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1/16/08
Please take time to watch this video on YouTube. It lasts around 86 minutes. It’s a very informative talk about celiac disease entitled, ”What You Need to Know about Celiac Disease and the Gluten-Free Diet.” It was posted December 20, 2007 so occasionally they mention that something is going to happen “next year” ...specifically announcements by the FDA about labeling gluten free. That will happen in August of this year. Come hear Andrea Levario of the American Celiac Disease Alliance speak about this at the June 6-7 Conference here in our area.
It’s presented by the WilliamK.WarrenMedicalResearchCenter for Celiac Disease at the University of California,San Diego http://celiaccenter.ucsd.edu. Featured speakers are Dr. Martin F. Kagnoff, Director of the Wm. K. Warren Medical ResearchCenter for Celiac Disease, Professor of Medicine & Pediatrics, UCSD School of Medicine, Dr. Gregory Harmon, UCSDCenter for Celiac Disease Gastroenterologist and Dr. Susan Algert, PhD, Registered Dietician, ResearchCenter for Celiac Disease, UCSD Department of Medicine. It’s 86 minutes of your time very well spent. Dr. Algert references the Gluten Intolerance Group’s program ”Gluten Free Certification Organization GFCO” in her talk when she speaks about testing companies for gluten in their products. Very nice reference to our home organization! She also mentions Shelley Case’s book as a wonderful reference book for your gluten free reference library. Shelley will be a speaker at the conference also and we do sell this book at our meetings.
http://www.youtube.com/watch?v=QR2LvQmoF1Y&NR=1
03/16/07
Check out this segment of the View
Celiac Disease On The View!
12/11/06
For anyone who missed the segment on Celiac Disease featuring The Murphy Family & the Celiac Disease Center at Columbia University, the story and the video are both available at the link below.
http://abclocal.go.com/wabc/story?section=health&id=4831930
Samantha Hoyt
Development Coordinator
Celiac DiseaseCenter at ColumbiaUniversity
180 Fort Washington Avenue
11/14/06
SPECIAL ANNOUNCEMENT
CNN Newsroom Anchor Heidi Collins the morning of 11/13/06 interviewed Dr. Peter Green from Columbia University's Celiac Disease Center. To view the video, click here.
6/28/06
This is a special program about celiac disease that was on TV recently in the Philadelphia area. It is very well done. It is good information for everyone to know about.
View WLVT's Tempo segment about celiac disease featuring a Philadelphia Area family, Alice Bast and Bliss Restaurant. Best viewed with a high speed connection.
Monday August 18,2003 the broadcast of the Today Show included a segment devoted to celiac disease. If you were unable to watch it live, clink the appropriate link to view the segmet. This is an excellent example of increasing awareness of the prevalence of celiac disease and another opportunity to spread the word about the work of CSA/USA, Inc.
(It may be necessary to download Real Player to view the TV clip.) Files may take several minutes to download depending on the speed of your modem or connection.
High Speed Cable/DSL Modem Low Speed 56K Modem
Celiac Sprue Association/USA, Inc.
877-CSA-4CSA, toll-free in the USA
402-558-0600
Celiacs Helping Celiacs
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Andrea S. Levario
Co-Chair, Legislative Project
American Celiac Task Force
email: actf@fogworks.net
This is the transcript from the Keith Olbermann Show Tuesday, August 17, 2004 on MSNBC regarding Celiac Disease and communion:
"Up next, the communion controversy. The Vatican will have to decide if an eight-year-old girl's first holy communion was or was not valid. All because she had a wheat free wafer.
OLBERMANN: You don't have to be religious to be startled by this. The Vatican will apparently have the final say on whether or not an eight-year old girl from New Jersey actually received her first holy communion three months ago.
The local diocese has ruled the communion invalid because the wafers used were gluten free. They were not made of wheat, because the girl is severely allergic to wheat. The spirit of Christ is supposed to enter the wafer just before its consumption. And nobody's explained why it couldn't enter a rice wafer as easily as a wheat wafer, but that doesn't seem to bother anybody.
Our number two story in the COUNTDOWN, should a church put a parent in a position to have to deliberately sicken a child as part of a religious ritual.
I'm joined now by Haley Waldman and by her mother, Elizabeth Pelly-Waldman. We thank you both for coming in.
