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Nih Launches Celiac Disease Awareness Campaign


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9 replies to this topic

#1 TCA

 
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Posted 18 July 2006 - 01:39 PM

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...ease118html.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.
  • 0
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

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#2 olalisa

 
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Posted 18 July 2006 - 04:56 PM

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!
  • 0
dx by blood test and biopsy April 2006.
gluten free since, and avoiding dairy.

#3 marciab

 
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Posted 18 July 2006 - 05:27 PM

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:
  • 0
Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

#4 TCA

 
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Posted 18 July 2006 - 06:44 PM

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!!!!!
  • 0
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#5 queenofhearts

 
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Posted 19 July 2006 - 04:25 AM

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
  • 0
The Queen of Hearts,
She made some tarts
All on a summer's day.
The Knave of Hearts,
He stole the tarts
And took them clean away.

Diagnosed at age 49 by biopsy 31 May 2006

Learning how to bake those tarts gluten-free!

#6 jenvan

 
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    Lynne took this picture! :)

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Posted 19 July 2006 - 05:31 AM

I read the article this morning...could be really great. I hope the program impacts awareness as much is hoped !
  • 0
~~~~~~~
Jen
Indianapolis, IN

gluten-free since Feb 2005
dairy-free

#7 lindalee

 
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Posted 19 July 2006 - 07:40 AM

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
  • 0
Lee

#8 marycubs

 
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Posted 19 July 2006 - 08:39 AM

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
  • 0

#9 Judyin Philly

 
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Posted 30 July 2006 - 01:33 AM

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
  • 0
Judy in Southern CA

#10 ravenwoodglass

 
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Posted 30 July 2006 - 09:04 AM

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).
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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