When we first started diet changes, I was overwhelmed by excitement and fear. Things were great- we had hope and direction. I felt excited and empowered to continue with the removal of glutamate foods because we finally saw progress. Not to mention, I was researching like a fool and connecting excess glutamate to so many of our son’s symptoms. At the same time, I was also overwhelmed with the new food sensitives, underlying issues we were uncovering, and the genuine fear of how we were going to sustain this lifestyle for our son as he grew older. How would I be able to maintain it? If he continued to improve developmentally, would a diet be our limiting factor in experiencing many typical life events? Would he be able to go to summer camp? Birthday parties? Travel? Drink beer in college (yes, this crossed my mind several times)? His reactions to free glutamate (and its various forms) were devastating, wreaking havoc on our house for days- indeed PTSD provoking for everyone involved. About this time, we began to honestly use food as medicine, instead of just cutting out the junk. We worked hard to adjust ratios of diet, get as many plants in as possible, and hack away at inflammation and microbial imbalances with homeopathy and diet.
As time passed, our hope and prayers for him to live a “normal life” became more and more realistic. My new goal began to get us from “managed recovery” to “full recovery.” Yes, I knew, probably better than most, how damaging and neurotoxic free glutamate (MSG) is. However, I honestly still longed for the day where we could have room to breathe- a place to have that rare day for him to partake in a special event without devastating ramifications, a place where we were no longer held hostage to diet. Now, just over six years into REID, homeopathy, and a few other heavy hitters, I am so happy to say that we have reached this point. Earlier this year, we really started to stretch outside of REID by trying new food here and there. Each time, we were pleasantly surprised to see he had no noticeable neurological, behavioral, physical, or gastrointestinal reactions. This lead to many wide-eyed “can you believe it” comments with my husband, and we could feel the pressure start to release.
The Cheese Incident- What lead me to write this post is that these little trial and error situations have lead us to where we are today. For the first time in over six years, my son trialed a piece of cheese last week. Trust me, I over-analyzed behaviors, reactions, and bowel movements for days, before I felt comfortable saying he had no noticeable response. Considering how I always talk about the dangers of excess glutamate and higher free glutamate foods, I didn’t know if I should be embarrassed or proud of this, but I am choosing to be proud. This child has come so far. WE have come so far. This experience does not mean we are now going to be consuming dairy or other higher free glutamate on a daily bases, instead maybe once a year or an infrequent occasion. It does more for my peace of mind to know that our world will no longer be turned upside down if he does accidentally consume a small amount of dairy.
Why cheese? Though dairy does have higher levels of bound glutamate (not necessarily problematic), the processing of it (pasteurization, defatting, fermentation, etc.) is what degrades the proteins into the problematic, free glutamate. Therefore, raw cheese is expected to have some amount of free glutamate, and it should be substantially lower than commercially processed/pasteurized cheese. Additionally, harder aged cheese will have higher levels of free glutamate (parmesan, especially). Because of these relatively higher levels of free glutamate, dairy is inflammatory. Glutamate and inflammation are intertwined, and glutamate is involved in the inflammatory signaling process. Disclaimer: I do not believe it is wise for our children or anyone struggling with inflammation, to consume dairy. I would especially avoid dairy if you suspect Cerebral Folate Deficiency. We trialed this for or our mental health. It means the world of a difference to choose to be dairy-free, instead of living in constant fear of dairy.
To clarify, I have learned enough on this journey to know that health is fragile, and I feel this with every ounce of my being. I cannot even imagine us going back to the Standard American Diet, and foresee us primarily living the REID lifestyle for the remainder of our lives. We still maintain the diet in our typical day to day life- granted our “perfect plate” ratios aren’t always perfect). However, we have reached a point where it’s no longer devastating and life-altering if we have to deviate from diet occasionally. HUGE for our family!! This is, and has always been, our ultimate goal in healing and “recovery.” I share this with the hope of encouraging others that hopefully, one day soon, you too will no longer feel held hostage to diet.