Nih Launches Celiac Disease Awareness Campaign

[TCA]

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

Open Original Shared Link.

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.

[olalisa]

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!

[marciab]

That's great news. 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

[TCA]

That's great news. 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

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

[queenofhearts]

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:

Open Original Shared Link

Leah

[jenvan]

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

[lindalee]

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

[marycubs]

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

[Judyin Philly]

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

[ravenwoodglass]

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).