Some people suffer from food intolerances, causing their bodies to experience immense discomfort which manifests in hyperactivity or self-injurious and aggressive behaviors. Addressing these food intolerances can result in drastic improvement in one’s quality of life. For this edition of the Food and Nutrition Series, Anna shares her journey with the gluten-free and casein-free (GFCF) diet for her son Lawrence. 

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Why did you decide to go with a GFCF diet?

When Lawrence was young, he was very hyper. He always wanted to jump everywhere and had very little attention span. During a medical seminar, I heard that casein, a protein contained in dairy products, might be a cause of hyperactivity in people with autism. I discussed this information with my husband, who is a medical doctor, and asked him whether I should take Lawrence to get checked by his pediatrician. My husband said to just stop giving him dairy products and see how that goes. To my surprise, the changes I observed from Lawrence were quite immediate, and within 3 days, he was much calmer. With his hyperactivity under control, Lawrence was able to focus and learn a lot better. And so, I continued to implement the casein-free diet for Lawrence. 

Later, Lawrence began exhibiting anxiety and self-injurious behavior. I learned that some kids with autism are not able to digest gluten (a protein in wheat products) properly, causing extreme discomfort and neurological suffering. Some kids resort to self-injurious behaviors in order to stop the pain inside. I wanted to see if this was the case with Lawrence, so I put him on a gluten-free diet. This unfortunately cut off a lot of foods that he liked such as pizza and noodles; yet, within 2 months, we saw dramatic improvements, and he didn’t hurt himself anymore. The diet was a success. 

People told me that some autistic kids grow out of hyperactivity after their adolescence phase, so when Lawrence was about 15 to 16 years old, I wanted to see if Lawrence would respond well to phasing out the diets. First, I tried to reincorporate dairy products back into his diet, and it went well. Now Lawrence is able to eat dairy without displaying significant adverse behavioral changes. However, when I tried to reintroduce gluten, I immediately noticed that Lawrence was not responding well to the change. He was still unable to properly digest gluten products, and so to this day, Lawrence continues to be on the gluten-free diet.

Are there any changes in lifestyle that have come with a GFCF diet?

Hyperactivity made it so that learning for Lawrence was incredibly difficult since it was hard for him to sit still. Moreover, it was hard for him to perform basic tasks, such as making conversation with others while he was hyperactive. Thankfully, the casein-free diet was able to help with that, and the gluten-free diet helped stop the self-injuries that he was causing to himself. The diet overall has really helped our lives. 

We are lucky to find out that Lawrence’s behavior was caused by food intolerance. The food was causing so much discomfort in his body that he had little tolerance to do anything else. Imagine if you are constantly feeling sick and still you are being asked to focus, sit still, and learn: it is simply too much to ask for. Thus by eliminating the foods that were causing him discomfort, we addressed the root cause of his behavioral challenges and were then able to see a positive change in his behavior. This is why food is such an important component in the well-being of our children. 

What are the challenges of implementing the GFCF diet?

Any kind of elimination diet is difficult to implement because not only does it require the parent to overhaul their recipes and cooking methods, it also requires the child to sacrifice eating some of their favorite foods. Some parents want to give it a try, but if they don’t commit 100% to it and eliminate all the sources of gluten or casein, they will not see any changes in behavior. Just reducing the amount simply does not work because even traces of the protein can still cause discomfort in some people. Also, you have to give the diet at least four months to see if it works because you have to give the body time to cleanse the system of the element. If you don’t see any difference in four months, it is likely that the food is not the culprit. 

In our case, it was also difficult for Lawrence to transition to gluten-free foods. Lawrence loved to eat pizza and noodles, and it was hard for him to give them up. When Lawrence was younger, I could not find gluten-free pizza dough, so I improvised and used gluten-free waffles, put tomato sauce and pepperoni on it, and called it a pizza. It was good enough for Lawrence, and he accepted that. Nowadays, it is so much easier since all the major supermarkets like Trader Joe’s carry gluten-free noodles, pizza, and more. 

What advice do you have for parents who are facing similar challenges?

Hyperactivity and self-injurious behavior might be rooted in different causes. Every kid is different. The GFCF diet worked for Lawrence, but it doesn’t mean that it would work for all kids with similar challenges because the root cause might be different. Nevertheless, I still think that it is worth the effort to find out whether the behavior is caused by food intolerance. If a child has adverse reactions to those gluten and casein products, then this diet could change their lives and really help them out. It is important to test out the food elimination diets one at a time. In other words, only take away one type of food during a testing period and observe whether the child is indeed intolerant to that food type or not. Of course, this diet may not work for every special needs individual, but taking the time to find out can really help them in the long run.