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Selected comments from communication of Laura Johnson-Kelly

>However, I think it is wise for doctors and other dietary specialists
>to point out that many celiacs do have problems with millet and
>buckwheat, just as they point out that many celiacs have problems with
>lactose intolerance.  Maybe these foods do need to be removed from the
>"never eat" lists to the "eat at your own risk" lists, along with dairy
>products, to allow for these individual differences.  Saying that people
>"shouldn't" react to eating millet and buckwheat when some obviously do is
>too terribly reminiscent (at least to me) of the doctors who say that an
>individual can't possible have cd because it is such a rare condition, or
>the individual doesn't show stunted growth, etc. etc.

Response from Don Kasarda:

I would mainly be concerned about an implication that responses to
buckwheat and millet (an implication that I do not attribute to Laura)
have something to do with celiac disease. They may or may not, but
there is no scientific evidence that they do and some that they do
not--at least for buckwheat.  People of all sorts are sensitive to all
sorts of things.  I feel that celiac patients should be wary of
attributing all their own personal sensitivities or problems to their
celiac disease. For example, lactose intolerance is certainly a problem
for many people who don't have celiac disease.  I suspect that because
of somewhat indiscriminate testimony, large numbers of people with
celiac disease are avoiding many foods that are harmless for them.
Perhaps some sort of disclaimer would be helpful:  "I have a problem
with this or that food.  I don't know if this has any connection with
my having celiac disease.  It may or may not, but you may want to watch
out for it."

Along these lines, I think it would be appropriate for any celiac
organization that puts out a list of foods to be avoided to have some
sort of justification on file for each food proscription on the list
and be prepared to make that justification public upon request.  I
don't think the fact that several people said they had a problem with
eating "X" is sufficent. If it is NOT possible to say at the very least
that 100 people or more (preferably more) with biopsy-defined celiac
disease (perhaps these days, antibody-defined might be acceptable) were
polled randomly and 20%, or 50%, or 90%, whatever, said they had a
problem with X, then X should not be on the proscribed list. The grain
alcohol/white vinegar proscription is one example where I doubt there
is any justification.  Conversely, if an organization cannot offer any
public justification for a proscription, then it should remove the item
from its list or put it in a "possible concern" category.

I have no problem with scientific studies of buckwheat, millet, or any
other suspect food in relation to celiac disease, but properly done
studies are enormously expensive and the problem of finding a suitable
number of well-characterized celiac patients to participate in any
study is great (they would almost certainly have to submit to several
biopsies and be followed closely for months).  Accordingly, I am not
too optimistic about such studies being carried out.