Gluten Psychosis: How My Diet Almost Killed Me and Put Me in a Psych Ward (Twice)
In 1985, my parents met in a psych ward. They both worked there.
In November of 2016, my life changed forever and I didn't even know it. I was twenty-three and pursuing my master's degree at Wichita State University, states away from home. I loved my job, and I was super happy with my cat and my boyfriend. Joan Didion wrote, "Life changes in the instant. The ordinary instant."
Suddenly, I had my instant-I was walking around the grocery store with my boyfriend and I got a headache. Just like that. I was visibly spacey, so my boyfriend asked if I was okay. "I'm probably fine," I said, my world blurry. "I just need to sit down."
Except it didn't go away. I was in and out of appointments in this crazy doctor whirlwind, taking tests, pleading with professionals to take my symptoms seriously. Oh, to be young and female and a student and sick: the perfect storm to be dismissed. I had a constant, intractable headache, distorted vision-like life was a 3D movie-memory loss, compulsive behavior, tremors, and cognitive decline; I was not acknowledged.
Every doctor told me it was stress. Every psychiatrist told me that it wasn't. Regardless, I had zero leads. My tongue was stark white and tasted bitter so I asked a general practitioner if it was a fungal infection (oral thrush). He said that it wasn't a big deal and to lay off Dr. Google.
And so my head still pounded. I did yoga; I meditated. I started passing out. Then, I began to forget. I called my parents while I was walking, while I was driving, asking them to remind me. What am I doing. Where am I going. My confusion worsened. I went from giving lectures to losing the ability to find the words to speak. I started losing weight at a rapid rate; I wasn't sleeping for days at a time. Then, I wasn't sleeping for weeks at a time. I was hijacked. On December 12th, I administered my students' finals and flew home. I missed Christmas with my boyfriend's family. For the holidays, I paced around my parents' house, skinny and paranoid. Sometimes we forget that the brain is an organ and identity is organic.
Then, on December 21st, 2016, it just went away. Vanished. I looked around, and it had disappeared how quickly it had arrived. My family celebrated. I had a 72-hour stint in a psych ward for my safety; they said it was probably hormonal. So, I got on the next flight out to Ohio to spend New Year's with my boyfriend and his friends.
All of 2017 was flawless, aside from some seemingly-innocuous rashes. My family and I moved on. My boyfriend and I taught a literature class that we designed. Everyone wanted to return to their normal lives. What a freak, isolated incident that was.
Obviously, we were wrong. On January 3rd, 2018, it came back. I was on vacation, sitting in my parents' living room, and my world flipped out of focus. I knew immediately that it had returned, but I didn't have the heart to tell anyone. I figured that if ignored it long enough, it would go away eventually, and I could continue living my wonderful life. My boyfriend and I drove nine hours from Texas to Kansas, just for me to fly back in mid-February, paranoid, forgetful, lost in constant pain. Since then, I've seen nearly twenty specialists and have been in and out of hospitals for weeks at a time. Advocating for your health is a full-time job. I had every blood test possible, even autoimmune panels. I went to a rheumatologist and a geneticist. We spent thousands of dollars, some out of pocket. I was forced to learn the language of pain. My new symptoms included bradycardia, derealization, seizures, and psychosis. I lost forty pounds in a month; imagine watching yourself slowly die and not knowing why.
When Western medicine fails you, where do you go? I joined every Facebook group for every disease I could think of, obsessing over responses. I diagnosed myself twelve times a day. If you're paranoid that you're a hypochondriac, does that make you an automatic hypochondriac? And when we exhausted all the specialists we could think of, we consulted every "woo-woo" avenue. I tried everything anybody recommended, desperate for any sign of relief. I saw holistic doctors, tried alternative medicine, took the hundred-dollar snake oil. A therapist told me that my pain stemmed from who I was in a past life. A doctor accused me of faking my symptoms to get on disability. Another doctor told me to "just eat a steak." I started to doubt myself: is my pain even real? From acupuncture to coffee enemas-nothing helped. I basically hadn't slept in four months. My mom put me on a strict gluten-free diet-which I thought was useless-and I didn't improve. I missed AWP and I didn't graduate on time with my cohort. My heart broke daily.
In early April of 2018, I had my first seizure and my second stint in a psych ward, this one lasting for a week. My symptoms absolved in late-April-or early May? Honestly, my memory is really fuzzy-but we knew, now, that this condition, whatever it was, was episodic. Because my condition could return, we lived the summer in fear. That summer, my sister, aunt, and I all got solidarity tattoos of bluebonnets. My family watched the movie Brain on Fire, and it reminded my mom of me so much that she threw up. I got two remote jobs, attended a chronic pain support group, and eventually my boyfriend and I moved from Kansas to Texas (because he's getting his PhD!).
