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

After getting advice from Don Wiss and several people more knowledgeable
than I as well as several newcomers, this has grown almost twice as long. I
hope it doesn't grow any longer. Thanks for all the support. I even have an
offer which I will gladly accept from a UK member to change this to fit the
UK and send to members from "across the pond" (I've always wanted to say
that :) Any more suggestions will be enteratained lavishly. -vance

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I have started to send all new members this letter the first time I see
them post to the list asking for help. I have no medical qualifications
other than listening to people on this list and five years experience with
the problem. But several people who know more than I have checked this out
and corrected any glaring errors. I hope this answers a lot of questions
that seem to take new people a long time to discover.

First, you will find the celiac world is complex, and there is a
considerable amount of controversy among celiacs, celiac organizations, and
different  nations as to what may harm us and what will not (the UK, for
instance, says food that has "wheat  starch," which is supposed to have the
gluten removed from it, is GF). Perhaps this letter will help to simplify a
complex issue, somewhat.

GRAINS THAT CONTAIN GLUTEN in order of the amount of gluten in them: Wheat,
rye, oats and barley (sometimes called WROB) are the main offenders. Scott
Adams at <http://www.celiac.com/corn.html> says spelt (or spelta) and
kawmut (or kamut) are wheats. "They have proteins toxic to celiac patients
and should be avoided, just as bread wheat, durum wheat . . . and triticale
should be avoided."  Any celiac or gluten intolerant person cannot eat any
of these grains, ever, the rest of his/her life. There is still some
controversy as to oats.

GRAINS THAT MAY NOT CONTAIN GLUTEN: Different celiac organizations and
individuals have differing opinions concerning the grains below.  Many
celiacs are able to eat some or all of these with no problem, but others
may react to some of them due to individual sensitivities or cross
contamination: Millet, sorghum, teff, ragi, buckwheat, quinoa, and
amaranth. A few individuals who are unusually sensitive to cross
contamination may even react to  rapeseed oil (canola). It might be good
advice to avoid all of these grains if they are new to you till you are
stabilized, and then perhaps try one at a time to see if you react =96-
remembering that some will react within a few minutes, but some rare
celiacs may not react for as much as three days after ingesting an
offending substance. Furthermore, some celiacs may not react at all after
ingesting gluten, but it's doubly important for them to check out
everything before they eat because any gluten may still do terrible damage
to their intestines.

There is also some controversy over what vinegars are GF and which are not,
but I think if you follow this simple guideline you will be safe till you
form your own opinion: "Pure" apple cider and wine vinegars are fine for
us. Many hold that we should avoid distilled, clear, and white vinegars, as
well as "cider flavored" vinegar unless  you are assured that the product
is made from corn and does not use a grain mash or sludge as a starting
material.

Any individual celiac or "pseudo-celiac," due to personal sensitivities may
also react badly to other foods such as corn, cooked tomatoes, or even
rice, so you must keep close track of what you have eaten before each
reaction. It's a good idea to keep a food diary at first, listing
everything you eat till you get a solid idea of what may be toxic to you.
This is doubly important  for those who have celiac children.

Also many celiacs are lactose intolerant because the villi in the small
intestine (which are damaged and flattened by gluten) are the site of
lactase production. Lactase allows us to digest lactose. In this case some
may be lactose intolerant, but sometimes it may go away after they get
their small intestine back in good shape. This may take as long as two
years. The problem here is that the villi may lose their ability to produce
lactase after not doing so for two years. So it might cause a little
discomfort for awhile to reintroduce milk.

Many who are just lactose intolerant may be able to drink Lactaid 100,
which is real milk with all the lactose removed [I think this is right, but
I'm checking]. But some may be sensitive to the protein or casein in milk.
In this case they may have to drink soy or rice milk, if they are not
sensitive to that too. The two brands I've checked on and find to be decent
tasting and offer everything in their line of milk substitutes as gluten
free (GF) are: Pacific (all rice and all soy milk substitutes) and Better
Than Milk (all soy milk subs). For more choice check this website:
http://www.fastlane.net/homepages/thodge/MILKALT.txt

It must also be kept in mind that celiacs have often damaged their
intestines so much that molecules of some substances can "leak" through the
walls. This may cause sensitivities to other foods as well. So it's
imperative to keep the intestine healthy as soon as possible to avoid this.
Because of this "leaky gut," celiacs may come to be sensitive, allergic or
intolerant to almost any food. For further information check:
http://www.healthy.net/library/articles/galland/Leakygut.htm

