<<Disclaimer: Verify this information before applying it to your situation.>>
 
For anyone who has "self diagnosed" celiac disease, I have this
to report.  Based on the hunch of a nutritionist, I went on a gluten free diet
and noticed great improvement.  Every time I went back on gluten grains,
abdominal pain returned with a vigor.  After many years of this I concluded
that I had celiac disease.  The trouble is I had many other symptoms.  I cannot
tolerate high sugar foods, including fruit and fruit juices.  There would be
flare-ups that seemed to be unrelated to anything I could identify.
 
My next try was an allergist.  The allergist went through many tests and started
treating allergies with some success. However, some symptoms did not respond to
treatment.  Finally I went to a gastroenterologist.  He ran a number of tests
and concluded that I do not have celiac disease.  He was puzzled by my low blood
count and I went to a hematologist for further blood tests.  He wanted to do a
bone marrow test.
 
Since the bone marrow test sounded pretty drastic, I returned to the allergist
and asked if there were other alternatives.  He suggested a stool analysis.  I
was skeptical because I had had one done before and nothing was found.  The
allergist assured me that this was one of the most thorough labs in the nation.
So I consented - luckily.
 
Finally I received a diagnosis that brought some improvement.  The lab found
two parasites: dientamoeba fragilis and blastocystis hominis.  I went on the
medication metronidazole and after an initial intestinal battle am now
relatively free of abdominal pain for the first time in eleven years. I have
still not completed the course of medication so I do not know if all symptoms
will ultimately be relieved.
 
However, I want to join those we maintain that self diagnosis is not a good
idea.  You may continue to suffer unnecessarily because you are not treating
the real problem.
 
It is also important to seek help from the right professionals.  Several
physicians were all too willing to run test after test with no result and at
great expense to me.  The allergist, a clinical ecologist, had the right hunch
even though it was not directly in his field.  It is important to find someone
who is intuitive and holistic, treating the whole person and referring to
specialists only with good cause.
 
If you are a self diagnosed celiac, I urge you to seek a professional diagnosis.
 
John Hempstead