Celiac Disease: A New Nonprofit and Book
Editor: After Caryn Talty learned that her young son’s frequent illness, symptoms of obsessive compulsive disorder, and tics were due to celiac disease she determined first to heal him, and second to help others. This is her story:
In late 2006 my oldest son developed a tic. As the weeks rolled into months his condition snowballed, until he had chronic multifocal tics in early 2007 coupled with mild OCD. He was catching every disease that pumped through his school, and at his worst had to stay home from school for over two weeks because his symptoms were so disrupting that it grossly affected his behavior toward others. He was barely 4.
We had a choice back then, to either wait 6 months and ignore it all or go our own way and try to save our son through natural remedies. Our neurologist was ready to start a high blood pressure medication in the fall when he started school again. She said that it would quiet the tics somewhat but that it would do nothing to stop the emerging OCD. We decided to act. Our first step involved heavy online research into tics and their causes.
This led us to trying magnesium and eventually helped us to discover Sheila Rogers’ book, Natural Treatments for Tics and Tourettes. After about six months we saw mild improvements in our son but he needed a tremendous amount of supplements to keep the tics at bay and to help him cope with his mood swings. We continued searching and after a few more months I met another mother on a support forum who encouraged me to have my son allergy tested. This was the missing key element to his problems. We discovered that he was gluten intolerant and had a corn allergy, along with 15 other milder allergens. We changed his diet, but it was another year before our son really turned a corner. He has been gluten free for 3½ years and hasn’t had any tics or OCD in over 2 years. We are thankful for his health.
But even though the diet seems to be a simple cure, there are so many social and emotional issues involved in being on a special diet.
Introducing a Special Diet
Every parent of a child with food issues knows all too well the stress involved in events that should otherwise be fun, relaxing, and enjoyable. I am no different than anyone else. When my oldest son was finally officially diagnosed with celiac disease after genetic testing, our entire family was forced down an alternative food path that has and still does define so very much of our lives.
My son was quite young when he made the switch and at that time we reveled in the many celiac picture books that were and are available for children struggling to cope with this condition. But I noticed that as he aged a terrible and wonderful thing had happened to my beautiful child. He had matured and developed into a much more complicated and intelligent person. All of a sudden he was taking notice of what others thought, about not being different, and he was experiencing situations that could possibly put him at risk. His desire to fit in seemed to trump everything.
During this time he was invited to a birthday party, one that ultimately led to a complete and utter sobbing meltdown later that night. I listened to him lament about being different, of needing and wanting to feel normal, of being tired of his diet (by now he was good and healthy), and he admitted having feelings of isolation. He shattered my heart into pieces. After he finally fell asleep I went to task. I searched the web for a book that could inspire him, give him hope, make him laugh, and challenge him to take a new attitude. I couldn’t find it. There are many wonderful picture books in the celiac genre, many teach about managing the disease, some are great resources for the classroom, and still others are very helpful for younger children.
The Birth of “Cilie Yack”
But there wasn’t a novel for older kids anywhere out there that could inspire my son. In many ways I consider that child’s birthday Cilie’s birthday as well. It was nearly three o’clock in the morning when Cilie Yack was born. I kept tossing and turning without any sleep. He was just a name and a funny sketch of a cartoon character in my mind, but I couldn’t shake him out. I got up and put him to paper. It took several months and very late nights to tell his story. After several more months I completed 60 cartoon pictures to make this tale a funny and engaging one for even the most reluctant readers. I wanted a character that was flawed, someone that kids could empathize with, someone that could rise up and somehow find a way to reinvent himself. I needed a kid that seemed real, one with real problems, one who is prone to breaking the rules, getting into trouble, losing his temper, feeling bad about himself, and one who isn’t exactly the best at, well, anything. You see, if a reader can still find enough to like about a kid like that, then there’s magic. Then funny things start to happen. You see, Cilie finds a way to reinvent himself, despite everything. That’s what this story is all about. And if you get this book for your child too, he may find enough inspiration to reinvent himself as well, and if he doesn’t need to at the very least he’ll feel inspired.
A New Nonprofit: Kids with Celiac Disease
But Cilie is more than just a character in a book. He’s a larger than life character and role model for kids with restrictive diets. Cilie is the official mascot of a brand new non-profit organization called: Cilie Yack’s Sous Club for Kids. What’s our goal? We are in the business of providing kids local support groups in their neighborhoods. Our club kids will ideally come from the same school or church. They will meet regularly with their volunteer facilitators to make a recipe that is free from the top eight allergens, gluten, and corn.
We are also conscious of providing foods that are chemical free and natural. The kids will also do a fun group activity, craft, and complete an activity sheet about cooking, food, allergies, intolerances, auto immune conditions, etc.Our goal is to empower, educate, and give these kids the opportunity to socialize with safe foods in a group setting so that they can feel normal and a part of things. We are virtually launching the organization this January, but we will not accept additional clubs officially until the fall of 2011. Our club is busy reviewing, testing, and revising our materials with our charter club kids and adult volunteers. We are working hard to put a fantastic program together that will serve as a great local resource for recently diagnosed kids and their families for many years to come.
