When Lisa Rigney’s daughter was diagnosed with celiac disease six years ago, one word came to mind.
“Overwhelmed,” Rigney remembers. “It was a very, very overwhelming experience.”
Celiac disease, a condition that causes the body to overreact to gluten in foods such as barley, rye and wheat, damages the lining of the intestines, preventing proper absorption of nutrients crucial to good health.
Because the disease did not run in the family, Rigney knew almost nothing about it, yet she had to immediately make fundamental changes to her child’s diet.
“I knew celiac disease was related to being gluten-free, but that was the extent of my knowledge.”
Trips to the grocery store, a chore she had always done “with her eyes closed,” now became a careful exercise in reading package labels.
And even after her daughter switched to gluten-free foods, Rigney still had nagging questions about whether the meals contained enough essential fiber and nutrients.
“In the early days of the diet, she was lethargic, so it was a question of, is she getting what she needs?”
Because there were so many details to learn, the entire experience was “a steep learning curve,” Rigney recalls.
That journey will now be a little easier for families like the Rigneys, thanks to a new gluten-free food guide created specifically for children and youth by University of Alberta nutrition researcher Diana Mager, pediatrics professor Justine Turner and their colleagues.
The guide broadly addresses the nutritional needs of children with celiac disease, including restrictions in the gluten-free diet that may affect these needs, says Mager, a registered dietitian and professor in the Faculty of Agricultural, Life and Environmental Sciences and the Faculty of Medicine & Dentistry.
“We wanted to develop a comprehensive resource for families on how to start building a gluten-free diet, to take the burden of worrying about whether their child is eating healthily.”
The 40-page document, available for free online, helps answer some of the many questions families have when a child is diagnosed with celiac disease.
“There are so many changes to make in cooking, recipes, grocery shopping and questions about children’s continued development and growth. That’s why we wanted to provide a nutrition-based resource that works in partnership with dietitian support to provide ongoing resources,” says Mager.
Meeting the nutritional needs of children with celiac disease is especially important, she notes.
“It is a crucial period of growth and development. Children in particular who are not diagnosed until adulthood often experience poor bone health from a very young age, putting them at risk of bone fractures in the long term.”
And while a gluten-free diet is the basis for treating celiac disease, it also has some dietary restrictions, including high fat or sugar levels in processed gluten-free foods and low levels of folic acid, a vitamin important for healthy cell growth and function. .
Based on research by Mager and her collaborators, the guide is an evidence-based resource for families, who often resort to searching online for nutritional information, she notes.
“There are many nutritional myths about the gluten-free diet on the internet. For example, if the advice is to eliminate wheat from the child’s diet, that will not solve the problem because there are other grains that contain gluten.
“It was important to us to develop a tool that could provide consumers with evidence-based guidance.”
Having the guide would have made “a big difference” in learning to plan a healthy diet for her daughter years ago, says Rigney, a program coordinator for the Edmonton chapter of the Celiac Canada, who helped develop the guide.
“It includes little things like combining foods to improve nutrient absorption. That’s something that healthcare professionals would know, but not necessarily the general population.”
The research team took a multi-pronged approach over the past five years, surveying parents of children with celiac disease, along with doctors, nurses and dietitians across Canada, about what they wanted to see in a food guide for young people.
The researchers also studied the dietary patterns of Canadian children and adolescents with celiac disease and reviewed similar data from other countries. They then developed more than 1,000 simulated gluten-free menus that are nutritionally complete for young people aged four to eighteen.
“From there, we developed a plate model of different food choices for what children and youth should consume in a day to promote healthy eating.”
Their recommendation is to fill just over half the plate with fruits and vegetables, and eat gluten-free grains such as pasta or rice, along with proteins such as seeds, nuts, fish, eggs and other animal proteins. The serving plan also includes a serving of unsweetened milk or a fortified plant-based drink.
The guide’s content and layout were also evaluated by focus groups of children, their families and healthcare professionals to ensure it was easy to read, especially for young people, Mager notes.
At a glance, colorful photos show the many gluten-free, healthy food choices available.
“We wanted it to be easy to use so that a six-year-old could identify different foods. There are many challenges, such as social events, in a child’s life if they do not adhere to a gluten-free diet. Kids want to fit in with their peers, so they want to know what they can eat, not what they can’t have.”
Topics covered in the guide include a comprehensive overview of essential gluten-free food items such as iron, fiber, legumes, healthy fats and natural sugars, which was important for teens involved in sports.
“They wanted to know what the better food choices are to address issues like bone health.”
There is also a list of which grains are and are not gluten-free, and how to cook and store gluten-free foods. Recipes are included, as well as vegetarian, vegan and lactose intolerant diets.
Along with that information, the guide shows you how to read nutrition labels and ingredient lists on gluten-free processed foods. It also offers tips on grocery shopping, eating cheaply, eating out, and preparing healthy school lunches and snacks.
“People wanted to have material that their children could relate to, so if teenagers bought their own food, they would know how to stick to a gluten-free diet.
“It also helps parents come up with new ideas to make gluten-free meals tasty, fun and not the same over and over again.”
The guide, which Rigney keeps in her kitchen, is an “invaluable” resource, she says.
“Because all the information is in one place, you can refer to it and re-educate yourself again and again.”
And the easily digestible format makes the guide a good patient handout for registered dietitians in primary care practices, who may not have specialized expertise in gluten-free diets, Mager adds.
The guide is now being shared with children and their families participating in ongoing clinical research, and early results show encouraging improvements in newly diagnosed children’s diets over six months, including eating more fruits and vegetables, she says.
The researchers will continue to measure the health impact of the guide, as well as other lifestyle factors, such as whether it helps families shop more wisely to tackle high food costs.
In the meantime, the guide offers parents like her “peace of mind” and a sense of confidence for their children in eating a healthy gluten-free diet, says Rigney.
“There is definitely empowerment for children to understand their diet and how it affects their overall health.”
Research and development of the food guide was supported by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute, which provided scholarships or summer fellowships to Amanda Liu, Samantha Cyrkot and Rita Jiang. Funding was also provided by the Alberta Health Services Maternal Newborn Child & Youth Strategic Clinical Network and Diabetes, Obesity & Nutrition Strategic Clinical Network, as well as the Dr. JA Campbell Research Award from Celiac Canada and the Edmonton and Calgary chapters. Diana Mager and Justine Turner are members of the Women and Children’s Health Research Institute.
Read more about the new guide
Listen to Diana Mager’s podcast on how parents can use the food guide and associated resources. She also hosts one free webinar on Thursday, January 25 at 5 p.m to talk about why she created The Gluten-Free Guide for Kids and how it can help families enjoy gluten-free meals, and to answer questions about gluten-free living.