Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Oprah - Let's Get Cd On Her Show


floridanative

Recommended Posts

floridanative Community Regular

I thought about how to best get the word out about celiac disease and the obvious answer was to get Oprah to do a show about it. I started with 'I'm thinking you probably already did a show about this horrible condition that is so underdiagnosed in the US and I'd like to purchase a copy of the show so please tell me how to do so. Then I went on to explain what celiac disease was just in case she hadn't heard of it. The producers didn't get back to me but I told them that I wouldn't be on the show since I don't have horror stories like so many others. I mentioned that some people take 10 years and other 20+ for correct diagnosis. Anyway, I told her she could find many people out here who would be willing to go on the show. So I think we need to be sending her show ideas as they call them on her site every week. We all need to be doing it - not me doing it over and over. If anyone is willing to do this let me know. Maybe we can come up with a system where we do a reminder thread that if your name begins with A-C it's your week to e-mail Oprah. Any other ideas would be appreciated.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 102
  • Created
  • Last Reply
Nantzie Collaborator

Oh my gosh! That's a GREAT idea. I like your tactical plan too.

B)

Nancy

floridanative Community Regular

Okay - then this is what I'm going to do. Starting Monday (and each Monday after), I'm going to post on this thread to remind everyone that is it their week to e-mail Oprah. They just need to e-mail her that week, not a specific day - that's easy enough. I'm going to ask all those with last name begins with A, then next week B and so forth. I will post also Oprah's website and what link on the site to look for so they don't have to figure it out themselves. It's easy but it has to be super easy so more people will take five minutes and do it. Eventually someone's story will be dramatic that the producers will have to call and then we're good to go.

We can do this people! Even if only a few people a week do this, it will be irritating enough for them to call someone - even to say they're not interested in the story. But I think they will be interested if some of you with compelling stories - sick for years - get involved. We have nothing to lose by trying and everything to gain. After all, when Oprah speaks people listen. Come on you Celiacs - it's time for you to get your fifteen minutes of fame!

Judyin Philly Enthusiast

Okay - then this is what I'm going to do. Starting Monday (and each Monday after), I'm going to post on this thread to remind everyone that is it their week to e-mail Oprah. They just need to e-mail her that week, not a specific day - that's easy enough. I'm going to ask all those with last name begins with A, then next week B and so forth. I will post also Oprah's website and what link on the site to look for so they don't have to figure it out themselves. It's easy but it has to be super easy so more people will take five minutes and do it. Eventually someone's story will be dramatic that the producers will have to call and then we're good to go.

We can do this people! Even if only a few people a week do this, it will be irritating enough for them to call someone - even to say they're not interested in the story. But I think they will be interested if some of you with compelling stories - sick for years - get involved. We have nothing to lose by trying and everything to gain. After all, when Oprah speaks people listen. Come on you Celiacs - it's time for you to get your fifteen minutes of fame!

<{POST_SNAPBACK}>

Judyin Philly Enthusiast

Okay - then this is what I'm going to do. Starting Monday (and each Monday after), I'm going to post on this thread to remind everyone that is it their week to e-mail Oprah. They just need to e-mail her that week, not a specific day - that's easy enough. I'm going to ask all those with last name begins with A, then next week B and so forth. I will post also Oprah's website and what link on the site to look for so they don't have to figure it out themselves. It's easy but it has to be super easy so more people will take five minutes and do it. Eventually someone's story will be dramatic that the producers will have to call and then we're good to go.

We can do this people! Even if only a few people a week do this, it will be irritating enough for them to call someone - even to say they're not interested in the story. But I think they will be interested if some of you with compelling stories - sick for years - get involved. We have nothing to lose by trying and everything to gain. After all, when Oprah speaks people listen. Come on you Celiacs - it's time for you to get your fifteen minutes of fame!

<{POST_SNAPBACK}>

<{POST_SNAPBACK}>

Lisa Mentor

Okay - then this is what I'm going to do. Starting Monday (and each Monday after), I'm going to post on this thread to remind everyone that is it their week to e-mail Oprah. They just need to e-mail her that week, not a specific day - that's easy enough. I'm going to ask all those with last name begins with A, then next week B and so forth. I will post also Oprah's website and what link on the site to look for so they don't have to figure it out themselves. It's easy but it has to be super easy so more people will take five minutes and do it. Eventually someone's story will be dramatic that the producers will have to call and then we're good to go.

We can do this people! Even if only a few people a week do this, it will be irritating enough for them to call someone - even to say they're not interested in the story. But I think they will be interested if some of you with compelling stories - sick for years - get involved. We have nothing to lose by trying and everything to gain. After all, when Oprah speaks people listen. Come on you Celiacs - it's time for you to get your fifteen minutes of fame!

<{POST_SNAPBACK}>

I'm In, tell me when and how.

Judyin Philly Enthusiast

what a fantastic idea!

