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Judyin Philly

Cnn Special On Celiac Tomorrow ?

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The are running more information on Celiac on CNN now!!!!!


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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What did they say?????????? OOoooohhhhhh, this is exciting!

Karen

Maybe they were so inundated with e-mail questions, they realized they needed to expand their coverage of it? Hope so!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Can this be watched on cnn?


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I have only recently learned how to stand up for myself. It's bad enough getting smashed down by doctors who think gluten is not a problem. Now I feel I am getting slapped in the face, both by Hex's original post and by Judy, Momma Goose, and others who think that I have no right to respond.

Kudos for learning to stand up for yourself - it can be a hard task, and often unappreciated in our world. And I appreciate your point about it seeming a relevant divergence. But, in the interest of not hijaking the thread, which you note you were not trying to do, the idea of posting a new topic on the subject is quite relevant. To address your concern of connecting it to this conversation (which I happen to think is a weak link, but that is a point of disagreement, and I accept that from your perspective, it is connected to the conversation as it had been going), all that need be done is have a post on here that notes why you think a segment on CNN on celiac is related to the pharmaceutical industry, then a hyperlink to the new topic you started related to that. This accomplishes your goal of addressing the issue, without derailing the goal of the original conversation either. Dear god, dare I use the 'win-win' phrase? ;)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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all that need be done is have a post on here that notes why you think a segment on CNN on celiac is related to the pharmaceutical industry, then a hyperlink to the new topic you started related to that. This accomplishes your goal of addressing the issue, without derailing the goal of the original conversation either.

Thank you for the good idea. What exactly is a hyperlink, and how do you do it?

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What did they say?????????? OOoooohhhhhh, this is exciting!

Karen

Maybe they were so inundated with e-mail questions, they realized they needed to expand their coverage of it? Hope so!

Karen

Heidi Collis said that over 800 people took the survey, and mentions some links with more information about celiac disease. celiac disease goess 97% undx'd. It was very short. Her co anchor said he knows first hand how difficult it is to eat out as he has lunched with her several time, an it took "hours" to study the menu to select something safe to eat!!!

Maybe someone can find this seg on CNN and post like yesterday.

Guess we need to be prepared for "incomming" :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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That was a great piece! Nice to see. :)

For those looking for the video clips, both are posted here:

http://www.celiaccentral.org/

There are links to both segments on the home page. I know some had problems with viewing, I don't know if the problem simply got fixed, but I had no trouble viewing either of the videos just now.

Michelle :)

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Kudos for learning to stand up for yourself - it can be a hard task, and often unappreciated in our world. And I appreciate your point about it seeming a relevant divergence. But, in the interest of not hijaking the thread, which you note you were not trying to do, the idea of posting a new topic on the subject is quite relevant. To address your concern of connecting it to this conversation (which I happen to think is a weak link, but that is a point of disagreement, and I accept that from your perspective, it is connected to the conversation as it had been going), all that need be done is have a post on here that notes why you think a segment on CNN on celiac is related to the pharmaceutical industry, then a hyperlink to the new topic you started related to that. This accomplishes your goal of addressing the issue, without derailing the goal of the original conversation either. Dear god, dare I use the 'win-win' phrase? ;)

Sounds like a great idea to me! :rolleyes::D

That was a great piece! Nice to see. :)

For those looking for the video clips, both are posted here:

http://www.celiaccentral.org/

There are links to both segments on the home page. I know some had problems with viewing, I don't know if the problem simply got fixed, but I had no trouble viewing either of the videos just now.

Michelle :)

Awesome! She is doing wonders in getting the word out! She even said near the end that's what she is trying to do - because it is so underdiagnosed, it needs more exposure! Yippee!!!!!!!!!!!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Thank you for the good idea. What exactly is a hyperlink, and how do you do it?

A hyperlink is the underlined words that you can click on and that take you to a different website (there's a www.celiaccentral.org link in Canadian Karen's post just above this one). When you are adding a reply to the forum, there is a bar at the top of the typing area. It allows you to include Bold, Italics, etc. There are several small icons on the bar. If you float your cursor over them, a description will pop up. The one that looks like the earth with a chain in front of it allows you to add a link to another webpage. If you click on that icon, a small box will open that allows you to paste in the link.

To do what I think you want to do, just start the other thread, then copy the entire web address from the address bar at the top of your screen. Then jump back to this thread, start a reply, click on the hyperlink icon, then paste the entire web address into the box that opens. Click okay and then type in a name for the link (you can paste in the address again or call it "The Vaccines Thread" or "My Very Favorite Link in the Whole Wide world because I started it and so it's the very best one" or whatever else you want to call it :D). Then click "okay" again, and you're done!

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Well, that follow-up gave me tingles! She really is "the voice of Celiac disease". She seems to be proclaiming her desire to make this diseaes known to all. I'm so glad someone with ability has picked up the torch to lead the charge.


The American Diet of Chips, soda, ice cream, Goldfish Crackers, bread for breakfast (cereal, donuts, waffles, toast, bagels) cereal bars, "gummies", candy, msg, dairy products of all kinds, soy, and other chemicals - is Killing us and promoting diseases. BE HEALTHY. EAT NATURAL FOODS. DO NOT INGEST CHEMICALS! If you cannot pronounce it, do not eat it. Use Coconut oil. Eat herbs in salads. NO DAIRY. LOVE YOURSELF. LOVE YOUR FAMILY. FOOD IS MEDICINE!

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Well, that follow-up gave me tingles! She really is "the voice of Celiac disease". She seems to be proclaiming her desire to make this diseaes known to all. I'm so glad someone with ability has picked up the torch to lead the charge.

I thought the same thing!

