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Hi All~~

I had an appt w/ my GI doc yesterday - nothing big, no real issues. By the
time I left, I had worked myself into this state of needing to vent. I
don't plan to put out a summary, but if enough people have similar or
noteworthy comments, I'll do so.

The issue that seems most bothersome to me is that I feel, as a
celiac/gluten intolerant patient on a strict GF diet, I'm being ignored.
Granted, researchers are researching, manufacturers are manufacturing - at
ever growing expense - but my quality of life has not improved. The part of
this diet that has impacted me most is the social isolation. New
restaurants are opening, but few to none are offering GF fare (city pop.
approx. 128,000). After 12 years of eating GF, I have the diet down, but I
don't want to cook so much any longer. I'm 62 and want to feel I can go out
without taking a cooler with me. I don't want to cook alone, eat alone,
clean the kitchen alone, then start all over again for the next meal.

My GI doc feels no one is truly paying attention to our lifestyle and what
would increase our sense of "health and well being." Just because more GF
food is being manufactured and sold to us in grocery stores, no one is
considering what other things we need as social beings. At one point, my GI
doc pointed out that his impression of the people who could do something to
improve our situation have not made it clear to the public that celiac is a
DISEASE! That was a bit of a shock for me to hear him raise his voice as
this guy is one of the most laid back, quiet people I know. Apparently,
he's gotten disgusted in the past 12 years, also. I'm still reading
articles that claim celiac is an allergy.

So, this is my vent. Why are we still waiting for someone to step up on our
behalf in a meaningful manner? And I'm pretty sure we all have different
definitions of what we think is a meaningful manner. We advocate for
ourselves, but there are five national organizations that claim they're
here to support us. Has anyone on this list gotten a survey or
questionnaire from any of the organizations wanting to know what we would
like for them to do for us? If we pay them membership dues, do we have a
say in what they do with our money? I know that everyone is in a different
situation; many or most celiacs/gluten intolerant people are working and
thereby get some social interaction. I don't work due to another
disability, so I don't have as much interaction with others. Some people
care for their children at home or have lost their jobs and spend 12 hours
a day without feeding their personal needs (no pun intended). Food is a
huge part of our culture that can make us feel included or excluded, part
of a group or alone. So before I get singed with emails from people who say
they're healthy and never been happier, please think about how many
different situations we are all experiencing.

A friend told me last week that they'd just learned that more restaurants
are prepackaging food and sending it to their various locations to heat and
serve. That's scary.

Just saying...

Ayn
(Kansas)

-- 
*
We never touch people so lightly that we do not leave a trace...* Millen

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