Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Comcast Big Wig Has Celiac

floridanative

Recommended Posts

floridanative Community Regular
floridanative
Posted

Some lady from www.celiaccentral.org spoke to our suport group on Sat. and said the Comcast CEO or CFO (or something like that) was dx'd with Celiac. He is promoting charity event to raise awareness/money for research so he has Fortune and Money magazines doing articles about it. The Money article runs in Dec. issue and Fortune runs in the Nov. 13th issue. Comcast provides cable services all over the country. This could be big people!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

Even though he's not a celebrity...he would certainly have some pull. Thanks. :P

jenvan Collaborator
jenvan
Posted

Wow, that could be great for the celiac disease community. Hmmm, guess I need to mark my calendar in advance for these ! Thanks Tiffany!

ebrbetty Rising Star
ebrbetty
Posted

that could really help us

jerseyangel Proficient
jerseyangel
Posted

Boy, this could be huge! I hope he feels the same frustration as we do regarding the lack of awareness--he certainly has the ability to get the word out there--looks like he has already started! Looking forward to the articles--thanks, Tiffany :)

Guhlia Rising Star
Guhlia
Posted

Wow! This could be our big, mainstream break, huh? Thanks for posting!

floridanative Community Regular
floridanative
Posted
  • Author

Well my guess is this guy is frustrated because apparently he was sick for years and years and he was recently diagnosed, maybe less than a year ago. I'm going to try and find his name because I didn't write it down Saturday and the lady mentioned it a couple of times. Anyway, I really do think this could be great for all of us.

Okay - the guy is Ed Snider and he's the Chairman of Comcast. On the site above (old site called www.celiacawareness.com) there is a link about the Money/Fortune mag. articles and their issue dates. Time Warner is involved as well. Maybe they own Comcast...not sure about that. Yes - this is a very good thing. :D

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted

His name is Ed Snider.

And he won the 2005 William Penn award, whatever that is.

DingoGirl Enthusiast
DingoGirl
Posted

We've got to get him on our board.....you know, in all his free time.....

Oh Iwrote an email to Oprah today about Celiac and how aghast I am that she has not addressed it....wonder how many of us have emailed her??

tarnalberry Community Regular
tarnalberry
Posted
We've got to get him on our board.....you know, in all his free time.....

Ha! He can probably afford his own, dedicated chef, and train that chef to cook gluten-free for him! **whistfully dreams** :-P (He should still try the mariposa biscotti, though. :-D)

marciab Enthusiast
marciab
Posted

Yeah, I was thinking that he probably has his own chef too. BUT, he must go out sometime. Possibly the next time he goes to Trump's for dinner, he'll teach Donald about Celiac.

This could be very good for us... :D

debmidge Rising Star
debmidge
Posted

Maybe Comcast can run some public info commercials about celiac for free......

Guest Robbin
Guest Robbin
Posted
:) Money talks, so maybe the message will get heard and the medical community will wake up when they get a whiff of green ;) . It is outrageous how long some people have to suffer before they get a dx, and how many die undx? I hope you are out there Mr. Snider and join us!!!
gfp Enthusiast
gfp
Posted
His name is Ed Snider.

And he won the 2005 William Penn award, whatever that is.

William Penn was by all accounts a pretty stand-up guy. (if not a button down guy)

Voltaire wrote about him in his "Letter's concerning the English" and his tolerance and treaty's with the native populations were legendary.

Open Original Shared Link

Ha! He can probably afford his own, dedicated chef

He can but that doesn't mean he will. He is also experienced in changing and forging legislation ....

Rikki Tikki Explorer
Rikki Tikki
Posted

Hi Dingogirl:

I don't know what's up with Oprah, we went on a letter writing campaign last year and she never responded. It's beyond my understanding why someone has not picked up on this and done a show. They could help so many people. Anyway, let us know if you hear anything

Lymetoo Contributor
Lymetoo
Posted
Hi Dingogirl:

I don't know what's up with Oprah, we went on a letter writing campaign last year and she never responded. It's beyond my understanding why someone has not picked up on this and done a show. They could help so many people. Anyway, let us know if you hear anything

Same thing with Lyme disease. Even some of her best buddies have Lyme, but she won't do a show on it. Alice Walker [The Color Purple], Amy Tan [Joy Luck Club] and Rebecca Wallace [Ya-Ya Sisterhood] all have Lyme. People are falling victim to this disease every day and their lives will never be the same....and it does kill people.

Any national exposure for celiacs and other "obscure" illnesses is great news!

Canadian Karen Community Regular
Canadian Karen
Posted

Regarding this Ed Snider guy, all I can say is "The Lord works in mysterious ways........"

Hugs.

Karen

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted
We've got to get him on our board.....you know, in all his free time.....

Oh Iwrote an email to Oprah today about Celiac and how aghast I am that she has not addressed it....wonder how many of us have emailed her??

