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

Hi List members,
Thank you for all of your responses to my query. As a Physical Therapist,
I treat many other related auto-immune diseases,
but not necessarily Celiac Disease. To summarize, the overall consensus
was that since I have the symptoms, the genes, and
began having resolution of my symptoms on the GF diet, I should follow my
"gut" instincts and go back on the diet regardless 
of the results of my blood work and the upcoming endoscopy. I
wholeheartedly agree.

Here are some of the responses that I have received: 

· some people are "gluten sensitive" and may not produce IgA antibodies;
possibly pre-celiac; therefore the GF diet may help avoid future health
risks
· many people end up seeing multiple doctors before getting a correct DX
for C.D.-some may be a gene carrier and not have the disease
· if feeling better with resolution of symptoms on the GF diet, it may be
an indication of villi damage
· have both procedures (endoscopy and colonoscopy) performed at the same
time to avoid having 2 separate procedures. (The practice I go
  to does not perform them at the same time...reason given was "it would
be too much for me in one day!") At this point, I plan to only have the
endoscopy and 
  cancel the colonoscopy for a later time (in a few years when I'm 50)
· some members felt I should not worry about a definitive dx since I have
already felt better on the diet.Why go through the invasive procedure.
· others decided that for them, the diet was all they needed and that No
tests would change how much better they had felt after going GF
· Most felt I should go through with the endoscopy which may either show
villous damage, healing from the diet, or some other related disorder.
 Recommendations prior to endoscopy, since I already had 5+ weeks on GF
diet, was to eat up to the equivalent of 4 slices of bread per day for
4-6 weeks
 prior to endoscopy to insure more accurate results. Some felt a "gluten
challenge" would be difficult, but to try to bear with it if I could. I
can tell you now
 why they call it a challenge! More gut pain, excessive gas/bloating and
some headaches to boot! Only a few more weeks to go........
· one list member suggested taking Probiotics and L-Glutamine to jump
start the healing process of the gut and to watch out for reactions to
white vinegar.
· one suggested I had mercury poisoning (This disease would include sx's
of peripheral vision problems, neuropathies, impairment of speech, muscle
weakness
  which are not all sx's of C.D. and is not from ingesting gluten.)
· Several list members mentioned that there are about 25% false negatives
of serological tests and biopsies as damage can occur further down the GI
tract
 (This is where I have found by research that the capsule endoscopy or
pillcam may be more effective at finding damage distally (farther down)
than proximally (closer up),
  however, I have not convinced my GI practice to perform this procedure
first instead of the regular endoscopy)
·IBS is a "catch all" disease. I received 2 articles that I will pass
along the links to: http://www.aafp.org/afp/20021215/2259.html  
http://www.aafp.org/afp/980301ap/pruessn.html
· keep copies of all tests from the doctors you see 
· Lactose intolerance can be an early symptom of gluten intolerance since
the lactase enzyme is made on the tips of the villi which are the first
to be damaged/lost
· Lactose intolerance could improve after a period of time on a GF diet
if caused by C.D. and you may be able to slowly introduce dairy back into
the diet
· better tests are needed for more reliable results, especially for those
who may just be developing villi damage and do not yet show up positive
on serological tests/biopsy
· a GF diet can help people with IBS and other auto-immune diseases and
is a much healthier diet to begin with. Wheat is a toxin.
· the last response I received had a similar scenario as I--their son was
tested by Prometheus labs, had the genes, was given the summary that they
did not exclude
  the dx of C.D. since 30% of the "normal" population have the gene and
his full panel antibodies were negative. However, the test does exclude
the diagnosis for C.D. for 
  96-98% of those without the genes. His doctor felt he should perform an
endoscopy since the Dad had C.D. and it revealed villous atrophy. Since
blood tests
  are not 100% accurate, it was considered the gold standard to have the
endoscopy. 
Whatever my outcome, I thank you all for your support and
recommendations. I will definitely follow my instincts one way or the
other and go GF once again despite
what they find out with my endoscopy. I will continue to educate the
general public and other health care professionals on this very much
under diagnosed disease as I 
continue to learn more about it each and every day. Good health to
all...............~Donna

* Please carefully compose your subject lines in all posts *
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC