Written by Helen Gu and Arushi Pandit, FCSN Voices Youth Reporters
Graphics by Megan Kellogg, FCSN Voices Graphic Artist
A food intolerance is caused by one’s body not being able to digest a certain food or an ingredient in the food. For this edition of the Food and Nutrition Series, FCSN parent Jia shared the challenges her daughter Alice faced as a result of gluten intolerance and their journey together in order to manage this condition. Providing inspiration for other families dealing with a similar situation, this article presents the story of a mother’s determination to help her daughter and advice that she would share with the community.
“When Alice was young, we read stories of parents who stopped giving their autistic kid gluten and casein, and the kid became more talkative and learned social skills faster. However, that didn’t happen with Alice,” Jia began. “I think a lot of parents go through this stage too because in the beginning, it’s really difficult: you don’t know what to do, especially if the kid is also a picky eater. We were discouraged from the lack of noticeable change, so we didn’t think that going through the pain of the gluten-free and casein-free diet was worth it.”
The market twenty years ago also lacked easily accessible gluten-free and casein-free products. “There were no recipes, and the ones that existed were difficult to make,” Jia recalled. “I remember for her birthday, I baked gluten-free cupcakes to bring to school, and they just fell apart.” In addition, food was one of the key motivators and reinforcers for Alice; hence, when the altered diet didn’t make a positive difference in Alice’s behavior or autistic symptoms, Jia decided to discontinue it.
Shortly after Alice entered middle-school, she began to exhibit aggressive and self-injurious behavior. Startled by the sudden regression in her behavior, Jia tried to tease out the trigger, and she suspected that it might be related to the fact that the family was eating a lot of wheat based foods such as noodles during that short period of time. She decided to give the gluten-free diet a try again for Alice, and her suspicion was confirmed. “By the third month of the diet, she had noticeably calmed down a lot,” Jia recalled.
In order to enforce this diet, Jia used multiple methods to encourage Alice to eat gluten-free items. Alice loves desserts, but most desserts invariably contain gluten, a protein that would cause undesirable behavior in Alice. In order to remove all these temptations, Jia would hide items that contained gluten, such as tasty pastries. “We try to tell her that products with gluten she cannot eat, and those that don’t contain gluten, she can,” Jia added. “We had to remind her as frequently as we could to help her learn.”
In addition, the junior high and high school that Alice attended were very supportive of her gluten-free diet. “The schools take this very seriously. They gave me a list of foods and told me to circle the foods that Alice could eat and cross out the ones she couldn’t eat,” Jia said. “The biggest support has definitely come from these schools and from organizations such as FCSN who also have other individuals on the gluten-free diet.”
Although it has been difficult for Alice to distinguish between foods that contain gluten and those that do not, over time she has slowly started to learn and develop a habit of checking with an adult. “Now that you take the gluten out of her system, she’s more willing to listen to you,” Jia notes. “For example, we once went to a party, and after dinner, there was a table of sweets. Alice pointed at the sweets and asked us, ‘Gluten-free?’ I said no, and she looked away from it.”
For many parents, determining whether their child’s behavior is triggered by certain food intolerances can be difficult. Jia recommends for parents and caretakers to keep a behavior and food journal and closely monitor their child’s behavior to see how they respond to different foods. Attempting a gluten-free diet for a period of time without seeing any changes can be discouraging, but Jia recommends giving the diet at least six months to see if it works. “If you don’t try for six months, it’s really common that nothing happens,” Jia said.
People who are intolerant of gluten might also exhibit different symptoms: for some people like Alice, the gluten accumulates in their body and reactions take a while to show, while others may have an immediate change in behavior after eating only small amounts of gluten. “You really need to observe the individual for any changes,” Jia emphasizes.
Just like many others, Alice’s favorite foods are laden with gluten: noodles, pizza, pastries, and sweets. Because of the addictive nature of such foods, people with gluten sensitivity may find it incredibly difficult to give them up. Not only that, people on special diets often feel left out during social events that involve food. To help Alice counter the sense of deprivation and help her fully participate during social gatherings, Jia had to learn how to make gluten-free versions of Alice’s favorite foods so that Alice can still enjoy these foods. At social gatherings, Jia will prepare the gluten-free version of that food ahead of time and bring it with Alice so she doesn’t feel left out when others are enjoying their food. “I used to bake gluten-free cakes and pizza,” Jia said. “But now you can also easily buy them for an affordable price in the market.”
Still being able to enjoy her favorite foods was a powerful motivator for Alice to accept a transition to a gluten-free diet; over time, Alice has learned to choose foods on her own. When she is grocery shopping and sees a food she likes, she will ask Jia whether or not it’s gluten-free before deciding to buy it. After overcoming the most difficult and overwhelming concern, Jia has great hope for Alice’s gluten-free journey. “It’s a long journey,” she said. “But I’m proud of my daughter’s progress.”