<<Disclaimer: Verify this information before applying it to your situation.>>
Dear List Members. This is LONG, but worth while. If you don't have time
to read it all, read the introduction and then Don's quote near the end. He
wraps up the important issue in one sentence.
Background: Bill Elkus, one of the LIST owners, sent a posting to the
list in which he said, among other things, "The major celiac support groups
can't get their acts together re: vinegar, alcohol,quinoa, teff, amaranth."
When I wrote back to the list, I arbitrarily added buckwheat to his list.
In that post I said, "Quinoa, buckwheat, and amaranth have been tested by
food chemists and found to NOT contain the type of gluten/gliadin that
causes celiac disease. Those seeds or fruits are from plants that are not
biologically related to wheat, barley, rye (and maybe oats)."
[Vinegar and alcohol became separate issues and I will send a summary of
responses regarding them on another day, but here is a summary of the
response from the list regarding quinoa, etc..] (No one wrote anything
about teff.)
From John, "I've gone out on the limb and tried "The Ultimate Meal"
I did not try this product for so long because of the Quinoa in it. Well I
found out that the reason it's a nono for some is because it is grown
together with wheat. Therefore it get's contaminated. Well I travel alot
and need something quick and Energizing so I kept coming back to this
product. I finally called the company and they explained to me that (like
the label reads) it is gluten free. I tried it and it works great...just
what I needed.
[John, I don't know what "The Ultimate Meal" is - fill us in.
From Bill (a different Bill, not Elkus) wrote, "At any rate, I wanted to
tell you why buckwheat remains on my own'don't eat' list . . . It remains
there because it is often grown in fields that had wheat the previous year.
This means that wheat grains from the previous year will also be growing in
the field, so contamination is possible. Like you said before, I don't
want to win that lottery.
To which I replied: Re: buckwheat... if you buy whole kernel buckwheat
and go over it the same way one must go over lentils, for instance - a
handful at a time, picking out any non-buckwheat seeds - and then rinse,
you eliminate the possible contamination. My husband has worked with a
buckwheat company and this has worked for me. I don't presume to tell you
what to do, but if you long for something new to eat, you might give it a
try. Good when cooked in chicken or beef stock. However, remember to buy
the whole buckwheat, not the kind that is cut into smaller pieces
(sometimes called fine granulation, or comparable terms).
From AST Preferred Customer, "I answered Bill's post but did not copy the
list. My main concern is the "turf" wars that are occurring. I have
learned over 20 years that if I think something bothers me-it does, no
matter who says it is safe. Our diet is difficult enough. I know I
improved after using only GF pickles.
I think our key words should be cooperation and empathy. The multiple
associations also complicate things, as do the various lists. I can
uncerstand the reluctance of some of the manufacturers to definitely
classify a product as GF. If you can get a huge court settlement for hot
coffee you dump on yourself, you can bet they are smelling lawsuit and some
are definitely vague. I even had a Taco Bell person tell me all of their
items are GF- I wish. I wonder if maybe we could someday have just one
national organization and the ones in existence could serve geographical
areas. Maybe we can do something to help our situation-any ideas?
Maybe we can do something to help our situation-any ideas?
From Tracey "I'm just new here [he he, new enough to jump into the frying
pan!] but it seems to me that the less contentious way out -- and maybe
easier in the long haul -- is to not necessarily reach an agreement about
oats or quinoa ... but to mandate that food companies stop the annoying
"and other natural ingredients" practice ... that companies should be
required to label precisely what goes into their products, period.
I don't even see this as a celiac issue as I do a food allergy
issue. A good friend of mine is highly allergic to onions --
anaphalatic [sp?] shock kind of allergy -- and she is forever
finding onion bits in things, calling the company and having
the company say "oh, that was the natural flavoring in
our fine product" ...
Back on the celiac issue though ... again, as a 2-month young
newbie, I only know vaguely that some associations say
yay to some things and others say nay. It seems like it
would be eaiser in the long to require food companies
to list every durn thing that goes into making their product,
down to the microgram. that way, we can all make educated
decisions w/out this sit-n-call-the-800# round robin game.
From Mary, " I agree with you and Don. Facts are facts.
I'm getting tired of people messing up my facts! Imagine what the food
companies are going through!
From Tami, "Sometimes I feel I am raising a hypochondriac (as well as building
neuroses of my own). It has struck me recently that it is so easy to
blame anything and everything on this disease. Every time my son has
problems concentrating, "abnormal" behavior at school, or an upset
stomach, my first thought is "celiac reaction." But we are *so* careful
about his diet. Well, you know what? Every other kid in the world has
bad days, bad moods, and catches viruses, and it's all perfectly normal.
