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Hi,

Several people asked me to post an update on my son's school situation. My
son has celiac disease and DH. He just turned 5 and is enrolled in a
half-day Pre-K program at a private school in Chicago. Since he started
school, he has been repeatedly exposed to gluten in the classroom and has
gotten sick with terrible diarrhea and rash. I know the gluten exposure is
happening at school because I also have celiac disease and DH, we follow the
exact same diet at home, and I have no symptoms. I've provided all my son's
school snacks and also provided gluten and soy free art supplies for him.
I've offered to purchase gluten free art supplies for all the other kids in
my son's class, but the teacher rebuffed my offer. There have been numerous
"cooking" projects in the classroom (I did not hear about several of the
projects until after they happened). I've told the teacher that I will
supply what she needs for the cooking projects. Friday afternoon, the
teacher sent me an email telling me that there would be a cooking project,
pumpkin pie, on Monday.

Yesterday, I showed up at the time the teacher requested with the
ingredients to make gluten and soy free pumpkin pie for all the kids. When I
arrived, I saw that my son was wearing an old art smock that had dried
fingerpaint on it, not the new smock I had provided (he was not painting or
doing an art project, he was playing with toys that were floating in a big
tub of water). I told the teacher that my son needed to change into the
smock I had provided and demanded that she produce the smock. I discovered
that the smock I had purchased still had its original folds and looked like
it had never been used. I suspect she has continued to have my son use the
gluten-containing art supplies that the other kids use, not the supplies
that I provided for him. Needless to say, I had an extensive conversation
with the teacher about celiac disease and DH and tried to get her to
understand the importance of not continuing to expose my son to gluten. I
also discussed the teacher's policy of having the kids eat their snack
whenever they want and requested that she change the policy so the kids have
their snack at the same time and wash their hands afterwards to reduce the
amount of gluten-containing crumbs spreading around the classroom. She
refused to change the "grazing" to snack at a set time and stated that it
was too difficult for her and the teaching assistant to make sure the kids
washed their hands after they ate. I explained that I've taught my son to
always wash his hands before and after he eats, and suggested she make hand
washing part of the classroom routine (there is a sink the the classroom).
She again refused to change her policies. After she finished speaking with
me, I prepared the pumpkin pie for the kids. I wanted to stay until the pie
had baked and see the kids eat it, but the teacher insisted I leave. When I
picked my son up from school, he told me that none of the kids ate the pie.
He said when he asked where it was, the teacher said she'd accidentally
burned it (the oven is not in the classroom). I suspect the teacher never
baked the pie at all, she just threw it out (there was not sufficient time
left in the school day for it to have burned).

My husband and I have an appointment to meet with the school principal on
Friday. We are convinced that our son needs to be moved into another
teacher's classroom. I know our son's current teacher had had some
communications with the principal about our son and has told the principal
that the Pre-K student she taught last year who has celiac disease did not
have any symptoms of being exposed to gluten in her classroom. I'd like to
show the principal materials that explain what celiac disease is and how the
symptoms vary from one person to another. I would also like to show the
principal some materials about DH. I'm especially interested in finding
materials that explain that topical exposure to gluten (from touching gluten
containing materials) can trigger symptoms and cause damage to the
intestines. Before my husband I have the meeting with the principal, we are
going to send her an email with links to informative websites. I'd like the
material on celiac disease and DH to be concise and easy to understand,
because I'm not sure the principal will spend much time reading it. Can you
suggest websites?

If the principal refuses to place our son in a different class, we are going
to have to take him out of school. I really do not want to do that because
my son loves going to school and is making friends with the kids, but I
obviously will not have my son remain in a situation where his health is
compromised.
Because there aren't a lot of Pre-K school options in our area, if we have
to withdraw our son from school, he won't be able to enroll in a different
school until the next school year. I'm afraid that if I withdraw my son from
school, he'll feel stigmatized. So I really need to convince the principal
to do the right thing.

Thank you for your help,

Alicia in Chicago

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