Saw where Donna Korn does alot of speaking and she would hit the kids too.

She might be willing to get on the band wagon.

I like the 'emailing' to Oprah down the alphabet...

Count me in.

Judy


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



floridanative Community Regular

Just check this topic on Mondays or count out your week - by starting this coming Monday for A - If you last name is Adams it will be your week. Then next week the B's and so forth. But I'm going to put in the reminder every week and list the proper letter. If I go out of town I'll ask for a helper but that's only a few weeks of the year. So it will take six months to get throught the whole alphabet but hopefully before then we'll drive Oprah's e-staff crazy and they'll contact someone whose story is so compelling they can't ignore it. This is good people - really good.

Jnkmnky Collaborator

Oprah's addressed Celiac to some degree already. A few years back, a group of women called The Satelite Sisters had an ongoing article in her Oprah Magazine. The sisters made a disparaging comment about annoying parents with children with Celiac Disease. Well, as you can imagine, all hell broke loose. Letters appeared in Oprah's following magazine telling the sisters off and scolding Oprah for allowing the comments. Ok. Then, the satelite sisters did an entire show on their radio broadcast educating themselves and their listeners about the seriousness of Celiac. :D I'm sure Oprah knows about Celiac Disease.

floridanative Community Regular
jerseyangel Proficient

I've thought all along that Oprah would be the perfect forum to educate the general public about celiac disease. You can count me in!

bluelotus Contributor

We should mention celiac disease and general gluten sensitivity. Gluten sensitivity gets little coverage and is important, if you have only had the blood tests and didn't wait for the biopsy, or if the biopsy came back negative (which can easily happen, even if you have celiac disease). Tiffany (tanelberry sp?) recently pointed out the new NIH stand on celiac disease and gluten sensitivity, so we should include a link to that site in our email. No offense to people with celiac disease, but general gluten sensitivity is a huge problem too (with or without genetic predisposition to celiac disease). I wish they would do a show on gluten grains in general and mention all the negative health consequences - behavioral, pyschological, intestinal........now that would be a great show.

Jnkmnky Collaborator

jerseyangel Proficient

That would be a good show and a dream come true for all of us but remember what happened with the Beef Industry when she did a show about their practices? I wonder if she would be willing to rile up the wheat industry? I'm still very much in favor of the E-mailing campaign, don't get me wrong, but I was just thinking...

zippy Newbie

I know of a group of women with melasma, a very disturbing to the self esteem, and basically nothing that can get rid of it. (Triluma, hydroquinone products really don't work), Anyway they bombarded Oprah with it do bring it to people's attention. It went ignored. Maybe this will be more successful.

FaithInScienceToo Contributor

Hi. I just posted this link on the other thread about this:

Open Original Shared Link

It's the page on Oprah's site for e-mailing the producers.

Gina

floridanative Community Regular

Open Original Shared Link

Above is Oprah's weblink (thanks to Gina for posting).

This is our first official week to e-mail Oprah about celiac disease. If your last name begins with an 'A', then it's your turn to e-mail you story to Oprah's producers. Many of you were excited about this idea and didn't want to wait for your week and I applaud your enthusiasm. However I would ask that you send another note when it is your week. If we all bombard the producers at once, they'll be annoyed and then be glad it's over. We need to be consistent - keeping our issue on their mind, week after week. And the reason I'm not asking everyone to e-mail only on Monday is that I want someone sending a note every single day.

Obvioulsy what you say in your 'show idea' is your business but bluelotus made a very important point. Oprah had a huge legal problem when she said she wouldn't eat beef. She is NOT going to do a show about celiac disease and say that all grains are bad for everyone so if that is your viewpoint I wouldn't necessarily share that or you may be thwarting our efforts.

Good luck and have a great week!

Judyin Philly Enthusiast

Excelent post and good points and thanks to Gina for posting her easily accessable web-site.

Judy

FaithInScienceToo Contributor
Oprah had a huge legal problem when she said she wouldn't eat beef. She is NOT going to do a show about celiac disease and say that all grains are bad for everyone so if that is your viewpoint I wouldn't necessarily share that or you may be thwarting our efforts.

<{POST_SNAPBACK}>

Just wanted to address a few points you made here:

I don't think you have to worry about Oprah saying she won't eat wheat, unless she tests positive for gluten problems, in which case she can say that without worrying about the wheat producers sueing her :-)

Anyway...I also don't think anyone replied saying that we should say that 'all grains are bad'...unless I missed a post...did I?

BUT, trying to influence the show's producers to do a show about 'common foods' that can cause health problems and how to find out if 'your' health problems are being caused by them, is not a bad idea, in my opinion, and would not thwart our efforts...Celiac disease would, of course, be addressed in such a show, so it increases our chances of 'getting celiac disease on Oprah.'

Also, the producers will decide if celiac disease alone warrants an entire show...no matter how many e-mails they get from us...

