Subjective Symptoms

When people ask me why I am eating gluten free I sometimes find myself leaving out the seemingly “subjective” symptoms and focus on the more physical “objective” ones. Yet it was my “subjective” symptoms following a gluten challenge that were severe enough to convince me that I never want to eat it again, in spite of my former love of pastries, breads, pastas, and the occasional cookie.

So what were these subjective symptoms?

Irritability.

The smallest things would get me to snap. And there seems to be no brakes. No room for reason to step in. Just escalation.

Brain… just… would. not…….work.

I would feel extremely slow, like my brain ground to a halt. I might find myself trying to decide whether to get groceries today or not and an hour would go by getting super frustrated at my inability to make simple decisions.

Less obvious to myself, but maybe easier to measure, slower reaction times when playing sports or driving.

Now I suspect that these are not truly subjective, just because it’s “in the head”. There could certainly be ways to measure such things.

For example, cognitive functioning tests, reaction speed tests, physical measurements of stress levels, etc.

Even the most seemingly subjective mood can be tracked by various means these days. Especially with smartphone apps/ wearables through activity levels, sleep patterns, and even the tone and speed of one’s speech.

On a side note, I wonder if the sensation of hunger can be objectively measured as well. Perhaps through blood sugar levels?

Mental Health History

Despite a slew of physical complaints and being in and out of the hospital from time to time, my greatest ongoing struggle was with bipolar type 2, according to the current diagnostic system.

The first inkling that something might be slightly amiss was around age 8 when I saw visions and heard voices near daily. This went on for a couple of years but other than that I was a normal, energetic, sometimes extremely persistent kid.

I started to feel a bit numb and fixated on what adults expected of me around age 12, but clear trouble showed up when I was 13. For a couple of years I was miserable, anxious, and just barely holding myself back from suicide with the irrational belief that I would fail at killing myself and make life even worse.

From 15 to 21 I didn’t quite get actively suicidal again, but most of the time I was mild to moderately depressed with occasional dips into more serious territory.

Around 22 I had a lot of angry outbursts, which was new to me, then just before turning 23 I started getting rapid mood swings. By then I was very familiar with depression but mood and energy levels swinging between extremes sometimes within the same day was disorienting and truly alarming. I finally sought help. 

I was prescribed Depakote, a mood stabilizer and anticonvulsant along with a preliminary diagnosis of emerging bipolar. The desperation wasn’t enough to get myself to actually take the medication. In part because my experience with illness and hospitals thus far told me I tend to get every side effect listed on a pill bottle, which most would think is a remote possibility. And the lists that psychiatric medications carry is usually not pretty. 

Instead, with some help I found a therapist who was willing to work with me long term. But even she was tested to the limit about my decision to not take medication. It took months to pull out of the worst mood swings. And then years of therapy to get me functioning at near normal, that is, no longer meets diagnostic criteria. I was extremely lucky to have a great insurance plan at the time.

And now I am extremely lucky to have a spouse who supports me and lets me live a very low stress life. I could structure my day as I wished. I learned everything I could about what will help keep me relatively stable. I tried to sleep regularly, kept a very routine existence, I walked most mornings to get sun and exercise, even tried to keep social schedules fairly even and predictable. My spouse was great whenever I seemed to slip. He would drag me out of bed, push me to shower, take me out to walk, or to eat out, whatever it took to stop the onset of a familiar low mood. 

It can’t be said enough how grateful I am for this good fortune that most people with similar mental struggles just aren’t afforded with. In this near ideal environment we managed to avoid any further major episodes, but there was still something wrong. I felt most of the time borderline mildly depressed, always at risk of slipping further. I would sometimes get bouts of energy and come up with a whole bunch of ideas but never get them done. Even with all the time I had, home was a mess and I still struggled to cook one meal a day. Every mundane decision was so difficult. I constantly struggled with feeling stuck, keeping focus, and general laziness due to lack of motivation and low energy. I assumed these might be the lingering habits of depression from much of my formative years and this ongoing private struggle was my lot in life.

So I was shocked that these lifted when I avoided gluten. About a week in I felt more clarity and energy than I had in a long time. It was like a little glimpse into what life was supposed to feel like, what I was missing all this time. Then after another week, we did a gluten challenge. A couple of hours after pizza I felt irritable. But for a full day we kept eating pasta and bread. I kept getting irritated at the slightest things. Just the day before I had so much fun brainstorming all the things I could do, and now my pencil was stuck on the first line, whether I should get some groceries today or not, for a full hour. 

This was a huge discovery. By banning gluten, or maybe it’s wheat, I got my brain back. 

