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

Help Us Oprah!


samking72

Recommended Posts

samking72 Rookie

I sent an e-mail to the producers of the Oprah Winfrey show saying that they should do an episode on Celiac. I explained what Celiac is, what gluten is, why we can't eat it and how many people have that don't know it. I also mentioned how "un-informed" the medical field is about it too. Well, let's hope they care enough to follow up on it. (( :rolleyes: ))


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



Celiac.com Sponsor (A8-M):



jennyj Collaborator

Hope so too. Thanks for doing it for us. :)

swittenauer Enthusiast

Maybe we should all do the same.

samking72 Rookie

Yes! Everyone write to them. Maybe they'll get the idea if they get enough e-mails. Then again, it's showbiz. They more concered about what Mel Gibson has to say when he's drunk than people's health.

morganb Newbie

It would be great though if they would pay more attention to the health of the world than the incident of a celebrity.

Great idea!!! B)

luvs2eat Collaborator

Can't stand Oprah and don't care one fig what she says about anyone or anything...

samking72 Rookie

Sorry you don't like her, but she has the most watched talk show in America. It's not like Leno would do a show on Celiac.


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Actually, a while back we had a more or less organized email campaign. We had hoped to bring this disease to her attention, and hopefully have a show on the subject. A lot of us emailed the show.

To my knowledge, no one ever heard back from anyone connected with the show.

I've contacted Montel Williams (has an autoimmune disease himself), Elizabeth Hasselbeck (has at least gluten intolerance), CNN, GMA, Martha Stewart--heard back from no one.

I'm not trying to discourage you--far from it--but I just wanted you to know :)

Who knows--maybe your email will be the one that finally makes them sit up and take notice ;)

Kaycee Collaborator

Personally I think Oprah should do a show on coeliac, not just for us, but to inform the general public of how dangerous this disease is if left undiagnosed, and untreated. She herself is a bit of a foody, and is right into health. So why won't she do it?

Cathy

beaglemania Rookie

right on!! I'm sooo sick of watching her do so many shows on anorexia and bulimina. Those diseases make no sense to me. Celiac Disease is a medical condition worth noticing and if we could get the word out lots more people would come to realize they have it!!

samking72 Rookie

Yea, I mentioned in the e-mail how serious it is,how undiagnosed it is and that many people are misdiagnosed. I emphasized on how doctors don't even know what it is and that it is more common than people think. Hopefully, they get the point. I listed some symptoms ( the major ones ) and what it does to our bodies. I wrote about what we have to stay away from and how it is a life-long commitment to a strict diet. I mentioned how it has affected my social life and relationship ( not in a good way ). They like a that sappy stuff. I guess we'll just wait and see what happens. I'm not giving up hope. Yet.

Lymetoo Contributor

Maybe there are too many "diseases" out there for her to cover. We have people dying from Lyme disease and it's WAY underdiagnosed, but she won't do a show on that either.

But that said, DON'T GIVE UP TRYING!

lovegrov Collaborator

I'm not telling folks to give up trying, but various groups have been trying to get Oprah to do a celiac episode for more than four years now. I don't know of anybody who's ever even gotten a reply.

richard

chrissy Collaborator

well....if she likes eating disorder shows----maybe i could write her about my daughter having anorexia AND celiac disease and how complicated celiac disease made her eating disorder, and how the hospital couldn't manage to keep her gluten free which probably explains her slow weight gain--------- and we could get it past her that way???

Kaycee Collaborator
right on!! I'm sooo sick of watching her do so many shows on anorexia and bulimina. Those diseases make no sense to me. Celiac Disease is a medical condition worth noticing and if we could get the word out lots more people would come to realize they have it!!

Anorexia and bulimina up to a point are self inflicted, sorry if I offend any one, and this disease is just a freak of nature. Don't get me wrong, I do feel sorry for the anorexics and bulimina, and a lot of money probably goes into their diseases, as opposed to coeliac. Has this answer got anything to do with the fact that there is no medication needed for straight coeliac, and therefore no medical or phramaceutical money is thrown this way.

And I also know from reading here, that some people are accused of being anorexic because they are so thin, and not a lot of people can understand that it is coeliac that is doing it to them. I can sympathise for you guys.

I can remember an actress a few years back being told in magazines that she was anorexic, and she came back with the reply that it does not matter what she eats, she can not gain any weight, she just has an extra good metablism. Could be coeliac.

Cathy

Just a rant, little one.

Lauren M Explorer
Anorexia and bulimina up to a point are self inflicted, sorry if I offend any one, and this disease is just a freak of nature. Don't get me wrong, I do feel sorry for the anorexics and bulimina, and a lot of money probably goes into their diseases, as opposed to coeliac. Has this answer got anything to do with the fact that there is no medication needed for straight coeliac, and therefore no medical or phramaceutical money is thrown this way.

