Marilyn’s Message May 2014

May is Celiac Disease Awareness Month.  It is the month where we make an extra effort to let those outside our community know the statistics:  1 in 100 people worldwide have celiac disease; only 17% of people with celiac disease are diagnosed in the United States; 6-10 years is the average time to diagnosis in which sufferers experience a significantly reduced quality of life at great economic cost; people with celiac disease have a 4-fold increased risk of lymphoma and a 2-fold increased risk of coronary heart disease in addition to many other serious health complications; many doctors don’t know how to screen for celiac disease; and according to a Columbia Celiac Disease Center study, many gastroenterologists don’t know how to perform a proper biopsy to diagnose celiac disease.

We at CDF have committed to changing the diagnosis rate to assure that people are properly screened, diagnosed and treated in a timely manner, to raising funds for advocacy and education programs and to advancing research to determine the best way to screen, diagnose, treat and one day cure celiac disease. And the reality is that awareness is not enough.  It takes resources.  Labor and capital.  This past month a for-profit, gluten-free magazine project was able to raise more than $90,000 on Kickstarter for its launch.  Many of its supporters were members of our celiac community.  Certainly a gluten-free magazine can be a beacon of awareness for the medically-required dietary needs of our community as demonstrated by those already in this space.  But shouldn’t our community be directing its fundraising efforts to celiac disease advocacy, education and research programs? On a daily basis CDF is asked by the nation’s celiac disease centers for financial support for research.  Our nearly two million website visitors ask for information, support and representation at the federal and state levels in diagnosing and treating their disease.  And the medical and manufacturing communities ask for education programs, and patient and consumer resources.  Our celiac community needs to take charge of this disease, not just with glossy pictures of food, but by standing up for our right to be diagnosed, treated and cured so that our future generations need not suffer.

In honor of Celiac Disease Awareness Month, CDF launches the Team Gluten-Free Week Without Wheat (Barley and Rye) Challenge to raise both awareness and funds in the fight against celiac disease.  Participants commit to eating gluten-free for at least 7 days in the month of May in support of those with celiac disease or gluten sensitivity.  Participants already eating gluten-free pledge on behalf of a family member, other loved one, even their pet. Funds raised support CDF programs of advocacy, education and advancing research so that the diagnosis rate can be dramatically increased, and so that there will one day be a cure.

This month CDF also introduces the 7 Day Gluten-Free Meal Plan, to ease the transition to a gluten-free diet for newly diagnosed individuals and families. The third tool in CDF’s online toolkit, which includes a symptoms checklist and healthcare practitioner directory, the gluten-free meal plan provides a nutritionally balanced, clear and concise 7 day menu of three meals and two snacks per day with easy to make recipes and “Quick-Fix” options, developed in collaboration with CDF Medical Advisory Board member, Alicia Calvo, MPH, RD, CDE.  Team Gluten-Free participants are encouraged to share their successes and struggles with the Meal Plan as they and their loved ones take on the challenge of the gluten-free diet.

Thank you for your continued generous support of CDF.  Your gifts of money and labor empower all that we do.  We have a long way to go to stop the unnecessary suffering caused by celiac disease.  With your help, we will get there. Please share with me your thoughts on the subject of fundraising, and what you are doing to change the face of celiac disease.  Email me at marilyn.geller@celiac.org or tweet me @ceoatcdf.

I look forward to seeing you at the CDF National Conference & Gluten-Free Expo on June 7 and 8 at the Pasadena Convention Center.

To Your Health,

Marilyn G. Geller, Chief Executive Officer