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

Hope you don't mind my sending this one more time, but it is considerably
different. I think I have most of the glaring errors corrected, and about
half that commented on the length wanted it shorter, the other half wanted
it longer, so I think I've probably got it about right :) Any other
comments about accuracy will be welcome.
-vance


I arrogate to send this letter to new members the first time I see them
post to the list asking for help that I think is covered in this letter. I
hope this is a help rather than an imposition. 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 the suggestions
made in this letter are pertinent to your interests.

The question of testing for celiac disease and what doctor to use is of
primary importance. There is a common opinion that only about 5 to 10
percent of the professionals in most disciplines (doctors, lawyers,
professors, mechanics or electricians) are competent. Most
gastroenterologists may see less than three true celiacs in their lifetime
practice. Several celiacs in this discussion group have had experience with
going to several doctors, none of whom can seem to find what is wrong with
them. They have been diagnosed as having one or more of a myriad of
complaints -- or dismissed with: "Oh, it's just irritable bowel syndrome,"
or "It's all in your head." It is not! Celiac symptoms often resemble those
of an astounding number of other problems and diseases, mostly digestive
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 rare
good doctor who knows something about this disease do patients find for
certain whether or not they are celiac. A doctor must THINK the possibility
of celiac disease before she can diagnose it.

Good advice 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 no groups
are listed call CSA/USA (Celiac Sprue Association), (but remember, they
will not tell you about groups that are not affiliated with their
organization). Or you can ask on the list here if anyone in your locale had
had experience with a good celiac doc. That simple step can save you a lot
of time, money and problems.

Most celiacs once agreed that the only trusted way to diagnose this disease
is to have a biopsy of the small intestine and the blood screening antibody
panel (3 tests) WHILE STILL LIBERALLY INGESTING GLUTEN containing foods --
then have the blood sent to a reputable national laboratory experienced in
celiac testing. If you have been eating "gluten free" (GF) for awhile, the
biopsy and the blood tests are worthless. They will almost certainly give
false negatives. If you are liberally ingesting gluten prior to the testing
and you register negative, have the tests and biopsy sent to another lab
after finding out,  from the celiac organization of your choice, which labs
are competent to perform this test. If you have been GF for awhile,
opinions vary 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 insist you should be as sick as you were to begin with. So if
you are now eating gluten it is 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 celiacs who
react too violently to the gluten to ever go back on it for the required
time may come to realize they have wheat/gluten problems after an
elimination diet.  A wheat allergy is different from gluten intolerance,
although many of our resources are important for those with wheat allergy.
But the biopsy itself, everybody seems to agree, is much easier and milder
an experience than it sounds when it is first suggested. They will sedate
you so you remain relaxed, and then worm a small tube down your throat to
take the biopsy. Most say they felt only 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; constipation;
gas; foul smelling flatulence; abdominal bloating; mental fogginess; rash,(
Dermatitis Herpetiformis (DH), often on elbows, buttocks, knees and feet));
muscle wasting; increased or decreased appetite; bad temper; weakness;
fatigue or lack of energy; migraine-like headaches; asthma, and
malabsorption, which causes almost anything from psychological problems or
psychosis (including schizophrenia, autism, and tourette syndrome) and/or
anemia to osteoporosis, smooth tongue with cracks in the corner of the
mouth, leg cramps from calcium deficiency, and edema from low blood
protein. Many doctors and celiacs insist that if you have DH you are celiac.

Another symptom some celiacs may manifest is floating stools. Stools may
float 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; 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.

You will find the celiac world is complex, and there is considerable
controversy among celiacs, celiac organizations, and different  nations as
to what may harm us or cause 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 gluten free (GF). Perhaps this letter will help to simplify a
complex issue.

GRAINS THAT CONTAIN GLUTEN in order of the amount of gluten in them: Wheat,
rye, spelt (or spelta), kamut (or kawmut) and triticale (all are wheats),
rye, barley and oats. All grains containing gluten must be avoided for
life. Some studies with specially grown pure oats find they may not contain
gluten, but ALL commercial oats are contaminated with wheat, so oats may be
an option if you grow your own.

