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 Our Content
    eNewsletter
    Donate

Cnn Special On Celiac Tomorrow ?


Judyin Philly

Recommended Posts

Guest nini
Guys - I missed it - who was the celeberity with celiac?
The Anchorwoman doing the segment, Heidi Collins

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



Celiac.com Sponsor (A8-M):



  • Replies 114
  • Created
  • Last Reply
jerseyangel Proficient
Guys - I missed it - who was the celeberity with celiac?

It was the newswoman who hosted the segment.

Lisa and Judy--We thought the piece was going to be bumped, too! When the special report came on, I thought oh no. :P

HawkFire Explorer

wow. This was a great opportunity to inform the public. I have emailed them myself. I asked several questions for which I already know the answer. I asked questions that I, myself had a difficult time comprehending about the disease when I was initially dxed. I am hoping that my questions, along with others I assume will pour in, will prompt a second segment on this disease. I am certain their brief segment will get people thinking. A follow-up should be requested by all here.

Lisa Mentor

Guys:

I think it would be wonderful for someone to write Heidi Collins a letter on behalf of all 6,000 (or more) members of Celiac.com Member and thank her for her advocacy. (I got the shakes today :( , or I would)

2Boys4Me Enthusiast

Perhaps doctors should refer to the diet as inconvenient and not difficult. We've been doing it for just over a year and after you get the hang of it it's not difficult, but it's darned inconvenient.

marciab Enthusiast

Rats, I missed it. Did they say anything about people with celiac being misdiagnosed with CFS or having severe nuerological problems ?

I would have never thought before this past year to listen to this broadcast if I only heard the word celiac.

TriticusToxicum Explorer
Guys:

I think it would be wonderful for someone to write Heidi Collins a letter on behalf of all 6,000 (or more) members of Celiac.com Member and thank her for her advocacy. (I got the shakes today :( , or I would)

I missed the segment (#$@! work!) I did find where you can email CNN "about" an anchor. I don't know if she'll ever see it, but maybe if enough of us send our kudos the message will get tthrough. :)

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

I just e-mailed Heidi Collins directly to thank her for giving this disease some exposure.

Karen

Here's the link to e-mail her directly:

Open Original Shared Link

HawkFire Explorer

Thank you Karen. I have sent an email. I also want to suggest again that others send in questions that were not answered by the segment. To encourage a broader discussion about the disease. How about a segment on food choices? Food companies that are meeting the gluten free food needs of our growing population? How about including resources on restaurants that accomodate Celiacs? How about adding information on the world wide scope of the disease? European action regarding testing all children for the disease? How about mentioning enterolab which allows a person to test from home? More can be said for certain. I believe the dialogue has begun. It's time to give them a reason for a second look.

floridanative Community Regular

Hawkfire is right. We ALL need to e-mail Heidi so they see the huge need for more talk about Celiac in the media. Please everyone do you part. Together we can make a difference!

HawkFire Explorer

Yes, otherwise Poor Heidi will think she's all alone. Who knows what resistence she encountered in trying to open up a dialogue about a personal health issue. She was very brave.

floridanative Community Regular

The CNN video clip from today can be seen on www.celiaccentral.org.

jerseyangel Proficient

I just sent Heidi an email. :)

Lisa Mentor
I just sent Heidi an email. :)

Nice pic patti :)

TriticusToxicum Explorer
The CNN video clip from today can be seen on www.celiaccentral.org.

Thanks i missed it this morning. Glad to have her aboard! Nice interview.

jerseyangel Proficient
Nice pic patti :)

Thanks, Lisa B)

Judyin Philly Enthusiast

LOVE YOUR NEW PICTURE PATTI. AND LOVE THE TOP..SO COOL

WROTE TO HEIDI AND ALSO WROTE TO CNN TO ASK FOR MORE FOLLOW UP STORIES AND GAVE SOME QUESTIONS TO LOOK INTO.

