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                       One Celiac's Nightmare
                       ----------------------
                           by Kathy Davis

In the spring of 1994 I decided to lose weight and began the Weight
Watchers program.  I drastically changed my diet by reducing my
intake of fat and sugar.  I did not take vitamins as I could not find
any that did not upset my stomach.  The weight began to fall off at a
normal rate.

In the early summer I fell and broke my foot.  I fell a few more
times that summer.  I even consulted my internist about the falls.
He felt they were due to an inner ear problem.  By late fall, with
the weight still coming off, I began to notice some weakness in my
hands.  I saw a hand specialist who felt I had a nerve problem.  I
continued to have falls.

By early spring 1995, I had lost over 40 pounds, and I was working
out at Vic Tanny's.  My hands were very weak.  Then I had such a bad
fall, I ended up in the emergency room.  At this point, everyone was
looking for a "nerve problem".

Since late spring I have seen many doctors, neurologists, and
gastroenterologists.  I was told I had abnormal neurological exams
but all my tests were normal.  (I have had a BUNCH of tests!) I felt
as if I was getting worse.  I was weak.  I was having trouble walking
and performing daily tasks with my hands.  It made me very upset
because I am used to being active and independent.

Words cannot express the fear and frustration I felt during this
time, and still feel as I write this.  It's not enough to have celiac
disease and to have to fight to be heard in the medical community;
now I had another problem and I was hearing the same kinds of vague
"We don't know"s from doctors.  Fellow TCCSSG members suggested that
I wasn't getting proper nutrition on the Weight Watchers program.
They also suggested that I find a vitamin that I could tolerate.  I
did this and gradually I began to feel stronger.

Finally, I went to another neurologist for a second opinion.  After
reviewing my history, he asked, "You already have one rare disease;
could there be a connection?"  I cannot tell you the hours I spent
trying to find help.  Finally, I asked Jim Lyles to post a message to
the CELIAC e- mail list on the Internet.  This began to slowly get
some results.  Some of the responses were relevant to my problem,
some were not.  I was still feeling as if I was the only one in
charge of my care, and I am not a doctor!

I met Dr. Joseph Murray at the 1994 American Celiac Society
conference, and I learned from some of the Internet information that
he has done research on celiac disease and has treated celiacs with
neurological problems.  So my husband and I decided I should go to
Iowa and see Dr. Murray.  I am not recommending that everyone go to
Iowa.  This was a "last resort" type of decision, and it was the only
option we felt we had for my problem.

So far, we are guardedly optimistic.  We were extremely pleased with
the care we received in Iowa, and we also finally began to get some
answers.  It appears that while trying to get healthy by losing some
weight, I damaged my villi either by hidden glutens or preservatives,
and totally depleted my vitamin reserves.  So now I am on a strict
diet in which I try to be not only completely gluten-free, but also
preservative-free.  I feel I am slowly getting better on my
prescribed regimen.

So, what have I learned from this nightmare?:

  *  Maybe I really needed to look at my reasons for losing weight.
     If I had my option today of lowering my weight or walking, of
     course I would rather walk.

  *  Because I have celiac disease I am in charge of my medical care.
     I am glad that I knew of resources to help me get answers.
     During this past year I've asked my husband many times, "What if
     I didn't know what to question?  What if I just sat back and
     waited?"

  *  If you reduce calories, check with your doctor; you may need to
     take a vitamin supplement.  If so, find one your system can
     handle and take it as prescribed.

My thanks and gratitude go to all the members of TCCSSG that called,
sent cards, and expressed concern.  A huge thank you to Jim Lyles for
posting on the Internet, Toni Richardson for literally nourishing me
back to health with her food, Mary Guerriero and Marcia Campbell for
taking me to my many appointments, and to my husband for his love and
support in taking me to Iowa.