ELIZABETH PELLY-WALDMAN, DAUGHTER'S COMMUNION DOESN'T COUNT: Thank you.
OLBERMANN: Elizabeth, you and your daughter have Celiac Disease. I know that all too well. That's―I have that, too. My executive producer's daughter has it probably as bad as you can have it. But can you explain to our viewer just how serious the problem is?
PELLY-WALDMAN: Sure, Celiac is very serious and has to be taken seriously. Because the body's immune system attacks the lining of the small intestines. In response to the gluten, a person with Celiac becomes malnourished.
Haley, for example, suffers from osteopeni, a bone loss, because her damaged intestines do not absorb calcium properly.
If a person with Celiac does not adhere to the diet, they increase the risk of developing cancer.
OLBERMANN: So this worked out that a sympathetic priest gave Haley her first communion. And instead of a wheat wafer, it was a rice wafer. And this is big enough of a controversy that somebody at the Vatican has to OK this? How did it get to this point?
PELLY-WALDMAN: Yes, it is. Church doctrine states that in keeping with the traditions of the last supper, the host must contain some wheat, some gluten to be the valid body of Christ. So the question I pose to Cardinal Ratsing (ph) or to the Vatican is how does the consumption of a rice-based host versus a wheat-based toast corrupt those traditions? Does the divinity of the Eucharist lay in wheat?
OLBERMANN: And did you get an answer? Or are you anticipating one?
PELLY-WALDMAN: Not yet. I am anticipating one. I was told that the Vatican will be responding to my plight.
OLBERMANN: Haley, tell me if you can, how careful do you have to be when you're eating?
HALEY WALDMAN, CHURCH SAYS HER COMMUNION DOESN'T COUNT: I have to be very careful when I'm eating.
OLBERMANN: You have to look at the labels on everything. You have to check everything before you read it, to make sure―even if it's like chewing gum or something like that?
WALDMAN: Yes.
OLBERMANN: Goodness. Haley, what do you hope happens about the communion wafer?
WALDMAN: I hope that they change their mind and say I can have the communion again.
OLBERMANN: It's very important to you, isn't it?
WALDMAN: Yes.
OLBERMANN: Well, Elizabeth, I guess it's very important to you, too.
The bottom line here, for somebody with Celiac, even the slightest amount of wheat can be like poison as you mentioned, all the things that can go wrong, internal bleeding, bone density loss, organ disorders, malnutrition, digestive problems of every kind.
And maybe the most―the one that we would just sort of dismiss, but maybe it's the most important on a regular basis. It can make your stomach feel like it's exploding. Does somebody do you think in the church somehow think that God wants anybody to suffer that way if they don't have to? Or to you, is this a question of somebody being underinformed?
PELLY-WALDMAN: Absolutely not. In no way shape or form do I think the church understands the capacity of Celiac to harm someone. I do not suggest that they would offer her this host as a viable option that they knew what it could do to her.
OLBERMANN: So where is it right now? What do you expect to have happen? And what kind of support have you gotten?
PELLY-WALDMAN: Well, I believe that this a cannonball, a man made ball. And I do not believe Christ would want my child to obey a canon law that could be potentially harmful to her.
I believe the church can grow and change to meet the needs of the people. And as I've increased awareness of our plight, I've really shown the Catholic church is an overwhelming response of support and an outpouring of compassion for Haley and for all Celiacs.
OLBERMANN: Where are we in terms of numbers? In terms of Celiac? It's probably something nobody in the audience has ever heard of before, isn't it?
PELLY-WALDMAN: Right. But the most recent study out of the University of Pennsylvania Center for Celiac Research is suggesting now that 1 in 133 people actually have Celiac.
OLBERMANN: What sort of percentage of that? Nationwide, is it two or three percent?
PELLY-WALDMAN: Yes, yes.
OLBERMANN: Goodness.
Elizabeth Pelly-Waldman, and her daughter Haley, some of the stories that we do have gray areas in them but as someone who knows a little bit about Celiac disease, you guys are right. They're wrong. And I hope they figure it out fast. All the best. Thanks for coming on the show.
PELLY-WALDMAN: Thank you, Keith.
OLBERMANN: Thanks."
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