Jump to content

  • 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

Cnn Special On Celiac Tomorrow ?

Judyin Philly

By Judyin Philly
in Publications & Publicity

Recommended Posts

Guest nini
Guest nini
Posted
Guys - I missed it - who was the celeberity with celiac?
The Anchorwoman doing the segment, Heidi Collins
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 114
  • Created
  • Last Reply
jerseyangel Proficient
jerseyangel
Posted
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

HawkFire Explorer
HawkFire
Posted

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.

Lisa Mentor
Lisa
Posted

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)

2Boys4Me Enthusiast
2Boys4Me
Posted

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.

marciab Enthusiast
marciab
Posted

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.

TriticusToxicum Explorer
TriticusToxicum
Posted
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. :)

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

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:

Open Original Shared Link

HawkFire Explorer
HawkFire
Posted

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.

floridanative Community Regular
floridanative
Posted

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!

HawkFire Explorer
HawkFire
Posted

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.

floridanative Community Regular
floridanative
Posted

The CNN video clip from today can be seen on www.celiaccentral.org.

jerseyangel Proficient
jerseyangel
Posted

I just sent Heidi an email. :)

Lisa Mentor
Lisa
Posted
I just sent Heidi an email. :)

Nice pic patti :)

TriticusToxicum Explorer
TriticusToxicum
Posted
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.

jerseyangel Proficient
jerseyangel
Posted
Nice pic patti :)

Thanks, Lisa B)

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

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

happygirl Collaborator
happygirl
Posted

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.

Judyin Philly Enthusiast
Judyin Philly
Posted
  • Author

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

HawkFire Explorer
HawkFire
Posted

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.

2Boys4Me Enthusiast
2Boys4Me
Posted

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?

HawkFire Explorer
HawkFire
Posted
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.

2Boys4Me Enthusiast
2Boys4Me
Posted

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

Creative-Soul Newbie
Creative-Soul
Posted

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...

par18 Apprentice
par18
Posted
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

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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    3. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    4. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    5. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748
    Erica Johnson
    Newest Member
    Erica Johnson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.