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Cbs News Story


floridanative

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beaglemania Rookie

I am sooo happy about that Celiac Disease news piece!! I sent an email to CBS thanking them for showing the piece and educating the public about celiac disease!!!


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  • Replies 97
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GFBetsy Rookie
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.

There's a gluten free store in Taylorsville, UT. It's called Against the Grain, and they only carry gluten-free stuff. The owner's not making a ton of money for herself, but she is able to pay her rent and keeps up the store so that when others are diagnosed they've got a resource to help them out as they start the diet. It's great!

Turtle Enthusiast

I sent CBS a thank you e-mail!!

AndreaB Contributor

Ok, stupid question.

Where on the cbs site do you click to send an email. I didn't see anything offhand.

beaglemania Rookie

IT at the bottom of the page on a blue toolbar. click contact us and a little window will pop up where u can write a comment.

Turtle Enthusiast

I sent mine to evening@cbsnews.com

Hopefully this will get to the right person! I found it under the "contact us" section on their website!

Guest nini

is there anyone else running Firefox? I can't get RealPlayer10 to play the video, it doesn't recognize the format... aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaagggggggggggggggggggggghhhhhhhhhhhhhhhhhhh


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AndreaB Contributor

Nisla,

I couldn't get it to run from the links posted here. I went to www.cbsnews.com and scrolled down to find the Celiac video.

2Boys4Me Enthusiast

Okay, okay....I take back my comment about the gluten-free store being a set. I'll just say that I've never seen one in real life. B)

Matilda Enthusiast

...

Guest nini
Nisla,

I couldn't get it to run from the links posted here. I went to www.cbsnews.com and scrolled down to find the Celiac video.

I tried that, I still couldn't get it to play. Couldn't get ANY of their videos to play. My OS plays videos from Google, YouTube and CNN with no problems...

happygirl Collaborator

LindaLee-

2nd Storehouse on Indian River Road. Take 64, get off at exit 286b (Indian River East) and turn R at the light (if you turn left you turn into the Founders Inn/Regent). It is before you hit the intersection at Centerville.

Jeff is the owner, and is a super nice guy. Its a small place, but he has lots of great stuff.

Have you tried organicdepot.com? That is a great place too---kind of a co-op for the area. Love it, too.

I love that Farm Fresh carries a bunch of stuff, too...the new one on Independence is wonderful, also.

I'll ask my mom where the gluten free place is in PA. They live outside of Harrisburg, in Mechanicsburg. I want to say the place is near Dillsburg, PA. There was an article in the Harrisburg newspaper about it, which is how she heard about it.

I'm actually in the process of moving, but I'll get the info and PM ya once I have settled....leaving Virginia Beach for Northern VA. Sad to leave the beach.......

Laura

beaglemania Rookie

Me and my dad just laughed when the little girl said yest, that a substitute could be found for everything she wanted in that store! I'm thinking, hmmm.... I could really go for a soft pretzel right now, wonder if they have some in there??

*yes* lol

LKelly8 Rookie
2nd Storehouse on Indian River Road. Take 64, get off at exit 286b (Indian River East) and turn R at the light (if you turn left you turn into the Founders Inn/Regent). It is before you hit the intersection at Centerville.

Jeff is the owner, and is a super nice guy. Its a small place, but he has lots of great stuff.

Have you tried organicdepot.com?

Ok. I need glasses. :blink: I missed the "de" in "organicdepot.com". I reread that first paragraph 3 times before I caught it.

:lol::lol::lol:

jaten Enthusiast
is there anyone else running Firefox? I can't get RealPlayer10 to play the video, it doesn't recognize the format... aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaagggggggggggggggggggggghhhhhhhhhhhhhhhhhhh

Yes, I run Firefox as my primary browser, but often I run into a glitch with videos, espectially from the msn site. IF your computer has a Windows OS, though you should have Internet Explorer even if you're not using it. (Look around, I bet it's there.) There's even a Firefox plugin that you can download that will allow you to right-click and choose (Open this window in IE) It's not necessary though. Just open the IE browser if you're running a Windows OS. I do have that plugin for just such instances...it's convenient. In fact, when I got ready to view this video, I didn't even try from Firefox. Rt-click, poof, I'm in IE; watch the video; close IE; poof I'm back in Firefox.

