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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Oprah - Let's Get Cd On Her Show
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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.

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

B)

Nancy

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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!

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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}>

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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}>

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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.

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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

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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.

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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.

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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!

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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.

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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...

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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.

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http://www.oprah.com/email/tows/email_tows_main.jhtml

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!

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

Judy

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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

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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.

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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!!

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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.

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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

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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

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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.

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