Tuesday, October 13, 2009

The National Foundation for Celiac Awareness

Today I joined the Janus Charity Challenge. Sponsored by Janus, the Janus Charity Challenge was designed to motivate Ironman athletes to use participation in any of the U.S. full distance Ironman races to increase awareness and raise money for charity.  The program has no designated beneficiary – athletes can choose to raise funds for the charity that they are most passionate about. To inspire athletes to participate, Janus makes additional contributions to the beneficiaries of the top fundraisers at each of the seven U.S. Ironman races.

I've decided to raise money for the National Foundation for Celiac Awareness. Celiac disease is a genetic autoimmune disease, with which I was recently diagnosed. Celiac disease causes my body to attack itself whenever I consume gluten, which is found in wheat, rye, and barley. When a person with Celiac disease ingests gluten, her immune system responds by damaging the finger-like villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream, which can lead to malnourishment. Left untreated, people with Celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer. The only treatment for Celiac disease is following a gluten free diet.

About 1 in 133 people have Celiac disease but 95% of those people don't know it yet! Diagnosis takes an average of 11 years. The symptoms vary a lot and some people have no symptoms! My main symptom was an unexplained occasional rash on my elbows for about a year, but I'd had years of unexplained iron-deficiency anemia and elevated liver enzymes. My primary care physician screens all her new patients to see if they have a gluten allergy and that blood test combined with a biopsy of my rash told me back in February that I needed to go gluten free. A recent genetic screen confirmed I have the Celiac genes. I've been gluten free since February.

Post-diagnosis, I've learned how ubiquitous gluten is. It can show up in soy sauce, chicken broth, salad dressing. It's not always easy to spot on an ingredient list. It can be in "natural flavoring" or "modified food starch" or even "caramel color"! It can even be in vitamins or medications. Even foods that don't contain gluten can be problematic due to cross contamination issues. The smallest crumb leftover on a cutting board can contaminate an otherwise gluten free salad, for example. A prepackaged snack that was manufactured on shared equipment with wheat could cause a reaction. You can imagine how difficult eating safely at a restaurant can be! After a few weeks on a gluten free diet, I felt like I had more energy. Within a few months, my asthma also improved and I have normal blood test results for the first time that I can remember.

The most difficult thing about Celiac disease, for me at least, is that gluten is everywhere and there is very little awareness of Celiac disease. My goal is to raise awareness of Celiac disease because I believe awareness is the first step towards increased diagnoses and better quality of life for those diagnosed. It's really been amazing to me to learn about all the health problems that can be related to a Celiac ingesting gluten (for example, infertility, osteoporosis, and autism have all been linked) and yet people don't know about the disease!! You, or someone you know, could be suffering from Celiac's disease without knowing it because of the lack of awareness.

As a participant in the Janus Charity Challenge for Ironman Florida, I'm raising money for the National Foundation for Celiac Awareness. One challenge for me during the actual Ironman race includes having to carry my own food. The bananas provided on the course should be safe, as long as the volunteers who touch them haven't been touching pretzels and used a clean knife and cutting board to slice the bananas instead of the same one that cut the gluten-filled sports bars. On second thought, maybe I'll ask for a whole banana!

Please help me raise funds for the National Foundation for Celiac Awareness. They're educating healthcare professionals to increase the rate of diagnosis and promote appropriate care. They're educating food service professionals to provide safe gluten free options for institutions and individuals. It's really important for celiacs to have an organization like the NFCA working hard to achieve these important goals. I'm hoping that by raising money for the NFCA through my Ironman race, I can help NFCA continue to increase awareness of this disease.

Follow This Link to visit my fundraising web page and help me in my efforts to support the National Foundation for Celiac Awareness!

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