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Nih Launches Celiac Disease Awareness Campaign
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The National Institutes of Health (NIH) today announced the launch of a

campaign to heighten awareness of celiac disease, an autoimmune

disorder that

interferes with the absorption of nutrients from food. The campaign

stems from

consensus recommendations of an independent panel of experts convened

by the

NIH to assess current diagnosis, treatment, and management of the

disease.

“We now know that celiac disease is more prevalent that previously

thought —

affecting nearly 1 percent of the U.S. population — and remains under-

diagnosed,” said Griffin P. Rodgers, M.D., acting director of the

National

Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the

NIH

institute leading the effort. “Through the campaign, we hope to

increase

physician awareness of the disease, resulting in earlier diagnosis and

better

outcomes for celiac patients.”

Developed by the NIDDK, with coordination among the professional and

voluntary

organizations working on celiac disease, the campaign offers materials

and

resources for health professionals and the public about the symptoms,

diagnosis, treatment, and management of celiac disease. The campaign

offers

fact sheets, booklets, practice tools for health professionals, NIH

research

information, and resources from professional and voluntary

organizations that

focus on celiac disease.

Celiac disease is an autoimmune response to gluten, a protein found in

wheat,

rye, and barley. Symptoms of celiac disease range from gas, diarrhea,

and

abdominal pain, to delayed growth, certain skin rashes, infertility,

and

osteoporosis. Treatment for celiac disease is adherence to a

gluten-free diet.

“One of the challenges with celiac disease is the vast array of

symptoms

associated with the disease,” said Stephen P. James, M.D., director of

the

Division of Digestive Diseases and Nutrition (DDN) at the NIDDK. “We

are

hoping to educate health professionals and the public that celiac

disease is

not only a gastrointestinal disease.”

For more information about the campaign or to download any of the

campaign

materials, visit www.celiac.nih.gov. For more information about the

consensus

development panel’s recommendations, visit

http://consensus.nih.gov/2004/2004CeliacDisease118html.htm.

The NIDDK, part of the National Institutes of Health (NIH), conducts

and

supports research on diabetes; endocrine and metabolic diseases;

digestive

diseases, nutrition, and obesity; and kidney, urologic and hematologic

diseases. Spanning the full spectrum of medicine and afflicting people

of all

ages and ethnic groups, these diseases encompass some of the most

common,

severe, and disabling conditions affecting Americans.

The National Institutes of Health (NIH) — The Nation's Medical Research

Agency — includes 27 Institutes and Centers and is a component of the

U.S.

Department of Health and Human Services. It is the primary federal

agency for

conducting and supporting basic, clinical and translational medical

research,

and it investigates the causes, treatments, and cures for both common

and rare

diseases. For more information about NIH and its programs, visit

www.nih.gov.

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I am SOOO excited about this. I'm printing it and taking it to my GP at my next visit. It took years and years to diagnose me (I'm 44) and when he finally ordered a blood test, which came out positive, followed by a positive biopsy, he said, "Well, after I checked everything else I decided to look for really rare stuff." Oy! I'm so glad that the NIH is addressing this. Maybe the Dr's will actually take notice!

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That's great news. :D Can you tell me where they announced this at ? Was this on the news ? Did you notice that celiac . com is not one of the websites listed ? Bummer :ph34r:

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That's great news. :D Can you tell me where they announced this at ? Was this on the news ? Did you notice that celiac . com is not one of the websites listed ? Bummer :ph34r:

We have a local GIG group and it came through the listserve. No sources were listed. I was just excited to read it!!!!!

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I got the news this morning-- what a fantastic thing this will be for all the hidden Celiacs, AND for us because it should influence manufacturers & retailers as well. Here's the site:

http://www.celiac.nih.gov/

Leah

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I read the article this morning...could be really great. I hope the program impacts awareness as much is hoped !

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I read the article this morning...could be really great. I hope the program impacts awareness as much is hoped !

Fantastic! Thinking about all the people like me who thought you outgrew this disease!!!! I hope they cover what happens when you don't adhere to the diet!!!!! Maybe the doctors will get on the ball! LL

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The website (www.celiac.nih.gov) has some educational materials for patients - I'm going to order one batch (25 for $5) and send them to some local physicians/GIs - including the ones who did not diagnose me correctly for 3 years.

I'll have a cover memo asking that they review the material, as like many people, I have celiac disease and was not diagnosed quickly - I know they get lots of reading material all the time - but maybe a few will read it ?? I guess its worth a try. Maybe I'll send it in to our local news paper and tv news - they have a health news segment and could include it.

Mary

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The website (www.celiac.nih.gov) has some educational materials for patients - I'm going to order one batch (25 for $5) and send them to some local physicians/GIs - including the ones who did not diagnose me correctly for 3 years.

I'll have a cover memo asking that they review the material, as like many people, I have celiac disease and was not diagnosed quickly - I know they get lots of reading material all the time - but maybe a few will read it ?? I guess its worth a try. Maybe I'll send it in to our local news paper and tv news - they have a health news segment and could include it.

Mary

Mary this is a great idea

An I missing something or is the date on this report June 28-30 2004?

Do they have a feature topic each year? Just wondering why if the conf was in 2004 we are just hearing about it..Maybe it's late and I'm fogged.

Judy in Philly

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Mary this is a great idea

An I missing something or is the date on this report June 28-30 2004?

Do they have a feature topic each year? Just wondering why if the conf was in 2004 we are just hearing about it..Maybe it's late and I'm fogged.

Judy in Philly

I believe that date is correct. I remember when it came out. I keep hoping to see the NIH do some public service anouncements and TV ads but still just lots of ads for celiac related drugs instead (not by them of course).

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    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
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