Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.