Please share your story!
Have you been a part of Team Gluten-Free™?Please share your story through our contact page.
MY STORY — by Ryan Simon
This young man’s desire to make a difference is an inspiration to us all!
Q: How old were you when you were diagnosed?
A: I was 9 months old when I was diagnosed with Celiac Disease.
Q: How did you feel physically and emotionally?
A: I was really too young to know what was going on. I know it was emotional for my parents. It was difficult as many doctors could not figure out was wrong with me as two months passed with no answers.
Q: How long did it take to get diagnosed?
A: It took months of being sick for the doctors to finally suggest a gastroenterologist. Once we saw our second specialist, Dr. Michael Pettei from Cohen’s children’s hospital on in New York, he was able to diagnosis my Celiac Disease very quickly. My parent’s feel like we were very lucky to have Dr. Pettei as our doctor because he specialized in Celiac Disease and thought we should do the biopsy right away.
Q: How long did it take for you to get used to the GF diet?
A: It took a number of months before I would eat solid food again. Being so sick as a baby caused me to stop eating. I needed eating therapy to help me realize it was ok to eat again, that I wouldn’t get sick every time I ate food. Once I started eating my parents put me on the gluten-free diet, which was a lot more challenging twelve years ago than it is today. Since I was a baby it was easy for me to get used the diet - the bigger challenge was for my parents who adjusted day by day until it became normal for them to supply the gluten-free diet to me.
Q: How has having celiac disease impacted your life?
A: Celiac disease has affected my life by me becoming more open to eating different types of foods, I feel like I have more empathy towards people, I am more mature because of the challenges I have to face and it has caused me to become a more adaptable and independent person earlier than most children my age. (Ryan is 13.)
Q: What made you want to get involved with CDF/TGF?
A: For my Bar Mitzvah I had to do a mitzvah project (a project that helps others) and I thought it was a good idea to incorporate my celiac disease into my project.
Q: What is your strategy to get people's attention and/or donation?
A: I sent out an email to all my family and friend’s telling them about my plan to run a 5k in support of Team Gluten-Free™. In the email I explained how to donate and where the money would go and that while my family’s ability to supply my diet, surround me with people who vigilantly ask questions about what I can eat, and the feeling of ease of living with celiac disease as a child/teenager should not be taken for granted.
Q: Where do you go to talk to people?
A: Whenever I feel overwhelmed by my celiac disease or constraints from the diet that come with it, I talk to my Mom or Dad, or my grandparents.
Q: What are your challenges?
A: Some challenges that I face are making sure that I am eating right when I am by myself or with friends. I also need to keep reading ingredients on food labels and as I get older ordering in restaurants without being afraid. I never want my celiac disease to curtail anything I would do if I did not have celiac disease.
Q: What have you learned from this project?
A: I have learned that I am lucky to have the support and care of my family and friends. And that I am able to purchase gluten free foods that others may not be as lucky as me to have. We need to continue to make sure that all on the gluten free diet due to celiac disease can get the education, support, and food supplies to make their life easier.
Q: What are your plans for the future?
A: Raising awareness, participation in Team Gluten-Free™ races. My mom and I love running together. We will definitely do another race in the future. This time we could reach out to other people, perhaps those with Celiac Disease or a relative with Celiac Disease and raise money that way. It was so much fun running with my mom and helping others. I can’t wait to do it again soon!!!!!
Ryan Simon and his mother
MY STORY — by Carrie Owen, Founder, Team Gluten-Free™
Our daughter was diagnosed with celiac disease at eighteen months in October 2003.
We had never heard of celiac disease and we were quite devastated by the diagnosis.
Her favorite foods like pasta and crackers were now poison to her and we were afraid to feed her.
In the months that followed, we learned a lot about the only treatment for the disease—the
gluten-free diet—and even more about the disease itself. We were shocked to learn 1 in 133
Americans have celiac disease and even more shocking, 97% of them don’t know it yet.
I knew fundraising and creating awareness were extremely important. I wanted to help others
get diagnosed as well as raise funds for research. Many charities use endurance races as a
fundraising platform. I figured if it worked for them, it could work for celiac disease too.
Our group would raise money while increasing awareness on a national level. After all, groups
have been doing this for years with great success.
And one afternoon Team Gluten-Free™ was born.
We ran our first race in January 2005 at the P.F. Chang’s Rock ‘N’ Roll Arizona Marathon and Half Marathon in Phoenix, AZ. We have been running strong ever since. The monies we raise go directly to celiac disease research and awareness programs as well as camp scholarships for celiac children.
My husband, Scott, was diagnosed with celiac disease in the spring of 2008. His diagnosis has made my dedication to Team Gluten-Free that much stronger. I am passionate about increasing diagnosis rates, improving the lives of those with celiac disease and educating the public about this often misdiagnosed disease.
It has been a wonderful experience and I am proud to be part of such a great organization. I encourage you to tell your friends and family about Team Gluten-Free™ and help us spread the word about celiac disease. Please join me as we “race to improve the lives of those with celiac disease.”
Carrie, McKenna, Mason and Scott
MY STORY — by Sarah Givens, San Diego, California
On May 17th, 2008 we had 30+ runners and walkers of all ages participate in the City of Encinitas 5K and 1K Run on behalf of Team Gluten Free. It was such a thrill to see the runners go by in their bright green shirts. Boy, did we stand out.
When it got time to get the kids ready for the Kids 1K Fun Run, I had tears in my eyes seeing all of these celiac kids and their friends getting excited to show their stuff.
My daughter had such pride in knowing that all of these people came out to support "her" cause.
I had more than 10 people ask me about the program, a few saying they knew someone who was in the process of a potential diagnosis for celiac disease. Others had never heard of celiac disease, but may now take a second look at the gluten free pasta at Whole Foods.
We even had the race announcer comment on our team unity (and those bright shirts). It was a very fulfilling day as a mother who wants to make my daughter's Gluten Free world just a little better.
– Sarah Givens, San Diego, California
MY STORY — by Poskarbiewicz Family, Cleveland, Ohio
Our daughter was diagnosed with celiac disease at age 7, after many years of illness and frequent trips to the school nurse. She is now 12 years old and doing very well! In addition, her diagnosis spurred my husband to be tested since he has had many years of stomach trouble and illness.
Since their diagnosis, we have tried to find as much support as possible. In our area (Cleveland), the local support group decided to join with TGF to participate in the Cleveland Rite Aid Marathon.
Since our family does not run, we decided to do the 10K walk together. We felt this was a great opportunity to raise awareness of the disease and raise money for the cause!
We drafted a letter to send to all of our family, friends, co-workers and daughter's teachers. In it, we explained what celiac disease is, the impact it has on a person's life, what TGF was all about and how the money would be used. In addition, we talked about our hopes for our daughter's future - that by the time she gets to college, CD will be a common and easily managed dietary concern for every college food service department. We want her to be able to hang out with friends, share a meal and not always feel like she is "different".
Well, we had a great response from everyone and our small family was able to raise $600 in a few short weeks! We also received many wonderful notes of support and encouragement from our donors. Just imagine if everyone could get their story out like this - how many lives will we change by raising awareness and funds to support research?
We may never know but all of the effort is worthwhile! Thank you TGF for spearheading this effort. Our family had a wonderful time getting ready for our walk and raising funds together!
-Poskarbiewicz Family, Cleveland, Ohio
For more information about celiac disease contact the Celiac Disease Foundation
at 818-716-1513 or visit the website at www.celiac.org
