<<Disclaimer: Verify this information before applying it to your situation.>>
Comments are from the individual senders.
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One should not assume that the largest Celiac organization in any way
speaks for the Celiac community. Gluten-free living and the group headed
by Andrea Levario put out scientifically accurate information. Last I
checked CSA still was telling us not to eat vinegar. Further, there are
ELISA tests that consistently measure below 20 ppm.
A standard of 200ppm would be disastrous.
(author is a MD)
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I am really hoping they try for a zero or near zero threshold because
the half dozen celiacs I personally know have to try for a zero gluten
level or they get sick. I think if they allow the European standard or
trace amounts, they are going to have a lot of people who are sick some
or most of the time.
Of course the mfr. community wants a higher limit so they don't have to
keep separate equipment, plants, etc. because they will make more money.
But the cookie company isn't living with reflux or worry about bowel
cancer so it is easy for them to be cavalier.
IF we have to eat out, we mostly stick to grocery stores - fruit, some
salad bars, bring our own meat in a cooler, carry nuts, that sort of
things. It is not too high a price to pay when your lovely 13 yr old
daughter is almost dead and you get her back by adhering fanatically to
a gf (now SCD) diet.
We have been at this 5 yrs. I pity the poor person who is newly aware
of celiac and trying to live with all the conflicting advice.
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Some folks would rather look at an ingredient list and others would
rather be told it is gluten free. Hmm. What to do? I suspect we can't
have it all.
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I saw your post on the Listserve today. There's a question you might
want to pose to Mary Schluckebier regarding the parts per million
statement.
CSA claims that their g-f certification program tests for 3 ppm. And,
yet, Mary also says that you can't test at 20 ppm. I would really like
a definitive answer on what standard can be achieved in the US.
However, not only are there two standards in general, but two very
different standards coming from one organization.
Would be nice to have some clarity on that issue.
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one of my pet peeves is people speaking out of "both sides of their
mouths." It's especially disconcerting when so many patients rely on
their "wisdom."
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My general impression, which seems to be supported
based on press reports quoting food manufacturers,
patients, and celiac docs, is that the FDA proposal is
a good thing for the celiac community. It builds on
the labeling law, which was needed.
How is it that only one organization is so far afield
from others in the community, and just as importantly
-- at odds with the FDA. The same organization says
it was fighting for 'gluten-free' labeling, yet now
there is this quote -- Schluckebier doubts
"gluten-free" claims should be allowed because celiacs
know to look at the ingredient list to determine if
gluten is present.
The community wanted these provisions, that's why they
ended up in the FALCPA. It doesn't make sense to now
say this is a bad idea.
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Re: Mary Schluckebier
I think it's about time for me to cancel my membership in CSA. I'll be
writing to them when I get home. This isn't the first time they've taken
a stance that doesn't represent my views...or scientific proof, for that
matter. (In my opinion, it seems they're always against progress. Didn't
CSA stick to the anti-vinegar myth well past the time science proved it
was safe to eat?!)
Thank you for sharing the information with us.
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