by Katherine Reid
I am a mother of five children. I live in Fremont, California. In 2009, my youngest child, who was three, was diagnosed with autism. The diagnosis came from her social and communication impairment and highly repetitive behavior. She did not play with other children. She had no imaginary play. She made no eye contact with anyone. She had no spontaneous language. She did not understand questions. Her language was restricted to repeating what she heard (echolalia). In other words, she didn’t use language to communicate. She could stack blocks for hours. She would line up toys and have a meltdown if you moved a toy out of line. Everything had to be according to her rules or she was in chaos. She had highly repetitive routines that would escalate into unrest or panic. For example, she would go to wash her hands, turn the water on, turn the water off, turn the water on, and so on. Each time through the routine she would get more upset that she couldn’t stop. These loop-like routines might last hours, typically ending because of exhaustion from crying. She also had episodes of absence (blank stares) that lasted 15-30 seconds.
My husband and I tried a number of popular therapies. We tried Applied Behavioral Analysis (ABA) for 3 months. She got worse; her loop-like routines occurred more frequently. We tried speech therapy for 6 months. It increased her vocabulary, but did not improve her communication in other ways. The third therapy we tried was auditory integration training. We did the full series twice, which took a total of 3 months. There was no improvement. Then she started going to a special-needs school, where each student is given an individualized program. At this point, she was 3.5 years old.
Around the same time that she started the new school, we started changing her diet. I had been looking at nutritional deficiencies associated with autism. As a result, we added green veggie smoothies (for example, kale, cucumber, cilantro, nuts, seeds, fruits, it varied with the season) to her diet, supplemented with a multivitamin, magnesium, B complex, Vitamin D3, Omega 3’s (EPA and DHA) and probiotic blends (a mix of pills from different companies, such as New Chapter and MegaFoods). Within three days, she began to look people in the eye and began responding to her name. Before the autism diagnosis, we had taken her for a hearing test, because of her lack of response to her name.
This encouraged us to think that diet was important. We eliminated gluten and casein (dairy) from her diet. Many parents had seen improvement after they made this change. These changes were often not large enough to make the children no longer autistic, but they did improve. Our daughter’s response was similar. Her social and communication skills improved, but she was still about a year behind her peers. She still had long outbursts and meltdowns. We were sure it was the new diet, not the new school, that caused the improvement because several times she had eaten gluten or casein at school by accident (e.g., pizza) and her language and behavior regressed. This happened about ten times. Twenty-four hours after these exposures, she was considerably worse. She wouldn’t be able to articulate words and her language comprehension decreased. She also became much more emotional and picky (e.g., had to take a certain route home). The regression lasted about five days.
These improvements encouraged me to read more about diet and autism. I read a few clinical studies – there were hardly any. On blogs, I read about parents’ experiences. On one blog – I can’t remember which one — I read a comment from a parent that he found that his son benefited from removing gluten and casein, and, importantly, MSG made his son worse. What idiot feeds his child MSG? I thought. I was wrong.
I have a Ph.D. in biochemistry, with an emphasis in protein chemistry, from UC Santa Cruz. I have spent 20 years conducting research and development on proteins for therapeutics and molecular diagnostic applications. Proteins are made of amino acids, the most abundant of which is glutamic acid. When a protein breaks down, glutamic acid is released. I discovered that I had been feeding my daughter plenty of glutamate. I started researching connections between glutamate and autism and convinced myself it was plausible that too much glutamate caused behaviors associated with autism, as well as other brain disorders. Suddenly I understood why removal of gluten and casein might help. Both proteins have a high glutamate content (= a large fraction of their amino acids are glutamic acid). Common types of food processing break down these proteins. For example, fermentation, ultra-pasteurization, adding acid (such as lemon juice), and adding enzymes (e.g., when making cheese) all create free glutamate.
I started looking into food labels. Glutamate can be hidden in many ways, I learned. For example, “natural flavor” may be up to 60% glutamic acid. Perhaps my daughter had a predisposition to glutamate sensitivity; my research revealed that many of us do. There are glutamate receptors all over the body, including the brain. For example, glutamate receptors in the pancreas regulate insulin secretion. To reduce the amount of glutamate in her food, I tried to remove all processed proteins from her diet. This wasn’t simple. Apple juice may have “natural flavors”. Toothpaste may have glutamate. Our new diet mainly consisted of organic vegetables, fruits, seeds, nuts, meat, quinoa, and rice. We stayed away from any product with processed soy, corn, or wheat (because of the processed protein). Corn on the cob or edamame was fine because they aren’t processed.
This was a huge shift in the family diet and was met with protest. My husband was hesitant because the advice from a team of neurologists had been to try behavioral therapy again. (ABA is one type of behavioral therapy.) They thought a better therapist might help. That was their main advice. They told us they hadn’t seen gluten-and-casein-free diets produce improvement.
In May 2010, we made the big dietary changes. After we started the new diet, my daughter never again had a meltdown. She had had one the previous week. About a month later, at the end of the school year, we were contacted by the special-needs school. They said she had improved so much that she should go to a mainstream pre-school. At this point she was almost four. Her language and social skills quickly caught up with her peers. Of my five children, she is the most social and outgoing. Today, at 6 years old, she attends a public school kindergarten. At a September 2012 parent-teacher conference, her kindergarten teacher was shocked to find out that she had been previously diagnosed as autistic.
I decided to make it my mission to educate and raise awareness of the amount of free glutamate in our food and the health ailments associated with it. The name of my mission is Unblind My Mind. More information can be found at unblindmymind.org.
Katie spoke about this at the first Make Yourself Healthy Meetup.