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.........................................................
:   Clinical Presentation of Celiac Disease in Adults   :
:   -------------------------------------------------   :
: by Joseph Murray, MD     summarized by Mary Guerriero :
:                                           & Jim Lyles :
:.......................................................:
 
Dr. Murray is Assistant Professor of Medicine, Division of
Gastroenterology, at the University of Iowa, where they treat over 500
celiac patients.
 
Dr. Murray would like to see the U.S. doing research on CD at the same
level the Europeans are doing.  There are very few researchers in the
U.S. doing sophisticated research in this area.  An exception is Dr.
Kagnoff in San Diego.
 
The most common symptoms of CD include extreme diarrhea, flatulence,
bloating, and weight loss.  The malabsorption associated with CD can
cause deficiencies in vitamins E, A, and K, as well as calcium and
folic acid.  These substances are primarily absorbed in the first
third of the small intestine, which is the area most affected by CD.
 
Poor digestion means food is not broken down as it should be.  For
example, a milk sugar called lactose is normally broken down by an
enzyme produced in the tips of the villi in the small intestine.  In
active CD these tips are damaged, so that the enzyme is not produced,
leading to poor digestion of lactose and an apparent milk intolerance.
 
Because we are so closely associated with CD, we may wonder why
physicians don't diagnose it more often.  Dr. Murray said in medical
school students are taught "pattern recognition" or "disease
patterns".  When a patient comes to them, they learn to recognize
certain symptoms and associate certain diseases/conditions with those
symptoms.  With celiacs, the symptoms can vary so widely that there is
no particular pattern for the average physician to recognize.  He then
went through a list of patients with varying symptoms to illustrate
the problem.  This can make CD very difficult to suspect.
 
What symptoms do active celiacs show at the time of diagnosis?  Along
with the "typical" symptoms, there are also some more unusual
manifestations of CD:
 
   chronic fatigue
   neurologic problems
   lymphocytic colitis or pancreatitis lymphoma
   IgA deficiency
 
Some common misconceptions:
 
  *  "If you are constipated, then you can't have CD."  This is not
     true.
 
  *  "If you are obese, then you can't have CD."  This is not true.
 
  *  "If you are tall, then you can't have CD."  Dr. Murray has three
     female CD patients who are over six feet tall.
 
Dr. Murray believes we should screen all type I diabetics for CD,
especially Caucasians.
 
What should you do if you feel you have CD and are not being heard by
your physician?  Go in with written material about CD.  Physicians are
more apt to pay attention to what you are saying if you have something
in writing.  If you are diagnosed, but still have unexplained
symptoms, be persistent.  You, and no one else, are responsible for
treating your disease, so take it seriously.
 
We need to make others aware of CD, so we can get funding for research
and be recognized as having a legitimate and potentially serious
illness.
 
Dr. Murray responded to some questions from the floor:
 
 
Q:  What effect does ingesting alcohol have on Celiacs?
 
A:  There are two questions to consider:
 
    1.  For example, does alcohol distilled from wheat or barley
        contain gluten?  In the lab it can probably be shown that no
        gluten will make it into the distillate; but in commercial
        distillations is this true?  We don't really know.
 
    2.  If you have increased permeability in the gut (as in untreated
        CD) you may get a higher amount of the alcohol than normal.
 
 
Q:  Are there routine tests that a celiac patient should periodically
    have?  What about repeat biopsies?
 
A:  Dr.  Murray routinely does gliadin and endomysial testing on a
    yearly basis.  If a patient is doing well on the GF diet, and has
    negative gliadin and endomysial test results, then a repeat biopsy
    is probably not necessary.  However, for patients diagnosed at an
    older age (approximately 35 years of age or more) or with
    neurologic complications, Dr.  Murray will normally perform a
    repeat biopsy.  Also, in patients where he is not sure of
    compliance to a GF diet, Dr.  Murray will rebiopsy every five
    years to ensure that they have healed and are remaining healed.
 
 
Q:  Are there other diseases that cause atrophy of the villi and can
    be confused with CD?
 
A:  Yes, there may be as many as 50 other diseases.  However, in a
    Caucasian American, the most likely cause of total villus atrophy
    is CD.  In centers with a very large African-American population
    or with a large concentration of HIV-infected people then HIV may
    be the number one cause of villus atrophy.  But there are
    approximately 177 million non-Spanish Caucasian Americans for
    which CD is the most likely cause of total villus atrophy.