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

 One listmember requested that I not post a document she attached to her
response. I've decided to also quote only parts of her response as follows:
"It is NOT just a question of antibodies but far more complex and not yet
fully understood, which is why biopsy has remained the gold standard despite
improved blood tests. Any search for 'seronegative coelic' will produce most
of the literature, much of which is recent and European, which is why your
doctors may be unaware of it. NB these authors - Howdle, Dickey etc are
mainstream, highly respected, leading European gastros and know more about
this subject than any other
clinicians."
_____
I just attended the GIG conference in Salt Lake City.  I sat and listened to
all the questions asked of our top medical research doctors after they
completed their presentations.  NInety percent of the questions asked were
basically some version of the situation you just described. The answers, in
my opinion, were unsatisfactory. The bottom line was that they would need
to go back on gluten for 6 months and be re-tested.  Most indicated that
they were not going to do that.  One doctor, Fasano I think, did admit there
might be another undiscovered gene that causes these problems for some
people.  A local Salt Lake City gastro had a session for 2 hours that was
mostly Q and A.  It was overwhelming to hear the stories presented and the
questions left unanswered.
_____
Boy am I interested in reading responses.  My daughter Allison (not the same
one who posted to the list) had no symptoms but had the gene and low total
serum IgA, high IgG...had seizures one year after being gf (benign
Rolandic).  But my son and I have neither gene or positive antibodies but
have the bloating, constipation, fatigue, fogginess, etc. w/ ingestion of
gluten.  I've also begun to be milk intolerant.  Our son (neither gene nor
antibodies) has been gf which helps significantly, but he still seems to
have immune problems...lots of mucus, etc.  His liver enzymes are high, too.
 We did some allergy testing and found he's allergic/reactive to oranges,
polysorbate 80, pinto and lima beans, yellow squash and a few other things.
We'll talk to the nutritionist who works w/ the allergy testing company and
start him on the diet rotation/elimination diet they have planned.  I know
we cannot have even a bit of gluten without suffering terribly.  I say we're
Celiac for the sake of clarity, but I know we aren't full-blown in the
medical sense.  I didn't want to get there, but many questions still plague
us.
_____
Isn't it possible that if your body sees gluten as a "poison" that your
intestine could be irritated and "damaged" by the immune response to that
"poison"?
_____
So many different conditions can damage villi.  Here's a link to a thread on
BrainTalk that is pretty good on the subject, lists a lot of causes but it
could take you half an hour or so to go through it all.
http://brain.hastypastry.net/forums/showthread.php?t=3332&highlight=villi

Have you taken a lot of NSAIDS (Motrin, Advil, aspirin etc.) over the yrs.
for osteoporosis pain?  They can cause leaky gut & even do a number on
villi.  One study I read found that 10% of chronic NSAID users had villi
damage on endoscopy.

It's been helpful to me in the past to think of diagnostic labels as working
hypotheses (esp. when a doc says it could be some devastating kinda cancer
!), and to remember that not everything is known about how the body works in
health, let alone all the myriad ways things can crash.  Yet, clinical
medicine  tends to work from it's body of knowledge as though all is known.
_____
 Try searching pubmed.com - there are studies showing up to 50% false
negatives at some labs (of people known to have positive antibodies) and
others that say that up to 30% never have positive antibodies.  If it isn't
CD (or a gluten allergy, which is what the IgG/IgA antibodies are
measuring), then it won't respond to a gluten free diet.

You can get the same blunting of the villi from soy or milk proteins (see
celiac.com) without gluten antibodies - but there would be no response from
a gf diet, as a different protein is causing the damage. The antibodies are
only detected if they escape into the blood and build up in number. And some
docs only run a TTG-IgA test, skipping all the others (some of which may
have been positive).
_____
We are a whole family of negative blood work,  negative biopsy, positive
genetic, celiacs (I won't bore you with all the details). I have spent a few
months reasearching and trying to find some answers to support our
diagnosis.  I have not been successful.  I have come to the conclusion that
with the support of my daughter GI doctor that we fall into  a grey area
that is not well understood or explained by the current body of  research. I
guess many would look at us an say we don't have celiac disease.  I would
say that the current testing modalities are not sensitive enough to detect
the damage and autoimmune responses that are happening in our bodies.
_____
 Peter Green is one of the celiac experts who does biopsies for CD when
people are antibody negative but where clinical symptoms suggest celiac
disease.  He reports that a full 25% of the celiacs they diagnose at the
Celiac Center at Columbia are antibody negative.  He is referring to
negative to tTg (and EMA if tested).

