"
The Complete Guide to Recognizing, Diagnosing and Managing Celiac Disease
http://www.recognizingceliacdisease.com
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