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There has been a lot of mail heading my way relating to the post about
quinoa and other unusual grains being called "grains to avoid" by CSA/USA.
As I was asked to summarize, I'll do so, but this time without names, as
some people have requested anonymity.
You may recall that I wrote:
"When I came home the mail had arrived. There was the long awaited brochure
about the CSA/USA conference , complete with registration form, etc. I sat
down and read it cover to cover. One of our LIST owners, and many others
who contribute to this LIST were mentioned in the brochure.
Page 24 of the announcement is entitled Basics for the Gluten-Free Diet.
One of the categories on that page is entitled "Grains to Avoid" and there,
printed along with wheat and barley, etc. it says
"quinoa...millet...buckwheat... amaranth."
I am a firm believer in the scientific data which says that those grains do
NOT contain gluten/gliadin. I am perfectly willing to say that anyone can
have a negative reaction to anything - including any of those grains, but
it is NOT a celiac reaction...even if the symptoms seem the same. I am
equally willing to say that some grains may be contaminated - that can
happen to rice, too, but rice is not on the list.
Anyway, the responses have been pouring in, and I'll excerpt them for you:
1/ I agree....there were several things on that list that I found
questionable.
2/ Just because the package says GF, it doesn't mean that it is. I learned
this the hard way. If you learn anything about Celiac with the CSA, it's
double check & even triple check everything. I was diagnosed 40 years ago,
and believe me, honey, CSA is a God-send, perfect or no. Information (in
great measure due to CSA and other such groups) is so much more available
than it used to be; and through their efforts it's getting easier every day.
They do a pretty good job, considering the miscellany of information that
different manufacturers and processors are working with and using for their
definitions of GF.
[To this person I would like to say that it is not just the package that
says quinoa, etc. are gluten-free. The scientific community says so]
3/ It seems there are some grains that are questionable as to gluten
content; i.e., buckwheat, amaranth and quinoa. A well-known cereal
chemist believes these grains are not biologically close to those
containing gluten. I would like to see some explanation given by CSA
rather than a blanket statement; however, be that as it may, these
grains could be suspect due to cross contamination. The likelihood of
cross contamination with quinoa is much less. However, remember that
many celiacs tend to have individual sensitivities. Unfortunately, there
are no "absolutes" in the gluten-free world.
[CSA/USA does not mention cross contamination, it just includes the grains
in their list of things that contain gluten.]
4/ That same page caught my eye, too. Especially that barley crap about rice
processing that leads to every CSA member calling their rice producers.
5/ Worse yet, when someone somewhere condemns something without valid
supporting evidence, the rest of us end up spending years trying to
disprove something we should have ignored in the first place ---or
continue to feel very insecure about the foods we eat.
[This is my primary concern. Our diets are restricted enough, without
being told to avoid things that we CAN eat.]
6/ I must say, I had the same reaction to their list of grains to avoid. The
quinoa pasta is my favorite and I have no reaction to it. I also eat millet,
buckwheat, and amaranth. My main symptom is dh and I itch for hours if I have
even a bit of malt flavoring so I feel confident that the grains I am eating
are gluten free.
I hope these national groups shape up soon.
7/ Depends on in which way these grains were mentioned. While none of them
in known to cause the enterpathic reaction, many persons who are celiacs
often have trouble with the above, whether it be a non-celiac
immune-allergic response, or some other intolerance.
You are right, though... if it is listed along with wheat, barley
without any explanation, it is misleading.
8/ Gail, this is still up in the air regarding cross cotamination etc. Some of
the other products in the health food stores have been improperly labeling
gluten-free products that have barley-malt or alcohol dirivatives that are
questionable.
CSA has always taken a wait and see coservative route, as has GIG.
Some companies are more responsible than others.
Regarding qinoas---I`m still getting conflicting feedback. I expect to bring
it up at conference.
I have been dealing with too many refractory celiac this summer to be casual
about this. One of my members is now dying in Columbia Pres.Hospital ( He no
longer responds treatment and is only 58 years old.) being taken care of by Dr
Peter Greene.
9/ You're not the only one who's had that sort of reaction after reading their
info.
10/ I understand your frustration, but I think it's still useful to apply the
rules of logic. Let's say they are not current on one question (quinoa), just
for the sake of argument. That does not mean they are wrong on anything else.
I believe it is likely anyone will have weaknesses, even errors, in any
complex undertaking. But the sum total package can be quite valuable.
I stay away from quinoa and buckwheat because I am not convinced, yet, that
they are safe. I appreciate having access to the range of views and experience
about them, though.
11/ I can only speak from my mown experience......I was using quinoa in my
pizza crust and making a very good crust but I was getting a reaction after
2 -3 times and finally had to stop using it after which the reactions
stoppeed. You may be getting uncontaminated quinoa and others are not so
lucky. I also had to quit using pasta with quinoa in it.. It sounds like a
similar situation to oats where its been proven that uncontaminated oats
are tolerated very well by celiacs but who can prove what conditions they
are grown and processed under?
So it comes down to a situation where if it works for you great but others
are having a problem, how can a blanket okay be given to something whereby
silent damage can be happening? I attended a meeting of celiacs day
before yesterday and there was a celiac there who never has had symptomatic
disease. She brought along some corn and rice Wasa bread for which I had
been looking for some time. I ate a cracker or two and was reading the
ingredient list to verify corn or rice or both when I spotted "wheat
starch". She was shocked, having accepted the declaration of "gluten
free" on the label. ( It is a European product and their definition of
gluten free is less restrictive, believing that if the protein is removed
it is gluten free) She had evinced no symptoms eating this. I was sick
all day yesterday,. with breathing problems and pain in the esophagus. I
had to take twice the normal inhalers and am still clogged with mucous
today along with intestinal distress. What can I say? I was not diagnosed
until I was 60 and so probably have lots more obvious sensitivity than
someone who has had the disease under control for many years.
12/ I just had to reply to you. I had the same reaction reading the CSA
conference program. I was especially irritated by the prohibition of
canola oil (which I use every day, along with quinoa).
That's it so far. I've tried to be fair and all the selections are cut and
pasted, NOT typed by me.
One other thing, at a CSA/USA conference that I attended a number of years
ago, not one, but two doctors who were speakers told their audiences that
buckwheat and quinoa were safe for celiacs to eat. Evidently the
appropriate officers of the CSA organization were not in the audience at
that time. Sorry, I don't know off hand who the speakers were, but one of
them was originally from India.
It seems possible that there will be more of this tomorrow. I surely hope
the issue will be discussed in Rhode Island at the end of October.
Gayle Kennedy
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