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floridanative

Cbs News Story

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(revealing my total non-techno saviness, here)

Can someone tell me what is a listserve? do I write to that email address and ask for something? :blink:


SUSIE

Diagnosed January 2006

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

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(revealing my total non-techno saviness, here)

Can someone tell me what is a listserve? do I write to that email address and ask for something? :blink:

Yeah, usually just send them an email that says "I want to subscribe"

And I got an email about it too! I am so watching it! It comes on at 5:30 here (Texas). You can check at www.tvguide.com for your local time/channel!


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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(revealing my total non-techno saviness, here)

Can someone tell me what is a listserve? do I write to that email address and ask for something? :blink:

A Listserv is like a newsgroup or forum, but all communication is done via email. Members become part of the group, and posts are sent to all members via email.

Michelle

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I'm glad I checked. It comes on at 5:30 here too (Sacramento, CA).

Nancy


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

~Chinese Proverb

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I'm glad I checked. It comes on at 5:30 here too (Sacramento, CA).

Nancy

Would that be 5:30 Chicago time, i have to watch this!


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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Its on! Hope you are watching!


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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WOW-----this is a GREAT STORY! I HAVE GOOSEBUMPS. WOW. SO HAPPY TO SEE A REAL REPORT---AND GREAT TO SEE DR. GREEN

I agree! Short and Sweet! Enough to get people thinking and asking questions!


EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes

DQ2 and DQ3 sub type DQ7 in December 2005

Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.

THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

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Wow! I thought it was very good. They put a lot of info into the few minute segment. :)

Kinda strange seeing it on TV like that....


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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So, what'd he say?


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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Good gosh you guy are fast.

It was the best coverage on national news that we have ever gotten. I CERTAINLY am no fan of Katie Couric, but someone put it out there and bless their hearts.

Lisa


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Lisa--I feel the same way! After all the letters and emails we have sent over the months, it's just so gratifying to see something like that.

I like how the doctor said that when he was in med school, they were taught Celiac was a rare disease! He wasn't all that old, either ;)


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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Very good...but i wish it would've been alot longer, i feel like there were so many other symptoms they could've mentioned. But, i am super thankful they did a segment on us :D


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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omg... YOU guys made this happen with your e-mails? omg... you guys are HEROS!

Who knows what ultimately got them to do it--I just know that a lot of us have writen to every news outlet that we could think of--maybe someone finally listened :D


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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YIPPEE!! I thought the segment was great! I honestly didn't expect it to be much longer than a 5 minute segment. They touched upon a lot in a brief amount of time. In fairness to them, they *did* give Celiac Disease a major boost in mainstream media and couldn't possibly get into all of the symptoms and related issues in a "segment". Kudos to CBS for putting it out there.

Does anyone else find Katie Couric to be stiff and have little affect?? :huh:


~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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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


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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I didn't see it!!! I was at a cubscout meeting with my son, and just got home!!!

DRATS!!!

I saw Dr. Green in Stanford, he was awesome....very funny, but he DID push the biopsy at that point. I'm kind of surprised to read that he didn't.

I wish I could have seen it. Heading to see if I can find a replay of it on the cbs website.....


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Thanks for posting that link Nancy. :)


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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Floridian,

Actually, for a national news segment (think, 30 min, minus commercials...what, maybe 22 min?) I was actually REALLY impressed that it got as much time as it did (lead in from Katie, story, then 'discussion'). My husband works in the news business so I pay more attention to that type of stuff....so I must say, I was impressed that they gave it so much time! I was afraid it was going to be a 20 second segment on a research study or something.

Laura

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I was just watching the CBS evening news and there was a teaser for a story coming on tomorrow night. The teaser went something like this: this whole family has a disease but none of them knew it until little Emily got sick. It's thought a million Americans have it but most of them don't know it yet (end of tease). Chills went down my spine and I usually have excellent instincts so I think the story may be about Celiac. I don't even watch the CBS news so it was a fluke that I had it on. I can't be home tomorrow to watch but I'm going to tape the whole show tomorrow night, just in case I'm right. I'll post back if I'm right or wrong.

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

Tom

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