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Hi Listmembers,
In January I posted my frustrations to this list regarding the unwillingness
of my MD to screen me for Celiac and how to convince him to test.  I have
both GI symptoms and the unique rash.  So many of you responded and were so
supportive and I want to update those of you who asked for a follow-up.
I did get the blood test, but was eating gluten for only a day or two before
the test and it was negative.  My doc believes that the antibodies are
immediately in the blood system and never leave the blood even while going
gluten-free.  After months of getting nowhere with my doctor who refused to
refer me to any specialists, I made an appointment with a dermatologist as a
cash patient.
Today at the dermatologist, I was looked at and a few questions were asked
and was told it is very likely that I have DH.  I was very careful about my
approach and didn't give any clues to my knowledge of Celiac disease or DH
and wanted him to have an honest and unbiased look at me.  I basically told
him that through eliminating certain foods in my diet, I have noticed
improvement.  I also told him that there are other foods that I have not
eliminated, and I was not absolutely sure if dairy might be a problem, too.
My primary care MD insisted this was acne and has treated it as acne since
'96.  For anybody going through a similar situation, the dermatologist I saw
today told me that acne does not itch like I itch, and acne does not go into
the scalp area or onto the hands, legs, etc.
Insurance companies have ombudsmen that will hear complaints, and it was
suggested that I call my provider and report this.  I have a new doctor
appointment coming up and will tell him what is going on and hopefully get a
biopsy of the DH soon.  No sense going the cash route when I am paying for
insurance each month.  The Dermatologist told me to tell my new MD to give
me a referral to him for a biopsy.  So, this will involve some days of
ingesting gluten to produce a new crop of DH for biopsy.
My other option is to wait for a genetic test that is coming out soon and go
that route.  But things are moving in the right direction.  This listserv is
a great source of information and support and I have learned so much from
it.

Thanks all,
Loretta
California

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