Eosinophilic Esophagitis, or EoE for short, is a chronic allergic/immune condition where your throat gets inflamed by certain foods that then cause a domino effect on the rest of your body’s digestion system. Symptoms range from heartburn and abdominal pain to food actually getting stuck in your esophagus! I was recently diagnosed with this condition after dealing with all of those issues for the past 3-4 years and perhaps my entire life in retrospect. While there is no blanket cure for this condition, I’m optimistic about some specific treatment measures that appear to be working for me. Given how difficult it was for me and other people I know to get a proper diagnosis, I’m sharing my story below in the hope that it can help someone else – perhaps you!

My Symptoms

Several years ago, I was traveling to a work meeting and started to come down with a sore throat. The morning of my meeting, I had enough pain and such little voice left that I canceled the meeting and went to a local urgent care clinic instead. I was diagnosed with Bronchitis. The antibiotics helped a bit, but not nearly as much as expected. By the time I was back home, my local doctor said I had pneumonia and a double ear infection. Another round of antibiotics was paired with a lot of steroids. I was healed enough to function but still felt pretty bad. Then I came very close to passing out from both ear pain and pressure on an airplane, so I decided to see a specialist.

An ENT scoped my throat and said that my larynx was the most swollen she had ever seen in 30 years of practice. I’ll spare you the images she showed me from the scope, but even to someone like me with no medical knowledge, this was either a tumor or a  heartburn case for the record books. My high pain tolerance was the only explanation for why I didn’t complain of the issue much earlier, which the ENT was confident had been going on before my recent sore throat episode.

I started on quadruple the normal amount of proton pump inhibitor (PPI) medicine and enacted an extremely strict diet that eliminated all traditional acid reflux triggers. By my 2-month follow-up visit, the swelling had improved so it wasn’t a tumor. After 6 months, both my original ENT, a subsequent one I saw after she retired, and even a third one visited for another opinion all declared the heartburn treatment as a success and recommended that I continue with the high dose of PPI medicine, theoretically forever. And yet nobody could explain why I still felt a lump in my throat despite the extreme dietary change and a high dose of medicine. The side effects I complained of with the PPI, namely anxiety and feeling like I’m going to pass out during certain activities, were basically shrugged off by the doctors since the pharmaceutical company doesn’t acknowledge either.

I went on for the next year, assuming that I indeed had the worse case of heartburn ever and couldn’t really change it any more than my initial results. I struggled more and more with exercise due to continued inflammations affecting my muscles, nerves, and lungs.

Then things boiled over. In the same 10 minute period, my throat started to feel very swollen – almost to the point of not being able to breathe. I looked in the mirror and noticed that my entire face was swelling while the rest of my body started to react in what looked like hives. I started to get very short of breath before passing out in front of my wife. An ambulance arrived and measured my blood pressure at something around 40 over 20. They insisted that I simply fainted, technically called vasovagal. Probably from food poisoning they predicted. I called BS and insisted that they take me to the ER. What happened there was even more discouraging. I was discharged with a $10,000 bill (including the ambulance ride) and the exact same diagnosis: vasovagal.

At this point, I decided to escalate to a specialist and wrote a letter to the Mayo Clinic pleading for them to squeeze me in sooner than their typical 4-month backlog. Thankfully, this approach worked and I traveled there the next week.

Mayo immediately recognized that this wasn’t simply a case of standard heartburn. An endoscopy was ordered to see what is really going on in my throat. They also agreed that my ER visit was not fainting but diagnosed it as anaphylactic shock before prescribing an EpiPen.

At first, I was so glad to have a team of doctors who seemed to better appreciate and understand my symptoms. Then I became frustrated that so many doctors before them had potentially misdiagnosed the issue, including my primary care, multiple ENTs, an ambulance crew, and even the ER – all of whom I kept telling “this isn’t just heartburn or fainting.” I later decided to trust my gut (pun intended) and be much more of an active advocate for my medical care, including insisting on answers to certain things like my medicine side effects.

My Solution Thus Far

After getting an endoscopy and about 100 needle pricks on my back to test for the most common food allergies, the diagnosis was Eosinophilic Esophagitis – something that is more of a slow and long-term allergic reaction to food rather than the “eat a peanut and immediately can’t breath” story that most of us are familiar with. Over time, this chronic inflammation from certain foods had trashed my esophagus and peaked to bronchitis,  pneumonia, and a double ear infection. I was told that an elimination diet is the best way to figure out what foods are triggering the EoE symptoms.

