<<Disclaimer:  Verify this information before applying it to your situation.>>
 
Patty,
        As a Specialist in Blood Banking, I feel obligated to pass along
further information about HTLV-1. First of all, HIV was first called
HTLV-111 until research showed that HIV is not in the same class as
HTLV-1 even though they are both retroviruses (They contain RNA in their
core instead of DNA). So please do not get the idea that you are testing
positive for HIV or anything similiar to it.
        HTLV-1 is a human Type-C retrovirus that has been etiologically
associated with adult T-cell leukemia (ATL) and tropical spastic
paraparesis (TSP), as well as HTLV-1 associated myelopathy (HAM). More
recently HTLV-1 has been found to be associated with polymyositis,
arthritis and infective dermatitis. Antibodies to HTLV-1 are found with
high frequency in persons affected with these disorders although cases of
HTLV-1 antibody negatice cases of ATL, TSP, and HAM have been reported.
        HTLV-1 infection is endemic in the Carribbean, southeast Japan,
some areas of Africa, Central and South America and recently in Melenesia
cna central and northern Australia.
        HTLV-1 causes ATL in only 2-4% of infected individuals and
typically only after long latency periods (20-30 years). ATL appears to
result from childhood xposure to HTLV-1. Infection with HTLV-1 during
adult life results in TSP/HAM-like illness. The lifetime risk for TSP/HAM
for those who live in an endemic area is estimated at less than 1%. The
presence of HTLV-1 antibodies in an asymptomatic person indicated that
the individual may be infected with the vrus and should not donate
blood.It does not mean that the individual has ATL or TSP/HAM or will
develop ATL or TSP/HAM.
        HTLV-1 does not cause AIDS and HTLV-1 is only remotely related to
HIV.
        More specific tests, such as the Western Blot assay or
radioimmunoprecipitation assay (RIPA) are necessary to confirm repeatedly
reactive specimens as positive for antibodies to HTLV-1. This is because
the tests done by blood donor centers, the enzyme immunoassay (EIA) or
the ELISA methods have high sensitivity but lower specificity. In order
words, the test is designed to have false positives but no false
negatives, as you would rather falsely discard a unit of blood that was
really negative. But you would not want to release for use a unit that
tested negative but was in fact positive. All of the donors that test
repeatedly reactive, such as you, are then tested by a confirmation test.
If this test is negative, then the EIA or ELISA positives are flase
positives.
        The most common cause of a false positive is the flu vaccine.
During the 1991-1992 influenza season, fewer than 2% of recently
vaccinated individuals gave false positives for HTLV-1 antibodies. During
the 1992-1993 influenza season, it was estimated that 2-5% of recently
vaccinated individuals tested positive for HTLV-1 antibodies.
        Most of this information was taken from the test kit information
insert of Abbott's HTLV-1 2.0 EIA kit. Abbott supplies most of the test
kits to donor centers for HTLV-1, HIV and Hepatitis B.
        Based on the information you have given, I think it is safe to
say that the information given to you is correct and that you do not have
an HTLV-1 infection. I'm glad to hear that you have been donating blood;
it's unfortunate that this has happened to you and that you cannot give
in the future. If you think that maybe there is a connection between
testing positive for HTLV-1 and being celiac, I really don't think there
is a connection. I donated many times before my diagnosis and many times
since then, I've yet to test positive for anything.
        Ellen Eagan