Author’s note: perhaps the main reason I decided to write this is because I’ve gotten tired of having to tell people why I can’t eat anything. Now I can just send them this link, they can read why, and I can carry on! Seriously, though, I’ve come to discover that many more people than I thought or knew struggle with EoE. Maybe they actually don’t even know it yet. For them, I wanted to share my story — whether to show there’s others out there struggling with it too or to give some hints/help. I also think it should be helpful to people who may not know they have EoE to get familiar with the symptoms. Or at least to spread awareness about the disease, which is little known, but being diagnosed more rapidly each year.

Finally, and maybe the most generally applicable and important message from my story, is that challenges don’t have to be crippling. They don’t have to make you weaker or smaller or inferior. Often times the problems and challenges we face are the things that define us and make us better, make us stronger. This is one of those stories.

My Life with EoE (Eosinophilic Esophagitis)

For as long as I’ve been around and eating, I have had a strong preference for three things: Pizza, burgers and fries, and grilled cheese. So i guess it’s more like four things well suited for your average four year old. I didn’t just love eating those things, and going out to restaurants all over NYC, I also loved making them, and make a hell of a double smash burger with my brother known as the Huff Burger. That all changed one day when I was diagnosed with an auto-immune disease called Eosinophilic Esophagitis, also known as EoE.

What is EoE? In short, it’s the build up of white blood cells (eosinophils) in the esophagus. Variations of this can happen anywhere along the digestive, meaning EoE is a member of the Eosinophilic Disorders family. EoE is a relatively new disease that isn’t very well researched, but for a long time now, I’ve been an early adopter, so this is super “on brand.”

Early Warning Signs of EoE

For me, the build of of white blood cells was making swallowing food, an otherwise simple and biologically innate ability, very difficult. Often I would start to swallow a piece of food and experience something known as a “food impaction episode”. In brief, when I’d have one of these episodes, I wouldn’t be able to swallow or regurgitate. Basically, the food would sit in limbo in my throat, and wouldn’t go down (or up) until the episode had passed. Often times a food impaction episode could last for up to an hour. As you can probably imagine, this is an incredibly uncomfortable experience.

My first incident of food impaction occurred in 2008. I remember it really well, actually. I was working in Boston at the time, and had just gotten a sandwich from one of my go-to places, Viga. Just another routine Grilled Chicken Sandwich order, I think, and all of a sudden I can’t swallow it in the middle of my office. I’m just standing there over a trashcan gagging for a few minutes until it went down. I tossed the rest of the sandwich, and I really didn’t think much about it after that as, in the beginning, the episodes were few and far between.

But over the course of the next 8 years, the frequency of these food impaction episodes accelerated rapidly to the point where I was having them 3–4 times per week. I researched the web high and low, and came to the conclusion that I had GERD. So I started taking antacid pills and Tums, but these OTC options didn’t do anything for me. In fact, my symptoms progressively kept getting worse, and often they would strike at very inopportune times like a business dinner/lunch, a wedding or other formal function.

I distinctly remember one time pitching a potential client at a dinner meeting. We were at Lure Fish Bar in SoHo. Mid-meal, I had to choke down my words and abruptly run to the bathroom where I spent the next 20 minutes experiencing an a food impaction episode. It was becoming so embarrassing and disruptive that I would often just avoid ordering food at all — lying and saying I had already eaten.

Enough is Enough

Me being me, I didn’t heed the advice of my wife Brittany who had been urging me for years to go to a doctor. Finally, on Thanksgiving of 2016, I had probably the worst episode I’d ever had at my dad’s house. I had to leave the table, and literally sat on the floor in the bathroom for over an hour trying to puke, trying to swallow, trying to drink ice water…doing anything I could do to try to get it to subside. It was after that that Brittany told me something along the lines of, ‘hey, I love you, but I’ve been telling you to go to a doctor for years now, and enough is enough.’

That brought me to a Dr. James Palma in Midtown Manhattan. He diagnosed me within 5 minutes. When I entered the room, I told him I thought I had GERD, told him what was happening, but he suggested, “Sounds like you have Eosinophilic Esophagitis.” The only way to find out for certain was to have an endoscopy and have a biopsy taken. At this point, I’d do just about any test for some answers, so we booked an appointment.

