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Judyin Philly

Cnn Special On Celiac Tomorrow ?

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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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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


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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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.


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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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)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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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.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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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.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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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


Richard

"Not all who wander are lost" - J.R.R. Tolkien

Diagnosed 3/8/05

Sister also Celiac

Risus remedium optimum est

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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:

http://www.cnn.com/feedback/cnntv/


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 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.


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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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!


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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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.


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 sent Heidi an email. :)


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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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.


Richard

"Not all who wander are lost" - J.R.R. Tolkien

Diagnosed 3/8/05

Sister also Celiac

Risus remedium optimum est

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Nice pic patti :)

Thanks, Lisa B)


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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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


Judy in Southern CA

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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


Judy in Southern CA

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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.


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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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?


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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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.


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


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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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...


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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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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