Journal of Personal Science: One Child’s Autism Eliminated by Removal of Glutamate From Her Diet

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.

7 Responses to “Journal of Personal Science: One Child’s Autism Eliminated by Removal of Glutamate From Her Diet”

  1. Darrin Thompson Says:

    Interesting.

    I’ll go out on a limb and agree with the evil experts statement: “They told us they hadn’t seen gluten-and-casein-free diets produce improvement.”

    IMHO they say that because, in fact, they have probably seen lots of people attempt gluten-and-casein-free diets which produced no improvement.

    Back in the day when autism intervention diets were hard, you couldn’t eat anything packaged or processed. Now there are whole factories making easy processed packaged foods which are GF and sometimes GFCF. And we don’t see any improvement in the kids symptoms. So I fully understand where the medical professionals were coming from.

    “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.”

    That’s hard to do. That’s more than GFCF. That’s old-school GFCF. And it’s probably what is needed to really see an improvement.

    We do something like that, we’ve seen enormous progress in our children who have autism. However, it’s hard to cook _all_ the time. Eating out is a crap shoot every time. At school the most well meaning staff will sometimes make a mistake, feed your kid something off list, and you won’t know, other than your really effective diet mysteriously quits working for a day or three.

    This glutamate angle is interesting. We’ve been pursuing a low lectin approach for awhile but we’ll have to queue this up for later.

    Seth: These results make clear why a GFCF diet could sometimes work, sometimes fail. They sometimes fail because there is so much glutamate in the rest of the diet that even when gluten and casein are eliminated there is still a disabling amount of glutamate left. The real expert failure here is not their statement about GFCF diets, which could easily be accurate, but their failure to learn from this success.

  2. Reanna Says:

    I’ve been meaning to comment for a while:

    The Fertility Awareness Method is another good example of people using personal science to solve problems one step ahead of traditional medicine.

    Here’s a video that gives you some idea of how it can be applied:

    https://kindara.zendesk.com/entries/23375112-Video-Kati-s-Experience-With-FAM

  3. shtove Says:

    Katie Reid is very impressive, and the clip of her little girl at the end of her video is brilliant – so bright and full of character – vid is here (13:35):

    http://www.youtube.com/watch?v=J_ZfIdDCpdU

    But I can imagine other parents who have failed with similar methods getting frustrated with her certainty.

    “There is a real sense in which dietetics is harder than cosmology.” – Martin Rees.

  4. AlexiDSadeski Says:

    Seth, you have been advocating a lot of fermented foods. Does Katie’s research change your mind on that at all?

    Katie, do you see things like sauerkraut having an affect on your daughter? Have you stopped eating fermented foods and would you recommend that to others?

    Seth: No, this work doesn’t change my mind. The benefits of fermented food are clearly huge. Maybe some people are more sensitive to glutamate than usual — perhaps for enviromental reasons, perhaps for genetic reasons. Sauerkraut is not fermented protein; only fermenting protein produces glutamate.

  5. babar Says:

    well she’s lucky her kid wasn’t an extremely picky eater (this means that any change with eating routines causes extreme anxiety) like many kids on or near the spectrum.

  6. Mike H Says:

    I just stumbled on this site, but the older posts on this subject were closed to comments so I just thought I’d comment here. I’m a Vitamin D and sleep enthusiast, but the theory I follow has nothing to do with the time you take Vitamin D. Instead, it’s all about what your level is. (60 – 80 ng/ml being optimal). I didn’t see her theory mentioned anywhere so I thought I would direct you to it.

    http://drgominak.com/

    I also highly recommend her YouTube videos. I think she’s onto the real mechanism between Vitamin D and sleep.

  7. Katie Reid Says:

    In response to Alex about fermented foods: the fermented processes that I find concerning are when we fortify our food with protein (such as in the baking of many wheat breads) and then add high concentrations of bacteria or yeast to speed the fermentation process and “add flavor”. The natural fermentation processes that are slow and on foods naturally low in protein are not the issue.