For Dr. Iris Wingrove, October 4th was just another day at work. For me, though, it was the day she saved my life. I came into her office with a super-detailed list of my symptoms, half-expecting the "medical maze." But she listened to me. I felt truly heard for the first time. She listened to all of my symptoms: the headache, the blurry vision, the confusion, the loss of memory, the isolation, insomnia, agoraphobia, weight loss, hallucinations, compulsive behavior, flat affect, paranoia, and even the cold sensitivity, excessive sweating, and lack of bladder control-all of it. Dr. Wingrove pulled out a model of the brain and walked me and my parents through the limbic system. All the dysautonomia, the constellation of symptoms. I was diagnosed, clinically, with limbic encephalitis.
On October 23rd, 2018, the damn beast came back. My heart rate plateaued at a fun 170bpm, and I was ambulance'd to Dell Seton in Austin. But this time was different. While I was asymptomatic, Dr. Wingrove had ordered a comprehensive celiac panel, and my antibodies were so high that the test stopped recording them. An endoscopy at Dell Seton confirmed the celiac diagnosis.
It made sense because I was homebound my junior year of high school because I was so severely anemic-celiac causes malabsorption-but we pinned it on my period at the time. I mean, my body had always been weird: I was born with floppy baby syndrome (low muscle tone), I had a grapefruit-sized ovarian tumor when I was nine, and pica when I was sixteen. It all gets pushed together.
At Dell Seton I saw tons of teams of neurologists a day. My parents and I fought for plasma exchange, but some doctors agreed and some didn't. Eventually they caved, and I got a heart catheter. With the good plasma fighting my naughty antibodies (in a classic Osmosis Jones fashion), and a strict gluten-free diet, I greatly improved. Friends came to visit me in the hospital, and there was a lot of hope. However, I left the hospital with my personality intact, but my head was strangely tingly.
I kept up the gluten-free diet, but a bit loosely. I had been misled by so many other specialists that it was hard for me to accept that something as simple as my diet could make me go insane. And, to be honest, whenever I had heard "gluten-free" in the past, I thought of it in a health-nut, mommy-blog kind of way. Boy do those moms have it right.
On December 9th, 2018, I went into anaphylactic shock after eating pad thai. Head to toe in giant hives. My immune system was waging a war and I was caught in the crossfire. For the first time in my whole life, my body was telling me what it couldn't tolerate. But still, I tried to explain it away (to be fair, I was experiencing psychosis, okay?). I asked an allergist-immunologist if someone's peanut allergy could be infused into me via plasma, like science fiction. That's not a thing, and I tested negative for peanut allergy. Then, insurance approved IVIG (immunotherapy)-which took a LONG, exhausting time to approve-so I started getting infusions in my apartment, desperate to not miss another Ohio Christmas. But it didn't take at first. On December 22nd, I got my first publication in Hobart, which felt like a fever dream.
So, because my mom is the strongest, most-determined woman on the planet, she booked the whole family a flight to the Mayo Clinic in Rochester, Minnesota. Mayo revealed that I had a connective tissue disorder and aseptic meningitis (likely from the immunotherapy). Still, though, I wasn't feeling any better. I wondered, like, if Mayo couldn't fix me, who could? Was this the end of the rope? Except it wasn't fine, because I had celiac disease, but we hadn't completely made the connection. We slept through New Year's in a Minnesota hotel and flew back to Texas in 2019. At home, I blacked out and faceplanted into an end table and busted up my lip.
I can't really tell you the exact date that it donned on us. For me and my mom, it was like we had the same epiphany in different rooms. I was on a forum for people with depersonalization/derealization disorder, and I saw it on post after post: CUT GLUTEN. CUT SUGAR. CUT DAIRY.
All this time, we thought the problem was with my head when the problem was in my gut. Why would we consider that when I didn't have stomach issues? I had been cutting gluten, but not the other two. I ate a pack of Airheads-my favorite-and my tongue turned white. So, I kept up with the home IVIG infusions and went on a complete anti-inflammatory diet. I have-what I call, anyway-autoimmune celiac-limbic encephalitis.
It all had to happen in the order that it happened.
I had to have plasma exchange and IVIG first, in order to introduce good antibodies. Then, I had to maintain a very, VERY strict gluten-free, sugar-free, and dairy-free diet and lifestyle. A couple days passed, and I kept feeling better and better. Parts of me were growing, healing. I broke out with a bunch of fungal infections-oral thrush and ringworm-because of candida (your body's natural gut-fungus [yes, you have fungus/flora in your gut, Google it]). For the first time ever, my recovery didn't feel like a mystery. I live less in fear of myself.
