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 Celiac.com!
    eNewsletter
    Donate

Oprah - Let's Get Cd On Her Show


floridanative

Recommended Posts

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!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 102
  • Created
  • Last Reply
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…

Link to comment
Share on other sites
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 <_<

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,068
    • Most Online (within 30 mins)
      7,748

    DaciaDH
    Newest Member
    DaciaDH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...