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

   Danna's name was the first we heard after our son's
diagnosis. We rushed out and got her book and found it
of immense help. So much so, that we've bought 8-9
copies over the past few years and made sure our son's
daycare provider, school teachers and school nurses
had a copy. We gave the book to them at the beginning
of the school year together with a short talk on
celiac disease and on how we expected our son to be
treated: call us if there is to be a cake, pizza, ...
at school so we can accommodate our son with a GF
version.

   I made this preface so my comments would not be
misunderstood:

   - A previous post said that Danna Korn will be
     speaking at the International Symposium on Coelic

     Disease in Northern Ireland. She will be there as

     a patient representative. She'll be representing
     the views of a person with Celiac Disease.

     Any US representation is welcome but it would be
     nice if a person WITH celiac disease was actually
     presenting "the views of a person with celiac".
     As we celiacs know there can be no substitute for
     first hand experience for the trials and
     tribulations of our

      stealth/chameleon/now-you-see-it-now-you-don't

     tricky little disease!

   - Given the many organizations/'voices' that are
     involved with celiac in the US, and the many
     contradictory positions on issues such as stool
     testing vs. biopsy, GF status of vinegar,
     position on oats, DH and GF eye-liner, ... we are
     a long way from any concept of "a national
     spokesperson for Celiac Disease". So to hang that

     title around Danna's neck is not only inaccurate
     but probably does her a great disservice given
     these differences in the community. Anytime
     Dana, "the national spokesperson", takes a side
     on any one of these issues she probably gets
     flamed by the other side.

    I say: let's settle the differences within the
celiac community on these issues first. When we
actually get some agreement then we can worry about
electing a "a national spokesperson", if we really
feel we need one. At least then such a spokesperson
would have a cohesive group and a consensus position
to represent.

Regards ...

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