This one may be a tough nut to crack. It’s hard enough for our kids going through that “in between” or “tween” stage of life – around the ages of 10-14 or so. Managing celiac disease or navigating a new diagnosis during that time could make it even more difficult. This post explores kids’ difficulties and how we as parents can possibly help them manage through it. It is not the end-all-be-all post on tweens and celiac, but it might be enough to get a family started down the right path.
In a recent survey conducted this month by www.thesavvyceliac.com, I asked parents to openly discuss some additional comments and stories about their tween and/or teenager with celiac disease. Many of the comments had to do with acceptance of the diet and the answers ran the gamut.
Frustration, Grief, Self Pity
“Feels unfair”, “older…more opportunities for cross-contamination and mistakes”, another parent said her child wants to keep it secret. These are a taste of some of the concerns parents have about their celiac child as they go through those formative years on the gluten-free diet. Working with this diet may make him or her feel uncool or an inconvenience to others including friends. It can be a time where many kids would rather blend in than stand out.
One parent wrote, “It is hard for a kid to accept this as ‘just another thing to manage’. For my son it feels unfair and like it is a real insult to have this disease.” Another parent says when their celiac toddler grew up into a celiac teenager, the gluten-free lifestyle that had been so controlled my Mom and Dad, began to change, “He eats a lot more processed food than before so that combined with teenage decisions about risk have brought about many more discussions – sometimes it almost feels like we’re back where we started.”
Finally another parent simply said, “[He] does not want others to ‘know’ he has celiac.”
Is some of this anxiety, self-pity? Where does it come from? Some children may feel like their friends will reject them if they know about the diet or “disease”. Experts at Parenting.com say this age is the prime time where children begin to learn about disappointment and how to deal with it. Sit down and talk about your child’s concerns – with the disease, at school, do they feel different and how? Remind them they are no different as a person than the day before their diagnosis – except now he or she knows more about their food!
Another idea according to Parenting.com, is to share any disappointments or setbacks that are similar in nature to your child’s. Many parents, uncles, aunts, grandparents in the family may have already had a celiac diagnosis — since it is a genetic disorder. Ask celiac relatives to tell their stories to your child about overcoming any perceived obstacles with their diagnosis.
One parent summed up this potentially troubled time, “…these years are ones where kids are at risk and need lots of support to deal with the diet and the sense of feeling deprived.” Knowledge is power. Parents can support their kids by helping educate them about their gluten-free lifestyle and the diet. And it likely will entail finding out what the gluten-free “junk” foods are. A bag of Cheetos, SweetTarts and a soda are easy to pick up at the convenience store when your kid is hanging out with his or her friends on a Friday night. Also Mom and Dad can quietly find out what is gluten-free at the concession stands at your child’s school. This way you can tell you son or daughter about it and they can order it without batting an eye. This way he or she may not feel so alone.
Accentuating the Positive
Other parents talked positively about their celiac children and their experiences since being diagnosed: “he feels so much better”, “not considered cheating”, “never been a big deal” were some of the words used.
Some teenagers see this experience and diagnosis in a positive light. Some of them were so sick by the time they were diagnosed now they have no intention of cheating because the horrible symptoms will come back. “My son was 4’10” and 76 pounds when starting high school. He looked truly like a misfit,” one parent said. “With his diagnosis he accepted his diet and has not considered cheating because he feels so good now….Just three years later, he is now 5’10” 140 pounds!” What a change for the better.
Another parent talked about how open their family is about the diet and making sure that it is not a burden. “Our son has always been very open with his friends and classmates about his disease and how he needs to take care of himself. It’s never been a big deal for him…Our son advocates for himself and knows his disease does not have to get in the way of him doing anything. However, I think that attitude must begin with BOTH parents first.”
“It’s definitely gotten easier,” another parent pointed out. They’ve been through the tween stage – now they’re looking at the latest hurdle finding a gluten-free friendly college.
Maybe it’s different when our kids grow up from “babyhood” with celiac versus those who are diagnosed during these formative tween years. I do agree it is hard, because celiac disease and the diet can make things more difficult when our kids get more social, but education can be a key factor in helping them navigate. And hopefully you’ll find understanding friends, parents and coaches along the way. A good support system can make all the difference.
Here are a few resources I found to also help parents and kids:
Blog for teenagers, it doesn’t look like it’s been updated in a while, but hopefully it will be soon
Celiac camp: This blog post just went up this week courtesy of blogger Tricia Thompson. I can tell you the camp in Minnesota is the one my daughter went to in 2007 and she thought it was great. The only reason she didn’t go back in 2008 is because Ida, our exchange student, arrived from Norway during that time and Emma wanted to be here for that. I’m sure she’ll go again this summer.
Recipes for teenagers with celiac: http://kidshealth.org/teen/recipes/gluten/about_cd_recipes.html