Writing about food allergies from a pediatric allergist's perspective

National Foundation for Celiac Awareness (NFCA)

AllergyHome is proud to present the National Foundation for Celiac Awareness (NFCA). This non-profit organization is dedicated to raising awareness of celiac disease and gluten sensitivity (collectively referred to as gluten-related disorders), increasing diagnoses, advancing research and improving the quality of life for those on a life-long gluten-free diet.  We look forward to collaborating with NFCA to provide support to those in our communities.

National Foundation for Celiac Awareness

Who is the National Foundation for Celiac Awareness (NFCA)?

As someone affected by food allergies, you’ve probably come across celiac disease, non-celiac gluten sensitivity (‘gluten sensitivity’) and the gluten-free diet in your online research.  While celiac disease is an autoimmune disease and very different from a food allergy or intolerance, they often go hand-in-hand.

The National Foundation for Celiac Awareness (NFCA) is a non-profit organization dedicated to raising awareness of celiac disease and gluten sensitivity (collectively referred to as gluten-related disorders), increasing diagnoses, advancing research and improving the quality of life for those on a life-long gluten-free diet. 

About Celiac Disease and Gluten Sensitivity

Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten.  An estimated 3 million Americans have celiac disease.

Limited research suggests that up to another 18 million Americans may live with non-celiac gluten sensitivity (‘gluten sensitivity’). While gluten sensitivity produces similar symptoms, it does not result in the same intestinal damage celiac disease causes. Despite this, people with gluten sensitivity rely on the gluten-free diet to relieve their symptoms.


How did the National Foundation for Celiac Awareness (NFCA) begin?

The organization was founded in 2003 by NFCA President and CEO Alice Bast as a result of her own devastating personal experience with undiagnosed celiac disease.  During her second pregnancy, severe fatigue set in along with migraines, chronic diarrhea, weakness and joint pain.  Two weeks before her due date, Alice lost her child.  She suffered through more miscarriages and wilted to a mere 100 pounds at 5’9.”  The 22 doctors she visited could not make a diagnosis and continued to tell her she “looked fine.”

Once Alice visited her 23rd doctor and received her diagnosis of celiac disease, she enthusiastically embraced the gluten-free diet.  Instead of stopping her quest for answers, though, Alice began to pour over scientific research, trying to determine if her reproductive struggles were caused by her undiagnosed celiac disease.  All of the evidence supported her theory.

Determined to help others needlessly suffering, Alice founded NFCA in 2003.  It was the first celiac disease non-profit focused on raising awareness and getting people diagnosed and receiving their life-saving prescription of a gluten-free diet.

We have made great strides

11 years later, NFCA is still working to raise awareness and get people the help they need to live their lives to the fullest, despite having a gluten-related disorder.  When NFCA first opened its doors, 97% of the 3 million Americans living with celiac disease remained undiagnosed or misdiagnosed.  Today, 83% are waiting for their diagnosis – a 17% drop in the undiagnosed rate.

National Foundation for Celiac AwarenesNFCA is continuing to increase diagnoses through its Family Talk efforts, a campaign that helps at-risk family members of people living with celiac disease get tested.  The organization also focuses on increasing the affordability and accessibility of gluten-free foods by partnering with national companies like Walmart and Whole Foods Market.  Its online gluten-free training programs, GREAT Kitchens and GREAT Schools, Colleges and Camps, work to train various food service professionals the ins and outs of safe gluten-free food preparation.

If you think you or your child could have celiac disease, NFCA encourages you to take the Celiac Disease Symptoms Checklist and talk to your doctor about getting tested.  To see what’s happening for Celiac Awareness Month, visit www.CeliacCentral.org/AwarenessMonth

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