Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748

    Silk tha Shocker
    Newest Member
    Silk tha Shocker
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.