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Hello everyone,

First, thank you to everyone who replied to my posting and so
generously shared their personal histories.

Many people asked for more information about what I meant by Sarah
getting sick for 3-7 days after a being exposed to crumbs.  Many
thought that perhaps she was actually consuming gluten from a hidden
source, or that the symptoms were from something else.  We do have a
gluten-free home and are very careful about reading labels and
calling to check even on our regular products.  Sarah's bouts of
illness are easily corrilated with events outside our home (which she
hasn't done more than once every week or two).  She is always
accompanied at these events and never intentionally "cheats."
Sometimes, after we have been someplace (playgroup, preschool class,
etc) where there is visible, copious gluten contamination, she will
start feeling bad within about 24 hours.  She has moderate to severe
stomach pain (enough to disturb sleep), no appetite, stool changes,
behavioral problems (easy crying, clinginess) and extreme fatigue.
None of these is fun, but the most significant right now is the lack
of appetite and no willingness to eat.  Because Sarah was so
underweight when she went gluten-free 7 months ago, we are still
catching up.  She has gained 3 pounds and is now back on the weight
charts (3rd percentile), but it only takes a few days of not eating
for her to begin to lose weight.  We have discussed these
circumstances with her gastroenterologist and she agrees that the
symptoms are gluten related and she has other patients with similar
sensitivities.

Many of you wrote with encouraging stories and helpful suggestions.
Most of the celiac kids are attending preschool/school as usual.
Food related suggestions included sending the child to school with
their own food in a sealed, easily identified container; working
closely with the school and staff to anticipate cooking projects and
special food events and sending g.f. food for the child; and teaching
excellent self monitoring to the child.  Many of you described
children who have learned to watch their own behavior (not putting
hands to mouth) and who wash hands frequently.  All this was very
incouraging that Sarah will outgrow her habit of touching her mouth
and that her good hand washing habits will pay off in the end.

I did hear from two other (so far) families with young celiac
children who were having similar difficulties to ours.  They
described having to discontinue most out-of-the-home activities and
take their children out of preschool.

Some things we have done to balance the loneliness and isolation is
to find peer  group activities for Sarah that do not have any food
(preschool always involves a snack).  She is starting a ballet/tap
class at a dance studio where the room is not used for anything else.
This took more sleuthing than you would think- one dance company uses
the dance studio as a staff lunch room each day.  We are also waiting
for an opening in a music education class.  I found other classes
like this, but two per week was enough for us right now.

I also got a response from Danna Korn that there is a ROCK group
starting in our area, and that was a great find.  What Sarah really
wants is to feel like she isn't different from other kids and for now
that will only happen in a gluten-free group.  Thanks again for all
the responses!

Rosie
Salt Lake City