For six weeks, I eliminated all forms of:

  • Dairy
  • Gluten
  • Soy
  • Eggs
  • Nuts
  • Seafood

This diet is no fun whatsoever. But, it is intended to give your body enough of a break from the common allergy-causing food categories that you not only feel better without them but can later recognize their individual effect more immediately when introduced back in one at a time after the cleanse.

I was skeptical at first. After all, eliminating the heartburn trigger foods didn’t really do a ton for me, and the first couple weeks on this even more restrictive diet seemed about the same as before. But about halfway through the elimination period, and certainly, by the end, my symptoms had dramatically improved. For the first time in years, I didn’t have a lumpy throat and finally quit clearing my throat constantly. My energy level was much higher and I started earning Strava Personal Records on nearly all of my bike rides. I was finally sleeping through the night and felt better overall with lower stress levels.

God bless my amazing wife, who was able to cook around both those 6 broad category restrictions plus the traditional acid reflux triggers I had already eliminated several years ago. Try cooking without the foods listed above plus no onions, garlic, tomatoes, oranges, lemons, spicy foods, etc. It’s very difficult! I assumed we would be eating nursing home food, minus the decent stuff like mashed potatoes and gravy, but she was able to find great substitutes like Olive Butter, which I now prefer to the traditional dairy butter.

Things were going so good during the elimination period that I was confident that one or more of the eliminated foods was to blame for my poor health. Around that same time, I started finding people who had also complained of both the PPI not helping their EoE and also the side effects I had experienced but the doctors felt were uncorrelated. So, I decided to at least taper down to double the regular PPI dose instead of quadruple. After I made a strong case for the move, my doctor supported it and the side effects have been drastically reduced without any negative impact to my diet process. I tapered completely off the PPI about a year ago and all my side effects went away, so I look forward to doing so again after my elimination diet is complete. Your doctor might advise otherwise, so always check with them before doing anything different with your medication.

Now it was time to introduce one of the food categories. I choose gluten as the first trial because it’s in darn near everything. The first day or so was fine. I enjoyed a beer, a bread bun on my chicken sandwich, and even one of those huge oatmeal raisin cookies from a gas station. But I didn’t sleep very well that night and by the morning I was clearing my throat a lot. I continued for a few days before extreme nausea and heartburn gave me confidence that gluten is an intolerance for me. I will now avoid gluten whenever possible since it took weeks for me to recover.

As I write this post, the current food being introduced is fish. Damn, I missed fish. It is really giving me the protein I need to feel better and exercise. Just today, I posted 12 Strava Personal Records on a bike ride despite not even trying that hard. My muscles felt good. My lungs felt like they were hardly being taxed.

What’s also interesting is that I’ve been able to occasionally sample a few traditional heartburn causing foods like onions and tomatoes without consequence. I don’t want to add too many variables to the elimination diet test period, but I’m hopeful that I can go back to eating some of my favorite foods that had been eliminated when this was thought to be traditional heartburn instead of EoE.

My doctor isn’t certain if the anaphylactic shock was caused by a reaction to foods not commonly associated with allergies or just my body giving me a warning sign of everything else going on. I carry an EpiPen in case another episode happens, at which point I would thoroughly analyze exactly what was in the food I ate.

My Advice

Sitting in the Mayo Clinic waiting room quickly puts things into perspective compared to those with cancer and other more extreme issues. And yet, the symptoms I have experienced have not been easy on me. I’ve experienced a ton of sleepless nights from heartburn so bad it caused extreme nausea along with anxiety from the PPI heartburn medicine – all the while wondering why this was happening to me if my diet was so strict. Whatever personal or work obligations I had the next day were difficult to accomplish. Work travel was a nightmare that often put me in a state of starvation combined with sleep deprivation.

It has been hard for me to explain to other people why I suddenly feel so exhausted without the traditional doctor’s note diagnosis in hand. “Why don’t you just try ____ medicine,” people always ask, filling in the blank with their favorite heartburn pill that works great for them. People understand the traditional food allergy, like with peanuts, and nearly everyone has experienced heartburn with all the spicey and fried food Americans now eat. But hardly anyone knows what EoE is, let alone the long-term effects. It’s frustrating.

