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

A heartfelt "THANK YOU" to all of you who responded to my request for help in
putting together a pamphlet for Parents whose children are newly diagnosed
with Celiac Disease.  I am grateful for the many people who took the time to
respond.  I think you will agree after reading, that the responses are very
thoughtful and helpful.  The way the answers were written necessitated that I
group answers under broad topics.  Therefore, I will not answer each question
I originally wrote, but will group them into these broader topics.  Each
paragraph represents a different persons response on a given topic.  Again,
thank you, thank you for your help!
Leigh

l.  What are issues for Parents of Preschoolers?

Preschoolers are a major challenge because they often can't tell anyone about
their diet.  As soon as my son was able to lisp out words we taught him the
basic ingredients he needs to avoid:  wheat, rye, oats and barley, hydrolyzed
vegetable protein and modified food starch.  He has since added to that list.
We told him never to eat anything mummy or daddy hadn't OK'd and, of course,
we told everyone we knew not to feed him without talking to us.  This worked
surprisingly well and our son also learned to say, "No thank you I am not
allowed to eat that because I'm on a special diet" whenever offered food or
drink.

Be wary of well meaning people who can't understand that "just one" cookie can
harm the child.  Also be sensitive to social situations where the child is
overwhelmed with not understanding why (s)he can't eat something and has a
meltdown.  Provide lists of food to the teachers and provide items such as
gluten free pasta that can be prepared.

My biggest problem with my toddler is that I can't trust her not to pick up a
cracker or cookie at a social function.  I've got to watch her like a hawk.  I
also try to give her enough verbal expressions so that she can describe to me
what is going on with her.  I tell her that crackers and cookies will give her
"owies in her tummy": which she seems to understand.  Most social situations
occur only if I'm involved and can supervise what she is getting.  I am the
director of our church's Sunday School, so I bring my daughters' GF snacks
with me.  The teachers at Sunday School are all aware of the problem.

I have a 2 1/3 year old who was diagnosed at 8 months.  He goes to daycare and
I bring a weekly supply of food for his lunches on Monday (usually Macaroni &
Cheese made with rice noodles, and rice flour in the cheese sauce and some
meat or chicken to go with it.)  The babysitter has a shelf of foods he can
eat like tortilla chips, soynuts, cornflakes, etc. as well as vegetables and
homebaked cookies and minimuffins for her freezer.  The biggest problem has
been keeping people from feeding him.  I have been at the Dr.'s office and
another toddler will have some Cheerios or crackers and the Mom will willingly
share them with my son.  Or worse, the babysitter's husband used to think he
was deprived because he couldn't eat a pretzel or a cookie and would slip him
a little bit.  He finally understands that what happens after eating is much
worse for him than not having it at all.  The neighborhood moms have been
great and have asked for lists of snacks he can eat while at their house and I
have given them each a copy.  He usually snacks on popcorn, raisins, or
tortilla chips.

The mother of a 2 1/2 year old writes: we go to playgroups and I need to keep
an eye not only on my son but on the other little ones so they don't offer our
son a treat when I am not looking.  I feel like a watchdog at other people's
homes.

When our boy was a toddler I laminated a small tag with his name on it.  It
said, "Do NOT feed this child except what has been provided - Gluten
Intolerant."  I punched a hole in it and put it on his back.

Along those lines someone suggested another idea for identifying children as
Gluten Intolerant.  "Plastic Buttons are available at most craft stores.  Make
a picture and message on paper, color it and pop it into the button.  This is
a fun project for children at a gathering.  These can be pinned to hats,
shirts, jackets, carseats, etc. and will keep kids safe."    You could write
"Gluten Intolerant" right alongside the child's coloring.  At large gatherings
where a child might be at risk for getting food from some well meaning adult,
these could be a lifesaver.

2.  Elementary School

We put together a packet of information for the teacher which I update every
year, if necessary, and give it to the teacher on the first day of school.
When he was in kindergarten and the primary grades I made sure that I spoke to
the teacher at the end of the first day of school to confirm that she would
read the package and call me if she had questions.  I always got a call.  The
hand out includes a brief history of Michael's illness and diagnosis as well
as some of the complications that followed.  It provides on the diet (what
is/isn't OK) on the disease itself and I include a little sheet of "what to
expect" so the teacher can recognize a gluten reaction.  The kindergarten
teacher came up with the idea of me sending individually wrapped cookies and
muffins which she put in the school freezer.  Then when an unexpected treat
arrived in the classroom she just microwaved something for Michael.  I have
also kept teachers supplied with rice cakes and crackers.  At school I
volunteer to bake for everything and send in whole batches of GF cookies.  The
other kids eat them unknowingly and Michael gets to have the same food as
others.  When the school recently had a pancake breakfast, I made up some of
Michael's batter and cooked his pancakes on the griddle before the others.

I give the CSA/USA brochure written especially for teachers.  It really
crystalized a lot of things for the teachers and made it easier for them to
understand why my son was acting the way he did - part of his reaction to
gluten is ADD-type behaviors - and how different he acts when he is "on plan".
The teachers eespecially appreciate knowing everything because my son's
concentration and behavior is so much better on the GF diet.

Basically I find getting taechers to cooperate very difficult.  At the start
of every school year I provide any teacher, a day or two BEFOREHAND:

 - the CSA pamphlet, "Your Student Has Celiac Disease";
 - I include a letter that appears to be from my son, with a scanned photo and
   home #'s.  the purpose of the letter is to tell how important the diet is,
   that we have tons of food and snacks in our freezer and all you have to do
   is let me know when to bring it and that planning is appreciated because
   surprises are emotionally hard.
 - attach a list of commercial items they can purchase themselves
 - place a handwritten note on top to "please read the info and call me and
   please make copies for office staff, nurse, file, subs, parents club,
   room mother
 After school starts find out who the room parent is and make sure (s)he has
the info and talk the week before each scheduled party.  Provide a like
substitute.  Attend the party if possible.  For unexpected and unplanned
parties, keep cupcakes, candy, cookies in the freezer at school.  Do be sure
your teacher makes a special note somewhere to remind substitute teachers of
the issue.

I provide lists of what he can and can't eat to the school  and I say I would
be happy to provide more information.  I offer to make a gluten free
substitute for him and offer to provide a GF baking mix where parties are
concerned.  The school nurse has been an exceptional ally in dealing with
situations.  In first grade his teacher was also helpful and insured that he
could eat the treats or made those that he could.

At first I would go through an in depth explanation about how tricky and
complicated the diet is.  Now I simply say, "he can't have wheat and certain
grains.  It is like an allergy."  People can relate to allergies and it is not
as big a deal as giving a complicated explanation.  As a parent if you begin
making it seem like a rare, unusual condition it probably could scare people
off and then view your child as "different".  I want to avoid that.

For school parties, I make cookies to send for everyone, plus some separate
things for kate so she gets some variety, too.  School has been a challenge
and this week I plan to meet with the teacher.  I didn't make it clear enought
to the teacher last year and she baked bread in the classroom!  The next time
they baked I provided the peanut butter cookie recipe and they made that and
served them to the parents.  That provided a positive way for my daughter to
teach her friends about her food.

I give the CSA/USA brochure "Your Student has Celiac Disease" to the teacher
prior to the start of the school year and ask if (s)he will contact me to talk
when it is convenient to him/her.  They often call me immediately and I go in
and we talk before school even starts.  I also take in small, colored "treat
bags" in a plastic container.  The bags are filled with non-perishable food
items that the teacher stores in a closet for use when other kids bring in
birthday treats or whenever else food is eaten.  When our daughter was in
second and third grades and "being different" was especially hard I used to
include little notes in the treat bags that were of an encouraging nature.  I
also used to decorate them with curled, colorful ribbons to make them special
since the other kids were eating these delicious looking treats!  Since our
school doesn't require you to say the day you are bringing in a birthday
treat, this was the next best way for me to insure a treat was always there.
As parents got to know our situation, they would phone me with the date of the
treat and I would bake something comparable.  Small gestures, like her 4th
grade teacher going against school policy and organizing the date treats had
to be brought in, meant the world to our daughter..and to us, as we could
always send in a comparable baked good.  At the time of her diagnosis I sat
down with the school principal, secretary (who often functions as the nurse)
and the school nurse and went over alot of information about Celiac.  As the
same personnel are still there and have my handouts, I have not gone over the
information again.

3.  Snack Foods

I've been buying GF pretzels (Dietary Specialties, Glutano).  I pack fruit,
cut veggies in a baggie, jerky meats, potato chips, cheese.  I occasionally
make GF brownies; we buy Pamela's cookies, Health Valley Rice Crackers.

Cheezit's (homemade) are some effort but very much like the real thing.  They
travel well and taste great.

The children love Glutano Pretzels and meringues from Trader Joes.  They will
eat fruit and cheese for snacks.  I bake a treat like brownies or cookies
about once a week.  They also like thin sliced ham rolled around string
cheese.  Orville Redenbacher mini popcorn cakes are good too.  We seem to have
more problems with breakfast than snacks!  The cereal selection is so bland
and so limited that it seems that I'm constantly trying to find things for
them to eat at breakfast.  They miss donuts the most.  I've tried using a
plug-in mini donut baker, but it isn't the same as a nice raised donut fresh
from the donut shop.  They miss their bagels too.  I haven't been adventurous
enough to try to make my own bagels yet. (Note:  The GF Pantry has a good
bagel mix!)  I also send a packet of Well Plan cookies, a box of raisins or
some Glutano pretzels as a snack.

I make GF cookies and muffins.  I make Chex Snack mix using Health Valley's
Rice Crunchems.  Microwave popcorn is a favorite.  Hunt's Pudding Snack packs,
too.