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Thanks to the 30+ members of this Newsgroup who have responded to my
previous posts and have provided support and encouragement over the past
year while I sought a diagnosis.
 
Brief history: Indigestion, acid reflux, bloating, gas, diarrhea, mild
depression and weight loss severe enough to seek medical assistance last
year. Biopsy negative, IgG positive, IgA negative, lactose intolerance
positive. Primary care and first specialist said not CD. Responded well to
GF/LF diet.
 
Based on recommendations of members of this Newsgroup and members of the
Rochester, NY Celiac support group, I sought a second opinion from a
digestive disease aware specialist this week. He reviewed my history and
symptoms, did a brief physical exam and looked at my fingertips. He
observed that the pads of my fingertips were very smooth (shallow ridges
and valleys in my fingerprints) and told me this is a common symptom among
celiacs. (I was not aware of this as a symptom. He said it had something to
do with protein sysnthsis.) He said that based on my history and symptoms
it is "very highly probable" that I have CD, ordered some blood work to
check for malabsorption and rule out other less likely possibilities,
x-rays to check for small bowel lymphoma, and will review the slides from
my previous biopsies.
 
His prescription: Stay on the diet. He told me that celiacs who stray are
much more likely to develop lymphomas.
 
That's definitive enough for me.
 
What I learned:
 
See the right doctor: Several people early-on suggested seeing a
celiac-aware specialist. In retrospect, I probably could have avoided at
least six months of feeling poorly if I had taken this advice initially.
 
Listen to your body: Although the advice I received was mixed on the value
of going after a concrete diagnosis, it was unanimous on going GF because I
feel better gluten-free. My new gastroenterologist said "the patient
knows". I did a fair bit of experimentation with gluten and lactose after
initially going GF/LF. This prolonged my distress. Again, in retrospect, I
would have been better off accepting my initial conclusions instead of
fighting them.
 
Be persistent: While opinion was mixed on the value of a diagnosis, as a
retired research chemist, I felt particularly unsatisfied in not knowing
the cause of my problems with certainty. I recognize that this is my
personal bias so I am glad that I persisted and found a supportive doctor.
 
Now I'm reading everything I can on gf diets, looking into bread machines,
etc and feeling better every day.
 
Thanks again - Joel
 
Joel H. Elias - Pittsford, NY
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