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Cnn Special On Celiac Tomorrow ?


Judyin Philly

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

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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


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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

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    • trents
      Most doctors don't even order anything besides the tTG-IGA and maybe total IGA when doing blood testing for celiac disease. The EMA is the very first celiac blood antibody test that was developed and has largely been replaced by the tTG-IGA which is less expensive to run in the lab. My understanding is they both pretty much check for the same thing. The IGG tests are second tier tools that are less specific for celiac disease. It is not at all uncommon for the EMA and the tTG-IGA to disagree with one another. We frequently see this on the forum. I do not know why. Please realize that doctors typically run a number of tests when diagnosing a medical condition. If there was one test that was foolproof, there would not be a need for other tests and other testing modalities. It works that way with many or most diseases. 
    • lizzie42
      But yes seeing all those negatives does give me a bit of doubt! I feel confident but those results give me a seed of doubt. Especially since it's a lifelong diet for him! 
    • lizzie42
      When I originally posted I hadn't talked to the pediatrician yet and didn't realize about the budosinide. Now I feel pretty confident. I was concerned that all of the tests didn't come back positive - that seemed kind of ambiguous to me. I didn't realize that was common. Do a lot of people on here have a positive tTG but negative other tests? I thought the EMA was pretty "gold standard."  And yes I do now wonder about the asthma! I hope being gluten free will improve that! 
    • trents
      @lizzie42, So, I'm confused with what you are uncertain about. Do you really have any doubt that your 5 year-old son has celiac disease? Is it because he isn't exhibiting anemia and the rash as did your daughter? The genes are certainly there and the antibody testing certainly indicates celiac. And given the fact that he was on a reduced gluten diet and on a steroidal medication (which would likely suppress immune responses) do you really have any doubt? If you can't afford the GI consult with endoscopy/biopsy, why would you consider a gluten challenge after removing the remainder of the gluten from his diet? Have you considered that his asthma and "sickness" may be tied to celiac disease?
    • lizzie42
      These are my sons results. My daughter was high positive on everything and maxed out the tests in addition to being anemic, bad rash, etc.  Yes, he has been eating mostly gluten free (not completely). He was also on a high dose of budosinide at the time of testing due to some asthma and sickness. I didn't realize that affects the results.  This test along with my daughter being so sick with it prompted the pediatrician to diagnose him. We can always do a gluten challenge in the future. We will do that with our 1 year old. We will have her eat school lunch when she goes to prek and then test after a couple months. 
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