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    Twenty people were kind enough to answer the survey's 7 questions.  Each
individual response is separated with a slash:
#1. HAS YOUR DERMATOLOGIST OR DOCTOR GIVEN YOU ANY INFO WE MIGHT NOT HAVE
HEARD?  [I was hoping for positive, helpful info, but not surprised that WE
are educating THEM!]  = "My dr. knows less about DH than we do, except that
he is fastidious about blood testing regularly & didn't think my case
warranted use of heavy meds." /  "My doc thought I had systemic herpes
and/or shingles."  /  "Dr. said it 'looked' like DH, did a biopsy which was
neg--finally got an intestinal biopsy from gastro Dr. & he gave me Dapsone
which eliminated blisters. Since, dermatologists who treat me for eczema
look glazed over when I mention celiac sprue or DH." /  "There are several
manufacturers of clobetasol [kloe-BAY-ta-sol] propionate, the best cream for
healing. Cormax by Oclassen comes in a vaseline base & seems to stay on
longer than those in white cream base." /  "Nothing. I seem to know more
than he does." /  "No. I never was formally diagnosed with DH. Had blisters
on feet and base of spine--Dr. thought was athlete's foot. [ed.-and
athlete's spine??] /  "Gluten has to be ingested to cause damage." /  "No, I
taught HIM some things! He still does not believe it's DH even after ALL the
proof! /  "That IgA [deposits] continue to circulate in your bloodstream
long after beginning a gluten free diet. Some people can never get rid of
the outbreaks by going GF." /  "No, he just sent me to a dietician." /
"Acupuncture has helped me." /  "Nope. Everything he knows, I've told him."
/  "No, I learn far more from the list than anything any dr. has ever
offered."  /  "I had DH and shingles.  First derm. said I had eczema.  After
another derm knew immediately was DH, 3 mo. later, I went back to the first
dr. and gave him several pages about DH from the internet.  He shoved them
back to me."  [6 had no response.]

#2. HOW LONG AFTER YOU WENT GLUTEN FREE DID YOUR SYPTOMS, IF SO, GO AWAY? =
Answers varied from several saying 2 to 3 weeks, to several saying it has
never totally cleared; some saying 3 mo., 6 mo., & 9 mo.; one "full 3 yrs.";
several 1 to 2 years.  Several said they have outbreaks if they don't take
their Dapsone, a couple on it for many years.  All trying to be GF.

#3. WHAT DO YOU USE FOR ITCHING RELIEF? [for other answers, see Cindy
Thompson's posting, 2-18] =  Several are on Dapsone /"Phosohex 3%
hexachloraphene wash, followed by lotion and emu oil to calm skin; also
sometimes apply raw honey as an antiseptic." /  "I went on Neurontin [Rx] &
Tylenol w/ codeine--nothing really worked." /  Three people used OTC Sarna
anti-itch lotion; one also Sarna w/ their Dapsone; one: "the over counter
worked as well as the Rx w/ 2% cortisone." /  several said Benedry; one:
"Benadry for itching, Atarax (hydroxizine) did nothing [Rx
antihistimine-sedative]" /  "There is no itching relief! "...if I keep my
paws off for about 30 min., it will quit-even slight touch will start itch
again." /  "[long time ago used] Calamine lotion." /  "OTC Cortisone cream."
/  "Tea tree oil." /  "When I feel the 'tingle' coming, I use Cormax
ointment to prevent a breakout or shorten the duration." /  "My DH doesn't
itch--it burns. I use ice." /  "Steroid lotion (Rx) and Pramosone." /  "I
find that even sun lotion helps."

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *