Awareness

[Jnkmnky]

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

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.

[jenvan]

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.

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

[tarnalberry]

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. :-)

[jenvan]

Tiffany-

Word of mouth is definitely one of the best ways ! I think I've told just about everyone I know

[tarnalberry]

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.

[KaitiUSA]

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

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.

[Jnkmnky]

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.

[celiac3270]

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

[KaitiUSA]

I'm a pretty shy person

I would never have guessed but that's fine..you help out quite a bit

[celiac3270]

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

[Jnkmnky]

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?!! 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.

[Guest nini]

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.

[tarnalberry]

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

And you're darn good at it. We all need a niche, right? Once we identify them, someone's gotta teach 'em. ;-)

[celiac3270]

Thank you everyone! (particularly Tiffany and "JunkMonkey")

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.

[ianm]

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!

[stef-the-kicking-cuty]

I thought about writing my former doctors, too. A lot of them didn't have a clue and one even blamed me and said, it's all in my head. I really would like to educate them on celiac disease . I probably never know what they think about this, cause I doubt, they give me a phone call over the atlantic .

[frenchiemama]

On another chat board that I belong to I have my celiac story and a bunch of information and links about celiac in my community bio. I have had a couple people seek me out to ask questions about it and I have referred them here. I also talk to everyone who will listen about it, so now every one I work with (including a bunch of the truck drivers) are very celiac savvy.

[celiachap]

I also talk it up, to anybody and everybopdy that is interested and will listen!

[egardner]

Oh, me too, for sure. In fact, I feel like as carriers of the disease it is our JOB to inform the uninformed. Most people will be surprised that they have never even heard of it, seeing as how it is NOT rare. (I don't consider 1 in every 130 people rare...) I like to let people know about it because beating ignorance is half the battle, if you educate you are that much closer to the finish line....

[Guest nini]

The health food co-op that I get most of our gluten-free foods at didn't start carrying a lot of gluten free foods until I started writing the articles for them. Also if I have found products on the internet, and liked them, they will try to get them in for me and carry them for all of their gluten-free customers. Today they were having there summer festival and they were giving out samples of some gluten-free foods and the grocery manager was giving out Food's By George gluten-free Brownies... since the reason she got those in was because of my daughter, she cut her an extra large brownie for her to eat on the way home! I get so tickled every time I am in there and I run into more and more people on the gluten free foods aisle and I know that I had a lot to do with that section being created!

[julie5914]

I am a member of our local Toastmasters and gave a speech on it Tuesday. So there's about 20 more people who are educated on it! I got Best Speaker too!

[Guest Viola]

Way to go Julie5914! Good Job

[Jnkmnky]

I had to educate the nurse at my drs today. She was taking blood from me and two of my kids for the Prometheus Labs celiac disease kit. It's so disheartening to be in a medical environment and have the professionals not know what you're telling them.

[jenvan]

Update on me--getting ready to send out the dr letters/fact sheets and my letter to Marsh--Indianapolis based, strong midwest grocery store. I hope to meet with the head of their purchasing soon. I also met with a woman from our public tv/radio station. I am contacting one of the shows that highlights medical issues to see if they will do a story. I'll let you know!

[mytummyhurts]

Wow, Jen. You are really on top of things. Good Job!