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Hi listies,

As the mother of a celiac child (11 years old and was diagnosed at 7 years)
and a leader of a celiac children's group for the Chicago area, I feel I
must unburden myself to a wonderfully supportive group of people who would
understand my anguish.

My daughter was diagnosed at 7 years old while in second grade.  She was
attending a Montessori school and was having some attention and behavior
problems.  After she was on the gluten free diet for one month, her behavior
had changed so much that the teacher asked if we had put her on Ritalin.  We
asked her why she thought so and she explained how much calmer and focused
our daughter was now.  We told the teacher that the only change we made was
to take gluten out of her diet.  She was amazed and said she wondered how
many other children have a similar situation and will go undiagnosed.  For
the remainder of that school year she did fine.  The following summer she
was cheating big time at camp and had the behavior problems return.  These
lasted through third grade and even though we tried to explain to her new
teacher that it was the diet that controls her behavior, she was not
receptive and even went so far as to put my child in a closet to do her work
so she wouldn't bother anyone.  I found out about this by accident when I
came into the room unexpectedly and saw her their.

When she went into fourth grade at the same school, she had a different
teacher again.  She was better in fourth grade because she was again totally
gluten free.  The new teacher did not believe that her diet was connected to
the change in her behavior.  Toward the end of fourth grade, our daughter
was trading food at school and again began to have problems concentrating.
By fifth grade, she was better in the beginning, but started having problems
again and we had her tested for ADD at the request of the teacher.  The
results revealed borderline ADD and an auditory processing problem.  Her IQ
test scores were high and would have been higher if she could focus better.
The psychologist who tested her was familiar with Celiac and the behavior
connection.  Even though he knew this, he still suggested that we medicate
her even though he doesn't really believe in it.  The school also expected
us to put her on medication.  My husband and I wanted to clean up our
daughter's diet and try some vitamin therapy and biofeedback training to
teach her how to focus instead of drugging her because we knew what the
cause was.

After some months went by, things improved and she was in a upward trend in
school.  After Christmas break, her behavior became very bad and we couldn't
figure out what was wrong.  She insisted that she wasn't cheating on the
diet.  We were called into school for a conference again.  This time they
asked if she was on medication and we said no.  We explained about the diet
and the connection to behavior.  The teacher said that was just an excuse
for her behavior and was unacceptable.  She then mentioned, almost in
passing, that she had been trading lunches and she saw her eating Ritz
crackers!  This had been going on for some time and I was never told and she
was never stopped from doing it.

Another meeting was requested with the social worker that is training our
daughter, the principal, the teachers and the parents to see what could be
done to help our daughter.  At that meeting, the teachers and principal made
it clear that they didn't think we were cooperating with them by not going
to their recommended psychologist and putting our daughter on medication and
that they didn't believe that cleaning up her diet would help.  They said
they were not willing to help her keep from cheating by talking with
everyone on supporting her with her diet.  They also were firm about not
allowing her special considerations to help her through this time of
detoxing.  The end result is that she was asked to leave the school and not
complete the 3 year cycle as is customary and highly recommended by the
administration.

I am incensed at the hypocritical manner in which these teachers and
administrator set my daughter up for failure in this classroom setting when
clearly the other teacher saw that the diet does help the behavior and that
she was amazed and delighted at the change.  Her old teacher even helped our
daughter keep the diet and informed me if she thought she got a "slip".  It
was immensely helpful at that time, because we were still trying to clean up
the diet totally.  I was also flabbergasted at the new teacher's and
administrator's extreme lack of compassion for a sick child when they quote
to the parents that Maria Montessori emphasized how a child must be
respected at all cost.  I let the social worker and my husband do most of
the talking because I knew if I opened my mouth, I would threaten a law
suit.  The teacher even called my daughter a lier about which foods were
okay, which luckily the social worker turned around to explain that it was
only the child's coping mechanism to save face in front of her friends so as
to avoid embarrassment.

When I met with the social worker privately later in the day she told me how
she was amazed at how hostile the school staff was and how unwilling they
were to help our daughter when that was the original pretense for the
meeting in the first place.  She said that it would be much better for our
daughter to get her away from such negative people.

I feel angry, hurt, betrayed, and resentful that all these years, our
daughter was made to suffer and I was not informed about her problems so
that they could be resolved.  She will be switched to another school and it
will be interesting to see how much support she gets there.

Thanks for listening to a mother's lament over the heartache I feel for
my child Warmly,

Bev Wahl
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