CELIAC Archives

Celiac/Coeliac Wheat/Gluten-Free List

CELIAC@LISTSERV.ICORS.ORG

Options: Use Forum View

Use Monospaced Font
Show Text Part by Default
Condense Mail Headers

Message: [<< First] [< Prev] [Next >] [Last >>]
Topic: [<< First] [< Prev] [Next >] [Last >>]
Author: [<< First] [< Prev] [Next >] [Last >>]

Print Reply
Date:
Mon, 24 Aug 1998 11:12:46 -0400
Subject:
From:
George & Gayle Kennedy <[log in to unmask]>
Parts/Attachments:
text/plain (127 lines)
<<Disclaimer: Verify this information before applying it to your situation.>>

Well, friends, here we go again.  This is time consuming, but I hope it
will accomplish something helpful to us and to the rest of the celiac
community, so I'll keep typing and copying.
First, the answer to a question:

+1/ Canola oil is made from rape seed.  This seed is grown mostly in Canada (so
I have been told) in the resting wheat fields.  You know - alternating crops.
The rape seed picks up the gluten and is contaminated.

I have terrible reactions to canola oil and also Quinoa.  Not every body does,
but some do.  I think that is why CSA/USA came upon the blanket area as not
being gluten free.  You can experiment and see what happens, but why would you
want to risk any more damage to the small intestine and be mesiriable.

[The rape seed stays gluten free, but some volunteer plants of wheat grow
up in the fields and are harvested along with the rape seed.  Europeans
have used rape seed oil for many, many years.   GK]

=====
 [This next message came in two days ago and I did not intend to forward
it, but the next letter from the same person is directly involved in the
food issue, so I will now send both letters, edited to save some space.  GK]

+2/ I want to support your indignation about this CSA group! I find them to be
rigid and hidebound and refuse to support anything that they sponsor for the
very reasons you mentioned. When I first heard of celiac disease about 2 years
ago and thought I might have it, I called them and asked whether there was a
support group in my city (Atlanta). I was told no, there was nothing. After
some more diligent research, I found that there is, indeed, a very large and
active CD support group here (about 200 members or more!!). When I tried to
find out why CSA wouldn't tell me about the existence of this very critical
(for celiacs) group, I was told that it was "political." What that translates
into, is that the support group doesn't pay needed monies to CSA for
affiliation which is gains nothing, and, in turn, CSA refuses to tell any
callers about the existence of this very valuable support group. That finished
me with CSA.!!

[second message]
I appreciate your response and I do realize that my comments were tangential
to your question; but it does fit in with the overall feeling (from many
celiacs I know) that while this organization has some merit (the commericial
shopping guide is the best example, even with the overzealous *things to
avoid* section), it appears to be governed by the rule of too much
conservatism, and also some form of punitive behavior exists.. I do not think
it is in the best interests of the health and wellbeing of the celiac community
to withhold critical information about the existence of support groups (or
other valuable information) to retaliate for a group's not being affiliated
with CSA. When I eventually called CSA back to report my findings that there
was a wonderful GIG here in Atlanta, the girl on the phone said, "Oh, we know
that but they aren't affiliated with us." I asked why they couldn't give this
info out any way and she said, "We aren't allowed to do that."  I thought this
was really a terrible approach for CSA to take and I still think this to be
the case today. It is hard enough to get diagnosed with this illness and then
to have the national organization play petty games is really unbelievable.

Thanks for your interest in this subject; it started me off
on a really bad footing to encounter such a poor attitude from CSA and I will
not support them until they do "shape up." (PS I probably would never have
gotten diagnosed with CD if I hadn't found my support group and gone to their
medical advisor, who turns out to be one of the few CD specialists in this
part of the country!)

[third message]

I think it is really good to have a national organization, such as CSA, but I
think it has much room for improvement. What happened to me is probably
duplicated frequently and actually the attitude I encountered could cause
considerable harm to people, instead of good. I don't consider it a minor
thing to have come up against the callousness of the the CSA organization; it
could have essentially cost me my life, since I was deathly ill when I was
searching for celiac help and diagnostic intervention. I had never heard of
this illness and didn't know where to turn or what I was doing. It was a
really a miracle that I found my local support group and eventually the doctor
who diagnosed me. Absolutely no thanks goes to CSA, which is quite a shameful
thing, in my opinion. Part of the problem seems to be that they have young,
somewhat snippy girls answering the phones. These receptionists are not well-
versed about the illness at all and, in my experience, are not interested or
helpful. It would be better to have volunteers who are celiacs than these
seemingly disinterested secretaries. This is just my input and I would guess
there are an army of folks out there who think CSA is wonderful.
====

+3/ Bravo!
====

+4/
You can go to all the experts in the country and the world as far as I am
concerned, but if a celiac gets a reaction - that is worth more in evidence
than any non-celiac expert.

I have had celiac for 33 years and follow the diet religiously.  However I
still get a very vivid reminder when I make a mistake and believe me at that
time I don't care how many degrees a person has, I know what makes me sick.

Let's be reasonable and be cautious in our recommendations.  If celiacs want
to eat these grains, no organization is going to prevent them from doing it,
but if 1,000 of the 6,500 celiacs that belong to CSA get a reaction to
something and report it - I can understand why CSA  cautions other celiacs
that it may cause a problem.
=====

+5/ The only reason I can think that canola might be a question - is it is
grown in wheat country.  Possible contamination?
I get tired of "avoid due to possible contamination".  I try it and if it
works fine, if it doesn't, then I won't ever try that substance again.
I haven't had the guts to try quinoa yet.
====

+6/ I'm sorry you're so upset about quinoa.  All I can tell you is that
I react to it...and to amaranth and kamut and millet.  Maybe some of us
do and some of us don't, and CSA has opted to err on the side of
caution. I really don't know. I just know I can't handle it.
====

+7/the conference is in Rhode Island not CT.

[If you missed it before - perhaps I only sent it to someone in CT - I got
it in my head months ago that the conference was to be in Connecticut.  I
typed Connecticut and not Rhode Island.  I apologize to one and all for the
error.GK]
====
I'm going to stop here and begin a second post, as it's time for lunch.
There were 18 message on this topic this morning.  This takes time for me
as well as for you readers!  Gayle

ATOM RSS1 RSS2