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I am a 30-year old woman diagnosed with irritable bowel syndrome by my
primary care physician early last year.  After this diagnosis, and as my
symptoms became more severe without any success at alleviating my pain
and discomfort, it became more and more important to me to rule out
other (and potentially more serious) possible causes for my suffering.
As a young person, I couldn't imagine allowing my condition to grow
increasingly worse.  I've spent much time since being diagnosed with IBS
doing independent research on different subjects^×candida infection,
"leaky gut," Crohns disease among them^×much of which my doctor showed no
interest in.  It is only since August that I learned what it means to be
a celiac and familiarized myself with the symptoms.

I suffer from MANY of the symptoms that suggest celiac disease^×the
classic digestive ones as well as the more cryptic ones such as joint
and bone pain, muscle soreness, hair loss, blurry vision, mood
swings/irritability, lack of concentration, mysterious rashes,
dehydration, debilitating fatigue (although not necessarily all at the
same time).  After a tough time convincing my primary care physician
that this is something I should investigate, she finally agreed to refer
me to a gastrointerologist (I chose someone who was recommended by a
listmember^×thank you JB).  This particular GI does not believe in "leaky
gut" or intestinal candida infection, so from the start, he  immediately
ruled out either of these as a possible cause of my symptoms.  He also
considers celiac disease to be a disease strictly defined by a problem
with malabsorbtion--that is to say if a patient's blood profile shows no
evidence of deficiency, (and my results were perfect in every way) CD is
NOT the problem.  (Is this true?)  My GI agreed to do the blood anitbody
tests for celiac disease anyway, but since they came back negative, he
believes there is a less than 10% chance that I have CD.  He has
scheduled a biopsy for the first week in March and will also be checking
for evidence other disorders such as Crohns at that time as well.

This is why I'm writing:  after becoming quite sick back in Sept 97, I
decided to do a trial on the gluten free diet. I stayed on the diet for
less than two months, but was already beginning to feel much better than
I had in a long time and was seeing evidence of my symptoms subsiding
(the digestive ones were almost immediate).  Because I decided to be
tested for CD, I have slowly started to eat "normally" and have steadily
increased my gluten intake again since mid-Dec (I am even eating crusty
bread some days, although pasta is impossible). Admittedly, I have
remained somewhat "gluten-reduced" in order to stay functionable, and
have definitely had some gluten-free days--sometimes two or three in a
row--so that I could give my body SOME relief!  At this point, all of my
symptoms have returned, with some even more severe than before my GF
trial: hair is falling out again, I have terrible abdominal pain and
cramping, that bloated, tight, "paralyzed" feeling is back in my gut,
constipation/diarrhea, I'm breaking out in "un-acne" on my face, neck,
and back, I have excruciating pain in my knees, shoulders, and my hip
joints, debilitating fatigue, inability to concentrate, swelling I my
legs and face^×the works.  I feel awful and it is oftentimes difficult to
get through the day.  If I feel THIS sick, is there any chance at all
that my body had time to heal in the short time I was on the gluten-free
diet back in Sept and October?

If the biopsy test for CD comes back negative, what do I do then?  I
feel like I want to take the whole matter into my own hands, take
control of my own health and not be concerned by the lack of a "real"
diagnosis and just do what I think is the right thing for me^×stay away
from gluten!! Can I be unable to tolerate gluten and still not have CD?
Should I go on the gluten-free diet anyway, just so that I'll feel
better?

Any feedback is welcome. I feel like I need the opinion of people who
may have been in the same place as me.
Many thanks,
Theresa