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Hi,

I'm writing to ask for advice on how you avoid having your young
children get exposed to gluten at school and how you interact with
teachers.

My son and I both have celiac disease and are allergic to soy and cannot
tolerate sorghum. My son's symptoms are more severe than mine and he
will react to gluten that he is exposed to through cross contamination.
His pediatrician thinks he may DH along with the celiac disease because
when he is exposed to gluten he has GI symptoms and also develops a rash
that looks like DH (he hasn't had a skin biopsy).

My son started school this year. He just turned 5 and is in an afternoon
Pre-K program Monday through Friday for two hours and forty-five minutes
a day. I have him on a strict gluten free and soy free diet at home and
he was doing well. He eats lunch before he goes to school. Since he
started school, he has gotten sick several times with terrible diarrhea
and rash. I talked to his teachers before he started school and since he
started school I have spoken to them several times about the importance
of him avoiding gluten and soy. I supply all his school snacks. I've
also supplied gluten and soy free art supplies for my son and have
offered to purchase art supplies for the rest of the class.

I'm frustrated because I know he has been exposed to gluten in the
classroom. When school first started, the teachers had him fingerpaint
with wheat-based paint even though I told them he should not use it.
They have done food projects where they prepare baked goods like cookies
and pies in the classroom and I was not told about two of these projects
until after they were done (and my son got sick). Now they are telling
me about food projects (without much notice) and I am faced with either
supplying all the baking ingredients for the class (15 kids) or keeping
my son out of school for the day. This would not be such a big issue if
the projects were not done so frequently. This afternoon, I got an email
from the teacher telling me they are going to make pumpkin pie in the
classroom on Monday and that they are also going to make "ghosts" out of
chocolate pudding and whipped cream. Because my son got sick again this
week, I suspect they still aren't being careful about cleaning up and
using art supplies.

my son's head Pre-K teacher had a child in her Pre-K classroom last year
who has celiac disease. That child's parents permitted him to use
wheat-based fingerpaint and wheat-based play dough in the classroom. The
teacher claims the child never got sick from using those gluten
containing art supplies or from making gluten containing food projects.
The teacher is resistant to changing her classroom routine.

How have you dealt with these sorts of situations? I'd appreciate some
constructive advice. I want my son to have a positive experience at
school and to be treated well by the teachers and liked by the other
kids. I don't want him to be ostracized, but I also don't want him to
keep getting sick.

Alicia in Chicago

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