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From:
Karen Jay <[log in to unmask]>
Date:
Wed, 10 Mar 1999 13:32:13 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

I aplogize for the length of this post, but I was trying to anticipate any
respondents questions.  Also, I want to thank Ron Hoggan.  He has been very
helpful as we struggle throught the maze of information.  He also suggested I
pose this question to the group since he thought there were others with
similar questions.

My 12 yr.  old son began having intestinal problems after a lengthy
hospitalization with a brain abscess.  Along with surgery, he was treated
with nafcillin, cefotaxime, and metronidozale (all iv through a central line)
as well as decadron and zantac.  Prior to this he had no intestinal problems,
and only minor medical problems - ear infections and some sinus type
allergies.  We spent a year and a half going back and forth to the
pediatrician with typical Celiac symptoms which were always diagnosed as
viral.  During this time we treated my son with Imodium and a restricted diet
(BRAT) until his symptoms cleared up.  The pediatrician sent us to a
pediatric gastroenterologist at Texas Children's Hospital; she took his
history and ordered blood tests, his first set of blood tests were as
follows:

IgA < 10 (reference range < 10)
IgG < 19 (reference range < 10)
Endomysial AB >1:10 (reference range 1:5)
IgE normal

Additionally, he had no anemia or any other vitamin deficiencies.  She also
did RAST tests for wheat, oats, barley, rye, corn, peanuts, soy and all were
negative.  Based on the blood tests and his symptoms she did a biopsy with an
enteroscope.  He was full of gluten when both the blood tests and biopsies
were done (bread, cereal, cookies, etc...), we had never heard of gluten
intolerance.  She looked around and got as far into the small intestine as
possible and took 4 biopsies.  The biopsies showed no thickening of the bowel
wall and no increased intraepithelial lymphocyte count, no flattened villi,
slight inflammation, and the presence of eosinophils.  After all this my son
went on a course of prednisone and a gluten free diet.  He did very very well
and had no more intestinal problems.

He has been gluten free since last spring.  However, this fall he began to
have the same symptoms he had last spring.  The gastroenterologist repeated
his blood tests and rescoped him after 4 weeks of diarrhea.  The blood tests
this time were as follows:

IgA < 10 (reference range < 10)
IgG < 24 (reference range < 10)
Endomysial AB >1:10 (reference range 1:5)
IgE normal

Again there were no vitamin deficiencies, no problems with fat absorption.
Again she took 4 biopsies, looked around, photographed and observed no change
in the mucosal architecture when compared with the first biopsy taken in
spring of 1998.  Everything looked normal with the exception of some
inflammation and eosinophils.  He had a short course of prednisone, started
on periactin and Pepcid, and is doing fine.  The gastroenterologist is great,
well informed and treats other Celiac children so I am confident that she is
exploring all possibilities.  However she is hesitant to diagnose Celiac
Disease based on the biopsies.

Bottom line; "good" biospies, so-so blood tests, no lactose intolerance, no
giardia, no Chron's, no IBS...  nada.  After reading the posts for the last 9
months I wondered if anyone out there has had similar experiences with their
diagnosis.  Is this Celiac Disease?  If not what could it be?

I would appreciate any insight or advice anyone might have.

Finally, thanks to everyone who posts recipes!  I make great brownies,
chocolate chip cookies, snickedoodles, waffles...  all gluten free and we
couldn't have adapted without all the help from everyone.

Thanks in advance for any insight,
karenjay
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