Endoscopies aren’t actually too fun. After a 12 or so hour fast, you get put under (thankfully!) and they insert a scope down your throat so they can take photos of your upper digestive tract. During my procedure, they would also be taking a tissue sample (the biopsy) so they could send it to a lab to determine the health of the tissue.

Lo and behold, the lab results came back, and a whole lot of white blood cells (Eosinophils) were hanging out in my throat, and they were NOT supposed to be there. Dr. Palma shared with me that not much was known about the disease, but that there’s a strong correlation to food allergies, and he recommended that I see Dr. Arthur Lubitz to get an allergy test.

If you’ve never gotten an allergy test, I recommend you do. We did a skin prick test (there are other types like hair follicle and blood testing, but these aren’t nearly as accurate, so don’t waste your time with them), where they rub trace amounts of various allergens into the top layer of your skin and then wait to see how your skin reacts.

My arm lit up like a Christmas tree!

What was I allergic to? Basically everything…and everything I loved: gluten, dairy, soy, egg, peanut, strawberry, banana, corn, white potato, and more. Better question, it seemed at the time, was what wasn’t I allergic to?

Think about this: pizza and burger boy can’t eat bread, cheese, eggs, soy (which, along with corn, is in basically everything) anymore. The grilled cheese, a staple in my diet, and the featured dish in a cook book I own called Grilled Cheese, Please was all allergens (by the way, I can still make a 💣 grilled cheese if ya want one). And I got to thinking back over the years: so often I would get a runny nose or a cough while eating a sandwich. I would just convince myself there was dust in the air or something!

Putting EoE into Perspective

I’m not going to lie, it was really daunting thinking of everything I could no longer eat. If it was just one allergen, or two, or three, I mean, that’s one thing, but the fact that my list was dozens of allergens long was crazy. But, according to the doctors and my online research, if I wanted to treat this thing, I was going to have to cut out all of the foods on that list.

One of my arms after the results of my allergy test started showing up as I sit in the waiting room at the allergist’s office. Some of the really big reactions you see are gluten, dairy, and soy. Note there was another arm, and you can’t really see what was happening around the corner on my right arm in this picture.

Let’s face it, though, I wasn’t diagnosed with Cancer, ALS, or Cystic Fibrosis. Frankly, I figured that many other people had to suffer through far more difficult afflictions, so it shouldn’t be too hard to suck it up and change my diet a bit. My prescribed treatment wasn’t that bad either. I had to take a PPI, use a steroid, and cut out some foods that are probably bad for me anyway.

The crazier thing to me was just trying to wrap my head around how this could happen considering I had been eating these things my entire life, and had never even heard of EoE. It also didn’t help that, at 5’ 7”, I now had a disease that is most common amongst children. So I started researching EoE, and came to discover that, as bad and uncomfortable as my food impaction episodes were, I actually had a relatively mild case of the disease. Don’t get me wrong, these impaction episodes SUCKED. But once I read stories like these, it made me understand how bad the disease can really be.

Remington’s story (included in the link above) really stood out to me, and it’s worth reading. In brief, Remington was diagnosed with EoE at age 4, and he can not eat food. Repeating that: Remington can not eat food. He is 13 years old as of the time of telling his story, and for 9 years, he has been drinking 14 “juice boxes” per day that provide him with elemental nutrients. I thought that, at 13 years old, this was a particularly mature and optimistic outlook on life that Remington conveyed:

“There is so much that people don’t know about me and this disease. Yes, my life is tough and I have to overcome many obstacles that most kids never have to, such as pain, sickness, doctors, surgeries, carrying a lunch box everywhere I go, and not being able to eat at restaurants. But even though I wish I could eat there are others who have it worse than I do. I remember one time when I was feeling sorry for myself because I had to go for another scope. But, in the lobby of the hospital, I noticed kids that were in wheelchairs, some had tumors all over their body, and others were hooked up to machines as they walked by. I then realized that I really did have a good life, even though I had EoE and had to go through all of these procedures. There are other kids who spend way more time than me in the hospital and aren’t even able to play baseball. My mom told me once to make a choice: choose life or choose the disease. I choose life, and I want people to see that I am living with EoE.”