Sticking to a gluten-free diet and avoiding cross-contamination is
nearly a full-time job. Why do we make it worse by suspecting and
avoiding things that scientists say cannot possibly contain harmful
gluten? Even when it feels like a celiac reaction, it is possible it's
not. As so many know from personal experience, celiacs--like the rest of
the population--can have other conditions. I don't have celiac disease,
but am lactose intolerant. My best friend doesn't have celiac disease,
but is allergic to barley. Every reaction in a celiac is not necessarily
*caused* by CD.
From Barb, " I cook most everything from
scratch, but we still get occasional reactions, the small ones are
usually waking up in the night with tears and crying out desperately. I
appreciate the hard work our celiac organizations are doing. I agree we
have to stick together for these most sensitive individuals. Otherwise
we will be relegated to a life of fear. Who knows where the next trace
of gluten may come from?
I will be watching for more info on buckwheat, quinoa and amaranth. I
rotate these grains daily, and I would love to be able to rotate my son's
diet to have less corn and rice also. I don't have celiac, but I have
certainly benefited from eliminating gluten from my own diet. Because he
is so sensitive, we want proof that these grains are OK before we
introduce them.
From Bev, " I cannot help but think that sometimes it
is worth it to ere on the side of caution. When my daughter was first
diagnosed, we did try using those alternative grains and vinegar, but her
reactions were so severe, that we decided to go the conservative route. I
think that you can never be too careful when it comes to health issues, and
if in the future, you decide to try to be more liberal, so be it. If that
works for your situation, more power to you, but if, like in our case, it
doesn't, we wouldn't know where to look for the gluten if we were not told
that these items could potentially pose a problem. I respect the
individuals decision to be in charge of their own health, but as a mother,
it's my duty and responsibility to make sure my child is healthy. The
information that these organizations provide is essential to helping us
make the best possible decisions for our loved ones.
From Connie, " I think and feel about this whole situation just as
you and so many of us in regards to these other grains containing harmful
glutens and that there are those that are simply have an allergic
reaction.
I afraid that so much os what you have stated will fall on deaf ears
though. Some months ago I went through this with Diane Paley, East Coast
Group, and if it is not written in her little OK list it is bad. Very
narrow thinking in my opinion. I am not the type of person that just
takes someones word for it I will check it out also.
Well, those that don't believe that there is a possiblity of these other
grains being OK are missing out on a lot. I'm extremely affected by the
smallest amount of gluten but I've never had a reaction to quinoa,
amarath, or buckwheat. I do not use distilled vinegar though.
From Karen, "I take the position that maybe someone can scientifically
verify that they do not have gluten in them, but I would certainly think
that there must be a reason that the CSA says that they don't recommend them
for people with CD. I do agree that it should be stated if they do not
contain gluten, that it should be specified that they do not contain gluten
but some people with CD may have problems with them. I with that someone
would get this cleared up. I am super cautious and do not use canola oil or
guar gum either, as it has been stated that they can have a laxative effect
in some people with CD. I don't try anything controversial, as I am having
enough problems with the things that are supposed to be GF.
From Barb, "...then there are people like me who only will show a reaction
to ingestion of gluten if it is continued for days and days. It took me
until day 6 of a recent gluten challenge to develop any symptoms which were
mild compared to many people as I only became nauseated and bloated. I
never developed my rash as I didn't stay on the challenge long enough.
Unfortunately,I can't depend on reactions to let me know if damage is being
done so I am careful about everything. When I first went on the diet, I could
depend on the rash returning within 1 to 2 days if I ingested gluten, but I've
learned through my recent gluten challenge that this doesn't work any more.
As a result I'm a lot more careful.
It sounds like we need more research done on a lot of our foods as far as what
really causes villi damage as much of the diet is based on first hand
reactions and not scientific reactions.
From Don, "I consider it an embarrassment to the worldwide celiac community
that our largest celiac group thinks these grains (along with buckwheat)
have gluten. They have no evidence to support their position, yet they
refuse to budge."
There you have it, folks - as of 9:13 AM EDT, on Saturday, April 11th.
This is my first successful attempt to cut and paste and make a summary.
For me it has been like learning to ride a bicycle, and creating this post
has taken FOREVER.
On the other hand, it has been gratifying to receive so many carefully
considered answers. I realize it would have been nice to say, "From Barb
in Indiana, etc... I'll do that next time. I did not ask for permission
to include names, so I did not feel at liberty to include that information.
For me, the final quote is the most important. Let's ask members of this
LIST who belong to one or another of the five major celiac support groups
in the USA to ask THEIR organizations for the reasons they have items on
their lists of gluten containing foods, when those foods have been
scientifically proven not to contain the kind of gluten/gliadin that causes
celiac disease symptoms. Perhaps we can make some progress in having a
unified approach to food lists.
Sorry this is so long. Happy holiday to one and all. Gayle Kennedy,
Ithaca, NY
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