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Jolted out of my slumber. Sitting straight up I look around. I start to panic. There is a man there watching me sleep. I yell at him and try to make myself feel big. I clumsily clamor for the knife I know I have hidden under my mattress somewhere. Somewhere… Where is it? I feel like I’m going to hyperventilate. What is he doing in my room? Why is he just sitting there? Why doesn’t he say anything? Questions…
I start to wake up more. I slow my breathing. I ground myself. I concentrate on the sound of my heartbeat that is pounding in my chest. It is so loud, I wonder if he can hear it. I take a deep breath. I stand up. I walk past the man, watching him as I walk past. He doesn’t watch me go. I ritualistically flip on the light as I leave the room and head for the bathroom. I come back and he is gone. I sit on my bed, clutching my knees to my chest. Rocking myself calm. Blurry eyes, moistened from tears of fear. Rocking.
“It was just a night terror. It wasn’t real.” I repeat to myself over and over. I climb back into my covers and eventually calm myself enough to sleep.
My whole life, I woke in the middle of the night and saw things as clear as awake that were not there. It is common for children to be scared of the “boogeyman” that hides in the closet or under the bed so it was not uncommon that I too jumped over my bed to avoid what was under it, that my closet doors had to be closed for me to fall asleep or that I slept with the blankets over my head so that I couldn’t see them—the monsters. The difference was that I actually saw them—my imaginary fears looked as real as my parents. But to everyone else, I was a normal child with normal fears.
As an adult, for a couple years I even became used to seeing “people” in my room—sort-of. I would wake with the normal jolt of panic, watch the person for a minute and then lazily fall back asleep. I slept with a knife and a flashlight, sometimes under the mattress, sometimes under my pillow and sometimes clutched in my hand because of these almost nightly encounters and my fear that someday it would be a real person that I would mistake for a “night terror”.
Had I ever been taken to a psychiatrist, I would have been labeled borderline schizophrenic, maybe hospitalized and definitely drugged. I never was taken to a doctor for it and as I had grown up with this condition I called “night terrors” I had grown somewhat accustomed to it and had learned to hide this “condition” from family, friends and lovers.
These “night terrors” persisted through grad school, through clinical herbalism school, through natural foods culinary school and into the beginning of holistic nutrition school. They were just a part of who I was—I didn’t consider them a health concern. Through all of my training and education I adopted a healthier lifestyle, was physically active and ate healthier. I found it fun and challenging to cook gluten free and vegan after culinary school, so I only actively consumed gluten when eating out. Even though my “night terrors” persisted, they were shorter in duration and what I saw would dissolve usually within a minute or so of shining my flashlight on it. I didn’t even have them every night anymore.
As part of the nutrition program I was in, I succumbed to doing a gluten elimination diet. I thought nothing of it, that it would have no effect, because I had no digestion problems and I consumed very little gluten. After a couple months of the elimination diet, I thought nothing had really changed. I very strongly remember that it was my favorite month of the year… February (in 2007) meant it was Stout Month at the Mountain Sun (a local brewery in Boulder). And so, happy that I had “passed” my elimination diet, I ordered a chocolate cherry stout and a grilled cheese, avocado and tomato sandwich on rye bread. I had no idea that, that meal would be my last drink of a good stout beer or that I would never taste rye again.
That night I had night terror after night terror after night terror. They persisted all night and even included tactile sensations. I’ve never been so scared in my life and have never had such a horrific experience as that night—too horrific of a memory for me to even share here.
It was gluten. Night terrors (aka schizophrenic hallucinations) were my symptom, not diarrhea, constipation, stomach cramps or bloating. For me, it was purely neurological. Well, that and later I discovered that I had developed Hashimoto’s thyroid antibodies (which are a result of your immune system being up-regulated and your system being inflamed, almost always as a result of the body attacking the thyroid, mistaking it for gluten). I also now notice brain fog when I experience gluten cross-contamination. Although recognizing gluten intolerance as the cause of my neurological symptoms was a strange realization, it was a happy one. Finally, I would have ongoing peaceful sleep lasting the entire night. Finally my adrenals would be given a break.
I never tested for celiac disease; I was unwilling to add gluten back into my diet for an extensive amount of time to test when the tests are so prone to false-negatives. Knowing whether I have celiac disease or not is not important to me. I am gluten intolerant. That’s all I need to know. I’ve been gluten intolerant my entire life…not schizophrenic and not able to see ghosts. I can’t have any amount of gluten, none. I was lucky because I had already learned to cook gluten free through culinary school and can order my own blood tests to confirm nutrient levels, antibody levels and such. Now, my goal is to spread that support to those that don’t have those options.
As a Nutrition Therapist and Clinical Herbalist, I test almost every client for celiac disease and non-celiac gluten intolerance (and often for other food intolerances too). I don’t have the blindfolds on that many in the medical profession do that pigeon hole their patients into an expectation of specific symptoms for a specific condition or that non-celiac gluten intolerance isn’t as dangerous as celiac disease. Through my personal experiences and those of my clients, I help educate people that celiac disease is just another symptom of gluten intolerance and that not having celiac disease is not a free pass to eat gluten if you are symptomatic. Whether ingesting gluten causes the body to attack the digestive system (as in celiac disease), the joints (as in autoimmune arthritis), the thyroid (as in Hashimoto’s and in Grave’s), the brain (as in autoimmune Alzheimer’s) or whether gluten is creating an inflammatory state with an upregulated immune system that taxes the adrenals and risks the development of an autoimmune disease or distracts the body from killing mutated cells in the body (as in cancer), causes anemia, osteoporosis or one of the other 200 or so different symptoms associated with BOTH celiac disease and non-celiac gluten intolerance, it doesn’t matter. Celiac disease is a symptom of gluten intolerance and it is awful, but people with non-celiac gluten intolerance can have to be just as gluten vigilant. We are all in this together.
As a healing foods chef, I only teach gluten free cooking classes (and usually grain free classes), because whether someone is gluten intolerant or not, we can all thrive more if we eat less grains and more nutrient-dense non-processed foods. The reason gluten intolerance is so prevalent is because gluten is not digestible, but is in everything and in this modern age when leaky gut syndrome is so prevalent, it is no surprise that gluten intolerance is so widespread. Those that are not gluten intolerant would do well to not “push their luck” and be mindful of their consumption of grains.
When I have any amount of cross-contamination, my sleep becomes disrupted, I have a very hard time falling asleep and the night terrors return. The intensity of the night terror corresponds with the level of cross-contamination I receive. Three nights ago I had a “night terror,” I saw a man watching me from the bathroom in my room. I sat up and watched him and as I watched him, strangely calmly, I thought through about what I had eaten that day, wracking my mind for where the cross-contamination in my day could have come from. He backed away. I went back to sleep. The next morning, I was in the bathroom and noticed that the screen was completely off the window. Possibly, a few nights ago, my fear came true and someone broke into my house but I thought it was only a night terror. I’ll never know. Vigilance.