At the NIH Consensus conference on celiac disease in 2004, Dr. Green argued
to include a panel of blood tests for CD rather than just the tTg since
using the tTg only would mean missing this 25%.  Other celiac experts argued
against a panel.  These experts aparently never biopsy anyone who is tTg
negative--so how would they ever know if any of these
people actually had CD since they never biopsy them?!!  I believe Joseph
Murray at the Mayo Clinic also biopsies based on symptoms even when the
person is tTg negative.  However, he did not speak up about this at the
consensus conference.  You can see Dr. Green's comments for yourself. The
entire 3-day conference is available at the NIH consensus conference web
site. You have to click around a little bit to find it.  I believe Dr. Green
made his comments in response to the presentation by Ciaron Kelly MD of
Boston when Dr. Kelly was presenting the proposed algorithm for diagnosing
CD.

I noticed in Peter Green's recent book, he gave the consensus point of view
and not his personal opinion--very annoying!

Re: antibodies.  It is the gluten that causes the damage.  Some people don't
form antibodies as readily.  Research published in peer reviewed journals
clearly shows that not all biopsy diagnosed celiacs are positive for tTg or
EMA.  According to Peter Green, if you are positive
for EMA, you definitely have CD.  Nothing else will cause positive EMA.
However, other health issues besides CD can cause a positive tTg.

My conclusions--diagnosing CD is not as clearcut as many Gi doctors and even
celiac experts claim.  Most GI doctors are ignorant.
_____
Why not get a gene test.  If you do not have the DNA,  HLA-DQ2 or HLA-DQ8,
it would rule out Celiac. There is no maybe in this test. Not even a blood
draw if you do the test from Kimbell Genetics, Denver, Co.,  800-320-1807 or
303-388-9220.  [I won't get a DNA test because, as noted in earlier posts
above and apparently by "Allison's story" posted on the list a couple of
weeks ago, one may or may not show the markers - it's not a hard and fast
way to diagnose. If it was, Drs. would more than likely skip the sera and
biopsy. I did consider the DNA test, however - but I feel it's just one more
tool to a diagnosis, not without its shortcomings]
_____
I may be able to help with some of your questions.  It's possible to have
antibodies in the small intestine that just do not make it into the
bloodstream in some people (I don't know why).  This is well-documented
although I can't give a reference right now.  I think Peter Green did an
article about this, with about 15% of the people with CD that they studied
having negative blood tests.

I CAN give you a reference showing how Sphincter of Oddi Dysfunction is
related to CD.  SOD is a blockage of the bile duct that will cause symptoms
similar to a gallstone.  It can irritate the liver and cause high liver
enzymes, although I don't know if it will be as high as yours were.
It will also cause right upper quadrant pain.  Usually this clears up on a
GF diet.  The reference is:   http://snipurl.com/sfgw
<http://snipurl.com/sfgw+>
_____
Dr. Fine's theory is that the body can be producing antibodies and suffering
damage to the small intestine before the antibody levels show up in blood
work.  He argues that damage to the small intestine must be severe before
the antibodies will show up in the serological testing.
_____
 Our family came up against a confusing situation also, and had a bad
experience.  I've done a lot of researech into this and am in touch
with more than one research group who all seem to be on the cutting
edge. The result is a website that should give you a LOT of insight into
your situation. Just start on the first page and work our way through.

www.glutensensitivity.net.

Be sure to read the testing page.  I am in the process of building/revising
it so not everything is up, but enough to keep busy reading for a while.  I
still have to write the link on cross reactions which could be related to
the problems you still have on the GF diet.  But if you go to the testing
page and read the "Stories to help us understand" column, you may be able to
see where you fit the pattern. No doubt this syndrome takes time and work to
study and understand.
_____
Have you seen an actual immunologist?  No just a doctor who runs the regular
immune panel, but a specialist?  You may be IgA, IgG, or more deficient.
Also, you should have immune tests done to determine if, despite normal
levels of IgA, IgG, etc., your cells don't FUNCTION properly.  You can look
up CVID (Common Variable Immunodeficiency) on the web.  Took me years to get
diagnosed.
_____
 As for remaining GF and episodes of losing weight....I have had this happen
a few times over the course of the years I have been diagnosed.  Blood tests
were useless so I had 3 repeat biopsies.  Each time the biopsy was vastly
improved over the original to which they were compared and it was determined
not to be poor diet. I am a patient of Dr. Green and no reason was ever
found for the symptoms.  I was tested for other conditions and strangely
after a few months the symptoms resolved.  It was a mystery.  I do feel that
I do poorly on a typical GF diet and now avoid GF breads, pastries, etc. and
stick to what my family refers to as the perimeter of the food
stores---fresh vegetables, fruits, meat, poultry and fish, nuts and dairy.
I have followed the SCD in moderation and it has worked for me.  My adult
daughter is now developing some of the same problems.....as have some other
celiacs I speak to.  Perhaps some of us become sensitized to all the rice
flour, tapioca, etc.

End of Part 2

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