autoimmune research, patient stories

The Celiac Disease Foundation: Raising Awareness and Promoting Research

Elaine Monarch suffered from a mysterious illness for most of her adult life.  It was only in her 50s that she received an accurate diagnosis: celiac disease (CD). CD is an autoimmune disease that causes damage to the small intestine when a person eats gluten, a protein found in common grains like wheat. Ten years ago, the medical community thought that CD was a rare disorder that affected only 1 in every 10,000 people, primarily children who had digestive problems and failure to thrive. Now, it is thought that celiac disease currently affects at least 1 in 100 people worldwide (a four-fold rise in prevalence from the 1950s). Despite the rising incidence, only 1 in 6 people with the disease gets correctly diagnosed.

Celiac Disease Foundation - Faces of Celiac.jpg

Elaine knew that she wasn’t the only one who’d faced the challenges of undiagnosed CD. Even armed with her diagnosis, she couldn’t find a physician who took her seriously: the disease was not yet widely acknowledged as real. These frustrations led her to start the Celiac Disease Foundation (CDF) in 1990.

Since then, CDF has made substantial progress in raising awareness among the general public, the medical community, and the food industry.

  • CDF organized a march on the FDA, CDC, and NIH, in order to win recognition of celiac disease as a legitimate illness in need of funding and research. After fighting for ten years, CDF succeeded in pressuring the FDA to create rules for gluten-free labels on food.
  • A gluten-free diet used to mean forgoing common staples like bread, and driving long distances to over-pay at speciality and health food stores. The CDF worked with large food companies such as General Mills and Frito-Lay to initiate gluten-free versions of their popular items.

CDF is also heavily invested in education for both patients and doctors on both celiac disease and non-celiac gluten sensitivity. Their website offers an informational quiz used by 10,000 people each month. If a person’s symptoms resemble celiac disease, the website can help find a local practitioner who can conduct a formal screening and diagnosis, which may include blood work and an endoscopy.

Since many physicians and the general public remain unaware of celiac disease and non-celiac gluten sensitivity, CDF conducts physician grand rounds, sends speakers to conferences and delivers outreach to the public with a simple message: “Consider Celiac, Request The Test.”

To complement their educational work, CDF emphasizes advocacy and has a strong voice in influencing policy. They hope that an upcoming 2015 policy summit will lead to a nationwide platform for screening and diagnosis of CD in America. Marilyn Geller, CEO of the CDF, describes the crucial importance of diagnosis:

“A lot of physicians will hear patients describe celiac-like symptoms and tell them to go gluten free without giving a referral for a diagnosis. That’s a problem, since celiac disease is such a gateway disorder for other autoimmune problems. If you don’t have a firm diagnosis and the medical required need for the gluten-free diet, it’s too easy to cheat and do lasting damage to your digestive system. And with no diagnosis, there’s no follow-up. Nobody is checking to see how you’re doing on your diet, testing for your vitamin levels, bone density – all those things that need to happen.  The gluten free diet is not the panacea for everything that affects a person.”

As Marilyn mentioned, there is growing evidence that celiac disease does increase the likelihood of developing other autoimmune disorders. The CDF is working to promote awareness of celiac disease and non-celiac gluten sensitivity to help people get diagnosed and bring their disease under control. I wonder whether their efforts will help to slow the rising tide of autoimmunity as a whole.

For further information consult the following sources:

More details about the gluten-free diet, written by physicians:

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