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

Nih Conference Live Online For 3 Days!


angel-jd1

Recommended Posts

angel-jd1 Community Regular

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

speakers

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 :

Open Original Shared Link

This link also give the NLM bibliography on celiac disease which contains hundreds

of articles and is 207 pages!

Open Original Shared Link

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

disease?

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

disease

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

questions

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

Professor

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.

Professor

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

Disease?

2:30 p.m. Clinical Presentation of Celiac Disease in the Pediatric

Population

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

Finland

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

Open Original Shared Link is where you can find the live video

feeds


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



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular

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!

-Jessica

j9n Contributor

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.

angel-jd1 Community Regular

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.

Open Original Shared Link

-Jessica :rolleyes:

lovegrov Collaborator

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.

richard

Donna F Enthusiast

And this today on Cnn.com:

Open Original Shared Link

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

-donna

angel-jd1 Community Regular

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:


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,182
    • Most Online (within 30 mins)
      7,748

    Portia
    Newest Member
    Portia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, 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 from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...