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From:
Karen Bulmer <[log in to unmask]>
Date:
Mon, 6 Feb 1995 06:37:21 -0700
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<<Disclaimer:  Verify this information before applying it to your situation.>>

Let me recount my story and it may help you and your brother with a
decision.  I was sick as a toddler (early 60's) and the doctors could
not figure out what was wrong with me.  They and my mother figured I
had developed a milk intolerance and then grew out of it at about 3
years old.  New grew or gained weight in from 1 year old until 3 years
old.  I had two children  aged 5 and 2 1/2.  The five year old was 8
lbs. 11 oz at birth, never spit up, slept perfectly.  He was the dream
child on a perfect schedule.  He was 30 lbs. at 1 year old and is now
55 lbs.  As you see no problem with the growth curve.  He is also very
tall for a five year old.  Then came Cody.  He was 9 lbs. 3 oz. at
birth, didn't sleep well, always seemed to be hungry, spit up (never
really threw up) and at about 1 year old started getting really smelly
stools, throwing up every so often, runny nose...etc.  I started in
with the doctors and Cody continued to get worse.  At 1 year old he was
27 lbs. by the time he was 22 mths he was 20 lbs.  I went thru family
doctor, who couldn't figure his problem and referred me to a
pediatrician, who also did all the same tests as well as ultrasounds
for tumors in his abdomen and couldn't find anything.  Finally I asked
around friends and co-workers (I work in a hospital though not as a
nurse) and got in to another pediatrician.  He took Codys history and
said "probably Celiac" so we'll do a biopsy to make sure.  It took 3
weeks to get to the biopsy and it was the hardest thing to keep feeding
Cody all the food he was not supposed to eat since they wanted a clear
diagnosis in case it wasn't Celiac.  The day of the test we then
started him on a GF diet and could see the improvement even before the
results were back 2 weeks later.  The pediatrician also recommended
that I get tested since, although I have been anemic on and off during
my adult life he thought there was a connection with my childhood
illness.  I had the biopsy, even though I had no signs of being Celiac
and it was positive.  I just had a follow-up test (8 mths later) and
the doctor says that I have much improved Villi but they are not normal
yet and to keep up the good work.  When I questioned him as to why I
could not show any symptoms yet still be Celiac, his reply was "It
doesn't matter how much of the intestine is affected, the "cure" is the
same...NO GLUTEN".  He said I may have only 6 inches affected or
patches and my son may have more intestine affected thus he reacts more
severely, but that no matter what the only way to "CURE" Celiac is
stick to a strict GF diet.

Sorry for being so long-winded but I think the history goes well with
the doctors comments about Celiac and it's "cure".

Karen at [log in to unmask]


>I was diagnosed with celiac disease 4 months ago.  My brother had been
>suffering similar symptoms for 10 years....Any general advice?  He lost
>another 4 pounds just this week!
>...
>Debra L. Boutin
>[log in to unmask]

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