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From:
Judy Tillinger <[log in to unmask]>
Date:
Wed, 4 Aug 1999 15:26:10 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

I was profoundly disturbed by  the post about lost friendships and
quality of life which was addressed especially to new celiacs and seemed
likely to frighten rather than enlighten.

For some of is it isn't quite that awful. I promise.

I was biopsy-diagnosed almost ten years ago and while there's been a
good deal of frustration there's also been a greater deal of satisfaction
in taking control of my health. When I was diagnosed my doctor handed me
a yellowing sheet listing products that were gf. It was dated seven years
earlier. I wasn't on line nor aware of websites and listserves. Bette
Hagman's first book was my only resource and became my bible. After being
in the process of dyingof malnutrition, eliminating gluten seemed a
pretty easy tradeoff.

It wasn't easy. It was frustrating and annoying. Often, still is. I went
to a couple of support group meetings and was alarmed to learn that some
folks had reactions to their soaps and shampoos. My sensitivity didn't
seem that extreme so I tempered that information based on my own
experience (an avoided meetings).  I took what I could use from what was
out there. I sought out new products, bought a bread maker, found Jax
Lowell's book, talked to people, wrote a couple of articles for the food
section of the paper I work at.

I bored everyone I knew every time I found a new product. I was
constantly in the hunt. I asked questions every time I ate in a
restaurant, read every label on every article I purchased. I was all
about celiac. And eventually it became second nature. I still do all the
stuff: check labels, ask questions, look for new products. But it isnt
the focus of my life. Celiac is something I have, it isn't who I am.

Ten years ago there was almost zero awareness, few products, fewer
books. Rice cakes were the only 'bread' I could count on. Today, health
food stores have entire sections devoted to gf products and resources
online are amazing -- and they deliver! What I want to make clear is:
There's help out here, more every day. Don't give up on being GF, most
especially if you've you've been tested and you KNOW you're celiac.

judy in nyc

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