<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to all who responded and if anyone else would like to e-mail me
anymore stories please do - the convention is still a month away!!!!  (P.S.
Pam, please send me your email address within a message).
                                   Heather Campbell

In response to my question to those who grew up celiac: What did your
parents do right and what did they do that you wish they hadn't.

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I was diagnosed at 14 yrs and my younger brother when he was 9 or 10 yrs
old.  My mother also has CD.  She always attempted to make things for us
that were as close as possible to the 'look' of glutenous foods.  Yes, it
is possible.  Not for everything, but enough that we felt like we had most
of the same things.

GF Bread 'technology' has gotten better since then.  Now with the list we
can find more GF products, i.e.  pretzels, bagels, etc.  We had a hard
time with not being able to go out for pizza but fortunately in Buffalo,
NY, Chicken Wings are very popular so we could go out with friends and eat
the wings.  (Chicken Wings are greasy but GF).

We both missed sub sandwiches, even today.  We haven't found a good
substitute.  At Birthday parties and social events, we would just call in
advance and check the menu.  Most were happy to make something available
or let my mom make something for us to bring that was GF.  I can remember
bringing things like a Taco Dip (cream cheese, sour cream, onions, green &
red peppers, salsa, cheese served with corn chips to scoop up the layers)
or other things.  My mother would find regular recipes that were already
GF so everyone could have some (it was cheaper too.)

I don't ever recall having a hard time understanding that eating GF was a
problem for us to accept.  My mother made it reasonably easy, so I rarely
felt like it took all that much extra effort.  My brother took longer to
learn to not eat small amounts of gluten in things.  He wouldn't eat
bread/rolls or cookies, but would eat a candy bar with maltodextrin or
wheat anyway.  He just didn't understand what that was doing in the long
run, until he agreed to try totally GF for a month.  He felt so much
better that he was convinced.

PS.  By the way, I am now 29, my brother is 23.  Both of us are happy,
healthy and GF!

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Dear Heather--This sounds like a good idea for Celiac kids and parents.  I
am 18 now and was diagnosed at age four.  I'd say that I really don't
think that there was anything that my parents did that "embarassed" me.
My mom was a homemaker until my early teens, so she was always around to
bake for me.  I never went without when there were birthday treats at
school or such.  She always had some sort of a substitute.  I think one of
the most important things that she did for me was to compile a "diet
sheet" which listed okay/taboo ingredients, as well as favorite snacks and
recipes.  Then she would provide this list for the parents of my friends.
This way they could have something like fruit roll-ups or popcorn on-hand,
and would have a reference source for more complicated food-related
questions.  There are things similar to this available on the Internet
these days.

Otherwise, I learned very young that there were people who would simply
not (through an obtuse attitude or simple lack of comprehension) comply w/
the condition.  It was very hurtful to hear from friends and even
relatives that it was "all in my head."  I had to accept, though, that the
diet was what kept me healthy.  I never questioned whether or not I should
eat something or "cheated."  I learned how to read ingredients and adhered
to my diet 100%.  I simply accepted that as necessary, and was encouraged
by my parents.

There were certainly times when I was angry about this burden.  It was
very frustrating feeling different, but my parents tried to keep it in
perspective.  I wasn't born handicapped and I didn't have to give myself
insulin shots every day like some kids did.  Plus, food was food and I was
able to eat almost everything that everyone else does, just in a different
form.  My mom also, by the way, talk me how to bake when I was small, and
has continued to help me in this respect.  She created lots of fabulous
recipes, and has always "fretted" over me to see that I eat correctly.

I won't say that it's "all better" now that I'm a young adult.  I will be
going off to college next fall and will face an all new challenge--dorm
living.  That could cause many hassles in and of itself.  These days when
my friends want to go out for pizza or go to Taco Bell I make due as best
I can, and tell myself that CS keeps me skinny (well, sort of!).  My only
hope is that I do not, by means of genetics, pass this on to my kids.
That, however, remains to be seen.

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I was diagnosed with DH at the start of my teens.  My worst situations
were at times that a group of us would share take aways, eg pizza, giant
rolls breaded fish and chips etc.  and I felt really alienated and ashamed
to admit I had a problem.  I either withdrew completely or ate the
offending stuff and risked the consequences.  I think if I had of learned
to talk about the problem with other kids and challenged all the " oh you
poor bugger" comments with an appropriately positive response and learned
to cook all the GF alternatives and invite my friends to join in with me,
life would have been easier.  I now find that my DH is a curiosity and
often a great topic to break the ice at parties and when I bring along GF
pizzas and bread rolls and cakes, its always a very positive response.  If
kids can learn the positive side of being different and impress others
with their knowledge of their disease and their cooking skills their child
hood and teen years may be more rewarding.

------------------

I am a 25 year old celiac "kid" from Germany, currently living in Atlanta.
First of all I have to admit that I was very ignorant about celiac disease
in my teenage years and also my parents became less careful because I did
not have any symptons. I don't want to make them look bad, it just got out
of their control . I am stubborn...and as long as my parents could not see
what I was eating, they could not fight against it.

I was diagnosed at the age of about 1 1/2.  As a little kid I did not have
any problems in accepting my diet (I just talked to my Mom on the phone
about it).  For me it was very natural to say "No, I cannot have this."
Most of my friends' parents were friends of my parents and so they knew
very well about my diet.  When I was invited for a birthday, I've had my
own cake and cookies with me and as far as I remember, the other kids were
even a little bit jealous because I was eating something special.  And
still :  all of my friends always want to try my stuff and my boyfriend
loves my bread-machine rice bread.

But then came a time in which I started to become smart about it (in
3rd/4th grade).  I realized that I was able to eat certain brands and so I
started to try how far I can go.  I remember one day when I was over at a
friend's house and I was asked if I want to stay for lunch.  The mother
knew about my diet.  So she said that she was planning on cooking
spaghetti and that she has to think about something different now.  But I
was asking her, which brand she wanted to cook and when she told me the
name, I said "Hey, that's the one I can eat."

I don't remember, what followed.  But I guess she did not cook it - she
was smarter than me.

I don't know when it started, but I guess at the age of maybe 14.  I was
spending time with friends and we did not have other adults around us.  So
I started eating small amounts of gluten.  Every now and then a piece of
cake or bread, pretzels and stuff like that.

AND NOTHING HAPPENED! So I went on until I did not care about it at all
anymore. Except for home, where I was still eating gluten free.
I was lucky. I survived these years without any symptons!!!
And then (maybe 2 1/2 years ago), I don't know why, I suddenly started to
think about it more. First I tried to avoid at least the real obvious food
like cake, bread, pasta,... I did not pay attention e.g. to sweets with
waffles in them.

In summer 1995 I put a note in the internet, that I am looking for a
celiac host family in the States (I wanted to come as an Au Pair).
Finally, when I was about to give up, I got in touch with Patti here in
Atlanta.  She has celiac disease and was looking for an Au Pair for her
1/2 and 5 1/2 year old kids.

We started talking about the disease, the differences between the US and
Germany and I became more and more cautious.

Finally, in January 1996 I came to Atlanta as an Au Pair for a great
family. This was the best time of my life and I've learned a lot about CD.
I am almost 100% GF now, but every now and then I still cannot control
myself and have to eat bread in a restaurant e.g.

I think, that it is like a drug. It's very hard to live without gluten
again after alll those years of sinful living.

This is my story.

I guess my message especially to parents of celiac kids is, that they have
to watch their kids especially in teenage years.  In those years, when
kids also start smoking, drinking, drugs etc.  It is the age of testing
yourself and your parents and it's VERY easy to get the "drug" gluten.