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Hello!
I am new to the net and have just recently found your list.  I have
lots of questions, but I decided to send them one subject at a time.  I
promise the rest won't be nearly this long!
 
My husband was diagnosed with CS through biopsy 6 years ago.  We now
have a son, Bryce, who is 4 years old.  He was fed my breastmilk
exclusively for his first four months; durring this time, I was advised
by at least 4 separate sources (3 MD's, 1 other) that I did not have to
worry about eating gluten, that gluten would not come through my
breastmilk.  Since my son had good weight gain, (at 4 months, he
weighed 22 pounds) I did not worry about CS or eating gluten.  However,
he had extreme colic and frequent green, gassy, stools.  He also had
rashes on his face.  Since he appeared healthy, the Pediatritian said
don't worry (of course, he didn't have to hold a constantly screaming,
inconsolable baby for hours on end).
 
When he was a year old, I allowed him to eat small amounts of gluten.
His symptoms did not change noticeably, although he continued to have
constant loose stools.  I continued to explain his fussiness and
irritability to teething or just his personality.  His weight gain and
health seemed good, although he continued to have rashes (small red
dots) on his face.  The pediatric gastroenterologist specialist at
Stanford U. Hospital told me he could not possibly have CS since he was
healthy and not having diarrhea 6 times a day.  Nonetheless, I decided
to stop giving him gluten, although I continued to eat gluten and
continued to nurse him.
 
Late in his first year, he began to get frequent illnesses, colds and
coughs.  Just before he turned 2, we both got the flu; I did not eat
anything for about 3 days, and my son had only my breastmilk.  Durring
this time, I noticed that the rash on his face had dissapeared.  On the
fourth day, I ate a piece of bread, and Bryce still would not eat
anything besides breastmilk.  The rash on Bryce's face came back
immediately.   This was like a revelation to me:  I could come to no
other conclusion than that my son had Celiac Sprue.  After that
experience, I began to eat a gluten free diet.  The rash on his face
never came back.
 
For about 1 year after that, Bryce experienced pimple-like eruptions on
his buttocks and legs. They would start out looking like warts or
blisters, then, after several weeks, turn red, hard, and painful around
the immediate area (really hard for a kid just learning to use the
potty). After a few days, the blister would break, and slowly heal.
After that year, he has never had one of the blisters again.  Since
both of us have been eating gluten free, he only experiences loose
stools when we eat out (we try to eat gluten free at restaurants, but I
guess we still haven't been successful--my husband has no noticeable
reaction to eating gluten, so we only have my son's reaction to go by)
Sometimes (usually, but not always, in concurrance with a suspected
exposure to gluten) my son will complain of itching around his rectum.
 
 
I am still not 100% certain Bryce has CS: he still has loose stools in
spite of us eating as GF as possible.  Either we are not successful in
our diet or something else is the problem.
 
The questions I have are as follows:
1.  Do any of these symptoms sound familiar to anyone who has kids with
CS or was diagnosed with CS as a child?  Do you have a CS child who
gets irritable when they eat gluten?  What is that like?
 
2.  If only really sick children have CS, how come my husband was not
sick until he was in his 30's?  His baby pictures show a, pudgy,
healthy baby and his mother does not remember any problems.  Could my
son have CS even though he is not wasting away?
 
3.  Does anyone know of research done or being done to find out about
gluten in breastmilk?  Shouldn't mothers who don't have CS be warned
about not eating gluten if their spouse has CS, at least until the baby
is old enough to do a gluten challenge?
 
4.  I have not wanted to give Bryce a gluten challenge because I worry
about intestinal damage and a bad reaction.  Does anyone know of
research or information on harm done by gluten challenge to children?
Does anyone have a personal experience with what happens when you do a
gluten challenge to a child who does have CS.
 
I know this has gotten rather long, and I want to express my thanks to
those of you who read through it and respond.
 
Pam Newbury