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During the gluten challenges, my Gastroenterologist, who is Chief of
Gastroenterology requested that I make "complete damage" to ensure the
biopsies would be positive.  I did the gluten challenges with the hope that
if I was diagnosed, family members with digestive symptoms would decide to
be tested as well.  At the peak of the 3rd gluten challenge, I was ingesting
gluten up to 7-8 times a day and developed the diarrhea the doctor asked me
to provoke for the EGD with biopsies.  Unfortunately, my most severe
symptoms lagged until the night after the endoscopy;  For days and weeks
following the 3rd gluten challenge, I could bearly walk from severe muscle
weakness and fatigue, and literally took 20 minutes to drink 2 oz. of
elemental GF baby formula due to severe stomach spasms and extreme feeling
of fullness despite intense hunger.  Solid food was painful.  And due to
severe joint and bone pain, I had heating pads on all my joints 24 hours a
day and was intensely cold despite layers of clothing/blanket and a warm
room.  I suffered additional weight loss (a weight I had not been since
probably elementary school) and heart symptoms which were later diagnosed as
"mitral valve regurgitation" explained by the cardiologist as due to
insufficient blood flow to the heart.  I attribute my severe reaction to the
gluten challenges as from both duration and especially gluten load.  During
the gluten challenges, I experienced the feeling of pincher bugs biting at
my stomach from ingestion of my own homemade whole wheat and rye crackers.
My Gastroenterologist, who is Chief of Gastroenterology, not only found
various duodenal abnormalites, (scalloping of duodenal folds and nodular
mucosa) suggestive of villous atrophy in various medical literature, but he
found through the Given capsule that my stomach or gastric emptying rate was
slow and that I had inflammation of the stomach lining.  After the
endoscopy, he reported the results that all 10 duodenal biopsies were
negative but because of the gross abnormalities he exclaimed he saw, he
wanted to do one more test, the Given capsule which because it was
experimental at the time, I was asked to become a volunteer participant in a
study of malabsorption syndrome.  Before offering my diagnosis, he then
asked for a 4th gluten challenge because he explained that my damage could
be further into my jejunum and he said that he could probably get a positive
biopsy by taking even more than the 10 biopsies he took the first time.  I
declined because of the deterioration in my health.  My next to final test
was a bone density scan which revealed osteopenia.  The final collaborative
test which I requested myself was HLA typing which revealed the susceptible
genes.  My primary doctor asked me why I needed my genes identified because
she explained that the doctors were now sure I have CD;  I guess I was still
trying to be open-minded that it could be something else as I was when all
the doctors kept telling me I had IBS.  I’ve fortunately come short of
adding gluten back into my life because if it was something else, it would
still be causing me problems – wouldn’t need a gluten challenge for that.
Laura Y.







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