Michelle, Thanks for that link--I missed the broadcast :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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A hyperlink is the underlined words that you can click on and that take you to a different website (there's a www.celiaccentral.org link in Canadian Karen's post just above this one). When you are adding a reply to the forum, there is a bar at the top of the typing area. It allows you to include Bold, Italics, etc. There are several small icons on the bar. If you float your cursor over them, a description will pop up. The one that looks like the earth with a chain in front of it allows you to add a link to another webpage. If you click on that icon, a small box will open that allows you to paste in the link.

To do what I think you want to do, just start the other thread, then copy the entire web address from the address bar at the top of your screen. Then jump back to this thread, start a reply, click on the hyperlink icon, then paste the entire web address into the box that opens. Click okay and then type in a name for the link (you can paste in the address again or call it "The Vaccines Thread" or "My Very Favorite Link in the Whole Wide world because I started it and so it's the very best one" or whatever else you want to call it :D). Then click "okay" again, and you're done!

Thanks, Betsy--I always wondered what to do with those icons. I am not at this point planning on starting any threads, but I appreciate your tutorial!

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I used the link to Heidi Collins to write a real letter telling of our family's struggle to be dxed. I read that most letters are indeed read by paid employees, just not individually responded to.

I hope that giving details about how difficult a dx was to obtain will become a focus on a future segment. I thanked her for her efforts to promote awareness as that is what is needed in order for that group of 97 % undxed people to find the answer to their health issues. I am thinking that personal stories will show the show's producers that there is a real need for continuing dialogue about celiac disease. Also, I believe that evertyhing is justified by money.... If the show sees a growing audience interested in the topic of celiac disease, they will agree to a real segment with a professional speaker, not just friendly banter/exchange between co anchors. Please consider a follow up email to keep the momentum alive.


The American Diet of Chips, soda, ice cream, Goldfish Crackers, bread for breakfast (cereal, donuts, waffles, toast, bagels) cereal bars, "gummies", candy, msg, dairy products of all kinds, soy, and other chemicals - is Killing us and promoting diseases. BE HEALTHY. EAT NATURAL FOODS. DO NOT INGEST CHEMICALS! If you cannot pronounce it, do not eat it. Use Coconut oil. Eat herbs in salads. NO DAIRY. LOVE YOURSELF. LOVE YOUR FAMILY. FOOD IS MEDICINE!

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I just watched CNN's follow-up segment and it was short but great.

She expanded more on the everyday struggles faced by Celiacs and it sounds like they are going to do continuing coverage. Mentioning again that a crumb is the same as a loaf of bread and that EVERYthing needs to be thoroughly checked - including medications, vitamins, lipsticks, etc...

I'm definately going to email another thank you to help keep this momentum going!!


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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I truly feel this is a breakthrough. A mainstream anchor on the most watched news channel in the world! What could be better?

I love it!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I watched it (or should I say listened to it) at celiac central. Still get the teeny screen with only a portion of the people showing. Very aggrivating. Good to have mainline coverage.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I watched it (or should I say listened to it) at celiac central. Still get the teeny screen with only a portion of the people showing. Very aggrivating. Good to have mainline coverage.

Andrea, could there be a issue with your Quicktime settings in terms of video size? Are there preferences you can set/change to adjust the size?

Michelle

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I watched it (or should I say listened to it) at celiac central. Still get the teeny screen with only a portion of the people showing. Very aggrivating. Good to have mainline coverage.

LOL! I got the same thing! A 1" by 2" box that only showed her from the mouth down! LOL!

Oh well, got to hear what she said, which was great!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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LOL! I got the same thing! A 1" by 2" box that only showed her from the mouth down! LOL!

Oh well, got to hear what she said, which was great!

Karen

I got the same little tiny box and when I tried to futz with the settings, the video stopped!

It didn't matter to me as long as I got to hear what she was saying, though.


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

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I let them know about the video issue but I think it might be an individual computer thing. However, I've been able to view other video's on their site full size. If if is something on their end, I think they'll fix it.

Please everyone - make sure to e-mail CCN and Heidi Collins via the link Karen posted above. It does make a difference! Thanks to everyone who already has.


Dx'd with anemia - March 2005

Positive blood tests - Sept. 2005

Positive biopsy - Jan. 2006

Gluten free since 1-23-06

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The video played fine for me. The box is small, maybe 2" x 2" but I do see entire people (or desk up) anyway. I think you are having browser or QT issues if the video is not playing correctly. The reason for the small size is to decrease bandwidth consumption. If you look at the url, Celiac Central is hosting this on their server, it's not a feed from a CNN server. To be sure, Celiac Central doesn't have the powerful streaming servers that CNN does.

Right-click on the video once it starts to play on your screen and look to be certain that your QuickTime settings match your connection speeds, etc.

Respectfully, I don't think it's a good idea to e-mail CNN about this issue. They might decide that the quality Celiac Central is able to provide is not up to their standards and ask them to pull it. I would certainly hope not, but you never know.

WOW!!! Another great coverage. As others here have already said, I like that this one is more down-to-earth with daily struggles presented. I think it's a great juxtaposition to yesterday's statistical orientation. AND, I'm sure y'all caught it....today she tossed in Oats as a grain to avoid :)

Woo Hoo!

And HUGS to all of you with eagle eyes and radar who notified us about these two days of coverage!!

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Guest nini

I was able to view it just fine! I'm just tickled silly that this is getting some publicity! I just wish it was aired during PRIME TIME and not just the middle of the day! Kudo's to Heidi Collin's for using her position to be an advocate for Celiac Awareness!

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I had no idea this was on the air Monday.... and my husband watches CNN all the time. Anyhow, I'm listening to the broadcast right now. It's great! I can't see the the video either, but I can hear it. Thanks for posting the info on where to find it. It's a good interview.


Karen

gluten-free since March 05

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