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From:
George & Gayle Kennedy <[log in to unmask]>
Date:
Mon, 24 Aug 1998 11:55:32 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Here we go again:

~1/ Personally, I stay away from these "alternative
grains", so have no personal experience one way or another.  However, it does
seem that enought science should have been done to provide analysis if not
answers and it is disappointing that it appears that it either has not been or
the expalanation to those affected by it is unpursuasive enough to continue
uncertainty and confusion.  There ought to be a grant out there some where to
pay some university to develop and evaluate the  necessarya data.
====
~2/ When you have problems, your DISMAY may then turn into what is
called toxicity or illness.
Thanks for your sharing.

Leon H. Rottmann

[This is the only message I have chosen to include the sender's name.  Leon
Rottmann is, I believe, the founder of CSA/USA.  I have copied his complete
letter.]
====
~3/ One of the respondents to your quinoa & other grains topic mentioned that
the European definition of gluten free included allowing the inclusion of
wheat starch in a gluten free product when the protein had been taken out.
This would seemingly tie into the reply I received re the wheat starch in
the So Good soy drink. According to the product labelling, the product
originates in Australia, so perhaps they follow the European definition of
gluten free, & maybe I'm one of those people who is quite sensitive to
miniscule amounts of gluten.

Let me know if you agree or disagree with this reasoning.
====
~4/ It is not a problem with the CSA.  They are correct.
The problem is with companies that put gluten free on their products when
they really don't know what gluten free means.  I never trust companies.  We
need to know what gluten free means so we can be careful shoppers.
====
~5/ I was under the understanding that buckwheat, quinoa and amarath are
milled in plants that *only* mill those grains thus leaving no room for
cross contamination.  I eat all of those grains without any reaction.  I
have CD/DH and I get more reactions from stress, maybe there's gluten in
that.

If people are having what they believe a reaction to those grains, then
maybe the scientific community that states that they know what causes
this disease don't really have all of the information.  There's also a
possibility that there are some of us that appear to have a reaction to
what they believe to be a gluten reaction.

The scientists have proven that these grains do not contain gluten.  Then
where is the reaction coming from?  Possibly these reactions are to some
of us as cat dander, cut grass, peanuts, sesame seeds, etc.  The obvious
solution for USA/CSA to be responsible and; 1) not erroneously state that
these grains contain gluten, 2) mention that some people may have an
unfavorable reaction to these grains, even though they do not contain
gluten.
The "we think" ideas just don't cut it for me.
====
~6/ I think that instead of squabbling over quinoa good/quinoa bad ...
we should require companies to precisely identify each and every
ingredient and let us celiacs then decide on our own.  As it currently
is, the celiac community and our loved ones are embarking on the
Great Silent Boycott  .... simply not buying products that have
vague ingredients.
====
~7/ Twol loaves of jowar bread in our bread machine (using the jowar flour
peoples recipe) have produced no negative reactions in our household.
====
~8/ First of all the convention is in Providence, RI.  You are too critical.
CSA really helped me when I was first dx and was really lost.  You have to read
labels on your own -- and use their guide as list, but you must conitnually
check on GF products.  I plan to attend the convention -- I am sorry you will
not be there so we would have a chance to chat and get to know each other.  Good
luck on your search for GF products -- it is not an easy road to follow.  I
believe that the USA/CSA does their best to guide one on the best products.  I
would love to hear from you on this subject.  I was dx April 1996 and have been
to 2 conventions so far --- there is sooooooo much to learn.
====
~9/ Canola/RapeSeed Oil is the oil derived from the seed of a
plant in the cabbage family.  (Any beekeeper - or
ex-beekeeper - can bore you stiff with this as it is the
biggest source of low quality honey going).  It's not
possible that there will be gluten FROM THE CANOLA in the
oil but this is a commercial crop, and there is likely to
be cross-contamination from previous crops on almost every
occasion.  Whether that means that enough gluten/gliadin
will pass through the purification process to matter is a
different story.  Gluten itself is effectively insoluble in
the oil, whereas gliadins are certainly soluble in some
organic solvents so can be expected to be present but what
precise quantities is a different matter.  Certainly we
don't hesitate to use it and Karin has no problems with it.
====
~10/ Since I posted a complaint about the bickering about quinoa I thought I
would email you personally since you were the one who initially posted this
question/complaint.

Could you please consider still going to the conference and raising your
hand during  any one of those seminars about food?  Maybe you could call
them on the carpet about the discrepancies and irregularities in the status
of these "questionable" grains.  That would force a discussion amongst
"professionals" (I think) and in a public venue.  Then if you would be nice
enough to report back to the list that would be great.

[I am not going, but I hope others will accept this idea and follow through.
I also hope that we will have a report from someone on this LIST when
the conference is over.  GK]
====
~11/   I have used quinoa flour and reacted to it so I assumed that
CSA was correct in their statement.
I also have many other food restrictions besides gluten so I understand what
you are saying.  Maybe it was not a gluten reaction but a sensitivity to
these products.
====

That's all folks.  If any of you have stayed with me for so long, thanks
for caring.
Gayle Kennedy

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