<<Disclaimer: Verify this information before applying it to your situation.>>
 
Nina at <nina @ AMUG.ORG> said:
 
> As a newly diagnosed Celiac, what I am finding MOST frustrating is the
> the frequent inconsistency in information from reliable sources.  One
> book or pamphlet will say one thing about an item and then a different
> one will say another.  There are inconsistencies in answers from
> manufacturers and restaurants, too....How do we know that the person
> from the manufacturer who is giving us the answer really has the
> background to tell us if their product truly is 100% gluten-free?  How
> many times?  How many ways do we have to check on an item before we
> can feel secure that what we are eating is safe?....So, what I see
> here is living with a constant concern that you are unknowingly making
> a mistake which can damage your body without even your knowledge!!!!
> Am I making a mountain out of a mole hill here?
 
This is a very well written exposition of some of the practical problems
of living with Celiac Sprue!
 
A few suggestions from our experience as listowners:
 
1) You cannot just call up a manufacturer and ask if the product is GF.
Often the customer rep on the phone has little idea what gluten really
is, much less the many ways it can be introduced into foods.  You need
to get them to read each ingredient, and compare it to your list of
questionable and prohibited ingredients.  Then you also need to work
through how the product is processed, to try to determine whether gluten
is introduced as a non-listed ingredient (example:  barley enzymes in
Rice Dream) or as a contaminant (example:  rice flour milled immediately
after wheat flour without proper cleaning of the equipment).
 
2) The more often you are going to be eating something (and the greater
the quantity), the more time you should spend becoming comfortable with
its GF status.
 
3) It is an unfortunate fact of life that ingredients can change without
notice, so every time you buy a product, check the label for
surprises.
 
4) Subscribe to a service which collects and distributes GF status
information.  Jim Lyles <[log in to unmask]> is associated with a
support group in Michigan which publishes an excellent guide, other
groups do too.  But these guides are not guaranteed 100% accurate,
consider them a starting point.
 
5) It is another unfortunate fact that the national support groups do
not even agree on which grains are safe for Celiacs!  Some claim that
certain exotic grains like quinoa are not GF (or are so questionable
that they must be avoided).  The listowners point to Don Kasarda's
"grains" letter, available by sending an e-mail message to
[log in to unmask] with the body GET CELIAC GRAINS -- our
personal opinion is that these grains are safe.
 
6) Finally, one of the principal purposes for our CELIAC discussion
group on the internet is for celiacs to share their knowledge and
experience in finding GF food.  Recently there have been many "naked"
posts claiming that a particular food is, or is not, GF.  We ask
everyone to recall the following paragraph from the welcome message.
 
WEL> One of the main benefits of this list is that celiacs can share
WEL> their knowledge on maintaining GF diets.  On the other hand,
WEL> spreading information which is not well-founded can cause confusion
WEL> and distress amongst our members.  Therefore, before making such a
WEL> post, please be sure that you document your sources!  Don't make a
WEL> claim that an item is, or is not, gluten free until you can back it
WEL> up.  When you do post it for the group to read, please include the
WEL> reasons, including the phone number/address, the date you received
WEL> the information, and if possible the name of the person you
WEL> contacted.
 
Bill Elkus
Los Angeles
For the Listowners