<<Disclaimer: Verify this information before applying it to your situation.>>

No MD or  dermatoligists or other did not know anything about my DH. I finally eneded up seeing a Naturopath that did a salvia test. Confirmed I had Celiac Disease and started eaating gf right away. For the itching I took a few homeopathics, Rhus tox, Urtica Urns and both helped along with a Colonic Hydrotherapy once a week for 2 months.


  It took almost 9 months for my son to heal after being 100% gluten free.  We took no risks those first months and it was still a very long road.  I believe there was some good information from the University of Chicago website.  
 
DH can be diagnosed by a ANY dermatologist.  Skin biopsy needs to be done on blisters, which are usually scratched off before they erupt, but they can be raised for the procedure by applying a concentrated iodine solution.

Once the dx of DH is confirmed, referral is made to a gastroenterologist for GI biopsy is in order to assess extent of GI damage before the GF diet is initiated.  If there is no GI damage, great!...but the GF diet is still in order as treatment.


Find more info on DH at www.celiac.com
  Dapsone is a dangerous drug with a lot of side effects like raising my biliruben.
So I took more and more dapsone and got worse.  In August of 1996 there was an article
in Diabetes Forecast entitled "Wheat is Your Problem," by jean Guest who is a nurse for
Doctor Joseph Murray and he is the leading CD specialist in the USA.
Going g/f is the only treatment for DH or CD to ans your question.
 
I only had DH for about two months.  It was caused (before I knew about
celiac disease) by deciding that I might have more energy if I ate
 wheat
germ.  Within days I was sitting on the most miserable, itchy blisters
 I'd
ever had.  Poison ivy was nothing, in comparison.
  So

 of
the blisters  and the descriptions in various medical books left me
 without

]read the labels of your shmapoo, soap, make up etc.  Vit E is usually
 the 
culprit because it is made from wheat.  use only gf products

in the meantime, go to a health food store and get the homeopathic
 remedy 
RHUS TOX 30C for about $5.  2 pills every 2 hours will stop the
 reaction. 
This was recommended by my md

After 15 years of MDs not figuring out that I had DH, a naturopath had
 my 
blood tested.

9 weeks on the GF diet and I started to feel better.

Hydrocortisone helped some before diagnosis, and perhaps helps more
 since 
diagnosis.


As someone posted on the listserv, we can get flare-ups of the DH
 symptoms 
for a couple of years after the last exposure.




2 - I went to a MD.


4 - I was initially misdiagnosed by a public health
nurse as having scabies so I underwent scabies
treatment.  That didn't work and she sent me to a
dermatologist who suspected what it was and was
diagnosed via biopsy.

5 - This was 11 years ago.  There weren't a lot of
online resources available. 

6 - I take 50 mg Dapsone daily internally.  It is
awesome.  

7 - I tried going on a GF diet.  I spent over a year
just trying that method only and I'd get almost
cleared up and accidentally eat something and it was
like I was starting all over again.  When I had good
health insurance my doctor and I worked out the right
dosage for Dapsone.  It cleared up very quickly after
that.

My husband was diagnosed with celiac disease before he even developed DH.  His is a very rare case.  He began having rashes a few years after going gluten-free and it was at this point that we learned about what DH was, although we were sure he couldn't have it since he was on the GF diet.  Fortunately, we live in NC and one of the two main (NIH-funded) DH researchers works out of Duke University Med Ctr.  
 
The treatment that has worked for my husband is the daily taking of Dapsone.  He takes it in pill form, once a day.  It is an antibiotic originally used to treat leprosy.  It has a number of side effects (decrease in bone density, etc), so we're not thrilled that he's on it, but the alternative is definitely worse.  In terms of a topical treatment, the only thing that helped somewhat (i.e., lessened the rash, but did not eradicate it) was the use of a steroid ointment, Clobetesol Propionate.

If you have DH you have Celiac Disease. You can't have DH and not have
CD.
If you have questions you can contact the expert on DH, Dr. Zone
 through
the link below

http://uuhsc.utah.edu/derm/bios/facultybios/zone.htm

Q. Did they give you the Celiac blood test to find out if you had Celiac Disease or if it was related?
A. I was diagnosed by a dermatologist who was not aware of the connection.  I learned later that anyone who has DH has celiac and that I should have had more diagnostic tests before going on Dapsone and going gluten free.
 
Q. Was it a MD or a ND or alternative that was able to treat you?
A.  A dermatologist.


Q. What treatments  did you try before going to see a medical or alternative physician?
A.  None.  I went immediately to a dermatologist with the first symptoms, which appeared abruptly and severely.


Q. Did drugs help you, were they topical or internal?
A. Dapsone taken internally is the only drug that offered relief.

Q. How long did your symptoms last before you got relief?
A. It took me 8 months to get a diagnosis.  Once diagnosed, I got initial relief from the symptoms within two days of starting Dapsone.  All symptoms ceased two years after starting Dapsone and going gf.

 I would like to know how you were treated for DH?
>
>    Did they give you the Celiac blood test to find out if you had Celiac Disease or if it was related?  I was given a skin biopsy (from a spot near one of the bumps I'd scratched!) by my dermatologist.

>    Was it a MD or a ND or alternative that was able to treat you? I went to Beth Israel Deaconess' Director of the Celiac Center MD and his Nutritionist.  The doctor confirmed my diagnosis after an endoscopy, and the latter helped with diet recommendations.

>    Did you have to have a colonic hydrotherapy to help get the gluten out of the gut? No - I had started to learn about the diet between the dermatologist and the Celiac doc's visits - and was on the mend.

>    What treatments  did you try before going to see a medical or alternative physician?  I'd been diagnosed years before with IBS and had been on a LOT of Metamucil - but no DH symptoms of note until I had really bad outbreaks on my forearms such that I went to the dermatologist without an appointment because I couldn't stand it another minute!

>    Did any web sites or books help you and what were they?  I googled DH and celiac disease and got help from all. www.clanthompson.com is one of my favorites - I buy their downloadable updates.  Books include Bette Hagman's cookbooks, "Against the Grain;" and the listserve support and info group and my local email support group are terrific ongoing support. 

>    Did drugs help you, were they topical or internal?  Somewhat - topical - Halobetasol Propionate .05% is the generic cream.  Sometimes it's helpful; sometimes not.  Sometimes I found ICE - just placing one of those blue liquid ice packs on my arm - or moving one of those ice "wands" over the itching - helped even more.  Sometimes I tried an antihistamine plus the rest - sometimes it worked; sometimes not.

>    How long did your symptoms last before you got relief?  Initially it could be a couple of weeks of really horrible itching.  Now (5 years later), I only have rare accidental ingestions, the reactions are less severe, and they don't last as long.
 

I was diagnosed almost four years ago by my regular doctor, an MD,
 sending me in for a blood test. I had the DH rash for about 8 years
 previously, but he couldn't figure out what it was. The reason he sent me for
 the test was that after surgery I had been having severe acid reflux
 and bloating problems. The blood test had three separate parts to it: One
 was negative, one was mild positive, and the other was strong positive
 for celiac disease. He recommended, based on the results, to go on the
 diet. I did, with immediate results: No more migraines, reduced
 bloating, reduced acid reflux. I haven't taken drugs for the DH; I just stay
 away from gluten, and now am nearly free from bad symptoms. I know if I
 have gotten gluten because I get the rash, headache, and digestive
 upsets again.


JAH
www.glutenfreeeugene.org


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