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Dear listmates,  I have been trying to get diagnosed since April of 2001
when I began having more frequented diarrhea.  For the last five years, I've
been told I have irritable bowel syndrome after a negative colonoscopy, and
since June 2001 have been told by the second Gastroenterologist that I had
lactose intolerance and IBS.  He made this determination after general blood
tests, even after I explained that I was having floating stools and couldn't
take in any vitamins without severe abdominal cramps.  After eliminating the
culprits which I thought were causing me symptoms, specifically, diary, soy
milk, and vitamins, I continued to have more symptoms.  By October 2001, I
realized I had some sort of wheat problem because I lost 4 pounds, 2 days
after ingesting my own homemade wheat and rye bread.

Late October, I had the celiac blood tests requested by my allergist which
proved negative I think because I had bearly eaten any gluten for at least 3
days prior.  Because of the current state of healthcare, I wasn't able to
see the third Gastroenterologist until almost three weeks later when he
asked me to eat gluten and 100 grams of fat per day for 3 days.  He found
fat malabsorption but I was borderline malabsorption because he thought it
was because I had been gluten-free for those prior weeks.  He verified this
by asking me if my stools had been diarrhea for the entire three days of the
test.  I responded that the stools got progressively worse with increasing
amounts of undigested food over the 3 test days.

Finally, he started me on the second gluten trial for the endoscopy biopsies
but the endoscopy was cancelled because of red tape until 2 weeks later.  So
I went gluten free again until six days prior to the test when I started the
third gluten trial, eating gluten up to six times a day, eating whole wheat
and rye bread I made myself with only yeast and water - to ensure damage
that the doctor wanted.  When I got the diarrhea 2 days prior to the
endoscopy, I knew I was set for the endoscopy.

The Gastroenterologist found the following:

1) Gastritis of the stomach (stomach inflammation) which can be caused by
alcohol, medicine, severe burn, auto-immune disease, etc.  Well the first
three don't fit me.

2) Nodular mucosa: bumps on my duodenum

3) Scalloping of the folds on my duodenum

4) Flattening of the valvulae conniventes He took 12 biopsies of the
abnormalities.  However, the pathologists reviewing the biopsies found
no "blunted villi".  The Gastroenterologist commented to me that he saw
gross abnormality but the pathologists didn't find it in the biopsies.
He then proceeded to comment that he knows the damage is lower but he
couldn't get there with his endoscope.  Now, he wants to give me a
capsule endoscopy which is a small capsule I will have to swallow which
will pass thru the entire 30 feet of the small intestine, not just the 4-
5 feet that can be visualized thru the traditional endoscopy which I
had.  I will have the capsule test in late January;  This is a study
approved by the Human Experimentation Commitee;  I will be the 7th
person to receive this test by my Gastroenterologist.  The doctor at
this point is allowing me to go gluten-free.  The third gluten challenge
was so horrible that I lost five more pounds, got severe joint pain and
stomach spasms, and had debilitating weakness;  Also, I started having a
heart problem with this 3rd gluten challenge and without informing my
primary doctor, she heard the heart abnormality in a followup
appointment after the endoscopy.  She is now sending me to get a bone
density test as well as a heart echocardiogram.  Now, that this disease
has affected my heart, I'm no longer concerned about an absolute celiac
diagnosis because I'm absolutely sure I have celiac disease.  I wanted
the diagnosis for members of my family who potentially may have it
because they said they wouldn't go get tested unless I was absolutely
diagnosed.  Well, I don't want to kill myself over it and now those
members said they may get tested anyway after seeing how ill I got after
the 3rd gluten trial.  After being practically nursed the last three
weeks, I'm now strong enough to move around and cook for myself and have
gained 5 pounds but I am still 10-15 pounds under weight from my normal
of mid to high 90s.  Yes, I am a small person and also Asian.  I'm also
interested to know any other Asians who have Celiac disease since it's
supposed to be rare.  I'll let everyone know what the doctor finds or
doesn't find with the capsule test since by the time I have it I will
have been gluten-free for one month.  He wanted to give it to me sooner
to catch the damage but his vacation got in the way.  Good luck with
others trying to get diagnosed as well and I hope I've given some useful
information towards that end.

P.S.  Does anyone know a Celiac specialist who may want to look at my 12
biopsies for a second opinion?  Laura