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Awareness


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58 replies to this topic

#1 Jnkmnky

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Posted 23 June 2005 - 07:35 AM

Well, I guess the title sums up my question! I've been emailing all of the network Dr's on call asking them to do a segment about Celiac Disease and was wondering why no one's interested. Sometimes I feel that posting with others affected by Celiac gives me a myopic view of the significance of this health issue. When I turn off the computer and look around at the rest of the world, no one's interested because no one's even HEARD of the disease....unlike AUTISM, MS, AIDS, DIABETES, etc... But I haven't been completely useless. Our family has done the Celiac walk the past 4 years, we even had a fund raising kool aid stand and handed out literature detailing Celiac and donated the proceeds to the last walk we did. That was fun. That made the paper twice. We gave out 200 flyers on Celiac that day. Maybe three people who stopped by our stand KNEW what Celiac was! We handed out all 200 of our flyers :o

So, if Celiac Disease REALLY affects 1-133 people, why isn't it better known? Are we doing everything we should be doing to let others know? Or is there a conspiracy...(that's a ridiculous word, I know) but seriously, do you think the drug companies that make millions off of meds for the symptoms of celiac disease, keep the cause of the symptoms quiet because THEY won't make millions off of a gluten free diet?

Ok. I'm off track here. What have you done to promote awareness? That's the simple question. Now I'm getting off the computer, dressing my son in his Celiac shirt and parading him around town. Just kidding. We're going food shopping.
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#2 jenvan

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Posted 23 June 2005 - 07:56 AM

Good thoughts and good question. As for myself--I actually have created a 4-fold plan to raise awareness locally where I live. (yes--I really am a dork!) I recently sent out letters to restaurants, and plan to send out more as well.

The next phase I'm entering (I totally sound like a dork!), is writing letters to previous doctors (I've had many of them!), and sending along celiac disease facts sheets as well, in the hopes that they will make Celiac info available out in the lobby/waiting rooms with other health brochures and info. Doctors are a hard group, harder than restaurants in some ways, because many of them have a great deal of pride in their knowledge base, and using consumer power doesn't work so well with them. The letter I've written to my doctors tries to use that pride our our advantage--humbly asking them to rethink their paradigm of celiac, and acknowledging that they have great power to influence the community and individuals--and that we need their help. I kept all my "annoyedness" at doctors to myself (like--years of being misdiagnosed!)

My third goal is to contact local grocery stores, praising for the few gluten-free products they have, discussing strong celiac community locally, asking for more products, and lastly, to try and work with local tv and newpapers to get the word out. Next week I am meeting with a woman (b/c of work) from WFYI, our public tv station. I plan on trying her for ideas too.

So far I've had some luck. One of the restaurants took my thoughts to heart and made several changes to the location I wrote about.

If these ideas don't produce great results, I plan on bungee jumping from Indy's tallest skyscraper during rush hour for attention, and then throwing stale wonder bread down on people's head. :P

Hmmm.... I still want to make myself some kind of fab celiac t-shirt too. Still working on that one... :)
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#3 tarnalberry

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Posted 23 June 2005 - 08:45 AM

When I share my recipes, I note that they're gluten free.
I talk freely with coworkers, friends, random strangers (in real life) about what it is and what the ramifications are.

That's about it - I'm a word of mouth machine. :-)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 jenvan

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Posted 23 June 2005 - 09:18 AM

Tiffany-
Word of mouth is definitely one of the best ways ! I think I've told just about everyone I know :lol:
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Indianapolis, IN

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#5 tarnalberry

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Posted 23 June 2005 - 09:50 AM

Go Jen! ;-) Telling them all will just spread the word faster! :-)

I've thought about doing more, but there are other things that I've been more interested in increasing awareness in (like vulvodynia) and so forth. I've heard odd things on a few boards about politics in some of the groups, so I shied away from that avenue. (There's more than enough politics at work... *shakes head*)

For those who have tried calling doctors, how does that go? Do you ever talk to the doctor? Do you only talk to a nurse or a PA? Is the person you talk to responsive or dismissive? Does it generally take a long time with each person or a short time? I might be interested in doing that, but the logistics seem a bit overwhelming.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#6 KaitiUSA

