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Oprah - Let's Get Cd On Her Show


floridanative

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teankerbell Apprentice
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

Gina,

Your picture is HYSTERICAL!!! LOL

Hi All,

I am in. I will email the Oprah Show. So many people love and watch her and trust her. I live in a Suburb south of the studio in Chicago and I work about 15 minutes away from the studio.

My issues are not as extreme but the whole audience should be celiac disease/GS people!


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ms-sillyak-screwed Enthusiast

Okay here goes -– I was on the way to take a dip in the pool last night and had the radio on. I listen to a FM talk radio station in south Florida. If any of you would like me to post their phone # so you can call in just ask. I found them when in the middle of hurricane Wilma. Callers can talk about all sorts of topics they do have a topic but they welcome you to call in and vent or simply chat about anything.

Last night they were talking about GREEN BEER. I thought what better way to bring up celiac disease but through beer on St Patty’s Day. The radio guy said “Caller what would you like to talk about?” I said, “Green Beer and something called CELIAC SPRUE!” They said what is it? So I said, “It is spelled C-E-L-I-A-C second word S-P-R-U-E it is a life threatening illness for some that has to do with gluten in food and drinks. And for all those listeners tonight out there drinking green beer, or scotch, whiskey and wake-up tomorrow and are sick not from a hangover they might just have a gluten problem too.” He asked “…what type of symptoms?” I said it (oh my God I have to reveal to the world I have steatorrhea diarrhea) for me it is diarrhea and I have seizures too. There are 3 million reported cases and many more millions are un-DX’s in the USA. For some people celiac disease can cause AUTISM, EPILEPSY, DIABETES, ANEMIA, DIARRHEA and it masks itself in many others.”

They asked what is GLUTEN. (One guy knew a good deal about it) I told them bread, pasta, wheat, rye, barley, oats and is in just about everything people eat and drink. We talked about all the alcohols that contain it, I mentioned Vodka is made from rice or potatoes, and wine is okay from grapes.

The radio commentator is smart as all get-out, he knows so much about so many topics or he typed in his news wire and it came up. He said – “Oh, I recall the family in Jupiter, Florida sueing a fast food chain.” He asked me if I eat in fast food resturants. I said “…we’ll yes, only one and I get the grilled chicken fillet

but no bread.” I spoke about cross contamination. How I learned that if the French Fries are fried in the same vat of oil that the chicken tenders or fish sandwish is in it will pose a problem.” Then he said, “Well I think that family sueing won’t have a leg to stand on.” My heart dropped. He went on, and he added “...that the company first said there was no gluten and now they are admitting there is. And the food companies will have to be more truthful now.”

He asked about what people can do about gluten. I told them there is no magic pill. He said, “Not [YET] but there will be. And it must be hard -- doctors they don’t believe patients. But the pharmaceutical companies are who will help in time when they realized the money they will make.” I agreed. We talked about food allergies and one of the otherguys mentioned the peanut kiss and I said yes it was deadly. He said that they found out it wasn’t from the peanuts, I said I did NOT hear that to be true.

I added “I believe grains are bad for us and are killing us as a nation.” He said, “I don’t agree with you. We are an obese nation from eating bad junk food all around.” I told him that he was entitled to his opinion, but if you look at the USA as in a broader picture, that the #1 thing we spend the most money in health care is not, cancer, heart, or other illnesses, it is digestive disorders it tells us we are eating the wrong foods and gains have something to do with it.”

He asked how it interferes with my life. I talked about my seizure and (Oh God here I had to reveal more) loosing control of my bowels. And I said I know your listeners don’t want to her me talk about my diarrhea problem. But that many people have this up to 12 years before they are DX’s with it. They thanked me for the education on the disease and welcomed me to call back and chat anytime.

While I was doing my lapps in the pool I thought of many more things I wished I thought to say. Today I sent daddyO to the library to order me the book about deadly grains. I’m going to read it and call back again armed with more statics

about it and SOY. I am also going to email them with more info about celiac disease this week.

If any of Celiac’s here in cyberspace would like to call in or email them just ask I will post the web site where you can listen to them online they also have a 1-800 # that is good around the country if you would also like address your plight with the disease or things I forgot you mighht know more about.

Well, Oprah is missing out. But little by little we will get the word out…

jerseyangel Proficient

Wow Ms. SS--That was great! Just think of all of the people you educated in that one call. There may have been someone out there who was looking for an answer, and you gave them food for thought. I know that here in NJ, there is a radio station that is all talk on weekdays--when I get up enough nerve, I want to call in and do the same. I hope I don't lose my nerve :ph34r:

And you're right about Oprah <_<

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      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
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      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
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      I understand why that feels concerning. Some Schär products use specially processed wheat starch that has had the gluten removed to meet strict gluten-free standards (under 20 ppm in the U.S. and EU), which is why they can legally and safely be labeled “gluten free” for people with celiac disease. However, wheat must still be listed in the ingredients and allergen statement because it is derived from wheat, even though the gluten protein has been removed. For individuals with a true wheat allergy, these products are not appropriate—but for those with celiac disease, properly tested gluten-free wheat starch is considered safe under current medical guidelines. That said, it’s completely reasonable to prefer products made without wheat starch if that gives you greater confidence, and clearer front-of-package communication could certainly help reduce confusion for shoppers.
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