You can flip back and forth between browsers painlessly. I hope this helps you! The video is GREAT!

Gamecreature Rookie

There appears to be something wrong with the way the video is embedded in the page. I'm using Firefox and I can't view the video on the website.

HOWEVER

I used their link to send the video to me via email and the resulting link plays fine. Give this a try:

Open Original Shared Link

mommida Enthusiast

It was a great segment! I got teary eyed too. :blink:

We have two gluten free stores here in Mi., Celiac Specialties of Chesterfield and Bel Cibo, in Clawson. They also have eat in tables. Chef Andrew, Bel Cibo, will make you a hot fresh pizza and other entrees to go. :P:D

L.

Guest nini
Yes, I run Firefox as my primary browser, but often I run into a glitch with videos, espectially from the msn site. IF your computer has a Windows OS, though you should have Internet Explorer even if you're not using it. (Look around, I bet it's there.) There's even a Firefox plugin that you can download that will allow you to right-click and choose (Open this window in IE) It's not necessary though. Just open the IE browser if you're running a Windows OS. I do have that plugin for just such instances...it's convenient. In fact, when I got ready to view this video, I didn't even try from Firefox. Rt-click, poof, I'm in IE; watch the video; close IE; poof I'm back in Firefox.

You can flip back and forth between browsers painlessly. I hope this helps you! The video is GREAT!

I'm not using Windows, I'm using Linspire (Linux) OS...

There appears to be something wrong with the way the video is embedded in the page. I'm using Firefox and I can't view the video on the website.

HOWEVER

I used their link to send the video to me via email and the resulting link plays fine. Give this a try:

Open Original Shared Link

that didn't work either :(

lindalee Enthusiast
LindaLee-

2nd Storehouse on Indian River Road. Take 64, get off at exit 286b (Indian River East) and turn R at the light (if you turn left you turn into the Founders Inn/Regent). It is before you hit the intersection at Centerville.

Jeff is the owner, and is a super nice guy. Its a small place, but he has lots of great stuff.

Have you tried organicdepot.com? That is a great place too---kind of a co-op for the area. Love it, too.

I love that Farm Fresh carries a bunch of stuff, too...the new one on Independence is wonderful, also.

I'll ask my mom where the gluten free place is in PA. They live outside of Harrisburg, in Mechanicsburg. I want to say the place is near Dillsburg, PA. There was an article in the Harrisburg newspaper about it, which is how she heard about it.

I'm actually in the process of moving, but I'll get the info and PM ya once I have settled....leaving Virginia Beach for Northern VA. Sad to leave the beach.......

Laura

Thanks Laura, I'll check it out. Call me when you come back and we'll get together. Best Wishes on your move and new job.

mythreesuns Contributor

I was very impressed with the coverage, the whole story. However, my only fear is that all these people will push to get tested and only get the standard blood test and be told they DON'T have it (like I was) and then go on eating gluten.

I was hoping for some mention of the unreliability of the "standard" tests for gluten intolerance.

floridanative Community Regular

I e-mailed CBS as well....we all need to do so if we want to see a more comprehensive story on Celiac in the future. A CBS producer today could be working for NBC or ABC tomorrow. Producers get credit if a story gets a lot of feedback, especially if it's good.

Since Dr. Green was in the segment I figured his staff would know how it came about. One of his assistants told me via e-mail, that Dr. LaPook (sp?) works at Columbia too so he apparently knows Dr. Green. So kudos to both Dr. Green and Dr. LaPook for making this happen. I also sent Dr. Green a thank you e-mail to his staff anyway, who promised to pass it on. I said what we need now is Dr. Green and Danna Korn on Oprah...the doc can talk about the medical side of Celiac and Danna can show how the gluten free lifestyle can be tasty and fun as well, besides being healthy. Now if that ever happened, I'd probably faint so I'd have to be taping it - lol!

happygirl Collaborator

I just wrote them, thanking them for such a wonderful and accurate story.

jerseyangel Proficient

I emailed them the same night it aired.

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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