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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    2. - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    3. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,267
    • Most Online (within 30 mins)
      7,748

    Kristine Ryder
    Newest Member
    Kristine Ryder
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
×
×
  • 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.