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    I have had some interesting experiences with the celiac blood tests
recently that you might want to know about.  These experiences confirm
for me the problem with a lack of national standards in doing the celiac
blood tests at all local laboratories.

    A few months ago, I had a call from the head of some Houston lab
asking about the celiac tests.  He was unfamiliar with them.  He was
going to send the blood somewhere else, but he didn't know what to ask
for.  This telephone call made me even more uncomfortable with local
laboratories.

    Before doing a routine colonoscopy in February (my first since I was
diagnosed with CD 14 years ago),  I asked for the Endomysial & tTG tests
to be done to test for compliance on the GF diet, since my last test
during our chapter blood screening came back positive 1-1/2 years ago.
The results of the "tTG" came back 4 on a negative scale of less than 20
is  negative.  Although I was pleased with the
negative results, I had questions.   Since only ONE test result came
back, I called both labs to clarify.  And  although my new GI gave me a
box for the lab tech to send to Prometheus Lab in CA, it was sent to
another lab in Austin, who in turn sent it to American Medical Labs in
Chantilly, VA.  After 2 calls, I finally got the information that they
thought both tests (EMA & tTG) were testing for the  same antibody.  A
PERSON read the results of the test.  So they only did one test, the
EMA, but they thought they did the tTG.   NOT!   I happened to have a
call from Dr. Fasano, co-director of the University of Maryland Center
for Celiac Research, and I asked him to clarify.  He said that  the
antibody to look at is the same for both EMA & tTG; however, the EMA is
read by a person and the tTG is done by a machine (which is more
reliable).  So the Virginia lab really didn't do a tTG test, as they
thought.  I'll redo the test again next year and again try to get
Prometheus to do them.
     Unfortunately, there are still no universal national standards for
doing these tests.   Pathologists usually are trained, I understand, to
see middle- to full-blown Celiac Disease.  They tend to not recognize
early stages. Similarly, the blood tests tend to pick up middle- to late
stage CD.   I have heard good GI doctors say a borderline positive
celiac test result is like being "a little pregnant."


**Mashed Potatoes at  GOOD EATS RESTAURANT, Houston.
     We ate at Good Eats one Saturday night in February.  I ordered a
smothered chicken breast (poblano peppers, onions & cheese) along with
green beans and mashed potatoes. We said hold the gravy.  I was,
however, served mashed potatoes with gravy by mistake; another waiter
questioned my choice of potatoes because they use a commercial ranch
dressing mix in them!  Of course, that was not acceptable.  Bob Levy of
Bob & Ruth’s Travel & Dining Club has warned us about mashed potatoes,
but I did not ask enough questions.  Be aware!!

--
Janet in Houston
Celiacs Helping Celiacs
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* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *