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floridanative

Cbs News Story

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THAT WAS THE BEST SEGMENT ON CELIAC I HAVE EVER SEEN!!!!!

I'm so glad they didn't push the biopsy or that all symptoms are GI. AWESOME!!! :D

OH MY GOD - - it just ran here - - I totally agree! Much more than I expected - - really, really on the mark. and national news - - and toward the beginning of the broadcast - NOT something thrown in at the end - -

LOVED IT!!!!


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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THAT WAS THE BEST SEGMENT ON CELIAC I HAVE EVER SEEN!!!!!

I'm so glad they didn't push the biopsy or that all symptoms are GI. AWESOME!!! :D

Chels:

Good to see you again. I agree. To get and article on National News coverage in prime time, is about as good as it gets.

This is major, no complaints from me!!! :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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It was so on the mark I was actually starting to get tears in my eyes!

Tom

Oh good. I wasn't the only one crying...

{sniff}

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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My mother and I watched it together and we both cracked up when they showed the family eating those sad, flat little cupcakes! I remember baking things that looked like that. :lol: Someone send that woman some gluten-free baking mix, stat!

Good show. Lots of coverage. . .get ready for the onslaught of newbies. ;)

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Good show. Lots of coverage. . .get ready for the onslaught of newbies. ;)

'

OMG you're right....we'll have to make sure and educate everyone...the pressure! it's up to us! :blink:;)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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The CBS News Story was AWESOME!!!!!!!! My prayers were answered!!! Finally, my friends and family don't think I'm nuts!! I had chills up my spine and tears rolling down my cheeks. It was serile. My sons results haven't come back from Enterolab yet, but he has responded to the gluten free diet. He had terrible stomach aches, vomitting, acid reflux, horrible mouth sores, and it was starting to affect him mentally. He couldn't go to sleep at night and nightly woke up with terrible stomach pains and sometimes vomitting. We have been doctoring for 6 months with us, which I know is short in comparison to some people's stories. Thank God I had access to a person who has family members who are gluten intolerant and access to tons of great info on the internet including this site!! Going gluten free was our last resort. The medical community has laughed in my face, basically telling me I'm crazy. I am concvinced I know more about it than any doctor in this area. The first dr. ordered the wrong test and the second ordered the right one when my son had already been gluten free for a month. No one understands the terrible alone, abandoned feeling unless you've gone through it. Thank God for the news story. Now people can see it's not just kids who are withering away that suffer from this. The mother basically diagnosed the daughter and she was CLASSIC Celiac. All I can say is I hope the right people were watching!! The doctors!!! I am so thrilled and have been in a depression over this for the last week. I am so happy!!! Let's try for Oprah now!!!! I have emailed her on this topic and I think there is power in numbers!! :)

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Everyone make sure you email CBS thanking htem... they need postive reinforcement as much, if notmore then, the bad feedback!

Yes!!! Email lots of thanks and don't forget to email Oprah!!! Let's get this out to the public!!!!!

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I sat here with my hubby watching it. I thought it was great. I only hope that people I know were also watching. I forgot about the newbie aspect of the broadcast LOL. Almost 4 minutes in prime time is awesome.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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You guys can watch that portion of the newscast on www.cbsnews.com. Wow, was it good!


~Angie~

Gluten free since May 2004

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I watched it with my mom and her hubby....I thought it would be longer but I thought it was very good regardless. I was hoping my moms hubby was paying attention because I think he might have Celiac. I was happy with the info they provided ...mostly the fact they pointed out that its common, that 95% arent diagnosed and that symptoms can vary. I think alot of people might get themselves diagnosed just from seeing a short segment like that.


Rachel

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I couldn't get the video to play. Anyone else have that problem. It said I didn't have windows media or real player installed and I have both on my computer.


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 was happy with the info they provided ...mostly the fact they pointed out that its common, that 95% arent diagnosed and that symptoms can vary. I think alot of people might get themselves diagnosed just from seeing a short segment like that.

I agree. The fact that the medical correspondent specifically stated that it's no longer looked at as a disease specifically related to horrific gi symptoms was clutch! I loved the fact that they listed associated symptoms that weren't specific to gi problems. I thought it was great that they mentioned neurological symptoms and reccurent miscarriages.


~Kristy~

Zachary (5 y/o son) -negative labs, no biopsy, gluten-free diet 3/06 with amazing results

*Enterolab testing: auto-immune response, main-Celiac gene/HLA-DQ 2, non-Celiac gluten sensitivity gene/HLA-DQ 3

"Congratulations!

Today is your day.

You're off to Great Places!

You're off and away!"

--Oh The Places You'll Go

by Dr. Seuss

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I couldn't get the video to play. Anyone else have that problem. It said I didn't have windows media or real player installed and I have both on my computer.

Glad I got on this thread tonight and read about the CBS celiac story, that was great to have on National TV!!

I did not see it because I was so tired after dental work today that I went to sleep during that time. Do not want to say I nap because of being older, I blame it onto being Celiac. HA-HA Such 'Good' publicity for "Celiac disease". Am I a newbie on here? Evening all!! evie

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That was a GOOD piece!

Penguin - welcome back!


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Just watched the video. Good story, but that gluten free store?! Must've been a set. No such thing in real life. Maaaybe a gluten-free section.


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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Guest nini

I missed it... I wasn't home from working in time, and I can't get the video to play :(

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Linda,

Actually, surprisingly enough, there are gluten free stores. A family opened one in Pennsylvania, about 20 minutes from my parents house. Everything in their store is gluten free---they opened it because people in their family were diagnosed with Celiac. There is one in Virginia Beach, and he carries probably 90% gluten free stuff (independently owned, and his family has two people with Celiac).

So, stranger things have happened :)

Laura

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Linda,

Actually, surprisingly enough, there are gluten free stores. A family opened one in Pennsylvania, about 20 minutes from my parents house. Everything in their store is gluten free---they opened it because people in their family were diagnosed with Celiac. There is one in Virginia Beach, and he carries probably 90% gluten free stuff (independently owned, and his family has two people with Celiac).

So, stranger things have happened :)

Laura

Hi Laura, Where are the stores located? I think there is a health food store close to Cbn - is that it?

Also I will be going to Pa. later this month. Where is that one located? Thanks :)


Lee

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Linda,

Actually, surprisingly enough, there are gluten free stores. A family opened one in Pennsylvania, about 20 minutes from my parents house. Everything in their store is gluten free---they opened it because people in their family were diagnosed with Celiac. There is one in Virginia Beach, and he carries probably 90% gluten free stuff (independently owned, and his family has two people with Celiac).

So, stranger things have happened :)

Laura

I sit corrected. I've never seen a whole store, but certainly sections. In fact the health food store kindly labels celiac friendly stuff with a red dot sticker and the words "celiac ok". I wonder where the story originated.

For everyone who couldn't get the video to play I had to click a litte circle next to the file type I wanted to play. There was a commercial first. <_<


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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Just watched the video. Good story, but that gluten free store?! Must've been a set. No such thing in real life. Maaaybe a gluten-free section.

Linda,

There was a store in my area that was all gluten free. It was amazing!! Unfortunately it recently closed down. :(


Rachel

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OK, I finally got to watch it. Maybe shutting down my computer last night helped. I thought it was a good piece. I emailed my mom the video link. She's on vacation and I doubt she would have seen it.

We have a gluten free store in Vancouver WA called Lingonberries.


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 agree that this was a good piece! And I cried too. Thank goodness that people will get this message. I am excited to send it to my parents, who so far have been to stuborn to get tested. Taylor

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