And then I started to learn a whole host of new things about my body. It seems not just my brain but my whole nervous system was dulled by some reaction to wheat. I had more than my fair share of familiarity with the hospital system throughout my life, most of them, mysterious cause unknown inflammation of organs, some severe enough to require surgery, hospitalizations, or long term treatment. And now for the first time I could discern patterns between my various physical symptoms and food, and mold, etc. In short, I had a whole host of various allergies, both the immediate and delayed types, some mostly localized to the gastrointestinal tract like FPIES (food protein-induced enterocolitis syndrome). 

I also found that high free glutamate foods seem to trigger hypomania. Similar to how the combination of food and exercise can cause allergic reactions (FDEIA: food dependent exercise induced anaphylaxis, for example) the combination of an allergen and high free glutamate seems to bring on migraine in my case. But when I’m successfully avoiding all foods I am allergic to, natural free glutamate, and even MSG (monosodium glutamate), by itself does not seem to cause any symptoms but excites the body. Even one meal of high glutamate can give me such a buzz that I cannot sleep for almost three days straight.

Some of you may know that bipolar people have a reduced expected life span of more than ten years even when we remove those who commit suicide. What we think of as mental illness, is very likely a physical illness with the most worrisome symptom being that of the brain malfunctioning.

The Short

I never imagined I had any food issues until I trialled a gluten free diet to support my partner. I suffered from major depressive episodes since I was thirteen and in my early twenties was diagnosed with emerging Bipolar. Fortunately with plenty of help I was able to keep further episodes at bay but was prone to being mildly depressed. And now for the first time in my adult life I experienced clarity and energy and many physical symptoms that I always lived with disappeared.

And the surprises kept coming. My body started to feel more clearly when something was causing a problem. Within a few weeks I recognized I was allergic to mold and milk, later confirmed through testing. In the following three years I continued to learn more about my own body and about less typical manifestations of allergies in general. I am still astonished by how even severe reactions can somehow be masked enough that it is nearly impossible to pinpoint the cause despite ongoing suffering.

I feel there are still many unknowns and a large gap between research and what is known in the mainstream. The immune system going awry just might be the culprit behind a large subset of unexplained and usually chronic conditions, both mental and physical. Here, I will try to document what I am learning and my speculations.

The Long

I had a lot of chronic health issues, both large and small, that bothered me throughout my life and every once in a while landed me in the hospital. Most of these issues were deemed cause unknown, and frequently was some kind of inflammation of various organs.

But subjectively my greatest ongoing struggle since my teenage years was my mood and energy level.

I only really stumbled upon this because I was trying to support my partner, otherwise I am one that is very unlikely to have thought this “fad” and other food issues would have anything to do with me. I never suspected I had any problem with any food.

Thus I didn’t expect I would feel any different when my partner and I trialled the gluten free diet for two weeks. We really thought my partner might find some relief as he has various environmental allergies and digestive issues. The changes I started to feel was a huge surprise. After about a week my energy level, thinking, productivity all improved. And when after two weeks we ate gluten for a day, within hours I was irritable, then low mood and energy returned, and by the next day my brain felt literally stuck. I couldn’t even make simple decisions and it was a huge struggle to get any work done. Dizziness, headaches, hunger pangs, and many other minor symptoms returned as well.

Many might have tired of gluten free being trendy, but I for one thank this “fad” for totally changing the state of my health and understanding of my own body. It was not the full answer, but the first large piece of the puzzle without which the rest may never have fallen into place.

As it turns out, gluten was only the tip of the iceberg. Within a couple of weeks my body started to recognize allergies to milk and mold. And when I removed these offenders I recognized reactions to some tree nuts and shrimp. Since I heard that most adults who self diagnose with food allergies aren’t actually allergic, I got tested. Besides I was in disbelief that I could have lived my whole life without knowing, which some allergists say isn’t possible. But to my shock, my skin prick tests actually confirmed positive for milk, some tree nuts and grains, dust mites, and aspergillus mold.

Perhaps gluten has a dulling effect or because I had multiple allergies and all were eaten fairly frequently my whole life, my body was doing its best to adapt and each individual reaction was covered up.

After the gluten free diet we also tried the failsafe diet, as again we suspected my partner may have some food chemical intolerance. At one point we removed all processed foods or eating out and made everything from scratch at home, all the while tracking everything we ate and our symptoms. Sometimes it took a lot of trial and error to figure out what was really going on. For example in the beginning I frequently wondered if I was being “glutened”. Sometimes we were led down strange paths, ironically because we trusted what is supposedly true for most people. Ultimately it took nearly three years but we now have fairly clear answers for ourselves mostly thanks to the data we recorded of our diet.

This journey made me aware of many lesser known aspects of food allergies and sensitivities along with the discrepancy between mainstream knowledge and what can be found in research literature. It was interesting to observe how fervent people can be about their and sometimes even other’s food choices. I noticed possible connections between food and chronic illness. Also this strengthened my hunch that mental illness will eventually be explained as physical illness.