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Hi All~~

When I posted my "vent," I noted that I didn't plan to issue a summary
because my vent was just my opinions on certain issues. However, one
person, specifically, wrote a response that seemed to encompass most of
what needed to be expressed. Holding to my rules about my summaries, names
are not included. Many people thanked me for the opportunity to share their
own stories, several offered their support at what I was trying to convey,
and some thought we were either better off eating a healthier diet and/or
felt the celiac organizations were doing a good job of educating and
disseminating information. Two people thought where one lives has an impact
on restaurants willing or able to offer GF dining. I appreciated each and
every response. And to the two people who have ties to Kansas and wanted to
know where I live, I'm currently in Topeka, so shoot me a note if you're
close and we'll meet somewhere for tea or coffee or just a hug.

This was the essence of my vent:

"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."
_____

And this was the one reply that touched so many facets of what celiacs have
to deal with daily:

"I am not the one with Celiac in my family but it breaks my heart to see my
14 year old daughter feel so left out of social events with her friends.
 We are lucky because in the DC area there are several restaurants that she
can often steer her friends to, but most of the time she awkwardly brings
her own food or just doesn't participate.

My husband and I decline most social invitations because he has Celiac and
like you, just really doesn't want to bring another cooler.  We don't
travel because all the research goes into where we can eat rather than what
we can see, and we have to plan our day around a 5:00pm dinner time to
avoid the rush.  And of course, one tiny mistake can ruin an entire week.
 Vacations are too stressful to consider.  Kinda defeats the purpose! We
are grateful for the advances in the last ten years but we too are SO
frustrated with what seems to be a stalled effort."
_____
What I was trying to get across to everyone was my frustration that the
truth about our social isolation, generally, isn't being addressed, perhaps
because no one knows exactly what to do. Maybe you, individually, don't
feel it, but it's happening. The education and dissemination of information
the celiac organizations take on for us is vital, but so is our ability to
socialize/gather around and share a meal with our family and friends. The
"stalled effort" our list member mentions is the core of my vent. We now
need another level of assistance-service. Forget the research, the patient
education, the testing and the conferences; gratefully, we have those
things. The more difficult issue now is providing those things that make
humans happy and content. The least we should expect is a dialog on how to
move forward to encompass a rich social life no matter where we live or
what restaurants we want to frequent. How do the Irish do it? Or most of
the European countries that seem to manage feeding their celiacs
effortlessly? Now, I've put forth another vent, which wasn't intended. I
just think we need to do more.

Cheers~~
Ayn in Kansas






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

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