From nearly his conception, our son has kept us on our toes. Abnormal ultrasounds, a NICU stay, eczema, colic, constipation, sleepless nights, and all of those new parent worries were dealt with early on. Despite all of this though, we still managed to have a precious healthy boy that was meeting all of his milestones and typically developing. In fact, at his 18-month checkup, he was evaluated as being developmentally “right on track,” happy, engaging, pointing and even saying, “I love you.” Shortly after this checkup, our world started to crumble and our faith was put to the test.
One of the first and most noticeable changes we saw in him, was the development of an intense uncontrollable seizure-like shake (the movements in this video were very mild compared to what they developed into). These shakes were not simply happening once or twice a day, but nearly 30-40 times a day! His little hands would ball up into fists, his rigid body would shake uncontrollably and his face would grimace as if he was in pain. As a parent, these shakes were a clear sign of a bigger neurological issue, not to mention terribly frightening. The shakes were not the only changes we had noticed. He stopped responding to his name, lost most eye contact and slowly lost his words. By his 2 year/24-month checkup, he had lost nearly all of his language and we were sent on our way to early intervention and therapy evaluations. Within weeks our state’s early intervention team confirmed he was showing signs of Autism and Sensory Processing Disorder (SPD). According to their evaluations, he was considered high to moderately functioning on the Autism Spectrum and suggested we get him as much therapy as possible.
I was devastated! Grieving the child we had lost and fearing the unknown – if we would ever get him back. Maybe it was because of my faith or fear, but I knew I had to act quickly. That fear of mine turned into determination and three days after the assessment, our family went gluten and casein (a protein found in dairy) free – cold turkey. Though extreme, it was the only way I knew how to help and I was determined to get our boy back.
There was no way in those three short days I could confidently identify all of the ingredients containing gluten and casein, so I loaded up my grocery cart with real whole foods and started cooking. Prior to this, I had very little experience with cooking, especially from scratch. Within days of these diet changes, we noticed changes in our son. He seemed brighter, happier and his speech improved with the addition of two or three new words. Most noticeably, his shakes decreased substantially. Within weeks they went from 30-40 times a day to only about 4-6 a week. This alone, was an indication we were on the right track and these shakes became the primary way we would gauge his inflammation. We were thrilled with these changes but prayed that we would continue to be led to what was best for our son.
It was about this time that we enlisted the help of a local integrative board-certified pediatrician. She was well-known in our community for improving the health of children with nutrition and exactly what we needed at the time. Through her, we started testing, ran a ton of labs and were introduced to Dr. Reid’s TED Talk. Glutamate, once an unfamiliar word, became the focus of my research. The reason why our son had improved with the removal of gluten and casein is that they were both high in the amino acid and excitatory neurotransmitter, glutamate. Glutamate (excitatory) and GABA (calming) have a relationship similar to a seesaw; when glutamate is high, GABA is low, and vice versa. Because his seesaw was tipped towards high levels of glutamate, he was unable to tolerate any additional sources of free glutamate in his diet. Gluten, casein, and to a lesser extent, soy and corn contain glutamate as part of their protein structure and needed to be avoided. Gluten and casein were not the only concern, because high levels of free glutamate (MSG) can be found in over 50 different additives in most processed foods. These names can be as innocuous as “natural flavors, citric acid or spices.”
I was disgusted by the deception of our food industry. Sure enough, we started to notice our son’s shakes would occur after drinking “100% Juice” boxes with the added ingredient, citric acid, a source of glutamate; or after consuming gummy vitamins with, gelatin, another source of glutamate. Actually, our son’s shakes only occurred after consuming one of the many sources of hidden glutamate and would often be accompanied by epic tantrums and sleepless nights. After repeatedly witnessing these behavioral reactions to glutamate, my husband and I were certain this was a missing piece to our son’s puzzle. This new low-glutamate diet/REID had to become a way of life for us, truly making it a huge lifestyle change. Within our first month of eliminating processed sources of glutamate, our son only had one shake and the fog lifted. His speech, occupational and physical therapy sessions started to improve, his eye contact was getting better and he started to mimic or copy us.
I often describe the experience as if removing processed sources of glutamate and eating real whole foods, allowed for his brain to function properly. He still had some catching up to do, but the forward progress was invigorating enough to keep us on track. By the time we were finally able to get in with a Developmental Pediatrician, he no longer qualified for an Autism diagnosis. However; though improving, we still had our struggles to overcome: apraxia (severe expressive language speech delay), mitochondrial dysfunction (associated with low muscle tone/hypotonia), ataxia, borderline cerebral palsy, visual processing disorder, MTHFR, eczema, motor planning issues, etc., and we started working with a handful of other practitioners in addition to reading some of the work by Dr. Blaylock.
He was struggling with many behavioral reactions, even to whole foods. We were also becoming more aware of sources of inflammation outside of diet that was triggering glutamate type reactions or intrinsic glutamate signaling (produced by the body). We have spent a lot of time tweaking our diet and incorporating herbs and homeopathy to help resolve our underlying issues with infections/immune activation/immune dysfunction, histamines/mast cells, yeast, etc. I believe this step has been essential in combating underlying imbalances that were contributing to his intrinsic glutamate signaling, neurological inflammation, and developmental delays.
While our faith has been tested numerous times, we have intentionally made an effort to trust our journey and recognize God’s work in our lives. While I am certainly no expert, I don’t need the science to substantiate the changes we’ve seen. At this moment in time, we have been on a low glutamate diet/REID since early 2014, homeopathy since early 2015, herbs since 2015 and we continue to be amazed by the benefits.
My health has significantly improved as well. I no longer struggle with debilitating migraines, anxiety, and constant underlying irritability and impatience. Our son is no longer considered on the Autism Spectrum. He is within the average range for all areas of development (although some within the lower end of average), his IQ has gone from the 18th percentile (borderline impaired) to the 92nd percentile (superior), averages about one shake every six months and is loving his kindergarten year in his neuro-typical school.
Oh, and those shakes? They were diagnosed by our pediatric neurologist as Complex Motor Stereotypies. Johns Hopkins just finished a study linking them to an imbalance in the neurotransmitters, glutamate, and GABA. While I wouldn’t wish this journey upon anyone, I am so thankful that our eyes have been opened up to the importance of eating real whole food. Food is absolutely medicine.
Three Years Into Our Journey With REID