By Cherie Gough
My daughter was diagnosed with celiac disease at age 4 1/2. It’s an autoimmune disorder affecting 1% of the population. Currently, the only available treatment is strict adherence to eating a gluten-free diet. For many with celiac, eating even a crumb causes the digestive system to flare up for weeks at a time causing severe stomach pain, exhaustion, and brain fog among other symptoms.
Ann Campanella, the author of Celiac Mom, also parented a daughter with celiac. Her daughter is an adult now, but when she was young, Campanella did everything in her power to protect her from gluten exposure, including homeschooling through elementary years, home cooking virtually every meal, and packing three coolers full of safe food for a family vacation.
When my daughter was younger, I also assumed the burden of communication and advocacy: volunteering at school events, communicating with teachers, and ordering for her in restaurants. Now that she’s a tween, I want her to gain the confidence that comes with experience so that she can grow and learn to advocate for herself. But I worry that her stringent diet will limit fun opportunities for normal teenage spontaneity. I wonder if her disease will have widespread effects on her social emotional health.
Campanella’s daughter Sydney was diagnosed at the same age as my own daughter, just ten years earlier. Since her journey with celiac disease is so similar to my own daughter’s experience, I asked Campanella to share her insight into raising her daughter with celiac disease through her teenage years. “There are two things to remember when dealing with teens,” says Campanella. “They are always hungry and they do not want to stand out from their peers.”
When her daughter became a teenager, Campanella recognized that her daughter’s spirited independence was growing. She found it challenging to be as firm an advocate as she once was during her daughter’s younger years. “Let me handle it” became a popular refrain in her house. “Sydney wanted independence and didn’t want me to speak for her,” Campanella explains.
She had to find ways to let go of controlling her daughter’s diet and teach her to self-advocate. Campanella says pivoting from advocate to coach supported her daughter as she grew into a young adult. She shares these celiac disease tips for parents of teens.
Coping with Celiac Disease in Teens
Honor and respect your child where they are
Campanella says some tweens and teens will accept your help with preparing snacks and communicating, but some would rather go hungry than stand out in the crowd. Campanella recalls a busy basketball season when Sydney didn’t want to share information about her dietary limitations with her coach or teammates. She honored Sydney’s wishes. One game day, Sydney forgot to pack snacks and felt hungry all afternoon. Afterward, the team went for post-game pizza, and since the menu lacked gluten-free choices, she ate salad. “She was starving when she arrived home. But she learned from that experience to be more prepared. And she started letting me help her, especially during really busy days.”
Tell stories rather than lecture
Campanella and I agree that teens hate to be lectured. She gave her teen advice indirectly through storytelling. For instance, her conversation with Sydney in the above situation began with “I remember how hungry I got after school…,” then continued with “If it was me, I’d….” This mild approach, sideways rather than head on, opened the door to easier conversations and allowed Campanella to teach Sydney the tools she needed to make good decisions.
“You don’t want them fighting you,” Campanella reminds me. “You want them fighting the illness.”
Ask what kind of help they want, and know it’s okay to let them fail sometimes
My tween thinks I’m being pushy when I give her unsolicited advice. Campanella advises me to allow my daughter to do things herself. Instead of telling my daughter what to do, I can try asking, “How can I help?” As hard as it is knowing our kids will make mistakes along the way, Campanella believes it’s important to back off if our teens refuse our offer to help.
Homemade meals are a celiac staple. In my family, we help build self-sufficiency and kitchen confidence by teaching cooking skills to our teen, and we encourage her input with family meal planning.
Be a soft place to fall
Sometimes dealing with celiac disease is really difficult for my tween and her frustrations spill over at home. Campanella says her daughter’s teen years were similar so she “tried to cut her slack and be prepared for lots of emotions and hormones.” She says that after that particularly long day playing basketball and then attending a team dinner, she knew Sydney would feel extra hungry and grumpy, so the family offered to take her out to dinner at her favorite safe restaurant knowing she’d happily accept the offer.
When possible, find a gluten-free friend or two
My daughter is the only student in her grade with celiac disease and she doesn’t like being labeled as different. We’ve been lucky to find friends who go above and beyond to accommodate my daughter’s dietary needs, but they still don’t understand her burden completely. Campanella says that the camaraderie Sydney found with friends who also ate gluten-free helped build her daughter’s confidence. They supported each other, ate the same food, and understood each other’s issues without questions or stigma. These friends gave her peace of mind. Basketball camp was so much more fun with a friend who also couldn’t go through the cafeteria line.
Campanella says that finding friends with celiac disease was important for her as a parent, too, because it allows families to bond by sharing stories, “making the burdens of parenting lighter.”
Find community and mentorship opportunities nationwide through the Gluten Intolerance Group.
Adversity builds resourcefulness and confidence
Even with years of research and preparation, I worry about how my daughter will take care of herself when she’s older and away at college or living in another city. Fortunately, Campanella has words of encouragement.
“It wasn’t always easy, but celiac disease has helped Sydney grow. It’s amazing to see how strong she’s become by learning from her mistakes. She’s become a more outgoing, confident version of herself. Learning to speak up for herself has been a point of growth,” Campanella says. “She recently planned a college sorority formal, including the food, music, and venue. This is a huge stretch for my formerly shy girl. She’s developed real leadership skills.”
Everyone has a challenge. Celiac disease is just our challenge.
Celiac disease can feel overwhelming sometimes, but I try to keep a sense of perspective and help my daughter develop a sense of gratitude. We focus on being fortunate enough to have everything we need to eat gluten-free, which keeps my daughter feeling energetic and healthy. Campanella’s words to her daughter resonate with me: “It’s really hard, but it’s not the end of the world.”