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

At 09:57 PM 4/23/00 -0700, I wrote:

>   Now for my questions: Do others of you have bad gas problems? Do some of
>you still have bad symptoms after being on a GF diet for a while? How long
>before you've felt much better? On this list I've seen references to a TTG
>test and confusion about whether it's better to have an enteroscopy rather
>than an endoscopy. What's a TTG test, and what's the difference between an
>enteroscopy and an endoscopy, and which is best for a celiac diagnosis?....
>Have others of you had experience with stool tests diagnosing gluten
>intolerance and how did that correlate with your biopsy results?

Vance's reply:

With encouragement and help from several others on this list,
I now send this letter to new members the first time I see
them post to the list asking for help. 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 errors they
could find. I hope the suggestions in this letter are pertinent
to your interests. Several people have printed this letter off
and given copies to their skeptical relatives and friends, who
believe they are exaggerating the condition or that it's all
in their head.

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 any discipline (doctors, lawyers, professors, mechanics or
electricians) are competent. Most gastroenterologists may
recognize fewer than three true celiacs in a lifetime's practice.
Many 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.
Celiac can also cause a litany of other diseases. That's why
it's often called "The Great Masquerader." After starting visits
to doctors in the search for answers to what's causing the
symptoms, the average time it takes to recognize and diagnose
celiac is eleven years. 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 reliable. If no groups are listed, check Scott
Adam's excellent site <http://www.celiac.com/> or 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
a while, the biopsy and the blood tests are worthless. They will
almost certainly give false negatives -- even if you are liberally
ingesting gluten, if the biopsies are not taken properly or read
properly, they can still produce an 815% false negative. The
blood tests also give false negatives from 10 to 50 percent of
the time (according to which study you believe). If you are
liberally ingesting gluten prior to the testing and you register
negative, you may want to have another lab perform the tests
after finding out, from the celiac organization of your choice,
which labs are competent to perform this test. The estimation
is that there are only a few labs in the US competent to assess
the tests for celiac accurately. If you'd like a list of these
labs, feel free to write me and I'll send it.

If you have been GF for a while, 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 -- especially since reactions 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, everyone 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. But like any surgical
procedure, the biopsy can do some harm, even causing hiatal
hernia.

For an excellent in-depth explanation of the tests and
what they mean, try this website:
   http://www.enabling.org/ia/celiac/diagtst.html#US
Just 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; frequent but incomplete defecation;
aphthous ulcers of the mouth; mood swings; constipation; gas;
foul smelling flatulence; abdominal bloating; mental fogginess;
migraine headaches; Dermatitis Herpetiformis rash (DH) often
on elbows, buttocks, knees and feet); muscle wasting
(especially in the buttocks); increased or decreased appetite;
bad temper; weakness; fatigue or lack of energy; migraine like
headaches; eye-aches; asthma; epilepsy; alopecia (loss of all
hair); considerably underweight or overweight; lactose
intolerance; 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. And
the Canadian Celiac Association and some others say that
eyelashes that are noticeably longer than normal are also a
symptom. If you have DH you are celiac. UNTREATED celiac
patients have an increased incidence of osteoporosis and
intestinal lymphoma. But on the diet, the incidence only
fractionally higher than normal, and it's a fairly rare
problem in the general population.

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 is a pale color, floats and
leaves an oily film on the water surface; 2. when there is 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. This
may be a dark color.

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, spelt (or spelta), kamut (or kawmut),
durham, 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, and the prevalence of celiac
disease is approximately 10 percent in first degree relatives
of celiacs. But the disease 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;
forty percent are diagnosed after reaching sixty.

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 most
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 a while 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
When celiacs first go on a gluten free diet they
should also abstain from ALL dairy until the diet is stablized
and they know what bothers them and what does not. Once stabilized
they can suddenly re-introduce milk for a day and see what happens.
If they have a strong reaction to the dairy, they should abstain
for a year or more before trying again.

For all the information you'll ever need on lactose intolerance try Don
Wiss's site:
   http://www.panix.com/~nomilk/
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.ajcn.org/cgi/content/full/69/3/354#SEC8 = Every celiac should
read this first. A very helpful article by Dr. Murry, perhaps the most
knowledgeable of celiac docs.
   http://www.celiac.com/forbiden.html = This is a useful list of foods and
additives that are safe, and those that are not safe for celiacs. I printed
off the unsafe portion and carried it in my billfold for the first two
years after I was diagnosed so I could check any list of ingredients
against it.
   http://ojr.usc.edu/indexf.htm?/sections/resources/99_stories/points_050799.h
= This is Celiac Reference Files maintained by the listowners of this
list.
   http://www.geocities.com/HotSprings/Spa/4003/gf-ongoing.html = This is a good
place to start your shopping: it's a long list of food products that are
gluten free, from baby food to tomato pastes and sauces.
   http://www.aafp.org/afp/980301ap/pruessn.html = an excellent article:
"Detecting Celiac Disease in Your Patients," by HAROLD T. PRUESSNER, M.D.,
University of Texas Medical School at Houston.
   http://www.glutenfree.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.glutenfree.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/gfindex.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://www.celiac.edmonton.ab.ca/ = Canadian Celiac Association or
   http://www.celiac.ca

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 Rapp; The Impossible Child by Doris Rapp.

Here are some companies (US and Canadian) where you may order GF food by
mail:
Ener-G Foods: http://www.energ.com/nrg2.html
Gluten Free Pantry: http://www.glutenfree.com/toc.htm
Gluten Free Mall: http://www.glutenfreemall.com/
Kinnikinick: http://www.kinnikinnick.com
Miss Robens: http://www.geocities.com/HotSprings/Spa/4003/gfindex.html
http://geocities.com/HotSprings/Spa/4003/gf-meds-toiletries.html = website
with GF medicines and toiletries.

Editor at fault: [log in to unmask]