With a reference to my favorite Otto Preminger movie, and being recently glutened, I decided to write up the symptoms I experience when I accidentially have gluten. At this point, it’s clockwork. I know it when it happens and I can see it coming from miles away. Once I see it, it’s unable to be prevented, and the only solution is to just something I have to deal with.
First, I feel my tongue irritated. It feels like it’s been rubbing against your teeth, as if your teeth are broken, and it’s all raw for no reason. That’s the initial sign that something’s wrong. I can tell immediately, because it comes on suddenly and gives me pause whenever I’m either eating or drinking. I know something bad is soon to follow.
Mentally, I start to deteriorate. If I’m reading a paper that I’ve read before, I can’t focus and I can’t remember the point. I’ve had this happen with papers that I’ve read 25 times over, like the CRDT paper from Shapiro. If it’s something new, I can’t remember anything I’ve read and I can get halfway through the paper before I remember what the problem the paper is addressing at all.
Emotionally, I’m off the rails. I can’t focus, I feel terrible depressed. I cry spontanously for no reason; it doens’t matter what I’m doing, I just feel terribly and uncontrollably sad in the most general way possible. I’m not upset, I’ve just got an overwhelming sense of dread. This comes with anxiety and lasts for days.
Fatigue. I’ll sleep 12 - 14 hours a night and I’ll wake up and snooze for the next two hours. It will take me about 5 hours to actually fall asleep – presumably because I’m so exhausted I literally cannot stay awake anymore, and I’ll wake up unable to think, feeling like I’ve only been asleep for about 15 minutes. This will last for usually 5 days at the minimum.
Abdominal pain, lower left side, intestine. Incredible pressure and pain. Day 2 begins the phase where I am unable to go to the bathroom for around 5 days until it passes.
Anxiety, in an overwhelming amount. Increases as the days go on. Becomes so strong, not even giving conference talks can compare. Borders on levels where I feel like I’m going to pass out in meetings, at my desk. I practice meditation and controlled breathing just to keep me from passing out. At points, it’s so strong, I have to tell myself it’s not a heart attack and it will pass very soon.
Since my intestines are basically no longer absorbing nutrients from the food, my appetite returns. I can easily drink 5 liters of water in a hour and my appetite is insatiable. Previously, I’ve eaten 2lbs of bacon in a single meal; I’ve gone to the supermarket and bought two bags of food and eaten it all in around 3 hours. I’m still hungry after it and it only complicated the matter that I’m unable to go to the bathroom. I end up feeling worse.
The inability to relieve myself only further perpetuates my anxiety. I get restless legs, causing the inability to sleep at all. My body aches uncontroablly and I have to keep shaking to maintain any semblance of sanity.
I lose my hair.
I get extremely bad escemza and my scalp begins shedding. It aches uncontrollably for the next few days and sheds accordingly.
I’m massively fatigued.
The mental symptoms disappear. This is curious, because it happens all of a sudden. Lying in bed, the mental symptoms dissappear almost immeditaly. I’m feeling really awful and then all of a sudden the fog lifts and it’s as if all of my control returns almost immediately that I don’t even realize what happened.
I barely remember what happened during the period where I was affected. I remember major events that happend, but if I try to recall specifics about what I did during the period I was feeling really awful, I can’t.
Now that I’ve seen the effects of glutening for over a year, I’m able to know precily when it’s coming and adapt accordingly. At this point, the symptoms happen on a very predictable schedule, and I’ve learned to identify them and know what’s happening. Knowing what’s happening is the first step towards not letting it get you down, and having a timeline is useful in knowing precisely what will happen when, what to expect, and how to deal with feeling better in a more controlled way. Unfortunately, once it happens, there’s not much you can do and so you have to just ride it out until you will feel better.
The scariest part of this whole experience is how every time you make a a mistake, you’re literally reducing your own life. Even if you order gluten-free and get served gluten (which, has happened multiple times in Seattle.) Sometimes, you feel so shitty that you forget that one small mistake is slowly eating away at your intestines and there’s nothing you can do; it’s hard, bceause you are so concentrated in feeling better in the moment, that you forget the long term effects.
In retrospect, I’ve relized that lots of the failed relationships and problems I’ve had with people has been related to gluten. It overwhelms my life. I spent many years dealing with these effects before I identified it was the issue. I was moody, depressive, problematic, but now that I’ve understood the problem, I’ve at least learned to identify it, harness it, deal with it. I’ve learned to avoid major decisions when I’ve been glutened; I’ve learned to avoid confrontations when I’ve been glutened. Gluten overwhelms my life and I work increasingly hard to avoid it. My easily broken foot: probably gluten. I have weak bones, I have a weak immune system, I have a weak emotional tolerance. It controls and orchestrates everything. I have to work doubly hard to avoid it. I do, but sometimes I fail. It’s not easy. Gluten-free only gets you so far. Conferences, travel, all pose risks. I’m only safe at home when I can control every single ingredient, every single step of preparation. It’s a chore, but, it’s the hand I’ve been dealt.