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Nih Conference Live Online For 3 Days!

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    Gluten Free Goddess

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Posted 28 June 2004 - 08:25 AM

NIH Conference on Celiac Disease in Bethesda, MD - begins TODAY!
You can watch via webcast!

Watch on-line or attend in person the NIH Celiac Consensus Conference
sponsored by the NIH on June 28-30 at the Natcher Conference Center in
Bethesda, MD. Details on how to watch on-line at the NIH videocast
website and the program are listed below. Experts in celiac disease including
Cynthia Kupper, RD, Shelley Case, RD and 18 MD's from the US, Canada
and Europe will be presenting at this historic conference. The
summmaries will be available at the NIH web site after the conference
and a special supplement in the J of Gastroenterology with in-depth
articles from each speaker will be published in the fall. Here is the
link for more information :

This link also give the NLM bibliography on celiac disease which contains hundreds
of articles and is 207 pages!

The conference will address the following key questions:

1. How is celiac disease diagnosed?
2. How prevalent is celiac disease?
3. What are the manifestations and long-term consequences of celiac
4. Who should be tested for celiac disease?
5. What is the management of celiac disease?
6. What are the recommendations for future research on celiac
and related conditions?

During the first day and part of the second day of the conference,
experts will present the latest research findings in celiac disease to
the independent consensus panel. After weighing all of the scientific
evidence, the panel will prepare its statement addressing the
listed above. The panel will present its draft statement to the public
for comment at 9:00 a.m. on Wednesday, June 30. Following this public
comment session, and a subsequent executive session to weigh the input
provided, the panel will hold a news conference at 2:00 p.m. to take
questions from the media.

Preliminary Agenda for the Celiac Consensus Conference happening NOW
in Bethesda, Maryland. You can view it live via webcast. See below
for details on how to do so:

Monday, June 28, 2004
8:30 a.m. Opening Remarks
Allen M. Spiegel, M.D. Director
National Institute of Diabetes and Digestive and Kidney Diseases
National Institutes of Health
8:40 a.m. Charge to the Panel
Susan Rossi, Ph.D., M.P.H.
Deputy Director
Office of Medical Applications of Research, Office of the Director
National Institutes of Health
8:50 a.m. Conference Overview and Panel Activities
Charles Elson, M.D.
Panel and Conference Chairperson
Professor of Medicine and Microbiology
Vice Chair for Research, Department of Medicine
University of Alabama at Birmingham
I. How Is Celiac Disease Diagnosed?
9 a.m. Overview and Pathogenesis of Celiac Disease
Martin F. Kagnoff, M.D. Professor of Medicine
Cancer Biology Program
University of California at San Diego
9:20 a.m. The Pathology of Celiac Disease
Paul J. Ciclitira
The Rayne Institute
St. Thomas' Hospital
United Kingdom
9:40 a.m. What Are the Sensitivity and Specificity of
Serological Tests for Celiac Disease? Do Sensitivity and Specificity
Vary in Different Populations?
Ivor Hill, M.D.
Professor of Pediatrics
Wake Forest University School of Medicine
10 a.m. Discussion
10:30 a.m. Clinical Algorithm in Celiac Disease
Ciaran P. Kelly, M.D.
Herrman L. Blumgart Firm Chief
Director, Gastroenterology Fellowship Training
Associate Professor Medicine
Beth Israel Deaconess Medical Center
Harvard Medical School
10:50 a.m. Genetic Testing: Who Should Do the Testing and What
Is the Role of Genetic Testing in the Setting of Celiac Disease?
George Eisenbarth, M.D
Executive Director
Barbara Davis Center for Childhood Diabetes
University of Colorado Health Sciences Center
11:10 a.m. Evidence-Based Practice Center Presentation: Summary
of the Evidence
EPC Speaker TBA
University of Ottawa
11: 30 a.m. Discussion
12 p.m. Lunch
II. How Prevalent Is Celiac Disease?
1 p.m. Epidemiology of Celiac Disease: What Are the Prevalence,
Incidence, and Progression of Celiac Disease?
Marian J. Rewers, M.D., Ph.D.
Clinical Director
Barbara Davis Center for Childhood Diabetes
University of Colorado Health Sciences Center

1:20 p.m. What Are the Prevalence and Incidence of Celiac Disease in
High-Risk Populations: Patients With an Affected Member, Type 1
Diabetes, Iron Deficiency Anemia, and Osteoporosis?
Joseph A. Murray, M.D.
Professor of Medicine
Mayo Clinic
1:40 p.m. Evidence-Based Practice Center Presentation
EPC Speaker TBA
University of Ottawa
2 p.m. Discussion
III. What Are the Manifestations and Long-Term Consequences of Celiac