JUDY

happygirl Collaborator

marciab: i didn't see the clip so i don't know if he discussed it, but he covers misdiagnosis as well as other symptoms (beyond the typical ones), including neurological problems, in his book, which is AMAZING.

Judyin Philly Enthusiast

I just got a confirmation notice back that Heidi and CNN got my emails re: the show.

did anyone else who wrote emails today get one back too?

Judy

HawkFire Explorer

I feel a bit sad that it took a woman on a tv show to get the disease (and her five year old son) for the word to get out nationally. It's been a long hard road for those (myself included) who went so long looking for a dx only to discover the disease is effectivly managed through diet. The real story is surely the strong arm of the pharmeceutical companies to drug every symptom of celiac diseaes with a pill , rather than look for the cause of the symptom. I'm so saddened by the truth.

2Boys4Me Enthusiast

When I go to Celiaccentral.org I only get about a 1" x 1/2" picture of her mouth talking. <_< How do I get the whole thing?

HawkFire Explorer
When I go to Celiaccentral.org I only get about a 1" x 1/2" picture of her mouth talking. <_< How do I get the whole thing?

Haha. Me as well. I did not mind. Just listen. It's broken.

2Boys4Me Enthusiast

I did listen, but I had to look away. :P

Creative-Soul Newbie

It was great to see something on the national news about Celiac! I actually taped it and it was a good beginning. I thoght it was great for Ms. Collins to use her position to help get the word out some more and, as someone said earlier, we don't know if and how many hoops she had to jump through in order to be able to do this piece, so we should thank her ( I just sent her an e-mail as well)!!

Now it would be even better if she would able to do more segments on the topic...

par18 Apprentice
Haha. Me as well. I did not mind. Just listen. It's broken.

Actually when I saw the small video I am reminded of the diagnosing rate for the illness (about 2-5%). Since it appears that about 95% of the video is missing then it makes perfect sense. I did however enjoy the audio!

Tom

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,019
    • Most Online (within 30 mins)
      7,748

    allis
    Newest Member
    allis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Do the skin care products that give you a rash list wheat as an ingredient or are you assuming from your reaction that they contain gluten? It is possible that not only do you have celiac disease, which is not an allergy but an autoimmune disorder, but that you also have a wheat allergy.
    • allis
      Thank you, I’m very happy to be here!! Yes, lately I get rashes and itching when I accidentally use topical skin products with gluten in them. I got a bad rash around my hairline after unknowingly using glutenous hairspray, and a near-full-body rash with a sea salt spray that I guess I rinsed off insufficiently in the shower. Neither looked like typical dermatitis herpetiformis to me based on the posts I’ve read here—both were just large patches, red and slightly raised, with no blisters to speak of. At least yet. The sea salt spray was used yesterday and I noticed the itching this morning, with the rash forming obviously by this afternoon and evening. 
    • Sarah Marie
      Thanks so much for your thorough reply! I was able to schedule with the local pediatric gastroenterologist who specializes in celiac but we have to wait 3 months to see her. 
    • trents
      Sorry, meant to type "or dermatitis herpetiformis for short". What? Every time I try it, the abbreviation for this skin condition is converted to the full length term. I'm trying to type "D" followed by "H". 
    • trents
      Welcome to the forum, allis! By "skin response to gluten products" are you saying you develop a rash when you use lotions, creams, shampoos, etc. that contain gluten? One of the classical symptoms of celiac disease is a skin rash known as dermatitis herpetiformis or "dermatitis herpetiformis" for short. Celiac disease is the only known cause for dermatitis herpetiformis. It has a distinct appearance. It has little blisters or pustules in the bumps. Does this sound like what you experience? Is so, it might be possible to get a punch biopsy done when you are having an outbreak. This would be an alternative to eating gluten. If your skin biopsy was positive for dermatitis herpetiformis you could be diagnosed with celiac disease on that basis alone. Apart from that, I know of no other way to get a diagnosis apart from returning to eating gluten for a period of weeks.
×
×
  • Create New...