Relatively Rare. Relatively Minor. Relatively Easy to Treat.
For more than 50 years, the celiac community has been led to believe that the above statements about the disease were true. We – those of us who live with the disease or who took care of someone with the disease – knew, however, that managing celiac disease is anything but rare, minor, and easy to treat. Well, it turns out we were right.
Thanks in part to your generous support, we have learned more about celiac disease in the last two years than we had learned in the previous half-century:
- Relatively Rare. Affecting 1% of the population, celiac disease is one of the world’s most prevalent genetic autoimmune conditions, yet the diagnosis rate remains shameful. It is estimated that only one in six Americans with celiac disease have been diagnosed. Additionally, the number of Americans with celiac disease is estimated to double every 15 years.
- Relatively Minor. Individuals with celiac disease suffer from a wide range of dreadful symptoms, including, but not limited to: failure to thrive in children, depression, brain fog, and an array of gastrointestinal issues. The long-term damage caused by celiac disease – especially when left untreated – is still largely unknown. We do know, however, that there are significant comorbidities with numerous other diseases, including: diabetes, cancer, osteoporosis, rheumatoid arthritis, and many more.
- Relatively Easy to Treat. Anyone who adheres to a strict gluten-free diet to treat their celiac disease or gluten sensitivity knows that it isn’t easy: reading labels in grocery stores, avoiding cross-contamination in the household, constantly negotiating for meals in restaurants or at friends’ houses is tiresome and burdensome. But that is not all. Gluten shows up in the most unsuspecting places: cosmetics, supplements, and candy, just to name a few. Accidental exposure to gluten is a constant fear, and with good reason; symptoms can persist for days after exposure, leading to missed work and school days. Furthermore, the latest research indicates that refractory celiac disease (disease that does not respond to the gluten-free diet), is much more widespread than previously thought or post-diagnosis serology indicates.
Here at CDF, we are working with medical researchers, healthcare providers, food companies, state Attorney General’s offices, pharmaceutical companies, numerous other patient advocacy groups, the FDA, and NIH, to make sure that your voice is not only heard, but also heeded. I am delighted to report that we are making real progress. Please remember, however, that we need your tax-deductible gifts today to keep our momentum going.
To Our Health,
Marilyn G. Geller, Chief Executive Officer