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Hi,

Thought I would send an introduction to the list.  We are putting out 13
month old on a GF diet by the end of the week.  He is going to have a
biopsy late this week for CD and afterwards he's going GF, regardless of
the results.  I'm hoping to gain lots of insight from you all and maybe
eventually help others in my situation, too.

A brief history: Joshua (our 13 month old) dropped from 90% to 40% on
the weight charts from 6-9 months and down below 5% by 1 year. We (me,
my husband, and his sitter) have been concerned about him for a couple
months as we knew he wasn't gaining and had noticed he has lots of loose
BMs but we wanted to wait and see what the doctor said at his physical.
She wasn't terribly concerned, but did want to bring him back in a month
for follow-up. Meanwhile, not satisfied, I got on the web and did some
research.  And discovered CD.  Explained not only his weight gain, the
BMs, but also symptoms we didn't even think might be associated like
"pot belly" and excessive irritability.  Plus we have a history of lupus
on my husband's side of the family and scleraderma on mine and, I
discovered, my aunt with scleraderma also has CD herself.  We put Josh
on a GF diet last weekend (as my hubbie said, "If you thought you might
be feeding your kid something containing rat poison why would you ever
keep feeding him it?") On this diet, we all noticed HUGE improvements in
Josh's mood, BMs, and appetite, plus he gained over a lb in less than 4
days.  When I revisited the doctor to discuss this, my doc was on
vacation and her associate totally blew us off.  So I called UW
Children's Hospital (we live outside Madison, WI) and left a message
detailing Josh's situation for the GI nurses.  That evening I was called
back and the nurse squeezed Josh in with one of the pedGIs last Friday.
He saw him, ordered a slew of tests including the CD antibody test, and
is going to call us back with the biopsy time tomorrow.  Based on
history, the dramatic improvement on a GF diet, and Josh's young age, he
admitted that he'll do the biopsy regardless of the test results, since
he expects negative results.  And even if the biopsy is negative, he'll
keep Josh on a GF diet as long as it works.  But he wants (and we agree)
to do whatever we can to get a definitive diagnosis now so there will
never be ambiguity later.  Of course, that means poor Josh is back on
gluten and miserable, but fortunately it's only for a couple days
(otherwise we wouldn't do it!).

So that's our story.  Please email me direct with any comments,
suggestions, or advice. I'd especially like any words of wisdom from any
kids out there who've had CD since infancy with any advice you might
have on things we could do for Josh.

Thanks!

Jennifer