<<Disclaimer: Verify this information before applying it to your situation.>>
 
Michele Kratzmeier <[log in to unmask]> asked:
 
> Since it is an inherited disorder -- does that mean that my
>      husband or myself have it and 1) don't know it (ie. symptoms
>      are mild) or 2) haven't been exposed to the trigger yet?
>      Should we all get tested or will the antibodies not be present
>      unless the celiac is active?  Is there a way of telling if
>      we are prone to developing this disease?
 
here are many good questions here.  Most are covered in more detail in the FAQ
(frequently asked questions file) which can be retrieved by sending an email to
[log in to unmask] with the body of the email being GET CELIAC FAQ
 
Briefly, though, the genetics of Celiac have not been fully worked out.
Something like 90%+ of all Celiacs have certain HLA markers which are found in
only 25-30% of the non-Celiac population.  It is not known why the great
majority of people who have the "at risk" HLA markers never develop Celiac,
some speculate there is a viral trigger, or a stress trigger.  Geneticists
suspect there may be additional genes to be discovered which will provide a
better prediction of who may get CD.
 
All first degree relatives, even if you have no obvious gastrointestinal
symptoms, are recommended to get endomysial antibody blood tests, which are
>90% predictive of whether a biopsy will be positive.  If the test is negative,
it is recommended that you be retested in 2 to 5 years in the future, or if
classic celiac symptoms ever develop.
 
If the rest of your family is HLA typed you can get a better idea of which
individuals are at risk.  As an example, if your child has one copy of the DR3
haplotype, then there is a 50% chance that a particular sibling will also be
"at risk".  If your child has two copies of DR3 (much less likely), then every
child will be at risk.  Siblings with the same haplotype as the CD child have a
risk of eventually developing Celiac which has been estimated in the 20% - 40%
range, if my memory is correct.  Very few families go to this trouble, due to
the lack of strong predictive value and the availability of endomysial serum
testing.  Also, this paragraph oversimplifies the HLA markers.  For more
details, the Marsh treatise has a whole chapter on this subject.
 
By coincidence, just today I had blood drawn on my 4 year old daughter for the
endomysial test.  As long as she had to be put through the venipuncture, we
took additional blood for HLA typing, figuring there was a 50% chance she would
not have DR3 and if so, it would be extremely unlikely that she would ever
develop Celiac.... that's something as a parent, I would like to know.  Our
insurance company told us they would pay for the endomysial test ($75) but not
the HLA typing ($165).
 
> 2)  Are there varying degrees of being celiac?  What I mean is
>      could something like toaster crumbs affect one person and
>      not another?
 
There are varying degrees of damage found to the intestines upon biopsy, but as
far as I know, this has not been correlated with the amount of gluten being
eaten prior to diagnosis.  Some Celiacs have no obvious symptoms from eating
gluten, others react very strongly to small amounts.  However, all
biopsy-confirmed Celiacs are recommended to cease eating things which contain
gluten,  no one should just "lighten-up" on gluten.
 
>  3)  How harmful to the villi is it if he slips occasionally,
>      like me allowing him to eat McDonald's french fries once or
>      twice a month?
 
This question leads to one of the greatest debates in the Celiac community.
There is no single accepted standard for how much gluten a typical Celiac can
ingest without causing harm.  There are people who feel very strongly that
absolutely none should be consumed, and others who feel just as strongly that
small amounts can be tolerated without harm... on the order of 15 to 100
milligrams per day.  For reference purposes, Don Kasarda helped me calculate
that 100 milligrams is about one fiftieth (1/50th) of a slice of the type of
bread my family usually buys.  A few toaster crumbs ought to be well under 100
milligrams.  European celiac societies generally allow the consumption of
"well-washed" wheat starch with very low gluten content, and American celiac soc
ieties generally advise against it.
 
The cel-pro discussion group (60+ medical professionals including celiac
researchers, celiac clinicians, etc.) have been discussing this very topic over
the past month.  The Listowners are in the process of editing and summarizing
that discussion, and will soon post the summary and instructions on how to
download an edited copy of the discussion itself (which is far too long to be
posted here).
 
I should add that I am not a medical professional, but am the parent of a
Celiac, and one of the Listowners of this discussion group.  The comments I
have made above were based on my reading of posts on the List, and general
reading of the Celiac literature.  Others may have more direct experience and
should feel free to send in their own views.
 
Bill Elkus
Los Angeles