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> You are to be congratulated!  You have done much to increase public
> awareness and, hopefully, medical professional awareness.  I wonder how many
> diagnoses occurred since the fair just because a physician noticed "gluten
> free"?

It will take quite a few fairs to raise anyone's awareness, I think.
If you weren't specifically looking for it on the labels, you wouldn't
have noticed "gluten free" at the fair as being any different from the
other baked goods surround them.

> There is at least one physician in Santa Barbara county who all but
> refuses to diagnose Celiac because of "...imposing a lifetime diet that is
> so difficult and tastes so bad."

Difficult, yes, in that you can't just go to Burger King or Pizza Hut
when you're hungry, and you have to do your own baking to get any kind
of tasty variety.  I think that "tastes so bad" is only true if celiacs
are relying completely on prepackaged rice or tapioca bread and not
researching just how many spices and flavorings ARE gf and can be used
to jazz up one's cooking.

> Just a thought regarding your chronic fatigue syndrome.  Perhaps you are
> more sensitive to gluten than you thought but your symptom is fatigue vice
> other, more classic, symptoms.  Mary Alice always reacted with unexplained
> fatigue when exposed to gluten long before the other symptoms set in.  She
> felt that fatigue was the most common symptom of celiac disease.

Yes, the thought has occurred to me (and my doctor).  I've been on a
completely gf diet for up to 6 weeks, and didn't feel any better than
when I was just avoiding wheat and barley, and visiting rye only
occasionally.  Also, there are a whole lot of other symptoms that
constellate with CF(ID)S than just fatigue - that's why you don't
get a diagnosis of CF(ID)S until other sources of fatigue have been
ruled out.  One of the key indicators is an "allergy to exercise" -
on a day when I'm feeling good, a too-brisk walk (or one too many
hills) will leave me feeling pleasantly tired afterwards, but after
several hours or the next morning, my body reacts like I have a flu
and I'm sick for 1-2 weeks.  Has something to do with relase of
cytokines that trigger all the body's illness reactions just like
a virus would, but without any virus to be found.  (The research is
fascinating, and someday they might even figure out what causes this
disease!)

Another thing the CF(ID)S researchers have discovered is that we have
a metabolic defect involving not being able to transport fatty acids
across the mmitochrondrial membranes to be metabolized for energy,
a defect that can be somewhat alleviated by the right nutritional
cocktail of Acetyl-L-Carnitine, Coenzyme Q-10, fructose, and branched
chain amino acids.  Another fascinating field of research.  Most of us
don't go for the expensive and experimental tests, but experientially
the "cocktail" helps quite a bit.  An interesting piece of collateral
information, though, is that PWC's (people with CF(ID)S) tend to put
on weight easily and get quite heavy, more so than one would expect
just from inactivity.  This makes sense if our mitochrondria are
saying "feed me fat!" but are unable to get any inside where the
active sites are.  PWC's store a far higher proportion of their fat
intake than normies do.  This is in marked contrast with celiacs,
most of whom (it seems to me) have a hard time keeping their weight
UP to normal.

Ah, well.  We all have different, uh, interesting "challenges" to
deal with!

But thanks for the reminder.  I may go completely GF again for a while
to see if that improves - it's been a few years since the last
experiment.


Andrea Frankel - [log in to unmask] - (916) 274-1921
** Right now I'm having amnesia and deja-vu at the same time.
** I think I've forgotten this before.