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Many of you asked me to elaborate on the details of my recent biopsy and test
results.     I will try to explain.


I've been getting the rash on my lower back for 17 years.

10 years ago, a Dermatologist biopsied it and told me that I had Dermatitis
Herpetiformis, and that I should mention it to my Primary Doctor (who was a
Gastrointerologist) because it also meant that I had Celiac Disease.

I did tell my primary, but he didn't seem concerned.  I was going through
several surgeries at the time most related to my digestive symptoms.  I have
a birth defect in my Pancreas which blocks the digestive enzymes from being
released into my system.  My pancreas still makes the enzymes, but they are
trapped, so I have what is known as Autodigestion, (the pancreas eats away at
itself).  I had major surgery to try to repair it, but it didn't work.  Three
months previous to that I had a Sub-Total Colectomy due to severe
Diverticulititis.  Six months previous to that I had a Total Hysterectomy due
to lower abdominal pain.  I had also been diagnosed with ITP several years
before and had mentioned this before my first surgery.  They sent me to a
Hematologist the day before my surgery, and he said if that is what I had
there was no evidence of it.  The next day after my surgery, I almost died
from internal hemorrhaging.  I needed 6 units of blood.

After all of this, 6 years later, I was still suffering so badly with
digestive symptoms, that I began researching the diagnosis that I had been
given in '92 of DH.  I knew nothing about Celiac Disease or a Gluten-Free
diet.  When I saw the obvious connection and read the symptoms, I went back
to my primary and asked him to pull up that pathology report from the
Dermatologist and review it.  I came back a week later, and he said "You have
Celiac Disease.  Don't eat wheat anymore."

Now, I still didn't know much about Celiac Disease, so I said ok....great!  A
few months later I wasn't any better,  and we realized that it was more than
just "wheat".  I really studied the diet and became totally gluten-free.  A
few months later I still wasn't any better, and he began talking about
"Refractory Sprue", so he decided to do the intestinal biopsy.  It came out
negative.  He told me that just meant that I was adhering to the diet.

He also ordered the HLA Type test.  I "think" the test was negative for the
gene, but I'm not 100% sure.  He told me to remain Gluten-Free, and I have
since 1997.  My rashes began to be more and more infrequent and covered a
smaller area of skin when I did get it.  From what I understand, the IgA
deposits can remain for years after being Gluten-Free.

Now to recent events:  Due to my husband's job change we ended up with Kaiser
insurance.  No choice...That's all they offer.  Ok.  Right from the very
beginning, the doctors there decided that they didn't believe the diagnosis.
I had my records transferred from my previous primary and from the
Dermatologist who diagnosed me, who has since retired.  The GI doc at Kaiser
ordered the TtG test.  It came back negative.  I told them that is what was
to be expected as I truly was Gluten-free.

All of sudden, I get this letter from Kaiser saying that the GI doctors
refuse to see me anymore for anything because they don't believe my previous
diagnosis's.  This has turned into a major battle as they claim there is no
record of the biopsy from the retired doctor.  They tell me they won't see me
until "You bring in the original pathology slides from that diagnosis."  The
lady at the office where I tried to obtain this piece of evidence laughed out
loud at me.

So I figured the best way to settle this whole thing was for them to repeat
the biopsy when I broke out again.  After almost a year of never managing to
break out at the appropriate time....(my local Northern Ca. Kaiser's
Dermatology dept. is only open for a few hours on Tues. and Thurs.) I finally
got in and had to insist that they repeat the diagnosis.  He kept insisting
that he could tell it was Herpes just by looking at it and that the next time
I broke out he would just give me some anti-viral medication and if it went
away then we would "know" that's what it was!

I stood up for myself and insisted that he was to perform this biopsy.  I had
brought with me some printed material from the internet explaining the test
and the way it was to be done.  He told me that he had never seen DH or
tested for it.  He didn't know how to do it and besides that he didn't even
think that test could be done at Kaiser.  He left the room and my daughter
(my witness) and I both heard the conversation that he was having with the
nurse.   She explained how to do it and that it was to be sent to a lab in
Houston.

This is the lab.   The University of Texas-Houston Health Science Center.
Medical school Department of Dermatology, Laboratory of Immunopathology.
Kaiser also performed a biopsy to be sent to their lab for Herpes.  It was
negative!

They told me it would take 30 days to get the results from Houston. I did get
Kaiser's lab report back after 2 weeks.  After 60 days, and several visits,
messages, and phone calls, Kaiser called and said, " OK we have your
results...I'll mail them to you.  I thought to ask her which lab it came from
and she admitted she would have been sending the same Kaiser report that I
had already received.

 I finally called the doctor and left a message that I wanted someone to call
me and give me the name, address, and phone number of the lab in Houston, so
that I could call myself and ask if they even received the specimen!  Three
hours later the nurse called me and told me that my Fungal test was
negative....WHAT?  So, she says oh I'm sorry, I'm reading this wrong.  Your
DH Test was negative."  I requested that  she send me the report in the mail.
 She said they don't usually do that, but she would.  I got it today.  Well,
I got a copy of a fax...handwritten from the lab in Houston that says,
"Negative for Dermatitis Herpetiformis" and  "no specific deposits including
IgA."  The diagnosis given was SubCorneal Intraepidermal Pustular Dermatosis.
 I did find a definition:  a chronic, recurrent, benign, blistering rash of
unknown etiology.

So this is where I am.  Totally confused.  I feel like I should be the poster
child for why we need an official diagnosis before going gluten-free.  This
is a nightmare.  I have also been recently diagnosed with Fibromyalgia/MPS,
and it seems that IBS goes along with that.  This really needs to be
addressed....I've even filed a grievance with Kaiser because the GI docs
refuse to see me...EVEN THOUGH I have other digestive problems as well.  I
haven't seen a GI doc in almost a year!  Not that I haven't tried.  I am so
frustrated.

On top of that I got so emotional about the prospects of being able to eat
other foods again, that this evening I ate a fast food meal--full of gluten.
Please don't berate me...I'm doing enough of that myself.....

Cat