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From:
Ian Wahl <[log in to unmask]>
Date:
Wed, 26 Aug 1998 23:36:36 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Listmembers,

Thank you for your wonderfully warm and caring responses about my daughter
and her bingeing on gluten.  Some of the suggestions were as follows:

A lot of people compared having to stick with the gf diet and cheating like
an addiction.  Once you start its very hard to stop.  Some people said to
explain the damage that she is doing to herself, by connecting how she
feels and acts with the gluten slip (I have done this).  Some people said
to make sure she has plenty of gf treats on hand (I have been very stressed
with family matters this summer and did not bake or cook as I did in the
winter, but I'm starting to again and it's helping).  Some people suggested
finding a celiac support group of parents and getting my daughter involved
in one for celiac kids.  Some people said to let her make the choice if she
wants to cheat or keep clean so it doesn't become a power struggle.  All
who wrote sent their strength, support and some even sent prayers which
were all gladly accepted.

We are now facing another challenge.  Today we received the results of our
genetic testing on myself (no markers were positive), our daughter (one
marker out of three was positive - she's the one on the gf diet for a year
with no biopsy) and all 3 markers were positive for celiac for my son (18
years) who just left for college with terrible stomach problems and a rash
that has not let up for over a year.  I am heartbroken to find out that my
sweet boy could have been helped long ago if we had only known what to look
for.  We will now have to break the news to him and schedule him for a
biopsy as soon as possible.  All this in his first year as a premed student
at college.  We still are waiting for results of a food panel we had done
on him.  His celiac blood tests were negative.  He tested positive for
candida and was treated and retested negative for candida.  He was even
tested for parasites but that came back negative too.  Now my husband has
to be tested because our daughter and son (he is technically my stepson,
but I raised him his whole life and consider him mine) have his blood in
common and my tests were negative.

If there are any gastro docs out there on this list in the Chicago area, I
would appreciate your input as to how to proceed with our son and other
family members.  I am assuming I do not have celiac. Am I correct or should
I get biopsied anyway?  Also, how do we go about finding a doctor who is
well versed in reading biopsy results?  Do we assume our daughter is a
celiac now that we know she has the marker and symptoms and gets better on
a gluten free diet?  Should I have my other son tested (he is mine from my
first marriage) or assume he is okay if I am okay?  Should my husband get
all the testing (genetic markers, blood tests for celiac and biopsy)?
Please help.

Regarding Health Valley Rice Crunchems, most people said they were okay
with no ill effects but one person wrote:

"I read something here recently about Rice Crunch'Ems. It said they had
switched from one source for some flavoring. I thought it was brown rice
syrup, but the box in front of me doesn't list that ingredient. Do you have
time to search the archives? What I remember was that the new, gf boxes
would have a 'gf' sticker on them. Haven't seen any. The number on this box
for Health Valley is 1-800-423-4846 (8am - 4pm pst)."

Again thank you for your support, concern and prayers.

May G-d bless you and keep you healthy.

Warmly, Bev Wahl crying in Chicago, IL
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