And I also know from reading here, that some people are accused of being anorexic because they are so thin, and not a lot of people can understand that it is coeliac that is doing it to them. I can sympathise for you guys.

I can remember an actress a few years back being told in magazines that she was anorexic, and she came back with the reply that it does not matter what she eats, she can not gain any weight, she just has an extra good metablism. Could be coeliac.

Cathy

Just a rant, little one.

Whoa, sorry, but I have to say something.

First - eating disorders ARE diseases. Just because some people don't understand them does not make them any less real. Also, I don't think that calling the disease a freak of nature is really appropriate. I don't know the exact statistics, but eating disorders/disordered eating are much more common than most people realize (even if most people who suffer from them - and I did say SUFFER - don't actually seek treatment).

And Second - I think what is being suggested is that because eating disorders are such a hot topic at the moment, we could use that angle to get Celiac on her show. There is a STRONG connection between Celiac and eating disorders. For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

Apologies if I came off witchy in this reply, but I could not read this and not reply. Back to the topic of Oprah...

- Lauren

jerseyangel Proficient
For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

Me too--thank you, Lauren! :)

Lauren M Explorer

Ooops, I meant to quote beaglemania's post in mine as well.

And thank YOU Patti :)

- Lauren

Kaycee Collaborator
Whoa, sorry, but I have to say something.

First - eating disorders ARE diseases. Just because some people don't understand them does not make them any less real. Also, I don't think that calling the disease a freak of nature is really appropriate. I don't know the exact statistics, but eating disorders/disordered eating are much more common than most people realize (even if most people who suffer from them - and I did say SUFFER - don't actually seek treatment).

And Second - I think what is being suggested is that because eating disorders are such a hot topic at the moment, we could use that angle to get Celiac on her show. There is a STRONG connection between Celiac and eating disorders. For myself, I have absolutely no obsession with my weight, but I am often "afraid" of certain foods because of how sick I was at one point. I have disordered eating, which was caused by my Celiac disease.

Apologies if I came off witchy in this reply, but I could not read this and not reply. Back to the topic of Oprah...

- Lauren

Lauren

Thanks for that. I do agree with you eating disorders are diseases, but sometimes I do not use the right words, or put things as succintly as I should when I am a bit het up. I can sympathise with them, as I said. Being a freak of nature is probably the wrong words to describe us, so I will slap my wrist for that. But any disease is in a way a freak of nature, probably the wrong way to say it, again, but how do you describe it when nature has given you a raw deal in health matters? Bad luck?

Maybe how we talk, our slang and how we explain things in NZ is a bit different to the USA, and the last thing I want to do is offend anybody

Like you I do feel I have an eating disorder. But if I tell people that, they look at me and say really, as I am a little overweight. But food does scare me.

Never mind the witchyness, I deserved it. But this is one topic that seems to get me a bit hot.

chrissy Collaborator

my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

samking72 Rookie

www.oprah.com

evie Rookie
my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

Chrissy; If you have the gift of gab to set that to words I am all for you sendig that connection to Oprah, I am not good at that. But getting both problems more publicity (open to the people) needs to happen. also I do not know how to send it but am sure someone will know how to do it, we have some VERY computer literate people here!! Go for it.. :):P you may even get info out to more of the doctors who know little about celiac or eating disorders. Hope your daughter is doing much better now. evie

jerseyangel Proficient
my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

Chrissy--If you're up for it, I'd say yes, definately! It's worth a try--nothing else has gotten their attention that I know of.

elye Community Regular

I was part of that Oprah email campaign that we instigated last year. It was very well organized, and went on the premise that we, as a huge group, INUNDATE her corporate office with letter upon letter. In fact, there were shifts put in place...everyone with a last name A-H wrote at the beginning of the week, then I-P a few days later, and so on, and then we would repeat it the next week. I did my part for three weeks, and then like so many things, it wasn't mentioned again and I stopped (life gets in the way, ya know?) However, I think that attacking the Oprah machine en masse, in numbers that she cannot ignore, and in writing, is maybe the only way those big guys will tap Oprah on the shoulder about this.

angel-jd1 Community Regular
my daughters eating disorder was going to kill her long before celiac would have taken it's final toll, if we had not hospitalized her. eating disorders are definitely a deadly disease. maybe they are more interesting for talk shows because they are so hard to understand. celiac disease is a genetic disease, so we know exactly where it comes from----maybe that is why oprah's show has ignored it.

sooooo, does anyone think i should attempt the eating disorder/celiac disease angle? where would i send my inquiry and info to?

I think it would be a good idea. It would spotlight 2 important diseases/disorders.

-Jessica :rolleyes:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748

    Rachel Wilson
    Newest Member
    Rachel Wilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.