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Hi All!

I was overwhelmed at the number of responses!  There were a couple of common
themes going through them:

1) it's hard to explain to others why you're on the diet when you don't feel
any better because you didn't actually feel bad to begin with.  Some people
don't mind feeding you things that you'd knowingly avoid (malt was an
example) because they know you won't collapse at the dinner table.

2) having no classic symptoms is difficult because you don't know when
you've slipped up.  However many mentioned it was not a bad thing not to
experience many of the classic symptoms we're reading about on this list.

3) I say "classic" because other symptoms do rear their heads.  Especially
common was anaemia, and a few people mentioned others eg. low calcium, as
you'd expect when there's something wrong with your intestines.

I have to say at this point that I am as healthy as a horse, I've always
been tall for my age,  and I've have never been refused when giving blood -
I always specifically ask about the iron, just out of curiosity, and it's
always fine.  There were quite some number of other symptoms mentioned, and
now I'm starting to think...well, I have a sore back every once in a while
(three people mentioned backaches).  How do you avoid blaming everything on
an accidental gluten ingestion when it's not so obvious that you've had one?

4) The best way to remain healthy is to get on the gluten free diet in the
way that smokers should give up before they get cancer.  There were some
brave stories from people who have survived all sorts of complications that
I'd rather not experience for myself.  There were many responses suggesting
that the best prevention is to get used to the diet while it's still a
choice.

5)  A couple of letters from parents with asymptomatic kids, wondering how
to deal with them - I have no answers!  The thing that's convincing me to be
more strict is the fear of getting symptoms.  How do you give this sense of
responsibility to kids?  Why should they miss out on the goodies at the
birthday party when they don't feel sick?

6)  Negative blood tests seem to be a good indicator of how you're doing on
the gluten free diet.  I'll ask my doc about a followup to the original
blood test now that I'm gf - I expect it should drop if I'm doing the right
thing (hmmm, maybe I should wait a couple of weeks!).  Yet there are
asymptomatic celiacs with negative blood tests who are taking risks that
must be resulting in gluten ingestion.  Is genetic testing the best way for
asymptomatics like myself?

A number of symptomatic celiacs responded (not one lecture, thanks for
understanding my intention), most said they'd been asymptomatic for at
least some time in their lives.  So is an asymptomatic celiac just a
symptomatic-celiac-in-waiting?  Does avoiding gluten prevent or delay
that change, or does it make us more sensitive (my dad seemed to get
more sensitive to incidents after going gf - I think I've read
discussion on this).

Okay, to stir the pot a little - among symptomatic celiac discussions, it
seems some people suggest that you should feel free to drink distilled
alcohols if you don't react, but avoid them if you do.  Does that mean I can
drink beer, as my only reactions are falling over and hangover... Seriously,
some celiacs can eat oats because they don't react, so how do I know if I
can?  If you should only avoid foods that react with, then I'm ordering in
right now!  If I should avoid gluten foods that don't affect me, shouldn't
all you guys?   I know that's a huge question - where do we draw the line?
Is an asymptomatic celiac picking croutons off their salad risking any more
than a symptomatic celiac eating oats when they don't affect them
specifically?

For myself I've decided to avoid everything I know has gluten (including
oats, and sadly, beer).  Anything I'm in doubt about I'll eat then unless
there's an alternative (eg someone dropped a chocolate on my desk I wasn't
sure about - I ate it, kept the wrapper to remind to me check for next
time).  Strict but not paranoid?

Thanks for the discussions, I've still got to reply to many personally, but
I'd love to see the general discussion continue.

Regards,
Ingrid.