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

Patrick Dean <[log in to unmask]> wrote about the possible value of a
preventative GF diet for a child at risk for Celiac.  I have worked with a
number of the cel-pro experts in the construction of the genetics file
(CEL-HLA) and other files which relate to this topic.  Although I am not a
medical professional, I would like to comment on Pat's post, based on my
experiences:

>My wife and I both have Celiac disease.  Our GI told us we have only a
>20% chance of  having children with Celiac.

I have never seen a study of the CD risk in your very unusual genetic
situation.  I will ask some of the cel-pro experts about this and report back
to the list.  This could take a while.

>We asked him if we should
>start our children (when we have them) on a GF diet to be safe.  He
>said definitely not.  He said if the baby never eats gluten then we'll
>never actually know if our child has Celiac.  If we feed our child
>gluten containing food then we'll know early on because we'll be
>looking for it.  He said there was no point in possibly inflicting the
>child with a difficult and life long diet unnecessarily.

My personal view is that your doctor did not give you the correct advise.
Although some CD experts do agree with your doctor, I have seen more that do
not.   Here is the opposite argument:

a)  Your baby will not know what is being missed if he/she doesn't get gluten
for the first 2-3 years of life, and if you already have a GF kitchen, it
should not be much additional work.  You are not making a lifelong decision for
your child by starting off GF. If you child is going to develop CD, let it be
after his/her major developmental milestones have been met.  There are many
examples of children who had difficulties with language and other development
during their period of undiagnosed CD (my son was one of them).  Just because
you are "looking for it" does not mean you will complete the diagnostic process
before some damage has occurred.  CD often has few or no external symptoms.

b)  You can do HLA testing from the cord blood. While not perfect, it gives a
basic idea of whether your child is at risk for CD.  As an example, if both of
you carry the DR3 marker, and your child does not inherit DR3 from either of
you, the probability of his/her getting CD is remote, and then you could not
bother with a GF diet.  However, if DR3 was inherited I suspect the risk of CD
would be higher than 20% -- it is 30%-40% in HLA identical siblings for example.

Some doctors are concerned that when CD develops later in life, it has more
atypical manifestations and can be difficult to diagnose.  However, once you
introduce gluten into your child's diet, you could check the endomysial
antibody levels regularly.  Statistically there is well over a 90% chance you
will catch the CD, whether or not there are traditional symptoms.  In order to
get a positive biopsy, there will by definition have been damage to the
intestine, but with an older child at least it would be less likely to
interfere with development.

Bill Elkus
Los Angeles