Personally, even though I have celiac disease, I don't think that celiac disease will get an entire show at this point in time, because I watch Oprah nearly every day, and I know the kind of shows she does -

I believe she would prefer a show that talks to the largest number of people...that is why I think it is better to suggest to the producers, as I did in my e-mail, that they do a show about 'common foods that can be harming you'...such as gluten and dairy proteins...They can also address how to find out if your health issues my be caused by them...I suggested that they have Celiacs on in one segment - especially those who have suffered for decades (like some of us have) prior to diagnosis.

Respectfully submitted.

Gina

floridanative Community Regular

I agree with Gina's points. I think gluten sensitivity and celiac disease could make an entire show, but then again I'm not a tv producer.

And Gina - yes I've seen many posts from people (on other threads) that think every human should stay away from wheat. Surely you've seen them too. I whole heartily believe that if any producer thinks there's even hint of a lawsuit potential type topic brought up, they'd never even bring it up to Oprah.

luvs2eat Collaborator

I think this is a fabulous idea. Even if Oprah has talked about it before... just mention in your email how MANY new members we get every day on this site and how many MORE are diagnosed every day.

She might even take the opportunity to plug some of the yummy foods available to us.

Count me in on the "F" week!!

hthorvald Rookie

There's a doctor that she frequently has on the show. He's always educating her audience about the human body. Perhaps, when it's my turn to ping Oprah, I could use that tact -- ask her to invite the doctor to address celiac disease and offer experts such as Danna Korn and Shelly Case. We could also suggest that she have a cooking segment with Carol Fenster or Bette Hagman. Maybe Art Smith could join in and adopt some of his recipes for Celiacs. How's that for a show!

Helen.

FaithInScienceToo Contributor
And Gina - yes I've seen many posts from people (on other threads) that think every human should stay away from wheat. Surely you've seen them too. I whole heartily believe that if any producer thinks there's even hint of a lawsuit potential type topic brought up, they'd never even bring it up to Oprah.

<{POST_SNAPBACK}>

Right... we should not, of course, suggest that 'all' grains are bad' or even that all people need to stay away from wheat...and, trying to suggest anything along those lines would not be productive...point taken.

Gina

FaithInScienceToo Contributor
She might even take the opportunity to plug some of the yummy foods available to us.

<{POST_SNAPBACK}>

Perhaps the show could even do a blind taste test for non-diagnosed audience members...comparing gluten-free foods to 'the real thing'....

:-)

Gina

kelliac Rookie

While we're at it, what about People Magazine, 20/20 with perhaps John Stossel exposing the hidden sources of wheat and difficulties of gluten sensitive individuals, Ladies Home Journal, Prevention, the Today Show, and so on. If enough things get thrown out there, some are bound to stick.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,138
    • Most Online (within 30 mins)
      7,748

    kfkynett
    Newest Member
    kfkynett
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Yaya
      I take all vitamins and supplements.  My cardiologist has me taking B12 5,000 once per weeks.  He gives me complete blood work every 6 months.  He's still building my D levels which is now in 60s.  He wants them in low 80s.  I take 5,000 IU's daily.  With this dosage I've gone from 42 to 65 over a period of about 5 years.  It builds very slowly.   As far as iron, I take a double dose of gentle iron with C on an empty stomach on alternate nights.  Yes, iron is a component for many of us with RLS, but mostly "brain iron" that in some people may require iron transfusions.   
    • trents
      The positive DGP-IGA indicates the possibility of celiac disease. It is typical for someone who does have celiac disease to have some antibody tests be negative and others positive. This is not unique to celiac disease diagnosis. It is why doctors typically run many tests when seeking diagnosis of a suspected disease.  The DGP-IgA test is considered to have high sensitivity and specificity. In general, the DGP-IgA test has been reported to have a sensitivity ranging from 75% to 95% and a specificity ranging from 90% to 100%. Overall, the DGP tests, including DGP-IgA and DGP-IgG, exhibit a sensitivity of approximately 85-95% and a specificity of about 95-98%. The above paragraph is taken from this article which gives an overview of the various tests that can be run for celiac disease and their reliability: What symptoms are you experiencing?
    • trents
      Check Costco's store brand.
    • trents
      Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.
    • trents
      Biopsy results can be negative despite positive serum antibody results for these reasons: 1. Early onset of celiac disease. Inflammation has been happening for long enough to cause damage to the small bowel lining that is observable in the biopsy sample. 2. The damage is in the part of the small bowel lining below the duodenum. The duodenum is the part of the small bowel immediately below the outlet of the stomach. 3. The damage is patchy and was missed by the one doing the biopsy. A thorough biopsy would include several samples taken from different areas of the duodenum. Not all scoping is done this thoroughly, unfortunately. 4. The positive serum antibody results are caused by some other medical problem, food or medication that mimics the inflammatory reaction typical of celiac disease.
×
×
  • Create New...