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Listservice folks - this is going to be LONG.  Since it's been a long
time since I have posted anything, maybe we can count it as a year's
worth of stuff at one time?
                                             ---------------------
I think the last time I sent a posting to the listservice was about a
year ago.  There have been two computer crashes which lost all my e-mail
& listservice stuff, plus lots of time away from the computer since then.
 Anyway, at that time there had been quite a bit of discussion on the
list re/the value of biopsies for those of us who had not had a confirmed
diagnosis of CD.

I sent in a list of the reasons why I wanted a diagnosis,(which I have
long since lost due to the computer god who ate it)  and I think that my
last posting was just before Thanksgiving, which was the day I chose to
begin my (much feared) gluten challenge.

May I digress with a brief history here for the benefit of any other
undiagnosed
folks - just so you'll know how this all came about:
     I had more & more digestive problems, ending up w/several years of
          uncontrollable diarrhea & gas & cramping
     Arthritis & allergies
     Bleeding gums, bleeding under the skin, mouth ulcers, mental
          confusion, exhaustion
     Development of weird, agonizingly itchy rash on my neck that was
          spreading
     Neuropathy of feet and legs
     Anemia
     Etc.
I was sick, I was miserable, my HMO doctor was virtually no help, and so
I researched & researched to try to find some answers.  Step by step my
research led me to CD.  My doctor laughed off the idea, but within 36 to
48 hours after I went gluten free, my digestive problems were better.  I
finally got any appointment with an HMO-approved gastroenterologist, who
was downright insulting to me, and told me that if I hadn't had an abrupt
and major weight loss, it was impossible for me to have CD because that
was the only sympton he would accept.

I was lucky enough to find the Celiac Disease Foundation.  I felt like
they practically saved my life.  E laine Monarch recommended several
specialists, but I couldn't go to them
through my HMO & couldn't afford them without the insurance help.  So I
simply stayed GF for quite a few years, and continued to get healthier.

Finally, when my son was an adult and I no longer needed to be
responsible for his medical insurance, I could afford to switch to a
preferred provider plan.  I found an internist that I really respect and
who didn't act like she thought I was crazy, told her that I wanted to
find out once & for all whether I am a celiac, & she referred me to a
wonderful, supportive GI specialist, who had been one of the doctors
recommended to me years before by Elaine.

Next was getting up the nerve to eat gluten, as I was really afraid of
getting sick again.
But I started easy (thanks to the warnings from some of the great people
on the listservice), and had the most enjoyable Thanksgiving dinner I had
had in years.  The next day I cramped up and had to stay near the
bathroom all day.  I was crying and wondering why I couldn't at least
have had a few days to enjoy some gluten before the effects hit.  But I
knew I had to keep eating the stuff for long enough to damage my gut &
show up on the biopsy.  Much to my amazement, I felt fine the next day,
and the next, and the next.
Over the two or three months before the biopsy was scheduled, I only had
a couple of bouts, which made me wonder if it was just my system being
touchy about something.  Could I actually be eating some gluten regularly
and not getting sick?  The doctor wanted me to have a good long time to
create damage, so the biopsy would be as close to definite as possible.

The big day came.  I had heard a few horror stories about the procedure
and was definitely not looking forward to it.  But either it has been
refined over the past few years, or Dr. Glen Robertson is an expert,
because I never experienced a moment's discomfort.

And, folks, the biopsy was negative!

Of course, the question is - what the heck caused the major and miserable
malabsorption symptoms that I had for years?  I have no idea and there's
no way to find out now.  I hope it never happens again, but I'm thankful
for the gluten-free diet that put me back on the road to recovery.  And
I'm thankful for friends I have met and lessons I have learned:
    Yes - a clear diagnosis is necessary.  I don't regret my "celiac"
years, but if I had had a diagnosis when I needed it, we might have found
the real problem and dealt with it, and there's months and years of misery
I didn't have to spend while trying to find answers.
    There's a lot of wonderful things to eat, many of which I wouldn't
have found or invented if I hadn't been spurred by the GF life style.
    I can take control of my life and my health - *I am responsible for
me.*  And I'm a lot stronger than I thought I was.
    And I know which friends and relatives love me enough to feed me a
GF meal! Ha!

Now I have spent almost a year supposedly eating "normally" again, and I
notice that the majority of my meals are still GF.  And I still carry a
magnifying glass in my purse and check labels.  Although life is easier,
it will never be quite the same again.  And that's good, I think.

Well, that's the story. CDF and this Listservice are wonderful resources.
 Keep helping each other.

Good wishes to all - Nancy Lilly

"Life is 10% of what happens to me and 90% of how I react to it."