Carolyn and Ian Talty talk about Ian's condition and the book Carolyn wrote to help Ian cope with living on a restricted diet. Their story comes courtesy of Latitudes.
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 four.
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 now been gluten free for 3 ½ 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.
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.
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 who was flawed, someone who kids could empathize with, someone who could rise up and somehow find a way to reinvent himself. I needed a kid who 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.
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. Until then, though, interested families will be able to enter contests, win prizes, join our online community, and view our curriculum, when they visit: http://cilie-yack.org. 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.
Anyone who is intersted can buy the book from the Cillie Yak website.
Gluten-free Tips for Kids
by: Ian Talty, age 8
This article was dictated by Ian to his mom.
If you’ve never heard of the gluten-free diet before you should probably get a
quick lesson into why it is important to do for some people. Some people are
born with a special gene that doesn’t allow them to digest gluten. So when they eat it they get sick. Some kids will throw up, some will get headaches, and all sorts of other types of problems. My problems are migraine headaches and throwing up.
When I was little I used to always get fed gluten, wheat, and corn because they were my favorite foods. I ate them every day. I used to always get lots and lots of problems. I started having problems with eye blinking that used to happen all the time. I couldn’t keep myself from doing it. I used to do a lot of shoulder lifting, lip- licking, and I was obsessed with washing my hands and changing my clothes all day long. Usually when it was happening to me I used to wonder why. I never understood how come I had these problems but my friends didn’t.
My mom told me that I could be allergic. She was going to take me to the doctor to find out. The doctor told us that I had allergies and that I should stay on a diet until my symptoms go away. I have been on a gluten-free diet for 3 ½ years. Now I am sick a lot less than I used to be. And I really like that. I haven’t had any gluten or wheat in such a long time, and I don’t have any desire for the taste of them at all.
So if you think you may be allergic like me, you should get tested by a doctor. If the doctor says you need to stay on a special diet, then do it without ever cheating. If you cheat you won’t get healthy. You will go back to being sick. This happens because if you have a gluten allergy your body cannot digest wheat at all. It will just irritate your body. Some kids have skin problems from wheat. Some get really bad stomach aches and bloated bellies. If you have these symptoms a lot of the time you need to get tested for food allergies and gluten intolerance.
When you find out that you need to be gluten-free, there are a lot of things you can do to make yourself feel more normal and to keep yourself safe. I think we can all agree that getting on a new diet can be pretty tough. So I’m going to give you a little advice on how to get used to eating the gluten-free way everywhere you go, including your home, school, and your friends’ houses.
The first thing you need to know is that you are not alone. There are plenty of kids just like you, maybe even some at your school, who are already eating gluten-free.
So here are 10 easy tips for kids getting started on a gluten-free diet:
- Find a support group for gluten-free and join it. The Gluten Intolerance Group (GIG) is very helpful for non-celiac gluten intolerant families and they have chapters all over North America. I met a really cool kid my age with celiac disease just like me at a GIG meeting.
- Make a list of all your favorite foods and then sit down with your parents and search for recipes that are similar to the dishes you like to eat but that don’t have foods you are allergic to. This makes your new diet easier to handle. I like to eat gluten-free cookies and brownies. I like chocolate rice cakes, porridge, and pizza. I can get all of these foods gluten-free. There is even a new cheese that is dairy-free and soy-free for kids who need to stay away from those things too.
- You need to talk to the rest of your family and to your friends about your allergens just so that they know how to help you. This year my friend Lily asked her mom to make something safe for me to eat for her birthday. I really loved that. But my mom and my teacher also keep special foods for me to eat at school when the other kids get treats. One time all my classmates got tiny cup cakes but I got a huge gluten-free brownie. My teacher laughed and called it a monster brownie. My classmates though my treat was better than theirs. They were a little jealous that day, and I thought that was pretty cool.
- Cross contamination is another thing to worry about. It is when your allergen gets mixed in with your safe food and causes you to have symptoms again. Have your own jars and bottles of stuff with your name on it. Don’t eat stuff that was made in a kitchen that makes foods with wheat or gluten, either. It is really hard to clean up the flour dust that settles on all your cooking equipment. Even your towels, your wooden cutting board, and rolling pin will have gluten in them too. Make sure everything stays clean.
- If a person you have never met before offers you something to eat always ask if it has wheat or gluten in it. If they don’t know then do not eat it.
- If you are ever shopping, make sure you always check the labels on everything you buy. Foods with gluten or wheat have to be labeled that way.
- Did you know that meats do not have to say that they contain gluten? So when you buy meat, make sure the package says gluten-free. Sometimes seasoning on meat has gluten in it. Never eat meat at the deli. You have to buy your lunch meat in packages that say they are gluten-free.
- Ask your mom or dad to give you healthy snacks for trips to your friends’ houses and even when you go on long car rides. Make sure you know the names of a few products that are safe for you to eat and the locations of safe restaurants too. A good place to check out is the Allergy-eats website.
- A lot of kids don’t realize that some crafts are dangerous when you have gluten intolerance, such as Play Doh and paper mache. Some kids will get itchy red palms when they play with these things. Your skin will soak up the gluten, so you have to be very careful and stay away from these. Luckily there are loads of gluten-free craft recipes, and even a couple of companies that make gluten-free play dough.
- Don’t use shampoos and soaps with gluten in them either or you may get very itchy skin. A lot of kids don’t realize that wheat is in a lot of these things.
Latitudes is the excellent journal of the US Association for Comprehensive Neuropathy, a leading source of free information that can help you reduce or avoid the need for prescription medications for ADHD, anxiety, obsessions and compulsions, autism and learning difficulties, depression and tics or Tourette syndrome.
First published March 2011
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