YOU WOULD BE SUPRISED HOW MANY DOCTORS AND OTHERS ARE ON THIS SITE, lurking and looming posting ANONYMOUSLY.

FORGET OPRAH she's useless!

Hi Dingogirl:

I don't know what's up with Oprah, we went on a letter writing campaign last year and she never responded.

Many of us worked very hard tring to get Oprah on our side. I'm no longer a fan. We can make a big impact in other ways.

I think it's good news this comcast guy has celiac disease. Welcome to our world!

DingoGirl Enthusiast
DingoGirl
Posted
YOU WOULD BE SUPRISED HOW MANY DOCTORS AND OTHERS ARE ON THIS SITE, lurking and looming posting ANONYMOUSLY.

FORGET OPRAH she's useless!

Many of us worked very hard tring to get Oprah on our side. I'm no longer a fan. We can make a big impact in other ways.

I think it's good news this comcast guy has celiac disease. Welcome to our world!

Hey - how do you know about the lurking doctors? that is crazy! :lol: and of course fantastic...

No, I haven't given up on Oprah, but my new target is Dr. Mehmet Oz - - we should bombard HIM with letters!

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted
Hey - how do you know about the lurking doctors? that is crazy! :lol: and of course fantastic...

Because I know a couple that are...

celiac3270 Collaborator
celiac3270
Posted

Phenomenal!!!! This is amazing... I love that he's already taking the initiative with those articles.

Power/pull + initiative = success.

lindalee Enthusiast
lindalee
Posted
Hi Dingogirl:

I don't know what's up with Oprah, we went on a letter writing campaign last year and she never responded. It's beyond my understanding why someone has not picked up on this and done a show. They could help so many people. Anyway, let us know if you hear anything

Oprah LOVES her bread! She tries to stay away from it. Maybe if she thought it might harm her she would listen. She has said in the past -how it puts weight on her thighs. Haven't watched her much lately (been on this site LOL :lol: LL

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. captaincrab55
      - captaincrab55 replied to sillyyak52's topic in Coping with Celiac Disease
      4

      Family education

      Welcome sillyyak52, I'm not sure of your age or if you live with your parents. Is there a nurse in your family or friend of the family that may be able to explain your diagnoses? You can get a second opinion by taking your lab results to another GI Doctor. Good Luck!
    2. trents
      - trents replied to SaiP's topic in Coping with Celiac Disease
      11

      Dangerously underweight, Perfect gluten free and insomnia

      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any...
    3. trents
      - trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      False blood test positive?

      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So...
    4. SaiP
      - SaiP replied to SaiP's topic in Coping with Celiac Disease
      11

      Dangerously underweight, Perfect gluten free and insomnia

      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    5. AndiOgris
      - AndiOgris posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      False blood test positive?

      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,171
    • Most Online (within 30 mins)
      7,748
    Melissa27
    Newest Member
    Melissa27
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • captaincrab55
      Family education

      By captaincrab55 · Posted

      Welcome sillyyak52,  I'm not sure of your age or if you live with your parents.  Is there a nurse in your family or friend of the family that may be able to explain your diagnoses?  You can get a second opinion by taking your lab results to another GI Doctor.   Good Luck!
    • trents
      Dangerously underweight, Perfect gluten free and insomnia

      By trents · Posted

      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
    • trents
      False blood test positive?

      By trents · Posted

      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.  
    • SaiP
      Dangerously underweight, Perfect gluten free and insomnia

      By SaiP · Posted

      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    • AndiOgris
      False blood test positive?

      By AndiOgris · Posted

      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG IGA 23.4 U/ml - normal range is below 7 U/ml). I was referred for a gastroscopy to confirm, which was scheduled for October 2024 (I use the UK health service, things move slowly!). The gastroscopy found no evidence of celiac disease.  My gastroenterologist has asked me to retake the blood test, and it just came back negative (TTG IGA 1.6 U/ml - normal range is below 7 U/ml). Given the long wait between my initial positive blood test and my gastroscopy, I reduced my gluten intake but never avoided it fully. In the 6 weeks before the gastroscopy and the second blood test, I made sure to eat at least two slices of bread a day as recommended, and often I had significantly more.  So what's going on? I understand that false positives are very rare for celiac blood tests, and usually associated with other serious diseases which I am fairly sure I don't have (my health is generally very good). After the negative biopsy, I thought that (i) either they did not take enough samples, or (ii) I have "potential celiac disease". But now that the second blood test has come back negative, I'm running out of plausible explanations...  Can anyone make sense of this? I have not spoken to my gastroenterologist yet - I wanted to get a better sense of where I am beforehand so that I can ask the right questions. Under the UK system, specialist doctors can be very hard to get hold of, so I need to make the most of my time with him! Thanks!        
×
×
  • Create New...