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Nih Conference Live Online For 3 Days!
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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 :

http://consensus.nih.gov/cons/118/celiacbackground.html

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

of articles and is 207 pages!

http://www.nlm.nih.gov/pubs/cbm/celiacdisease.html

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

http://videocast.nih.gov/default.asp is where you can find the live video

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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

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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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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.

http://consensus.nih.gov/cons/118/118celiacPDF.pdf

-Jessica :rolleyes:

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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

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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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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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