I'm not saying that things are perfect; I still have a lot of healing to do. I'm still experiencing some neurological issues like tics and tremors and memory lapses and weird vision, but it'll be okay. I'm going to be okay.
If I could go back in time and not experience any of it, I would in a heartbeat. It was an unthinkable nightmare. But, I can't, so I must make meaning.
For now, I'm going to need a lot of time and the road is trial-and-error; I'm still breaking out in little hives from certain things. I'm still having seizures. Recovery is not a linear experience. And I'll have to tote my own special food around forever, but it's doable and it's worth it. I have to overhaul a lot of my own life, from bread to concealer (I could use glutenful makeup and then touch my face and get my hand in my mouth or something. Yeah, I'm that sensitive). Also, I carry two EpiPens on me at all times now, so that's new. Fortunately for me, there are more non-gluten options than ever. Unfortunately for me, most of those non-gluten options are very expensive.
All I can think about are undocumented cases or misdiagnoses; I can't wait to help others and spread awareness. If I was a woman in the 50s, I'd be locked up. And it seems like a really rare condition, but the terrifying reality is that, well, maybe it isn't. There is clearly a relationship between celiac disease and encephalitis, but there's not much research out there. Celiac disease can wreck you neurologically without any stomach issues.
If I can prevent at least one person from having to go through what I went through, that would be awesome. If I can convince one doctor that, if a patient presents with a treatment-resistant, intractable headache and/or psychiatric issues, they should run a celiac panel or endoscopy, that would be awesome. Again, there is still very little information on this disease; we are understanding and learning more about it in real time. You realize doctors are human.
It's so wild-even though I'm still experiencing some issues, I have this newfound energy. I have had this condition my whole life, but it didn't start attacking my brain until my mid-twenties. Encephalitis tends to do that. Other than that, I've just been sluggish and real vitamin-deficient. I'm like, man, is this how all y'all been living your whole life? I'm shook.
As for what I'm doing next, I'd like to film a video with my parents where we recount the whole thing. I want the caregiver perspective-it's vital. I'm outlining all the details, but it's going to take forever. I want to get the details right, and, since I documented the past two years very well albeit erratically, I want to include lots of pictures, screenshots, videos, etc. Oh, and I want to interview patients and doctors, too. I think that'd be cool.
In addition, I'm writing a nonfiction book. I don't know if it's any good, because I wrote a majority of the first third during psychotic episodes. I wrote frantically to leave something behind, just in case. So, there's that.
I have a lot of people to thank. First of all, I want to thank my damn self. Here's some shit I did while antibodies were literally attacking my brain: taught for two months, graded papers, wrote some really bad poems, got a tattoo, drove eight hours, helped my mom navigate six-lane highways, had four spinal taps, two root canals, got shots in my head, took my comprehensive exams (and passed!), and put up with some real arrogant pricks with degrees in frames on walls. Your body is a map, but some doctors read it upside down.
Through this disease, I have met and reconnected with so many incredible, extremely empathetic, absolute angels. If you've supported me or reached out or even just sent a prayer up in the past two years, I deeply thank you. I never in my life thought that an entire community would come together for me; I was in prayer chains of people who had never met me, that only knew my name. That is a love bigger than me.
I want to thank Dr. Wingrove for giving me my life back. I want to thank my Dell Seton and IVIG nurses for all their care. I want to thank Dr. Erica Rivas-Rodriguez, my neuroimmunologist, for educating me further and giving me and my family peace of mind. I want to thank Dr. Eimile Dalton, my gastroenterologist, for putting the rest of the puzzle together: my genetic predisposition, connective tissue disorder, and floppy baby syndrome put me at high risk for celiac and low bone density. Dr. Dalton, you made my life make sense.
I want to thank women like Susannah Cahalan and Jennifer Brea for paving the path for me to walk. I want to thank all the warriors that I've met online and through forums-I wish the best for all of you. I want to thank my amazing friends who came to visit me at home and in the hospital. To my boyfriend: I promise you a million more Christmases, and a million more with snow.
I thank my family, immediate, extended, and not-even-blood-related (but if we ARE blood-related, please get tested for celiac!). We're stronger and closer than ever. Specifically, I thank my sister for her big heart and unconditional, never-skeptical support. I thank my dad for teaching all day, coaching soccer until 6:30pm, driving an hour to the hospital, staying overnight, sleeping in a hospital recliner, and driving back to work at 5am the next morning just to do it all over again. And I thank my mom for her indescribable strength, and for not murdering me when I was a total bitch to her during psychosis. She is the toughest and kindest woman I have ever known.
In 1985, my parents met in a psych ward. They didn't know their daughter would end up in one someday, but she did, and she fought, and she lived.