The Discouraged Patient Dilemma
There’s a concept in economics I’ve always found fascinating — the “discouraged worker”. Discouraged workers are unemployed folks who’ve stopped actively looking for a job, and as a result, don’t show up in headline unemployment. They exist, but they’re easily overlooked. They’re in this sort of statistical limbo.
How closely do we track the equivalent in healthcare, the “discouraged patient”? Those who, having been let down by mainstream medicine, turn to riskier alternatives and become less visible to the healthcare system?
Two years ago, I found myself asking this question after receiving an unsatisfying diagnosis for my own health issues. In this post, I’ll share my story — how I got sick, my two-year journey to find the root cause, and some lessons I learned along the way.
My Story
In 2019, I suddenly developed three, seemingly unrelated health issues. Each started out mild, but grew more severe over the course of a few months.
1. Food allergies/sensitivities
Every day, I’d eat the same kale, arugula, and chicken salad for lunch. After months without issue, I noticed it made my throat itch. Within weeks, itchiness turned into constriction, coughing, shortness of breath, and dizziness. Before long, this happened with other foods, especially those I’d eat most often: raw vegetables, fruit, fish, and almonds.
By early 2020 I was violently choking down most things I ate, chasing each bite with a large gulp of water and a big gasp for air. The shortness of breath was so severe that twice I landed in the ER, where thankfully OTC antihistamines were enough. At its worst, I’d spontaneously get large, purple blood blisters in my mouth after eating.
2. Acid reflux
At around the same time, I started suffering from debilitating heartburn. From the moment I woke up to the moment I fell asleep, I couldn’t go more than 30 minutes without acid shooting up my esophagus to the back of my throat.
Heartburn turned into regurgitation and a chronic cough. I’d feel uncomfortably full after just a few bites, but then wake up ravenously hungry at 4am. Basic movements — walking, lying down — were incredibly aggravating. My throat was so lacerated that it often felt like I was choking.
3. Anxiety
I didn’t notice it in the moment, but I’d become afraid of virtually everything:
- Falling asleep — what if I never wake up?
- Living in a high rise — what if it caves in?
- Sitting in a car — what if it crashes?
It’s surreal to say now, but these thoughts felt perfectly logical at the time.
By mid 2020, eating became so difficult and daunting that I lost 26 pounds. My sleeping heart rate fell from 44 to 28 bpm, and I consistently had low blood pressure. Getting out of bed too quickly sent my head spinning and made my vision go black. Twenty minutes of exercise would fatigue me for 3 days. It felt like I’d lost control of my body.
Over the course of 12 months, I saw 9 doctors across 5 specialties and did over 25 labs. I was screened for everything from HIV to H. Pylori. I had an upper endoscopy, a barium swallow test, a treadmill stress test, a heart ultrasound, a 48-hour Holter test, multiple skin-prick allergy tests, and dozens of blood, stool, and urine tests.
Every single test came back negative.
When it was all said and done, I was diagnosed with gastroesophageal reflux disease (GERD) and oral allergy syndrome (OAS), also known as pollen food allergy syndrome (PFAS). While these diagnoses accurately matched most of my symptoms, they were little more than labels.
I was offered pills to manage my symptoms by each specialist: Nexium for the reflux, Xanax for when the anxiety got severe, and Rupall and an EpiPen for the allergies. I was told to simply avoid all the foods I’d become sensitive to.
As far as my doctors were concerned, the investigation was complete — I had a diagnosis and a treatment plan that resolved my symptoms. But the more I pushed for a true diagnosis or did additional research for tests to run, the more that doctors asked that dreaded question: “Are you sure it’s not in your head?”.
No one had answered the most important question — what was the root cause?
At this point, I had three options:
- Doctor’s orders: Take the pills and avoid the trigger foods, presumably forever.
- Second opinion: Find a new set of doctors (perhaps in the US instead of Canada) and begin the process from scratch.
- DIY: Take matters into my own hands.
At 23, I wasn’t prepared to take pills for the rest of my life. As for getting a second opinion, not only did COVID make this logistically difficult, I’d grown pessimistic that it would result in a different outcome.
I picked the third option. Armed with little more than grade 12 biology, I became obsessed with learning everything I could about my condition. For the next 12 months, I dedicated myself to research and experimentation.
Research
I spent hundreds of hours collating information from across the internet:
- Academic research: I learned how to study studies and pored over the latest literature on PubMed. Key learning: there’s a substantial delay — often cited as 17 years, although inconclusive — between research publication and its integration into clinical practice.
