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Aloha,
 
I posted here about a month ago about my DH and got so much support and
helpful information ... I really appreciate you all!
 
I am still in limbo regarding my diagnosis -- the dermatologist gave me a
skin biopsy (negative), but not the immunoflorescense one(!) -- he doesn't
believe I have it, but doesn't give me any other diagnosis for my unusual
constellation of pimply sores and interminable (horrific!) itching.  I have
asked to see another dermatologist -- but since I've been on the gluten-free
diet for almost two months my sores are healing and I haven't seen any new
ones developing (although I still ITCH like crazy!)
 
Meanwhile, Hawai'i is really prooving to truly be the most isolated land mass
in the world (in more ways than one).  This is my home, but I'm feeling
really dispirited in researching this condition.  I've phoned every private
and public medical referral service/organization, the university medical
school, and have even talked with several dermatologists.  So far I've heard
of two other patients being treated for DH (dapsone only; the doctors seem to
think the g-f diet isn't really possible -- or even necessary); the state
nutritionist had one request for g-f information in the past six years.  No
one has heard of any celiac/DH/gluten-free support group here -- not even the
CDF or CSA.
 
I think my next step is to announce the formation of such a group!  I've
written a piece for a local paper and plan to notify as many medical
information groups here as possible.  Can anyone who has done this kind of
organizing offer any suggestions?  Would this be something that could be done
with one of the national celiac/DH organizations?
 
Any ideas are most welcome!
 
 
Sus Shawhan         \      Kulia i ka lokahi i ke ola.
Honolulu, Hawai'i    \        Strive for harmony in life.