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With all the discussion of biopsy tests, I wanted to post a 2nd opinion of
my biopsies which were previously found negative for villous atrophy.
Despite negative blood tests which prompted three gluten challenges by my
3rd gastroenterologist in four years, I was diagnosed with "most likely
nontropical sprue" last February by the Chief of Gastroenterology.  Over the
past months, I also discovered that even though my hospital recorded
negative results on the anti-endomysial antibody test, this test had never
been performed and led both my allergist and gastroenterologist to believe
that this test was negative.  The allergist blames the mishap on the lab
which never informed her that they had discontinued the anti-endomysial
blood test.
Since my diagnosis, I've always believed the biopsies had to be positive due
to my classic symptoms of malabsorption and collaborative tests; However, my
gastroenterologist has also discussed the possibility that I have patchy
damage or damage which lagged until after the biopsies.  However, I decided
to pursue a 2nd opinion of my biopsies with Dr. Fasano's group at the
University of Maryland.  He reviewed my 10 duodenal biopsies which he found
to be inconclusive due to bad orientation.  The policy at my hospital is to
put all the biopsies in a container which results in the tendency for
biopsies to wade up into a ball making it difficult for orientation
according to the pathology lab director of this well renowned hospital.  Dr.
Fasano then requested the original tissue block from which the 10 biopsies
were cut and he reported the following:
We reviewed the recut duodenal biopsy... and these are our findings:
"'The lamina propria could not be identified, rendering the specimen
inappropriate for interpretation.  The few villi that were seen appear
normal.'
Conclusion.  No conclusion can be given, due to poor orientation."

When I received the call of my oral results, I was told in plainer language
that I just had bad biopsies and that the lamina propria was missing and
most of the villi were missing or could not be seen.  In case "lamina
propria" is not a familiar term to some of you, it is the layer below the
epithelium and is known to show inflammatory infiltrate of lymphocytes in
CD.

Even my primary doctor recently told me that she was taking a class on how
medical diagnostic tests are imperfect and she says that my improvement is
proof and believes that more patients like me should be diagnosed on the
fact that my symptoms have been resolving off of gluten.  She was now
convinced even though she and 2 other gastroenterologists over several years
kept believing I had irritable bowel syndrome.  When I was faced with the
prospect of withering away from continual weight loss, I had to discover the
reason for my deterioration with extensive medical research and my food
diary which led me to CD and then search for a doctor who would see me
quickly since the IBS specialist that my primary doctor had referred me to
couldn't give me an appointment for 2 months.  However, I managed to get an
appt. with the Chief of Gastroenterology several weeks later but went
gluten-free because of progressive symptoms.  Hence, the reason for the
gluten challenges.
I hope one day that a biopsy challenged in culture is a norm of diagnosis
because the gluten challenges devastated my health and I firmly believe that
they were the prime reasons for a more difficult period of recovery which
however, continues in a positive manner at 11 months of treatment.  I no
longer suffer severe joint pain and muscle weakness, extreme fatigue and
coldness nor incredible bloating, stomach spasms, and steatorrhea.  I was
also having memory dysfunction and slow healing of wounds;  I had a hand
burn which didn't heal for six months until I went gluten-free the first
time.  My weight has more than half returned now.  For those who are
considering a gluten challenge for diagnosis, know the risks because I
didn't fully know the risks as I do now nor ever expected the rapid decline
of my health from such short gluten challenges;  At the same time, be a
detective and consider all the possibities with an experienced doctor.
Pls. see Part 2.  Laura Y.






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