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I am still trying to find out if I have celiac disease. I recently re-ran a
blood test from March in a different lab out of CA., per my request. All of
my prior test looked for IgG & IgA gliadin antibodies and tissue
transglutaminase antibodies. I have never been checked for EMA, or
endomysium antibodies . Supposedly the EMA test has been replaced with the
tTG test. Since I was coming up with negative IgA, IgG gliadin, negative
biopsy and positive (>220) tTG, I've been on a quest to find out why a 99%
specific test makes me the zebra.  My doctor kept telling me it was a false
positive on the tTG. This drove me nuts; especially since I'm finding out
that the tTG test is not a nearly reliable as it was touted to be and that
it, in fact, can be a marker for other diseases, such as prostrate cancer,
primary biliary cirrhosis, Huntington's disease and possible connections to
ALS and MS and even more neurological diseases.

   While the lab was doing the EMA test, they realized they couldn't get a
definitive answer of the EMA results because I have strong anti-smooth
muscle antibodies (ASMA) "in the way of being able to see it", as the tech
put it to me on the phone. So that was that.

But the shocker was to find out I have IgG and IGA ASMA and my old gastro
NEVER TOLD ME!. This generally points to auto-immune hepatitis and or
primary biliary cirrhosis.

I recently read an article about tTG and it's relationship with PBC at
this web site: http://www.pulsus.com/GASTRO/14_08/gilp_ed.htm What I
find sooooo disturbing is that I have been extremely sick for over a
half year, lost 30 pounds and still have no diagnoses. I have been to 14
doctors in all total and it is I who am pointing out this to more
doctors.  I have anti-smooth muscle antibodies (strong with IgG and IgA)
and tTG antibodies. Put both of these together and it really points to
liver disease...... even though my liver profiles have been negative
several times.

Now, I don't believe I have liver disease. Many more things would have
showed up. I've had 6 CT scans, 1 MRI's, 100 blood tests, 2 small bowel
follow through's, 1 liver sonogram, ... no need to go on.

I believe I have an bowel infection, plain and simple, with a bowel that is
so permeable now that you could drive a 57 Lincoln through it. And, with
this, this is how I think my body has responded by creating these auto-
immune antibodies, since so much is 'spilling out' into my blood stream.
I cannot tolerate oral antibiotics, especially Cipro and Flagyl. My gut is
too gone. My newest doctors are going to put me these antibiotics
intravenously in the hospital. All of my doctors believe I have some kind
of overgrowth, which is what I have been saying for months.

I am still waiting in the Whipples staining test from my last biopsy. I
really don't believe it is that. I am also having a battery of other anti-
body tests to see what my show up. I also went ahead with the Great Smokies
stool testing and did the ELISA/ACT blood test to look for food allergies
(which I know I have).  All of this should be done by April 20th, Friday or
the following Monday. Then I (we) can be sure nothing has been missed and
go ahead with the antibiotic treatment, here in my home town of Alexandria,
VA. IF this doesn't work, then it's Johns Hopkins. IF that doesn't work,
it's bye bye.

My advice is, pay close attention to your labs, do your homework. There is
plenty on the NET. I only use Google for all the research I have done. Keep
an eye on the source of your info and trust your instincts.

I am so frustrated, so sick, so frightened, so financially broke and still
have not one answer to why. I do, however, have a hundred answers to why
not.

I will be in touch. Thanks,
Greg Eric.