GRAINS THAT  MAY ELICIT A REACTION due to cross contamination or individual
sensitivities: Millet, sorghum, teff, ragi, quinoa, amaranth, and buckwheat
(which is really not a grain). Some have even claimed an intolerance to
canola oil, but it is not clear why this should be so. You may wish to
observe consumption of this to see if it affects you. Different celiac
organizations and individuals have differing opinions concerning these
substances.

Some celiacs are intolerant to all grains or carbohydrates. It may be
better initially to limit your diet to rice and later experiment with other
grains. But remember: though some will react within a few minutes, some
rare celiacs may not react for as much as three days after ingesting an
offending substance. It's a good idea to keep close track of what you have
eaten before each reaction by keeping a food diary, listing everything you
eat till you get a solid idea of what may be toxic to you. This is doubly
important to do for celiac children. Furthermore, some celiacs may not
react at all after ingesting gluten, and many go though a long period of
adolescence, sometimes through the twenties, when they do not react; it's
doubly important for them to check out everything before they ingest it.
Any ingested gluten still does terrible damage to a celiac's intestines
whether or not they react to it.

To have celiac, it is believed, you must first have a genetic
predisposition to it, but it may not be active when you are young.
Sometimes it takes a psychological or physical trauma (such as a major
operation, esp. GI) to activate the problem. There is some evidence that a
specific virus can do so too. So many celiacs may not have problems till
they are older, many in their fifties or sixties.

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

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 -- specifically the tips of the villi which may be
damaged first. Without this lactase we are unable to digest lactose. In
this case some celiacs may be lactose intolerant, but sometimes this
intolerance may go away after the small intestine has time to repair and is
in good shape again. In bad cases 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. But some may also be
sensitive to the protein or casein in milk. In this case they may want to
drink soy or rice milk, if they are not sensitive to that too. Here are the
two brands I've checked on and find to be decent tasting, and they are easy
to remember because everything in their line of milk substitutes is (GF):
Pacific (all rice and all soy milk substitutes) and Better Than Milk (all
soy milk subs). For additional choices check this website:
http://www.fastlane.net/homepages/thodge/MILKALT.txt

Celiacs must also be aware that some may have damaged their intestines so
much that molecules of some substances can "leak" through the walls. This
may cause sensitivities to other foods as well; hence, in order to avoid
this, it's imperative to maintain a diet that will allow the intestine to
heal as soon as possible. Because of this "leaky gut," celiacs may develop
sensitivities, allergies or intolerances to almost any food. For further
information check:
http://www.healthy.net/library/articles/galland/Leakygut.htm

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

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

http://csaceliacs.org/ = This is the Celiac Sprue Society's site. You may
want to order their 89 page CSA commercial products listings booklet. It
lists a lot of brand names of GF products, and it is a great help at first.
Some celiacs do not trust the organization or the booklet implicitly so
they phone and check out everything before they eat it, but it's a good
place for beginners to start , 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 offers numerous sites
where you can check on just about anything, including some sites where you
can order GF products.

http://www.geocities.com/HotSprings/Spa/4003/gf-index.html = Another good
site that has extensive lists of GF foods, medicines, beverages, etc.

http://www.stokesrx.com/ = You can order Stokes book, A Guide Through the
Medicine Cabinet. It will tell you whether most medicines have gluten or
lactose in them. Or you can have them prepare GF or lactose free medicines
for you.

http://www.enabling.org/ia/celiac/sn/spnk9701.html#trier = Doctor Murray
explains some of the symptoms of celiac disease.

For Canadians, either: http://come.to/joansplace
or 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; Brain Allergies by William Fillpot and Dwight Celiata;
Allergies & Your Family  by Doris Ramp;
The Impossible Child by Doris Ramp.

Here are some companies (US and Canadian) where you may 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/ = Scott Adams also
offers a lot of valuable information about celiac at this site:
http://www.celiac.com/
Kinnikinick: http://www.kinnikinnick.com
Miss Robins: http://www.geocities.com/HotSprings/Spa/4003/gf-index.html