2:30 p.m. Clinical Presentation of Celiac Disease in the Pediatric
Alessio Fasano, M.D.
Professor of Pediatrics, Medicine, and Physiology
Director, Mucosal Biology Research Center
Center for Celiac Research
University of Maryland School of Medicine
2:50 p.m. The Many Faces of Celiac Disease: Clinical Presentation of
Celiac Disease in the Adult Population
Peter Green, M.D.
Clinical Professor of Medicine
Division of Digestive and Liver Disease
Columbia University
3:10 p.m. Association of Celiac Disease and Gastrointestinal
Lymphomas and Other Cancers
Carlo Catassi, M.D., M.P.H.
Co-Medical Director
Division of Pediatric Gastroenterology and Nutrition
Center for Celiac Research
University of Maryland School of Medicine
3:30 p.m. Skin Manifestations of Celiac Disease
John Zone
Chairman and Professor of Dermatology
University of Utah Health Sciences Center

3:50 p.m. Neurological/Psychological Presentation of Celiac Disease:
Ataxia, Depression, Neuropathy, Seizures, and Autism
Khalafalla Bushara, M.D. Department of Neurology
University of Minnesota
4:10 p.m. Discussion
5 p.m. Adjournment
Tuesday, June 29, 2004

IV. Who Should Be Tested for Celiac Disease?
8:30 a.m. Should Children Be Screened for Celiac Disease? Is There
Evidence To Support the Strategy of Screening All Children?
Edward Hoffenberg, M.D.
Associate Professor of Pediatrics
Director, Center for Pediatric Inflammatory Bowel Disease
Children's Hospital Denver
University of Colorado School of Medicine
8:50 a.m. Should Adults Be Screened for Celiac Disease?
What Are the Benefits and Harms of Screening?
Pekka Collin, M.D., Ph.D.
Medical School
University of Tampere
9:10 a.m. Evidence-Based Practice Center Presentation
Speaker TBA
University of Ottawa
9:30 a.m. Discussion
V. What Is the Management of Celiac Disease?

10 a.m. Dietary Guidelines for Celiac Disease and Implementation
Cynthia Kupper, R.D., C.D.
Executive Director
Gluten Intolerance Group
10:20 a.m. How To Educate Patients Effectively and Provide Resources:
Gluten-Free Diets
Shelley Case, R.D.
Case Nutrition Consulting
10:40 a.m. The Followup of Patients With Celiac Disease-Achieving
Compliance With Treatment
Michelle Pietzak, M.D.
Assistant Professor of Pediatrics
University of Southern California Keck School of Medicine
11 a.m. Discussion
11:30 a.m. Adjournment
Wednesday, June 30, 2004
9 a.m. Presentation of the Consensus Statement
9:30 a.m. Public Discussion
11 a.m. Panel Meets in Executive Session
2 p.m. Press Conference
3 p.m. Adjournment
Rev. 3/12/04

http://videocast.nih.gov/default.asp is where you can find the live video
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Posted 28 June 2004 - 12:59 PM

During the NIH Conference question session, one gentelman asked about eczema and celiac disease. The panel of experts said that about 5% of patients who have eczema, dermatitis, atopic dermatitis have those conditions linked to celiac disease, it is commonly thought that only dermatitis heptaformis is the only skin condition linked to celiac.

I personally was diagnosed with atopic dermatitis at age 3, and went undiagnosed for another 21 years!! <_<

They also talked about a study on smoking, they had 3 studies and 2 of the studies showed that smoking prevented celiac disease from rearing it's ugly head. Interesting!

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Posted 28 June 2004 - 04:17 PM

That is interesting since I quit smoking about 3 years ago and I have been gradually getting sicker for the last year and a half. I tell you though, I would much rather have Celiac than die from cancer or empysema like my father and in-laws did.
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Posted 30 June 2004 - 08:22 PM

I just thought I would share this link with you so that you can read
the NIH consensus development Conference statement. It is basically a
conclusion and statement from the last three days of the conference.
It talks about things that need to be changed, research etc. It is
worth the read. It is 21 pages long.

You need adobe acrobat to read this link.

-Jessica :rolleyes:
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Posted 01 July 2004 - 06:18 AM

Everybody should read this stuff. The NIH conference could be the biggest and best thing for us ever. Many, many more medical people will learn more about celiac disease because of this. And if more people are diagnosed as a result, then the commercial world will pay more attention to our needs.

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Donna F

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Posted 01 July 2004 - 12:36 PM

And this today on Cnn.com:


...it's so good to see the word getting out. Thanks for the links!

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Posted 01 July 2004 - 06:51 PM

You can also check the front page of Celiac.com and scroll down to the bottom of the page to see severeal news stories that have come about today because of the NIH conference. Over 200 newspapers across the US carried stories about celiac today. THANK YOU NIH for creating awareness!!!

-Jessica :rolleyes:
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