<<Disclaimer: Verify this information before applying it to your situation.>>

I got a lot of replies from people who did not know how to interpret their
tests either, so I copied this very helpful letter. I tried sending it as an
attachment, but it wouldn't work.


Finally!  Enclosed are the results of the tests done as part of the Center
for Celiac Research (CFCR) incidence study. Thank you so much for your
patience.  Make a copy of your results for your doctor to add to your
medical records and keep one for your personal files. Now that you have
them, what do they mean?  Based on information I have received from CFCR and
other information I have gathered, I would like to suggest the following.

An local GI doctor once told our group that active celiac disease requires
that 3 factors be present.  Each of these factors has implications in view
of recent research on celiac disease.

Genetic predisposition--Relatives of known celiacs are at significantly
increased risk for celiac disease. Those with symptoms of celiac disease
should be screened.  (CFCR has a posting of  initial research findings
at http://www.celiaccenter.org) An environmental trigger--This turns the
genetic predisposition for the disease into an actual illness.  A normal
test now only says that you do not have celiac disease at this time.  It
does not mean you cannot develop celiac disease in the future. Celiac
disease can appear at any age, young to very old. Get re-tested if
symptoms develop, especially if there is a family history of celiac
disease Gluten in your diet-Without gluten in the diet, there will be no
antibodies for the blood tests to find.  Blood tests (or biopsy) won't
find celiac disease if you have already taken the gluten out of your
diet, so it is important to get tested BEFORE starting on a gluten-free
diet. Once celiac disease has been diagnosed, however, the same tests
can be used to measure compliance to the gluten-free diet, and should
show normal/negative test results. If a known celiac already on the diet
has high antibody levels, he first needs to examine his diet.

THE BASICS TERMS :

Gliadin--This is the name for the specific protein that is toxic to those
with celiac disease.

IgG  and IgA-These are  two classes of antibodies produced by the body.
The body makes other classes of antibodies, but only IgG and IgA are
involved in the celiac reaction to gliadin.

AGA (Anti-Gliadin Antibody)-This tests for a reaction to gliadin,
looking at both IgA and IgG antibodies. These AGA tests are more useful
at ruling out celiac disease than finding it.

EMA (Endomysial Antibody)-This tests for another type of reaction to
gliadin, found only in IgA. This is currently the most reliable test
available for detecting celiac disease.

IgA Deficiency-In this condition, a person does not produce IgA (Class A
type antibodies), termed an IgA Deficiency.  Since the EMA test detects
only an IgA reaction to gliadin, this usually reliable tool can not
detect celiac disease in those with an IgA deficiency since only IgG is
present. If elevated IgG levels or symptoms suggest celiac disease in
someone with an IgA deficiency, the only screening option currently
available is a biopsy.

Anti-htTG (human tissue transglutaminase)-This is the new test being
developed by CFCR.  Since it detects both IgG and IgA antibodies, the
anti-htTG test would be more effective than EMA since it would find
celiac disease in those with an IgA deficiency.  Besides establishing
the incidence of celiac disease, the CFCR study is determining the
accuracy of this new test.

3 BASIC TESTS were done on EVERY SAMPLE in this study.

AGA-IgG--Normal Value is less than 24.   This test is an index of a systemic
reaction to gliadin.

AGA-IgA--Normal value is under 18.  This test is more specific of a
mucosal (like the intestine) reaction to gliadin.

Because the AGA antibodies are not unique to celiac disease, the results
of these tests can be elevated in a subject without celiac disease. This
can be caused by an allergic-type of reaction against food or there can
be a cross-reaction during an infection.  Anti-EMA-Currently this is the
most reliable test to detect IgA antibodies found in celiac disease.
Since it requires a visual examination of a specially prepared slide, it
is time and labor intensive (increasing costs) and dependent on the
technician 's skill and  experience.

If the results of the AGA-IgG, AGA-IgA, or the EMA were abnormal, additional
tests were done.

Total IgA--If the AGA-IgA test suggested the possibility of an IgA
deficiency, Total IgA was measured to determine if an IgA deficiency exists.
If this test was done, that number will be shown on in the results. There is
no normal value for this test since it varies by age. (If there was a value
in the AGA-IgA box, this test was not needed and the space for Total IgA
will be blank.)

While an IgA deficiency is relatively rare (~1 in 200), a high percentage
(~5%) of those with an IgA deficiency have been found to have celiac
disease.  Currently, a biopsy is the only way to detect or exclude celiac
disease in these cases when elevated AGA-IgG suggests a problem.

Anti-htTG--In cases where the test results were abnormal, the anti-htTG test
was also performed.  If done, the results were noted in the comments.  Since
the anti-htTG can detect both IgG and IgA components, it is expected to be a
more useful tool than the EMA since it can detect celiac disease in all
subjects, even if an IgA deficiency exists.

IF YOU ARE ALREADY ON A G.F. DIET TO TREAT CELIAC DISEASE... Without gluten in
your diet, the antibodies to gliadin will disappear from your blood in 4-6
months.  If you are on a strict G.F. diet, your test results should read
"Normal Antibody Levels."  I am happy to say almost all the known celiacs
tested as part of  the MCSC screening had normal test results & passed the
"g.f. diet exam"! Keep up the good work.  Those diagnosed celiac with
abnormal test results need to re-evaluate their g.f. diets.

IF YOU WERE REFERRED FOR FURTHER TESTING...Of the 190+ tested as part of the
MCSC screening, only 17 came back with notes or referrals for further
testing.  In some cases, celiac disease was suspected and a biopsy
suggested, while others with elevated antibody levels had celiac disease
ruled out or needed to be re-tested in 6 months.  If you are one of these,
it is important to contact CFCR with the results of follow-up testing or
other decisions.  They need your test results for their research and also to
verify the reliability of their htTG test. If you contact CFCR, please use
the reference number listed on your test results.

        To date in this study, CFCR has found that in all cases of those
who had elevated EMA levels and underwent biopsies, the diagnosis of
celiac disease was confirmed.  It is important to follow up with a
biopsy, when recommended, so that celiac disease is confirmed or
disproved, since this is the only way that CFCR can assess the accuracy
of their new test.  Thanks again!  Bev Lieven

If you find errors...The information on the result forms has been reviewed.
The obvious errors--names misspelled, relationships mislabeled  (If NOT a
blood relative of a diagnosed celiac, the subject is termed "Healthy"),
addresses of group members, age (DOB is coded so don't worry about that),
etc.  have been noted  A list is being compiled so Dr. Gerarduzzi can
correct the records.  If you find other errors, please contact me and I will
add the corrections to my list. Contact me at.


Additional Resources for you or your doctor...
   Center for Celiac Disease Research--www.celiaccenter.org (Telephone, Fax &
      address on results.).
   "Detecting Celiac Disease in your Patients", by Harold T. Pruessner, M.D.
      (from the Journal of American Family Physicians).   Find it at--
      http://www.aafp.org/afp/980301ap/pruessn.html
   New research on detecting celiac disease earlier is being done by Dr.
      Kenneth Fine.  If you have symptoms, but were surprised by normal test
      results, you may find Dr. Fine's web sites
      interesting--http://www.finerhealth.com and http://www.enterolab.com