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Thanks so much to all who responded.  You have some great ideas.  My
question is the first item below and the responses follow.  My comments are
labeled as such.  In general, I don't think I'll have much of a problem.
Like I said originally it's a very small private school and every time they
get so much as a whiff that a parent might not be happy with something they
bend over backwards to correct the problem.  And, as we have a couple times
in the past, it works wonders to gently remind them that we, not the State
of CA, are paying for the education and if they'd like to continue having me
write that $1,600 check (two kids) every month they'll work with me.  :-)


My question: I would appreciate any tips from you folks regarding some
really good points to make when I meet with my son's teacher and principal.
Something that would really make them stop and think about all this and how
serious they need to be.

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remind them we are covered by the American with Disabilities Act and
that they risk losing federal funding if they do not comply..

I am a teacher with over 35 years experience!!

My comment:  I was aware of this; however I'm not certain it applies to
private schools.  I believe our tuition is the sole funding.

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It is very hard to get people to understand the importance of leading a GF
life especially since sometimes exposure to gluten doesn't cause any
external symptoms.  I found it worked very well to give the school a list of
rules to follow.  Be very specific- they can follow rules even if they do
not truly understand or believe with the reason for the rules.  I have
attached something that worked well for us (attachment 3 pages).  Hope it
helps.  Also, it is a GREAT idea to give them literature etc.  Danna Korn's
book is very good. Also, the National Institutes of Health has a Celiac file
that is helpful:

http://www.niddk.nih.gov/health/digest/pubs/celiac/index.htm

My comment:  The attachment she sent was wonderful.  If anyone wants a copy
I'll be glad to forward it.

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So, all I do is call the teacher and tell her that Lauren is on a strict GF
diet (no wheat, oats, barley, rye) and that some foods you wouldn't suspect
have gluten in them.  I offer to provide snacks on any occasion they are
needed (sometimes candy is used as a prize for good behavior, etc).  I call
the room mother and tell her my tale too and ask her to just let me know
when she needs snacks/food and we work together so that at least some food
there is GF for Lauren.  Lauren brings her lunch every day to school so that
is not a problem.  At age 10, a child should be able to understand 'don't
trade food with others or eat any of theirs unless it's in a sealed bag from
the manufacturer and you know it's ok'.  With this approach, I have had no
trouble.

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How about a tee shirt with the saying  "I have celiac disease , I only can
eat what I bring or I could die" all true, Have you printed the letter
celiac deaths  and or Dr Joseph Murray's letter?

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Each year I give the teacher some gluten free snacks to keep at school for
birthday parties.  Also, when they have a holiday party, I find out what
they are having.  If they are having items he can eat-I request that he be
the first one to get the food.  That way (for example) if they have potato
chips and Doritos, he is not putting his hand in the potato chips after
someone who has put their hand in the Doritos and then the chips.  Always
think of the possibility of cross contamination.  Good luck!

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Go to this other good site: http://forums.delphi.com/celiac/messages/
and ask you questions.  There are knowledgeable and understanding people
there.  There is Abigail's Gluten-free list, and I have voluntarily
posted thousands of GF recipes.

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use words like "medically required diet" and "gluten in the molecular form
will cause damage" and "gluten is essentially a poison" "cross contamination
issues".  You may want to steer clear of "immune system" unless you're
discussing that the immune system attacks "gluten in the molecular form" and
that his body reacts to it like a "poison".  I think they will get it.  Good
luck and make great snacks once in a while for the whole class so that the
other kids will be a little jealous!

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I think the main way to get them to react is to approach them in a way
that you ask for help instead of being demanding. I gave the school lots
of information and gave them a copy of Danna's book.  I made them snack
lists and candy lists of things that were safe.  I let them know that I
would be sending lunch and snacks everyday and didn't expect them to
provide for her.  I think that took a little pressure off of them.  I
asked for permission for her to use the microwave and refrigerator if
she needed them.  They also ordered ice cream that she could have.  I
have had parents contact me wanting lists so they could send snacks for
the whole class that Kaitlyn could eat too.  I guess the main thing
would be to give them as much information as possible and offer to help
out as much as you can and let them know that it is okay to contact you
anytime to ask about anything (I think that makes them feel less scared
with the whole situation).

My comment:  I already have a stash of M&Ms ready for the teacher and I do
intend to help out as needed.  I'm very fortunate to have a job where I can
come and go as needed so I do attend every field trip and class party and
have for years.

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The biggest problems that we ran into at school were using gluten
products such as cereal for math projects, such as graphing.  Your son
is new to the diet, but old enough to understand that he can't eat these
things.  If you feel you can trust him, at his age I let my celiac
children use these things, but only on a napkin or paper towel (so that
the crumbs were not on their desk) with the understanding that they were
to be thrown away and hands washed immediately afterward.

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I like the web site celiac.com.

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I have just left my job of elementary principal (first fall with no
school in sight!) Besides all the information you have for the teacher
and principal, I think the difference a gluten free diet could make to
your son's lifetime health might make an impact.  Stressing the many
other diseases that celiac is known to have a relationship and that the
school's cooperation may impact your son's future might be an idea for you.

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I would include a list of allowable foods, also a list of hidden sources of
Gluten and a list of foods that are not allowed. A list of symptoms your son
gets from eating gluten so that the teachers know what to expect if he gets
some  by accident and any relative information pertaining to your son. I
think the information you have already is fine in my experience teachers
usually don't read it all so make your information brief and highlight the
important points.  Hope these suggestions are of some use.  Also probably
should mention your son should not eat any food that you don't send him.

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I truly believe it all depends on the teacher.  My daughter's kindergarten
teacher this past year gave wonderful lip service to letting me know when a
wheat or dairy (we have severe food allergies, not CD) substitute was needed
and at the beginning of the year was fine. By March, however, she gave my
daughter MILK AND COOKIES on St. Pat's day and when my daughter tried to
tell her she couldn't have them the teacher told her it would be fine and
would hurt the feelings of the girl who brought them in if she didn't at
least try them.  By June, she had Ice Cream Sandwiches two days in a row at
school and was vomiting and had severe bowel pain.  When I again offered to
bring in a substitute she said it wouldn't be fair to the other kids if my
daughter had something different (FYI - I showed up with substitutes anyway
ad stayed in class to make sure my daughter got them). You may have better
luck, but be prepared to battle all the way through. People forget and
ignore these needs when they get busy.  The child needs to know what he/she
can eat. Also, don't underestimate the help a decent school nurse can give
you.  Ours helped tremendously once she found out what was happening in the
classroom.

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with those blood tests & your son's response to the diet, you should be able
to get your doctor to write a letter to the school telling them the
importance in your son adhering to the diet.

My comment:  Since my son's biopsy was negative and he hasn't been
officially medically diagnosed, I'm not sure the doctor will do this.  But I
plan to ask him early next year, especially if the diet continues to give us
the great results we've gotten so far.

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You can tell them that there is a documented case of a child with growth
retardation that was caused by only ingesting one communion host per week!
1/48th of a slice of bread per day causes MEASURABLE intestinal damage.  I
would suggest that you pack his lunch everyday, and send in bulk snacks (get
a vacuum sealer for this purpose) of gluten free cookies (they can stick in
the freezer for the year or the month or whatever) GF waffles with peanut
butter, nuts, chips, gluten free cereal, etc... so he doesn't feel deprived
when they have parties.