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From:
"J. Murray" <[log in to unmask]>
Date:
Fri, 22 Dec 1995 16:44:41 -0600
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<<Disclaimer: Verify this information before applying it to your situation.>>

There have been many recent statements on the list that I feel I should
reply to regarding the diagnosis of Celiac disease.
The 2 most important and accepted criteria for the diagnosis of CD in
adults involves the demonstration of damage in the intestine and a
subsequent response to the elimination of gluten from the diet. This
combination is usually very adequate to identify the disease.  There are
caveats to this. One the biopsies should be taken while the people has
been on a normal ( as opposedto gluten reduced or free diet), two
several separate biopsies should be taken from the intestine( during the
same proceedure) 3. these biopsies need to be properly oriented and
stained ( quality varies dramatically), 4. An experienced pathologist
needs to read these biopsies and recognize that there is a suspicion for
celiac disease. 5.  The GI has to interpret the results appropriately.
Sometimes the pathologist will describe the abnormal findings but not
mention celiac disease as a possibility.  If the GI is aware of the
findings relevance to celiac disease he may not make the connection.
Single biopsies may miss patchy changes.
Blood tests( endomysial, reticulin and gliadin ) have been around for
several years in various forms.  These tests when used in research
studies in europe mostly have been shown to coorelate well with classic
celiac disease found on biopsy. These tests are not perfect.  There is
much variation between labs.  There are people who have celiac disease
whose blood tests are negative but who have it on biopsy. There are some
people wo may have false positive tests( that is have a positive test but
dont have the disease), though this is rare.
Whether blood tsts alone can replace the need for biopsy is still
undecided and broader experience in general usage will determine how well
they stand  up to the test of time.
This all goes to illustrate that the diagnosis is not simple and
sometimes it can provide problems for patient and doctor alike.
It also shows that quality in all things makes a big difference.
Sometimes cost containment does not not deliver quality. For those of us
in the USA where HMO's PPO's and other managed care systems are growing
there may be decreased access to quality specialty care due to const
containment measures that limit patients access to special services or
make it very difficult to get good care for conditions that are rare or
ill understood. Celiac disease will need vigorous representatioin at all
levels to get it on the managed care map and keep it there.  How can one
influence health care decisions.  If you are an individual who has choice
over what kind on health insurance you get ( lucky you if you can afford
it) ask a lot of quastions about how they deal with rare diseases?, do
they allow access to academic centers? what is the referral process for
out of network referrals?  etc. If you work for a large corporation, try
to get on the employeee committees that oversee negotiation with health
insurers, etc. They have to pay at least lip service to quality issues.

Not medical advice
heck it's not even good political advice
Joe Murray

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