Help Us Oprah!

[samking72]

I sent an e-mail to the producers of the Oprah Winfrey show saying that they should do an episode on Celiac. I explained what Celiac is, what gluten is, why we can't eat it and how many people have that don't know it. I also mentioned how "un-informed" the medical field is about it too. Well, let's hope they care enough to follow up on it. (( ))

[jennyj]

Hope so too. Thanks for doing it for us.

[swittenauer]

Maybe we should all do the same.

[samking72]

Yes! Everyone write to them. Maybe they'll get the idea if they get enough e-mails. Then again, it's showbiz. They more concered about what Mel Gibson has to say when he's drunk than people's health.

[morganb]

It would be great though if they would pay more attention to the health of the world than the incident of a celebrity.

Great idea!!!

[luvs2eat]

Can't stand Oprah and don't care one fig what she says about anyone or anything...

[samking72]

Sorry you don't like her, but she has the most watched talk show in America. It's not like Leno would do a show on Celiac.

[jerseyangel]

Actually, a while back we had a more or less organized email campaign. We had hoped to bring this disease to her attention, and hopefully have a show on the subject. A lot of us emailed the show.

To my knowledge, no one ever heard back from anyone connected with the show.

I've contacted Montel Williams (has an autoimmune disease himself), Elizabeth Hasselbeck (has at least gluten intolerance), CNN, GMA, Martha Stewart--heard back from no one.

I'm not trying to discourage you--far from it--but I just wanted you to know

Who knows--maybe your email will be the one that finally makes them sit up and take notice

[Kaycee]

Personally I think Oprah should do a show on coeliac, not just for us, but to inform the general public of how dangerous this disease is if left undiagnosed, and untreated. She herself is a bit of a foody, and is right into health. So why won't she do it?

Cathy

[beaglemania]

right on!! I'm sooo sick of watching her do so many shows on anorexia and bulimina. Those diseases make no sense to me. Celiac Disease is a medical condition worth noticing and if we could get the word out lots more people would come to realize they have it!!

[samking72]

Yea, I mentioned in the e-mail how serious it is,how undiagnosed it is and that many people are misdiagnosed. I emphasized on how doctors don't even know what it is and that it is more common than people think. Hopefully, they get the point. I listed some symptoms ( the major ones ) and what it does to our bodies. I wrote about what we have to stay away from and how it is a life-long commitment to a strict diet. I mentioned how it has affected my social life and relationship ( not in a good way ). They like a that sappy stuff. I guess we'll just wait and see what happens. I'm not giving up hope. Yet.

[Lymetoo]

Maybe there are too many "diseases" out there for her to cover. We have people dying from Lyme disease and it's WAY underdiagnosed, but she won't do a show on that either.

But that said, DON'T GIVE UP TRYING!

[lovegrov]

I'm not telling folks to give up trying, but various groups have been trying to get Oprah to do a celiac episode for more than four years now. I don't know of anybody who's ever even gotten a reply.

richard

[chrissy]

well....if she likes eating disorder shows----maybe i could write her about my daughter having anorexia AND celiac disease and how complicated celiac disease made her eating disorder, and how the hospital couldn't manage to keep her gluten free which probably explains her slow weight gain--------- and we could get it past her that way???

[Kaycee]

right on!! I'm sooo sick of watching her do so many shows on anorexia and bulimina. Those diseases make no sense to me. Celiac Disease is a medical condition worth noticing and if we could get the word out lots more people would come to realize they have it!!

Anorexia and bulimina up to a point are self inflicted, sorry if I offend any one, and this disease is just a freak of nature. Don't get me wrong, I do feel sorry for the anorexics and bulimina, and a lot of money probably goes into their diseases, as opposed to coeliac. Has this answer got anything to do with the fact that there is no medication needed for straight coeliac, and therefore no medical or phramaceutical money is thrown this way.

And I also know from reading here, that some people are accused of being anorexic because they are so thin, and not a lot of people can understand that it is coeliac that is doing it to them. I can sympathise for you guys.

I can remember an actress a few years back being told in magazines that she was anorexic, and she came back with the reply that it does not matter what she eats, she can not gain any weight, she just has an extra good metablism. Could be coeliac.

Cathy

Just a rant, little one.

