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From:
Anne Barfield <[log in to unmask]>
Date:
Tue, 5 May 1998 08:58:39 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Listmembers,

I was amazed and comforted by the replies and suggestions I have
received from my post.  I have just had a crash course on cut and paste,
and will attempt to try it.  I hope some of these responses will give
encouragement to others. Each paragraph is from a different poster....

I eat out a great deal.  This leads to the occasional accident, but
restaurants are not something I am willing to give up.  I have boiled my
conversation with the waiter down to a formula.  I say that I have a
medical problem that isn't too hard to deal with but I will need some
help..explain the basics, emphasizing that this is not an allergy (which
is dose specific---i.e., forty bee stings is worse than one) but a
serious reaction to even very small amounts of gluten, "so anything in a
bottle, can, or packet is suspect."  .

I usually bring a dessert or dish that I know they will enjoy and that I
can eat.  Like you mentioned, "safe eating".  As time goes on, people
will become more aware of people with celiac disease.  From present
testing in New York, they are finding 1 in 300 to have this disease.

I talked to my mother about my problems with gluten, and she had heard
of celiac, but said about 4-5 times how it was a disease diagnosed in
childhood, no matter how many times I answered with thatthere is adult
onset celiac.  And I when a mentioned just a couple of the dietary
restrictions she kept saying "well, but you've got to LIVE" implying
that life on a GF diet isn't worth living.  Sigh.

I can remeber after being diagnosed only a few months.  I was invited to
a good friends childs baptism.  I really didn't want to go, because
after church you do the lunch thing.  I ate in the car between church
and her house, so I would be full and OK with not eating there.  To my
surprise she pointed out under all of the items on the table she had
written ingredients..I cried with joy at the thought that she had put so
much work into it and all for me to feel that I'm OK!  Needless to say I
did eat again, full or not.  Now that is a true FRIEND!!!

Being Celiac is a good thing...stay positive and absolutely on the GF
diet and just when you think you couldn't feel better, you will.  It
tookme almost two years to be at my best, and thats where I am staying.

   I have been reading about Paleodiet, Neanderthin, basically the diet
does not include any grains not even rice only "pure foods", such as
meats, eggs, veggies, fruits, nothing processed.
   For me I don't even include chicken, beef, some veggies I even react
too.  I know this sounds harsh but is so far the only thing that works
for me, although I do still use a protein powder that is rice based and
Pacific Foods of Oregon Rice Drink-so far, so good.  I wish you luck,
yes it is very isolating, I no longer go out to dinner, too risky, I
cook all my own meals, am learning to cope.  I do have very supportive
housemates

About symptoms, maybe a tiny gluten exposure upsets things so that foods
that are normally tolerated can't be tolerated for awhile.  I find the
hardest part to be what you yourself identified, that is being set apart
from others.  It certainly helps to find some sense of community here.
I'm reminded, too, of the adage that is taking shape.  It comes up often
when people say they don't know any gay people.  If 10% of first-degree
relatives of celiacs have 'clinically silent' celiac, then there are
many people out there undiagnosed.  (This bit of info came to me from
the GI people at Packard Children's Hospital at Stanford, apparently
it's not news anymore, but it was to me.)

Those who are still reacting are eating wheat distilled vinegar and
those who are consuming corn distilled vinegar are having no reaction
and think the rest of us are crazy.  I have been GF for 11 months.  My
old energy returned, no asthma attacks no dropping off to sleep like a
narcoleptic, Then suddenly my symptoms returned.  It was tiny amounts of
pickle, mustard, mayonnaise and some spices used in moderation that were
now giving me the same symptoms I formerly had when I was eating gluten
without restriction.

Hi.  I know exactly what you mean about how hard all of this is, how
people don't understand, and how valuable, although at time depressing,
this list is.  I wish you well.  I just wanted to send my support to
you.

I, too am newly diagnosed and, like you consider myself a very good
cook.  This is the first post I've responded to because most of them
were too frustrating.  I couldn't understand why people were complaining
about their diets being bland or boring...frustrating and challenging
YES, but never bland or boring, there are just too many good options out
there.  My strategy for DD (love the phrase, I think I'll use it!)
right now is to stick to whole, unprocessed foods until I get compulsive
enough to start contacting companies and ask them about specific brand
names.

(continued in part 2)

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