- Online communities: I learned from the stories of anonymous Redditors on r/GERD and r/FoodAllergies. These communities are growing rapidly, and although n-of-1, offer useful starting points. Critically, Reddit was the first place I didn’t feel alone.
- Other content: I read every food/diet/health book I could, listened to every relevant podcast, and (carefully) waded into biohacking blogs. These all referenced plenty of “bad science” and had low signal-to-noise ratios, but still contained useful insights.
Side note: Interestingly, recent advances in AI are making this process easier. For example, AI-powered tools now exist to extract and aggregate anecdotal data from online communities like Reddit, and search research databases.
Experimentation
I translated those learnings into a series of structured, multi-week experiments across three domains. I logged every experiment and its corresponding impact on my symptoms.
- Diet: I tried every standard diet (FODMAP, keto, vegan, paleo, IF) and some relatively extreme elimination diets. For a whole year, I cooked 100% of my meals from scratch to ensure I had complete control, and ate nothing out of a package.
- Supplements / natural remedies: I tried every plausible-sounding supplement and natural remedy from my research — D-limonene, L-glutamine, high-potency probiotics, digestive enzymes, mastic gum, ashwagandha, quercetin, aloe vera juice, and dozens more.
- Mental health and exercise: Physical exercise was difficult, but I tried my best to walk, bike, and do occasional strength training. I took up meditating for 60 minutes/day. I even tried digestion-focused self-hypnosis (I know).
Alternative Medicine
For a few months, I worked with a naturopath and an “integrative” medicine doctor.
- Naturopathy: They prescribed supplements, herbs, and diet/lifestyle changes for each health condition. Some, like digestive enzymes and bitters, certainly helped. Unfortunately, I was asked to spend $2,000+ on advanced lab diagnostics that had little actionable insight, and in hindsight, questionable research backing.
- Integrative medicine: Similar to naturopathy, but more expensive. This doctor also offered fairly experimental treatments that I wasn’t inclined to try, like bespoke IV drips and ozone therapy.
If this all sounds a little too obsessive, I don’t blame you. I often felt like giving up, but kept coming back to one idea: if I solve this now, I’ll set myself up for a much healthier life for decades to come. COVID lockdowns gave me the time to go all-in.
After 12 months, thousands of dollars, and dozens of diets and supplements, it was a simple dietary change that had the biggest effect on all my symptoms simultaneously: eliminating gluten.
Piecing this together wasn’t trivial. When I tested negative for celiac disease, every specialist assured me gluten wasn’t the root cause. And despite the emerging research around non-celiac gluten sensitivity (NCGS), doctors largely viewed it as a fringe theory. They seemed to be right — the first time I went gluten-free for three weeks, I saw no results. I later learned through online anecdotes that it can take months to see results. For me, it took ten weeks after eliminating gluten before my symptoms started to improve. (It also took several days after reintroducing it for my symptoms to worsen.)
NCGS is linked to a puzzlingly wide array of symptoms: sinusitis, dermatitis, joint pain, depression, and dozens more. Unfortunately, there are no biomarkers for diagnosis, and the mechanism of action remains debated. Leading theories propose that gluten, other wheat proteins, or the glyphosate used in wheat production cause dysbiosis and intestinal permeability, resulting in immune activation and inflammation.
Ultimately, we can’t rule out the placebo effect, and there were certainly confounding factors. All that said, my anxiety has all but disappeared, and I no longer have any food allergies or sensitives. I still deal with occasional reflux, but it’s much less severe. Interestingly, most of my immediate family members also feel much better when they avoid gluten.
Closing Thoughts
What I did was risky, laborious, and expensive. It was the toughest thing I’ve ever had to do.
Unfortunately, the more I share my story with others, the more I learn it’s not unique. I now know many people who suffered from chronic conditions and found success with simple dietary changes that mainstream medicine overlooked, and that self-experimentation or naturopaths identified.
A few broader trends are worth watching: 1) the rise in chronic conditions, which mainstream medicine tends to treat only symptomatically, 2) the growing popularity of complementary and alternative medicine, which is especially popular amongst those with chronic conditions, and 3) the growing body of digestible health content, allowing folks to “self-educate” and self-experiment.
Most people won’t go to the lengths I did, but given the risks these alternatives present, it’s critical that we monitor their use more closely, understand why reasonable people might choose to chart their own course, and adapt mainstream care accordingly.
In this process, I couldn’t help but become fascinated by a whole host of related topics—our healthcare system and its underlying incentives, the evolution of food production, the challenges involved with clinical research, and much more. I’m far from an expert, but if you’d like to chat about any of this, please don’t hesitate to reach out on Twitter!