[Lauren M]

Anorexia and bulimina up to a point are self inflicted, sorry if I offend any one, and this disease is just a freak of nature. Don't get me wrong, I do feel sorry for the anorexics and bulimina, and a lot of money probably goes into their diseases, as opposed to coeliac. Has this answer got anything to do with the fact that there is no medication needed for straight coeliac, and therefore no medical or phramaceutical money is thrown this way.

And I also know from reading here, that some people are accused of being anorexic because they are so thin, and not a lot of people can understand that it is coeliac that is doing it to them. I can sympathise for you guys.

I can remember an actress a few years back being told in magazines that she was anorexic, and she came back with the reply that it does not matter what she eats, she can not gain any weight, she just has an extra good metablism. Could be coeliac.

Cathy

Just a rant, little one.

Whoa, sorry, but I have to say something.

First - eating disorders ARE diseases. Just because some people don't understand them does not make them any less real. Also, I don't think that calling the disease a freak of nature is really appropriate. I don't know the exact statistics, but eating disorders/disordered eating are much more common than most people realize (even if most people who suffer from them - and I did say SUFFER - don't actually seek treatment).

And Second - I think what is being suggested is that because eating disorders are such a hot topic at the moment, we could use that angle to get Celiac on her show. There is a STRONG connection between Celiac and eating disorders. For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

Apologies if I came off witchy in this reply, but I could not read this and not reply. Back to the topic of Oprah...

- Lauren

[jerseyangel]

For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

Me too--thank you, Lauren!

[Lauren M]

Ooops, I meant to quote beaglemania's post in mine as well.

And thank YOU Patti

- Lauren

[Kaycee]

Whoa, sorry, but I have to say something.

First - eating disorders ARE diseases. Just because some people don't understand them does not make them any less real. Also, I don't think that calling the disease a freak of nature is really appropriate. I don't know the exact statistics, but eating disorders/disordered eating are much more common than most people realize (even if most people who suffer from them - and I did say SUFFER - don't actually seek treatment).

And Second - I think what is being suggested is that because eating disorders are such a hot topic at the moment, we could use that angle to get Celiac on her show. There is a STRONG connection between Celiac and eating disorders. For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

Apologies if I came off witchy in this reply, but I could not read this and not reply. Back to the topic of Oprah...

- Lauren

Lauren

Thanks for that. I do agree with you eating disorders are diseases, but sometimes I do not use the right words, or put things as succintly as I should when I am a bit het up. I can sympathise with them, as I said. Being a freak of nature is probably the wrong words to describe us, so I will slap my wrist for that. But any disease is in a way a freak of nature, probably the wrong way to say it, again, but how do you describe it when nature has given you a raw deal in health matters? Bad luck?

Maybe how we talk, our slang and how we explain things in NZ is a bit different to the USA, and the last thing I want to do is offend anybody

Like you I do feel I have an eating disorder. But if I tell people that, they look at me and say really, as I am a little overweight. But food does scare me.

Never mind the witchyness, I deserved it. But this is one topic that seems to get me a bit hot.

[chrissy]

my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

[samking72]

www.oprah.com

[evie]

my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

Chrissy; If you have the gift of gab to set that to words I am all for you sendig that connection to Oprah, I am not good at that. But getting both problems more publicity (open to the people) needs to happen. also I do not know how to send it but am sure someone will know how to do it, we have some VERY computer literate people here!! Go for it.. you may even get info out to more of the doctors who know little about celiac or eating disorders. Hope your daughter is doing much better now. evie

[jerseyangel]

my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

Chrissy--If you're up for it, I'd say yes, definately! It's worth a try--nothing else has gotten their attention that I know of.

[elye]

I was part of that Oprah email campaign that we instigated last year. It was very well organized, and went on the premise that we, as a huge group, INUNDATE her corporate office with letter upon letter. In fact, there were shifts put in place...everyone with a last name A-H wrote at the beginning of the week, then I-P a few days later, and so on, and then we would repeat it the next week. I did my part for three weeks, and then like so many things, it wasn't mentioned again and I stopped (life gets in the way, ya know?) However, I think that attacking the Oprah machine en masse, in numbers that she cannot ignore, and in writing, is maybe the only way those big guys will tap Oprah on the shoulder about this.

[angel-jd1]

my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

I think it would be a good idea. It would spotlight 2 important diseases/disorders.

-Jessica