Esoteric Health Issues - Eosinophilic Esophagitis

When I was in the 6th grade I was with my flag football team getting ready to head to another school for a game. Before leaving I ate a single strawberry. It didn’t take long for a new, painful experience to occur. I felt a pressure, and sharp discomfort in my throat at about the level of where my clavicles meet. I panicked, I didn’t know what I was experiencing. I went to the nearest parent to ask for help. While they were trying to figure out what was wrong my discomfort suddenly stopped and I was fine and happy. The parents looked at each other, shrugged, and off we went.

Shortly after this I started burping a lot. All the time. No one had an idea why this was happening. My mom shrugged. My dad appeared really concerned. Nothing happened and I went on burping a lot. It became just another part of my life.

In my freshman year of college I attended a dinner put on by a friend. The spread was great and the dinner was fun. As I walked back to my dorm I started noticing a burning, muscle ache along the length of my spine. It was a new experience, uncomfortable and not like ordinary muscle pain. Different, like it was actually burning instead of metaphorically burning from being sore. I somehow managed to get to sleep. The pain was still there the next day albeit less so. I foolishly did not go to the doctor.

I remembered what I ate at the dinner and over the next few days experimented with what I could find at our cafeterias. I noticed that the burning pain came back when I ate blueberries and kiwis. I decided to not eat them again. I was sad to see them go and accepted this as the onset of adult food allergies which typically show up for people around the age of 20 if they show at all.

At this point in time I thought I had developed food allergies to raw kiwis, blueberries and mangoes (they jumped ship about a year later). It wasn’t that hard to imagine since I already had pretty strong allergies to pollen, dust and animals. Food seemed par for course.

As time passed I started randomly having food get stuck in my esophagus. It was as if my throat couldn’t decide if it wanted the food to go all the way down to my stomach or to get coughed back up. This experience is deeply unpleasant. I cough up so much phlegm that it feels like my body is trying to drown itself. I start sweating, my body temperature rises, my heart rate increases. Anyone who ever saw me going through this seemed to be more disturbed by it than I was so I often isolated myself while it was happening. Plus it was gross and I was making a lot of noise while coughing crap up. This could last for up to a half hour.

And the more it happened the more it kept happening.

I started dating someone who got a cat. To help with my animal allergy symptoms I started getting allergy shots for the second time in my life. While getting this done I asked my doctor if shots could work for food allergies too. She said yes and, given my history as described above, recommended I go see a stomach specialist first.

I went in to get an endoscopy which is when camera goes down the throat to look in the stomach. When I regained consciousness my doctor told me that they couldn’t get to my stomach because my esophagus was swollen so badly that the camera couldn’t fit. She decided to put a balloon in my throat to inflate and dilate it. This is apparently risky because it can cause tearing and is something they never want to have to do to me again. She told me that I have eosinophilic esophagitis which is a condition where the white blood cells lining my esophagus become inflamed in an allergic reaction to something. This causes the throat to tighten and all the other bad symptoms I’ve already listed. To handle this she prescribed that I take 40mg of omeprazole a day for the foreseeable future.

I was 23 at the time. This seemed like a single-day cure. I could swallow things. My ever present fear of and escape strategy for something getting caught in my throat was no longer necessary. Just keep taking omeprazole.

I was still burping a ton though.

In March of 2018 I started working with a “digestion specialist” who encouraged me to wean myself off of omeprazole. I use quotes because I ended up knowing more about health and nutrition than they did. I had been taking a single 20mg pill of omeprazole daily for five years. The idea of taking this pill forever seemed like a bad idea. I was already reading up on my acid reflux symptoms and had devised a plan to taper off taking the medicine in order to bring the bad symptoms back. Then I could hopefully draw connections between the bad symptoms and the bad foods in order to cut them out.

Foolishly I tried to wean myself off in two months.

Things seemed fine at the time. Then all at once I was no longer fine. May of 2018 has been the worst month of my life. Everything I consumed turned to fire inside me. Even water. I went to the hospital twice just to get fluids. I’d have to slowly eat a single rice cake over the course of a half hour just to dampen my stomach enough to drink a half cup of water. I lost 16 pounds, was constantly dehydrated, and felt like a husk who could barely do anything. An actual specialist told me to take the max dose of omeprazole, 80mg every day to get things contained. Then to gradually taper back to once a day. It took three months for me to be normal again.

I hadn’t given up weaning myself off. I decided that over the course of 2019 I would super gradually lower my dosage and take careful notes about what I eat and how I feel. In March I listened to this interview about LDL cholesterol. At the end of the talk the interviewee casually mentions a doctor who has helped people with their GERD issues by changing their diets. In particular, he mentioned this book. The key part of the book is this.

Excess dietary carbohydrates escape absorption by our intestines. Microbes breakdown these carbohydrates quickly producing gas and acid as end products. The resulting gas creates intestinal pressure, which is the driving force for acid reflux. Less gas is produced by the microbial breakdown of fats and proteins and therefore consumption of excess carbohydrates, but not proteins and fats, will result in heartburn in susceptible individuals.

Which brings us to today.

I now take omeprazole once every five days and I burp far less often. I’m on course to be off of it entirely by February of 2020 (fingers crossed). I practice intermittent fasting and have an eating window of 6-8 hours (it’s easier to not eat carbs when I’m not eating at all (plus it has other benefits)). My daily lunch is chicken thighs and an avocado (2 carbs). Dinner is usually a protein shake (18 carbs) after Brazilian Jiu Jitsu or powerlifting.

I still snack on bad things from time to time. This is my greatest weakness at the moment and my biggest problem going forward. I haven’t been able to let go of all the things I want to eat or all the foods I want to experience. The short term pleasure of a gourmet dessert, root beer float, or Brazilian cheese bread press against my long term desire to never get my throat dilated again. I know that my diet can’t be like an ordinary diet where there are cheat days. A cheat day here brings the threat of further irreversible esophagus damage and really bad heartburn. At this point I’ve significantly reduced my carb intake, I probably eat about 60-80 a day (for reference a slice of bread typically has ~24, and a banana has ~27), and I still have more progress to make.

The current level of the game is to provide tasty sweet alternatives for myself so I get pulled to those instead. Like homemade allulose ice cream, fresh strawberries (those ended up being okay), raspberries, blackberries, or > 80% dark chocolate. I'm conflicted here because the story I want to be true is that I just hold fast and resist the temptations so that I transcend wanting them. In practice this has led to mixed results. Some things have been easy to remove, others have me frustrated and bitter that a thing I once enjoyed must go away.

If this post is to have a punch-line it would be this; know enough about what you struggle with in order to correctly name it. Don’t just accept things as the new normal and definitely get a second opinion. Eosinophilic esophagitis, hallux limitus, panic disorder, spasmodic dysphonia, etc. Hunt that thing’s name down. If a common condition seems close but not correct enough then spend the extra time. By knowing the correct name you can hope to get the correct diagnosis. The more accurate the diagnosis the the more accurate the treatment has a chance of being. While I have been frustrated with some things I've had to do and some habits I've had to change, my quality of life has improved for each step I've taken.

If you have esophagitis and want to know more about what I’ve done please feel free to email or message me. And please read Norman Robillard’s book.