The question of testing and doctors is of paramount importance. My opinion
is that only about 5 to 10 percent of the professionals in most disciplines
(whether it's doctors, lawyers, professors, mechanics, plumbers, or
electricians) are competent. Many people on this list have written to tell
about  being under the treatment of a GP or even a gastroenterologist who
cannot seem to find what is wrong with them. They have been diagnosed as
having any of a myriad of complaints, or told, "it's all in your head." It
is not. Celiac symptoms can easily resemble those of an astounding number
of other problems and diseases, or celiac can actually cause a litany of
other diseases. That's why it's often called "The Great Masquerader." Only
after finding a good doc who knows something about celiac, which is rare,
do patients find for certain that they are celiac. Good advice here is
simply to contact your nearest celiac support group (look in white and
yellow pages under "celiac" or "gluten") and ask them to recommend a GI doc
that their members have found to be good. If none are listed call CSA/USA,
but remember; they will not tell you about groups that are not affiliated
with them. That simple step can save a lot of problems.

Most celiacs agree that the only trusted way to diagnose this disease is to
have a biopsy of the small intestine WHILE STILL LIBERALLY INGESTING GLUTEN
containing foods. Yet, if you have been eating GF for awhile, the biopsy is
worthless. It is likely to give a false negative. If you have been GF for
awhile, opinion on the amount of time you must eat gluten again  prior to
testing; the length of time recommended varies from three weeks to three
months. Some say you should be as sick as you were to begin with. So if you
are now eating gluten it might be prudent to continue till you have the
biopsy =96- especially since reactions to offending substances are likely to
be far more severe after being GF for even a short while. Many, like
myself, who react too violently to the gluten to ever go back on it for the
required time choose to live the celiac life and diet without the benefit
of a biopsy. Many see little value in the testing. But the biopsy itself,
everybody seems to agree, is much easier and milder an experience than we
thought when we first heard we'd have to do it. They sedate you so you
remain relaxed, and then worm a small tube down your throat to take the
biopsy. Some have said they felt slightly uncomfortable.

Some of the many and varied symptoms and reactions that celiacs and others
who are intolerant to gluten may manifest are: GI distress including
vomiting and chronic diarrhea from mild to incredibly harsh; gas; foul
smelling flatulence; abdominal bloating; mental fogginess; rash
(herpetiform dermatitis, often on elbows, knees and feet); muscle wasting;
increased or decreased appetite; weakness; fatique or lack of energy; and
malabsorption, which causes almost anything from psychological problems or
psychosis and/or anemia to osteoporosis,  anemia, smooth tongue with cracks
in the corner of the mouth, leg cramps from calcium deficiency, and edema
from low blood protein.

Another symptom some celiacs may exhibit is that their stools float. This
may be for either of two reasons: 1. steatorrhea, is when the celiac does
not absorb fat and it passed on in the stool, which floats and leaves an
oily film on the water surface (this tends to suggest celiac rather than
"pseudo-celiac"; 2. when we have a lot of gas and that gas is absorbed into
the stool it floats because it has air in it and does not leave an oily film.

Many, perhaps even most, on the list feel we have found more help here on
the list than from any doctor or especially from any dietitian. Many will
insist that this problem is all in your head: They're wrong. There are some
dietitians who are interested in celiac and can be of some help, but they
are rare. Most do not know.

Here are some Internet sites we have found helpful. Keep in mind that not
all celiacs nor all celiac organizations, nor all countries agree on
everything:
http://www.celiac.com/ = This is Scott Adams site and has many answers to
your questions. He also has a list of "allowed and forbidden" foods that I
printed off and carried in my wallet for over a year till I had pretty well
learned what to watch out  for.

http://csaceliacs.org/ = This is the Celiac Society of America's site. You
may want to order their 89 page CSA commercial products listings. It lists
a lot of brand names of GF products that is a great help at first. Some
celiacs do not trust this list implicitly so they phone and check out
everything before they eat it, but it's a good place to start from, rather
than starting blind with no idea as to what may or may not be GF:

http://www.gluten-free.com/contacts2.html#G = This will give you numerous
sites that you can check on just about anything, including some sites where
you can order gluten free products.

http://www.gluten-free.org/ = Don Wiss's site has a lot of information and
links to other helpful sites.

For Canadians: http://www.celiac.ca = Canadian Celiac Association.

Recommended books: Against the Grain by Jax Peters Lowell; Prescription for
Nutritional Healing by Balch & Balch; any or all of Betty Hagmans Gluten
Free Gourmet series.

Here are some companies where you can order GF food by mail:
Ener-G Foods: http://www.ener-g.com/nrg2.html
Gluten Free Pantry: http://www.glutenfree.com/toc.htm
Gluten Free Mall:
http://www.glutenfreemall.com/cgi-bin/2/webc.cgi/~sadams/st_main.html
Kinnikinick: http://www.kinnikinnik.com/
Miss Robins: http://www.geocities.com/HotSprings/Spa/4003/gf-index.html