<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Friends,
The following text appeared in the January/February issue of the Houston
Celiac-Sprue Support Group newsletter.  I hope reading will help to put
questionable issues into perspective for many.

Editorial:  What's My Diet?

 I have attended every CSA/USA conference since plus some other
national conferences since my rediagnosis of celiac disease in 1998.
I have learned a lot of basic information about the disease and diet
issues.  However, among all the details there are still some
contradictory and confusing issues remaining.  I want to discuss them
with you.

 Unfortunately, there are few absolutes in dealing with our diet.
Yes, we cannot eat wheat, barley, rye, spelt, triticale, and kamut,
for certain.  We know that oats has far less "gluten" than the others
listed.  Various researchers have and are making studies on celiac
patients with regard to ingesting oats safely.  The studies I have
seen have seen had small numbers, with patients dropping out of the
study for questionable reasons, and there have not been any long- term
study results.  All researchers and physicians are still saying that
eating an abundance of oats is probably still not wise, although we
don't know about small amounts (like one bowl of oatmeal a week).
Eating oats is a personal decision, but I personally don't do it.
Other alternative grains like amaranth, buckwheat and quinoa are not
biologically close to the wheat family.  Technically, buckwheat and
quinoa are fruits.  Some quinoa manufacturers have tested their grain
for gluten and found none.  Quinoa grain has an outer shell, saponin,
which is bitter and can have some adverse digestive effects, if not
processed correctly.  However, we now have such a world of great
gluten-free recipes using basic rice, tapioca, potato starch, bean and
sorghum (Jowar) flours, that we really do not need to invest in any of
the other alternative flours.  This is a personal decision.

 Jean Guest, R.D., talked at the CSA conference about certain
prolamine sequences in connection to the grains that do contain
"gluten."  She found research to support that certain prolamine
sequences do occur in wheat, barley, rye and probably oats to a small
degree.  However, other alternative grains like amaranth, buckwheat
and quinoa have not been tested in terms of prolamine sequences.  Dr.
Ernst said to the Houston chapter in November that not only do grains
have to have certain prolamine sequences to be toxic for celiacs, but
they must have certain shapes to be recognized by the cells.  Jean did
not address the shape issue.  This issue concerning prolamines is
early in research and does not yet tell us a complete picture of
gliadin in terms of avoiding grains.  The best information we have at
this point is from cereal chemists who say these grains are not
biologically close to wheat.  Experimenting with alternative grains is
still a personal decision.

 CSA included an article about "lectins" in the packet of registration
material, which basically warned people that food lectins might be
harmful to all people, especially to people with compromised immune
systems, notably seniors or young children.  The article said plant
lectins are capable of damaging the intestinal epithelium.  Lectins
are found naturally in many common foods like potatoes, tomatoes,
grains, legumes, many fruits, and canola oil.  That is why CSA
believes canola oil is not good for celiacs; but it is not a gluten
problem.  However, cooking at high temperatures breaks down the lectin
effects, and most foods are cooked.  It is nice that CSA shares
research with us that might affect us as celiacs; however, I believe
this sort of information serves only to scare us unnecessarily and
further limit our diet at this time.  If you find you feel better
without ingesting lectins, fine.  This is a personal decision.

 I have seen more and more research and documentation from chemists
these past couple of years about the distillation process in terms of
gluten contamination; i.e., there is little, if any, toxic gliadin
left after the distillation process.  Ann Whelan for Gluten-Free
Living newsletter has researched distillation and finds that "the
first reason why vinegar is not likely to be a problem for celiacs is
that wheat is rarely used as a starting material."  (However, I
consciously avoid malt vinegar.)  Ann's second reason is that "even if
wheat was used, the gluten peptides would not survive the distillation
process.  Thirdly, even if something went wrong and gluten peptides
did survive the distillation process, they would still not be harmful
to celiacs.  Hands-on scientists who have an extensive scientific
knowledge base and who have done specific research that speaks to this
question say vinegar is safe for celiacs."  As Nancy Falini, R.D.  has
reported in another article reprinted in this Newsletter, celiacs and
others with chronic digestive inflammation can have general irritative
affects in the intestine from alcohol.  People can have personal
sensitivities to many food substances, aside from gluten.  I
personally order a vinaigrette dressing when I am eating out, to
seemingly no effects.  Not worrying about the salad dressing has made
my restaurant outings easier.  If you find difficulty eating some food
or ingredient, avoid it, but don't blame every digestive upset on
celiac disease.  I have never liked beer, as a celiac I personally
would not drink it, but wines are just fine.  An occasional Margarita
(not from a powder mix) is great, too.

 I believe it may be s wise for DH'ers to avoid topical products with
wheat or gluten ingredients.  Most doctors would say that celiacs do
not get any damaging gluten from topical lotions/shampoos.  However, I
do try to avoid any hair products or lotions with possible gluten
contamination because there are so many other good products available
without gluten.  Why push the issue?

 I am not a very sensitive celiac or I adhere to my GF diet remarkably
very well (or both), although I do get into some inadvertent gluten
from time to time (perhaps twice a year) with bathroom consequences,
fortunately short term.  I avoid all wheat, barley, rye, spelt, kamut,
triticale and oats products, including those with wheat starch.  I
look at all labels.  I avoid modified food starch, HVP, TVP and HPP of
unknown source.  I don't cook at home with canola oil, but I don't
worry if it is just one ingredient on a label.  I don't worry at all
about lectins.  I don't worry about vinegar (except malt vinegar) and
alcohol.  But I am careful of bouillon and prepared bases.  I
investigate questionable sources of ingredients.  I don't go out of my
way to avoid guar gum.  (Guar gum can have laxative effects in more
than small amounts, but some vendors do use a little of this
ingredient.)  I don't worry much about MSG, but I avoid an imported
product if it has MSG, which is also probably from a questionable
imported source.

I am not sensitive to dyes, that I know of, and don't pay any
attention to them.  I note whether unknown "artificial or natural
flavorings" are at the end of a list of ingredients, which means the
amount is the least amount, and I might decide to ignore these
ingredients.  In terms of medications, I investigate thoroughly all
those I take regularly and for long term.  If I need a medication for
limited short term (like 1 or 2 pills), I don't worry about the
ingredients.

 I cook a lot from scratch at home.  I call manufacturers.  I use GF
mixes from reliable GF vendors.  I question and question in a
restaurant to be as safe as I reasonably can.

  I follow the gluten-free diet to the best of my ability.  I do
believe persistent failure to adhere to a strict gluten- free diet to
be counterproductive to overall long-term health.  Your diet will
probably be slightly different from mine, depending on how sensitive
you are.  And that's okay..  We have to live reasonably but wisely in
this gluten- filled real world.  Just keep up the good work.  If you
do have problems, consult your personal physician, a knowledgeable
dietitian (our chapter dietitian Elaine Weyant) or me.  A detailed
food diary is helpful for such a consultation.

 We hope to have a Blood Screening Day for members and relatives later
in the year.  This would be a good time for members to test how good a
gluten-free diet you really have!

 I hope I have helped put some of the questionable issues into the
context of yours and my daily life.  Good luck, dear friends.  HAPPY
NEW YEAR!

Janet in Houston
Celiacs Helping Celiacs
[log in to unmask]