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Posted 23 June 2005 - 10:03 AM

I also usually get the word out by mouth. I am very talkative about it and pretty much everyone I meet will know about celiac by the time I'm finished talking to them, whether they like it or not lol :lol:

I am in the midst of contacting previous doctors(I'm going to be sending info about celiac to them too)...I've had mixed attitudes about the info.
When we called my one doctor the nurse took a message and the doctor called us back. Not sure if all doctors will talk with you but it is definitely worth a shot.
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Kaiti
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#7 Jnkmnky

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Posted 23 June 2005 - 12:21 PM

Contacting ex drs is an experience. When I told my son's dr that we found out my son has celiac disease, he told me that children DON'T get celiac disease. He actually argued the point with me. He said it's an adult disorder. I was so stunned after a few minutes of our back and forth that I walked out of the room without a word. Never went back, either. This was a few years ago. My son's new dr is totally clueless as well, but she never disputes anything I tell her. She doesn't ADD any relevant info to the subject, but she doesn't care and she doesn't care to hide the fact that she doesn't care. I think she must think celiac disease is a non-issue or something. I don't ask.
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#8 celiac3270

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Posted 23 June 2005 - 12:52 PM

I feel bad, now. Not doing much for awareness. I don't send letters to people, cause most of the doctors I have gone to know about it and the ones I'm currently going to already know enough. And I'm a pretty shy person, so with the food being a social stigma, I feel most comfortable not going into the fullblown details.

You guys make them aware and I can help once they're diagnosed :D
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#9 KaitiUSA

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Posted 23 June 2005 - 12:59 PM

I'm a pretty shy person

:o I would never have guessed but that's fine..you help out quite a bit :D
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Kaiti
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Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#10 celiac3270

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Posted 23 June 2005 - 01:11 PM

Not shy on the computer, particularly on this board. But shy in real life.
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#11 Jnkmnky

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Posted 23 June 2005 - 01:37 PM

Shy is an expectations we live up, or should I say DOWN, to. You're wonderfully extroverted here. I didn't suspect you were a teenager when I began posting here. Please stop 'being' shy and depriving the real world around you of your endearing personality/humor/inteligence. I have an idea. You said you live in NY, right? Why don't you make a banner for Celiac awareness and stand outside the morning news shows?!! :lol: Let's see if you can get Al Roker to interview you. Tell him JunkMonkey sent you. Sorry, I'm not telling you what to do...I think it's funny, that's all.
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#12 Guest_nini_*

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Posted 23 June 2005 - 03:14 PM

I tell anyone who cares to listen, AND I write a regular column for my local co-op's bi-monthly newsletter about living the gluten free life... I haven't thought to contact former Dr.s but the current family practice that we all go to, I tell them ALL about Celiac, and they are so impressed with the turnaround in both my health and my daughter's health, that they can't argue with me. My Dr.s PA has actually started reading more articles about Celiac and educating herself about it. I was impressed at my daughters well check up that she (the PA) knew as much as she did about Celiac.
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#13 tarnalberry

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Posted 23 June 2005 - 03:17 PM

You guys make them aware and I can help once they're diagnosed :D

And you're darn good at it. We all need a niche, right? Once we identify them, someone's gotta teach 'em. ;-)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#14 celiac3270

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Posted 23 June 2005 - 03:31 PM

Thank you everyone! :D (particularly Tiffany and "JunkMonkey") :P

I have also decided to write to the first pediatrician I had. Most of my doctors have been pretty good, but he really messed up... dismissed all of my stomach aches, saying either that I wanted attention or that it was childhood allergies that weren't worth the expense of testing for and that I would outgrow them. For about ten years and with constant complaining of this he never thought to do anything or test for anything. I could have been living on intravenous nutrition for the rest of my life as a result of his lack of concern (malrotation) and he missed not one, but TWO problems: also celiac! I'm thinking of sending him a letter--just to show him how much he missed and to, at the same time, educate him on celiac.
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#15 ianm

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Posted 23 June 2005 - 05:48 PM

I am very blunt and upfront about it and tell people what I can and cannot eat and I don't care if they want to hear it or not. I am not shy and everyone does have a right to my opinion! :)
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.


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