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--- On Sun, 23 Aug 1998 19:47:09 -0500 kipwich <[log in to unmask]> wrote:
> Okay, now I have to add my two cents as I'm getting kinda tired of this
> bickering.
Yes, I can imagine that some people are getting tired of it. I suggest that
those people tune out. But the issue seems important to me, as someone fairly
new to this. It is VERY confusing to hear different things from different
quarters about what is safe to eat.
> Why pick on them on this issue.
Because they are saying something that is different from most other
organizations in the world about something vitally important to celiacs: what
is safe to eat.
> I, for one, cannot tolerate quinoa, spelt , buckwheat or oats (another
> bucket of worms). I appreciate that these items are listed as ones to
> watch out for as it may help confirm symptoms if these items are
> ingested (accidentally or not).
As Don rightly asks, should corn be on that list? Lots of celiacs are
sensitive to corn. How about soy? How about lactose? What are the criteria
for putting a food on that list?
> I think it all boils down to using common sense and listening to your own
> body and its reactions.
No it doesn't! There are celiacs that are *asymptomatic* and always have
been. There are *lots* celiacs who don't have outward reactions to small
amounts of gluten - if those people go by their bodies' reactions, they are in
trouble. They must rely on the advice they get from experts. So what do they
do if those experts don't agree?
>If it bothers you, don't eat it!
Uh huh.
> If it doesn't, you make your own choice.
How do you suggest making that choice? On what basis? To whom should I look
when making that decision?
> The one thing about CD is that it is a self monitering illness. We have
> total control over what we do and do not consume. Let's quit putting the
> responsibility on others and lists and start taking charge of our own
> health and well being.
Are you suggesting that everyone become a cereal chemist? Why does it seem to
be too much to ask to know *why* a certain food is on the list of
gluten-containing foods? If that reason is "some celiacs react to it" and not
"it has been shown to contain gluten", I'd like to know that.
Also, which grains (and non-grains that are used similarly to grains such as
buckwheat, quinoa, and sorghum) have been tested?
> If you disagree with CSA, don't support the organization or try to become
> active in the chapter nearest you and inact change if it is warranted.
I think that participating in this discussion is also a way of trying to have
an impact on the organization.
> My dad always told me to be a part of the solution, not the problem. I
> still think it is great advice.
The people dissatisfied with the lack of agreement on this issue ARE
attempting to be part of the solution. If no one says anything, how do the
organizations know there is dissatisfaction? Concrete suggestions have been
made, it hasn't been all complaining. It seems to me that *you* are the one
advocating a passive stance. ("They are doing a good job. Leave them alone.
Don't complain.")
Laura
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