<<Disclaimer: Verify this information before applying it to your situation.>>

Hi,

I am shaking so hard I can hardly type this email I am so upset !!  I am SICK
AND TIRED of CSA getting bashed!!  I belong to this organization and without
their help I would have been lost.  When I was diagnosed in April 1996, I was
82 pounds.  CSA was the ONLY organization that came to my assistance.  I took
them as a guide, but as with everything, you must educate yourself.  I take
exception to some of the statements put on this listserv.  You must learn to
read and then make your own mind up as what you want to believe.  You must
remember some people want to just eliminate most gluten and then there are
some of us who want to eliminate all possible gluten. That means to me to
avoid avoid avoid even those products that might have any possible reaction
for me.  I avoid products not only because they contain gluten, but also
because they have not been completely tested yet and also avoid any products
that I feel may contain gluten due to cross contamination.  For me this is
the MOST important job of my life. We must remember that we are a listserv
for Celiacs and that many  Celiacs have other products that they are also
allergic to.  You cannot just assume that because you have a reaction that it
is connected to gluten.  When I read my CSA product book, which I agree is
very out of date, I do not take these products to be a guarantee of what is
safe or not.  It is only a possible guide for me.  I make phone calls
everyday to companies to check on their gluten-free status.

Now as to Guar Gum -  CSA does not say it contains gluten. Rather, it states
that "guar gum, although gluten-free, is often used to facilitate diarrhea or
relief from constipation and hard stools.  Because of these potential side
effects, guar is not recommended." ( from CSA Commercial Products Listing -
book, page 6)  Since I am a person who has soft stools, I do not feel it is
in my best interest to add any extra problems.  I know that xamthum gum is
expensive, but it does last.  It cost no more than four 12-pack pops, a
carton of cigarettes, or 2 bottles of wine and xamthum gum will last longer.

This next statement comes off the listserv-

>From Diane Holmes post dated 4/18/99

>I have to second Don Wiss's comments about CSA perpetuating inaccurate
>information.  It is so frustrating to have the largest CD group in the
>country dealing out garbage about what contains gluten and what does
>not.  CSA continues to insist that things like guar gum, canola oil, all
>alternative grains, distilled vinegar and spirits and more contain
>gluten.  These items do not!

My comments on this issue-
  Canola Oil  - CSA states "Many children, older adults, and sensitive
celiacs do not do well on Canola Oil.  Until more exact research information
is known, we do not recommend the use of Canola or its several by-products by
Celiac patients." (from CSA Commercial Products Book, page 26)  I do not take
this statement to say that Canola Oil contains gluten.  With so many oils on
the market that have been tested and safe, it seems logical to me to use one
of those oils.  I live in North Dakota and have contacted several  grain
elevators and talked with employees that tell me the grains are stored one
after another with a cleaning in-between.  It stands to reason to me that if
I will not buy a product because of cross contamination (say crackers made in
a factory due to cross contamination) then I might want to think about Canola
Oil.  CSA statement is a judgment call.  They just do not recommend - they do
not say it contains gluten!

Alternative Grains - The alternative grains they list are such grains due to
no formal research - In the CSA Commercial Product Book they state why they
do not recommend each grain.  They are recommending avoiding, not stating
they contain gluten, unless the product does contain gluten.  Each individual
has to decide what they want to do about a grain.  I happen to be a VERY
sensitive Celiac - it is not worth my life to try products which may shorten
my life.  I find that there are many grains that I can eat and I am thankful
every day for this.  Before I was diagnosed as a Celiac, I had never used a
single grain other than corn, oats, enriched white flour, and cornstarch.
Just think of all the grains I have learned about and now use.

Distilled vinegars - This product is also listed as a product to avoid - In
CSA G-F Commercial Handbook, CSA states "Avoid distilled clear and white
vinegars unless you are assured  that the product is made from corn and does
not use a grain mash (or nondefined grain sludge) as a starting material".
Again CSA does not state that distilled vinegars contain gluten, they are
just suggesting for you to avoid until you are sure that it is GF.  This is
one of the reasons that I do so much product research.

I almost died at the age of 51 in 1996.  I eat to live not live to eat.  My
motto is that if I do not know what is in the product it does not go in my
mouth.  There is PLENTY to eat without risking my health.  I am thankful
every day that CSA came to help me live my new life as a CELIAC.  So please,
no more bashing.  I know that there are many organizations out on the
Internet to help us.  Use all your resources and then make up your mind as to
how you want to live your life.

Jane
Fargo, ND

**If you want to chat on this subject feel free to email me not to the
listserv***
**I will summarize***