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Judyin Philly

Cnn Special On Celiac Tomorrow ?

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

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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

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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.

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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)

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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.

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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.

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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. :)

http://www.cnn.com/feedback/forms/form4.html?4

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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.

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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.

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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

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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.

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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

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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.

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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...

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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

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