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

I was diagnosed with Dermatitis Herpetiformis back in 1993.  I had been
getting the rash on my lumbosacral region (lower back) for 16 years.  It was
diagnosed by biopsy of the affected skin. (DIF).  The dermatologist said I
should make sure my primary doctor knew the results, because it also meant
that I had Celiac Disease.  So, I told my doctor, but he just blew it off.
Neither doctor told me to eat gluten-free.

After several years suffering with abdominal problems and surgeries, I
insisted that my primary look again at that biopsy report in 1997.  He did,
and that time proclaimed me a Celiac patient.  He told me to eat a
gluten-free diet.  After being on the diet for 8 months, I was still having
problems, so he decided to do the intestinal biopsy and blood tests, which of
course came back negative, because I was and have been totally compliant with
the diet.  He said it didn't matter because the DH diagnosis was enough to go
on.

Now I have new doctors (Kaiser), and they are questioning the diagnosis.  The
dermatologist who originally diagnosed me has since retired and there seems
to be some sort of problem getting the records.   Today, I went to a new
Dermatologist and requested a new biopsy of the rash on my back to clear up
this confusion (the doctor's that is), and he asked me if I've had any recent
blood tests.  I have and they all showed normal.  I say, all that proves is
that I am compliant with the diet.

Since I have no desire to go through a Gluten challenge, just to appease the
doctors, I feel that the skin biopsy is the way to go at this point.  Believe
it or not, the dermatologist said that it sounded to him like I had Herpes
and he said just wait for it to break out again and then we'll give you some
Anti-Viral medication.  If it goes away then we'll know that is what it is.

I said that was about the most round-about way of diagnosing something that I
ever heard of, and insisted that the next time I break out, he must do a
biopsy.

Here's my problem that I hope some of you can respond to.  Everytime I break
out, I also get sciatica pain down my legs.  I think that it is because the
rash breaks out right over these nerve bundles on my lower back.

Has anyone who has DH, ever had this kind of experience, especially if you
break out in the lumbosacral region?

Thanks, in advance....I have been reading from this list for the last three
years.  This is the first time I've actually posted.  I've always found in
this group, the answers I need.

Cat