Team Celiac Runners
I am running the NYC Marathon this November 2017 for the Celiac Disease Center at Columbia University. I am running on behalf of the aid and work The Center has done for my eldest son, Harry, who is now 19 years old.
Harry was always on the thin and pale side but, when we lived in England, he blended in with the English pallor. Honestly, since the sun hardly ever shone there, we never thought too much about it! When we moved to the USA in 2011 when Harry was 14, however, we noticed that he looked much thinner and paler than the other boys. The following year, Harry joined the Cross-Country Team as a Freshman, and his strong performance earned him a place on the Varsity Team. Regrettably, he kept returning home late and tired from practice, and the coach moved him out of the race line up. Harry’s pediatrician diagnosed our son with anemia, whereupon Harry began taking iron. During his sophomore year, he tried wrestling but he broke his foot in his very first match. No one suggested we check for Celiac Disease and that Celiac Disease caused brittle bones! He continued taking iron throughout his junior year to keep the anemia at bay and gave up sports altogether. As Harry applied for colleges during his senior year, he was absolutely exhausted and sleeping a lot of the time. After the pediatricians ruled out Mono, and other potential ills, my personal physician confirmed her suspicions about Celiac Disease with a blood test and endoscopy, finding Harry’s celiac markers were “through the roof.”
Never having heard of Celiac Disease, we felt greatly relieved to have a diagnosis in October 2015. The doctors in Greenwich assured us that Harry would be a “new man” if he followed a gluten-free diet, but he continued to feel as sad and fatigued as before. In fact, it has taken 20 months for Harry’s labs to come back as “normal!”
It was not until June 2016 that we went to the Celiac Disease Center at Columbia University, where we were heartened to find excellent resources including a world expert, Dr. Peter Green, guide us through this disease. Dr. Green suggested a bone scan, which revealed that Harry had osteoporosis in his wrists, and osteopenia in his legs. We also went home with a gene test to check our other children for the disease – and found that two of our other seven children were highly likely to develop Celiac
Disease. In addition, the nutritional counseling from the amazing Anne Lee was invaluable – including a home visit to assess our “kitchen compliance.” As the mother of a son who had been diagnosed with Celiac Disease as a teenager, Anne is especially sensitive to Harry’s emotional state. She has been an invaluable resource helping Harry prepare for the college experience and has even helped liaise with college staff in advance of his arrival this Fall. With her help Harry took a gap year after high school and has gained 40 lbs!
Besides the support from the Staff, we found that the fundraisers and cooking classes sponsored by the Center have given us the opportunity to meet other families with children who have Celiac Disease. In fact, we find it interesting that we keep meeting other families with teenagers who have developed Celiac Disease during their high school years, often with traumatic effects. Knowing others have been through it, and swapping ideas and tips (e.g. McDonalds fries are gluten free and Chic–Fil-A has GF chicken) has been extremely helpful and helped our son be a ‘normal’ teenager!!
I am running the race to raise money for Celiac Disease Center at Columbia University so they can continue their vital research and to help them support other families in situations similar to Harry’s!
With all best wishes,
Please give a gift to my race. Your donation will help make important progress possible and improve the lives of individuals with celiac disease. With your support, we can continue to make a huge difference. Make a gift online and reference me in the Comments/Special Instructions box on the Gift Details Page.