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Subject:
From:
Janice Palmer <[log in to unmask]>
Reply To:
Janice Palmer <[log in to unmask]>
Date:
Tue, 28 Jan 2003 14:25:02 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thank you to everyone who responded (50+) for all your kind comments,
suggestions and advice about "being paranoid".

I want to say that my husband is really not a creep. He tries very hard to
be understanding. I am as much at fault for hiding my symptoms, not wanting
to be seen as a whiner and complainer. I'm one of those "fine thank you"
people. How is he to know how awful I feel if I don't say so. This is more
than a "quest for the perfect poop", pardon the expression. A gluten
reaction takes over my whole body, brain included. Kind of like the rat
poison someone mentioned.

Many posters offered suggestions for travelling. Seems best to go by car
with a cooler full of finger food, and any toasters, cutting boards etc you
feel comfortable taking. Overwhelmingly, it seems we must take our own food
with us, and research our destination for food sources before we go.

Here are some excerpts from the many responders:

- Not to be critical, but if you are getting sick every 2 or 3 weeks, maybe
you aren't paranoid enough.
- Paranoid?? Poor choice of expression. Vigilant is the word - keep it up
it's the only way.
- People don't realize how little gluten it takes and what a long period of
suffering there is for us when we mess up. I am as cautious as you are--it
is the only way I can be well.
- If anyone, even a small child touches a hot stove and it burns their
hand, they might do it again a few times, but eventually they will stop
touching the stove if they are "normal". In fact, a normal person may even
be a little skittish around stoves for a while, wouldn't they?  Isn't this
simply self-preservation at work?  I think it is.  No normal person wants
to be sick and most will go to any lengths to avoid it, that's all you are
doing as far as I can see trying to not get sick!  So I don't see how
anyone could blame you for how you are feeling about eating out or on the
road, etc.
- I am forever wiping, cleaning and asking did you touch this with gluten
on your hands or did you use my pans for your grilled cheese sandwich??  My
grandaughter and daughter are living with me and I have the same problem.
Both of them are gluten eaters and I of course am not. SSSOOO I get
contaminated  and it is a vicious cycle.  Someone that doesn't have gluten
problems cannot begin to understand what we go thru.  We have designated
area's for their bread cookies, etc,. but it is impossible for the two
(gluten user's and non) to live in the same household without problems.
- I hate it when I get sick and know how you feel.
- There is nothing as debilitating as the after-effects of a gluten
accident. People who don't have the problem can't understand it.
- I've had fairly frequent episodes of relapse, too, from other food
sensitivities more often than gluten, and I can appreciate your
frustration.
- I am always getting "attacks" from eating out and it takes a week to get
back to myself. I can't live in a vacuum. I tried that and it didn't work,
I became isolated and alone. ;-( I take the good with the bad these days.
- A simple pleasure like joining together and sharing a meal is like
Russian roulette.
- We need food to survive but it more than that it is a cultural thing, its
the one thing that joins us all together as a human race. With CD it changes
everything, travel, being invited out to dinner to a friends place or a
restaurant, or even camping.
- My aunt suggested I get a bubble suit and wear it so I would no longer
come in contact with gluten.  Of course she was kidding but, it has crossed
my mind.
- I'm 25 and maybe more brash than some, and don't feel the need for
decorum etc.  I've previously actually brought an ENTIRE dinner, asked the
waitress, and put it on the plate and ate along with everyone else....I
really don't care what anyone thinks ;)!!!
- To prepare for a possible emergency trip, have a small box of safe non-
perishable foods ready to go.

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *

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