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Greetings,

I joked about having leprosy before being diagnosed with dermatitis
herpetiformis.  That turned out to be a close guess!  Of all things, I'm
taking a medication (Dapson) that was developed for leprosy!

Before I get to my questions, I'll give a little background.  This is my
first time to post after receiving this very helpful service for about
two months.  I got a new e-mail address just to handle all the messages.
 I hope my e-mail name, "itchnomore," someday comes true.  I was
diagnosed with DH in August, 2000.   Although I immediately went on a GF
diet and began taking Dapsone, I have never been completely free of
active lesions.   My outbreaks have lessened considerably, but it has
really been up and down.  Just when I think my lesions are almost all
healed, I get new lesions.  Many disappointments!  I started out on 25
mg of Dapsone, and soon went up to 200 mg per day.  When I've tried
going above that, I began feeling weak and nervous, so I'll stay with
200.

Much of my problem with outbreaks has been my fault.  It has taken me a
long time to realize how strict I must be with my diet.  I immediately
began avoiding all the obvious no-no's, but I assumed and overlooked a
lot of things, and I only recently began abstaining from unknown things,
like flavorings and colorings.  However, I'm wondering if other things
are triggering outbreaks, like stress/tension and maybe iodides.

My symptoms began in the summer of 1997, and I sought help from five
dermatologists, a nutritionist, and some other doctors before I finally
got a correct diagnosis in August, 2000.  Those three years of almost
daily suffering were pretty depressing at times.  Besides itching, at
times it was hurting and stinging, almost like bee stings.  So I feel
great compassion for all others who have this or CD.  Thankfully, I've
not noticed any problems with my digestive tract.  My initials are DH,
so I can say I'm DH with DH.

Compared to the amount of information about CD, I have not found a whole
lot of info about DH.  I'm aware of the main Web sites regarding CD and
DH, but more specific info on DH will be appreciated.

Here are my questions:

1.  Why do products for the skin that contain gluten have a bad effect?
The explanations I have read about gluten sensitivity describe how the
gluten enters the body through the intestine to cause an adverse
reaction.  Does gluten also enter through the skin?  And if so, does it
set off the same kind of chain reaction?

2.  So many products for the skin and hair (like hairspray) contain some
type of alcohol.  From what I have read, there is debate about whether
alcohol and vinegar made and distilled from grain still contain gluten.
But assuming they do, how do I find out which alcohols are made from
grain?  There are so many types of alcohol (with their different
prefixes).  Do we have to check with the manufacturer of every product?

3.  Following are some of the ointments, etc., that I have used in
trying to get some relief.  (The main relief for me generally comes from
puncturing the blisters and letting the water out.)  Can any of you tell
me which of these products are GF??

 Maximum Strength Lanacane, Bactine, Campho-phenique, Mentholatum, Vicks
Vaporub, Bengay, Sarna Anti-itch Lotion, and Cormax (a strong
prescription cortisone cream).  (Several of these have camphor and
menthol as the principal ingredients. The burning sensation of something
like Bengay helps to counteract the itching.)  And I've used various
cortisone creams and store brands of some of the above ointments.

4.  Do any of you recommend any lotions or salves that have worked well
for you to counteract itching and hurting and to promote healing of the
skin?

5.  I live in DeSoto TX, a suburb of Dallas.  Where is a support group
close by?  I plan to visit Cincinnati OH soon.  Who can I correspond
with there?

Thanks in advance for any help!

Don Hooser