• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Oprah - Let's Get Cd On Her Show
0

Rate this topic

103 posts in this topic

Recommended Posts

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

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

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!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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…

Share this post


Link to post
Share on other sites

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 <_<

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,146
    • Total Posts
      939,919
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes I eliminated high glycemic foods. Eating only small amounts of carbs. No fruits, added sugars, starchy grains. Eating lots of fibrous veggies. Eating olive oil, as I don’t seem to tolerate the saturated fats or MCT oil. Allergic to nuts and seeds unfortunately.
    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
  • Upcoming Events