Looking back on my life, I recall memories from years ago, like when I told my newlywed wife that I couldn’t get her pancakes down that she had so proudly cooked, or my exhaustion during certain athletic activities from school sports to adulthood when everyone around me just thought I was a wuss. In retrospect, I could have been going through an inflammation during those times.

Adding to the confusion, I’m told by both doctors and other people with EoE that symptoms can come and go in cycles and that some foods that previously didn’t bother a person will suddenly start to.

Patience is what I ask for from my friends, family, co-workers, and even the restaurant staff when I place a highly customized order.

I share this post in the hope that others who have experienced similar symptoms and frustrations may finally find some answers – either for EoE or in using the 6-food elimination diet as a solution to a myriad of other food sensitivity issues. My goal isn’t just to learn how to live with EoE, but to truly thrive around it.

I decided to write down these thoughts in the middle of my diet when everything is fresh in my mind, including the frustrations. I’m not completely confident that things will continue improving, but even the steps I have already taken are hugely impactful and can hopefully offer optimism for others experiencing similar issues.

I look forward to revisiting my total results in a “Part 2” post. Hopefully, they’re as positive as I expect. Meanwhile, a couple recommendations for anyone reading this post and thinking you might have something similar:

  • Consult with a Medical Professional: EoE and other food intolerances can only be diagnosed with a combination of very specific tests and symptoms reporting. Doing an elimination diet is not to be taken lightly since you can risk malnourishment. I prefer using a primary care doctor who can connect the dots on multiple items combined with the best specialists for each particular need.
  • You are your Strongest Advocate: Don’t let the medical professionals overlook something or degrade the impact of a symptom or side effect. Push for dialogue amongst different doctors and respectfully challenge their assumptions. You’re going through this day in and day out. Your symptoms, side effects, and results may be different than those from medical studies – many of which are still quite limited in the food intolerance and/or EoE space.
  • Elimination Diet: I wish my doctor would have referred me to a nutritionist to help me better understand the diet and implement it better. For example, this 6-Food Elimination Diet Guide from the University of Wisconsin recommends starting with the re-introduction of seafood, nuts, eggs and then soy before moving on to milk and finally wheat. I now understand that the final 2 are the most common triggers, thus they should be held until the end so that you can hopefully quickly get back to a more balanced diet with the other 4 and not experience the significant recovery delay like I did in starting with gluten.
  • Bring Your Own Food: Whether you’re in the middle of an elimination diet or not, if you know that the food being served at a restaurant, friend’s house, or another meal event will bother you – bring your own or eat beforehand. Not all restaurants can be trusted to properly disclose what is actually in their food. The wait staff might simply assume that gluten is only in bread or not understand that soy is in so many things! Even though I don’t go into anaphylactic shock with all foods, I describe the issue as a “food allergy” (which it technically is) to get the most attention and respect from a restaurant.  I also have my own high-end travel cooler and Arctic Ice Reusable Cooler Pack for traveling with my food even on overnight business trips.

Tangents

Dark clouds often have silver linings.

EoE has forced me into a much healthier diet that I’m sure will pay huge dividends over the long run. My Mayo doctor says I have the lowest cholesterol of anyone he has ever seen. I highly doubt I could have achieved that without the threat of a throat tumor driving changes to my eating habits.

EoE requires me to read food labels in detail, many of which are disappointing if not disgusting when you learn what is going into your body even for foods marketed as “healthy.” This has all motivated me to maintain a strict diet even when not required for managing specific EoE issues.

Americans are killing ourselves with the food we eat and the alcohol we drink. Medication is most people’s solution, but pills aren’t without risks. Nobody knows the long-term effects of PPI medicine yet, but some doctors suspect it could be an issue. Obesity can prevent you from enjoying too many things in life, from climbing that hill to see the beautiful view to playing with your grandchildren.

Genetically modified food is probably a requirement to feed an ever-growing planet with limited soil and water supply. But, I’m convinced that our bodies are sometimes revolting, and I worry that future generations will only experience more troubles.

Soy is in almost everything. Most soy comes from Monsanto’s genetically modified seed that is Round Up (Grass and Weed Killer) resistant. This doesn’t sound like something I want in my body, so I try to avoid soy whenever possible.

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