After my diagnosis and my research, I decided to make the change. Well, not until the next day, as I first decided to go out for one last meal that night. I chose John’s of Bleecker Street — what I consider to be the best pizza in all of Manhattan — as the location of my “Last Supper”. Brittany and I split a large pie with pepperoni and extra cheese, cooked well done. Has anything ever tasted so good? (this is rhetorical, and the answer is no!).

Switching to an EoE Friendly Diet

The next day I went completely cold turkey. I started with the five main allergens: gluten, dairy, soy, egg, peanuts. Going to restaurants became an experience, and ordering takeout was virtually impossible. But the journey was underway, and continues to be an ongoing learning experience.

The Last Supper: John’s of Bleecker Street, the best pizza in all of Manhattan.

In addition to changing my diet, I was also taking my PPIs (though I must confess, I’m a bit off and on with that), and my steroid. The steroid is pretty funny as it’s kind of a hack. Maybe it’s because the disease isn’t prevalent enough to have it’s own treatment, but I was prescribed a Flovent inhaler — the same kind used for the treatment of asthma — but instead of breathing it in, you swallow it.

(I was actually asked a question about this recently on Reddit, so figured I share here as well. It is important to swallow the Flovent instead of inhaling it. Remember that you’re treating your esophagus, not your windpipe or your lungs. Try to build up a bit of saliva, puff the Flovent into your mouth, and then swallow it down. The saliva acts almost as a vehicle for the medication. Dr. Palma also suggests not eating or drinking anything for 10 minutes after doing this, and then gargling water afterward.)

People comment all the time about how hard it have been to stop eating all of these foods. But in reality, it really wasn’t. I do get pity sometimes, and I also receive the judgment that comes with having food allergies. There is still a strong social stigma associated with being gluten-free or dairy-free, etc. It’s relaxed now compared to many years ago, and it’s worse in places that aren’t progressive or major metro areas like NYC. But there are definitely still eye rolls, which is especially disconcerting when people don’t understand the context. One funny way — at least funny for me — to offset the judgment is to preface your allergy list by saying to the waiter, “I have a debilitating auto-immune disease!”

Benefits of Managing an EoE Friendly Diet

The other reason that it wasn’t particularly difficult to make the switch is because there were some positive and welcomed side effects to no longer eating these foods I was allergic to:

First of all, I immediately felt and continue to feel 1000x better. I am no longer getting “random” runny noses and coughs during meals. And my body just felt and continues to feel so much better. Stomach aches: gone. The runs: gone. Lethargy: gone. Inflammation: gone. Let’s face it, so many of those allergens I cut out are the core ingredients to junky food, and, out of necessity, I was replacing them with greens, fruits, and veggies. Second, and most importantly, in the three years since changing my diet, I have had ONE food impaction episode (and it was early on in the process). This was a very, very welcome change of pace compared to the 3–4 I was having on a weekly basis. It’s now been over 2 and half years since my last food impaction episode. Third, I started dropping weight without even trying. Not that I was fat, but I certainly wasn’t a Da Vincian model of the male physique either. I was, by default, on a diet that was low(er) carb, no dairy, and filled with protein — I could still eat chicken, steak, turkey, etc. I’d just make sure it was cooked in olive oil instead of butter. Next thing you know, everyone is telling me how great I looked and asking what I was doing. I’d reply “it’s called an auto-immune disease. It’s way better than Atkins, and you should try it!” In retrospect I just wish, for the sake of the pictures, that this diagnosis had come before my wedding. Fourth, I began to learn so much more about nutrition and health. I studied and researched, and began to understand how bad so many of the foods we eat are for us. You wouldn’t believe how many times you purchase some food at the grocery store thinking it’s good for you (because it’s advertised that it is), but it’s actually loaded with added sugars, or chemicals like natural flavoring. Fifth, I began to cook more and more. I make almost all of my meals. It takes more time, but I know what I’m putting into my body now. And it all tastes great (it’s helpful when your brother is a French-trained chef). But I’ve also discovered that you can substitute, for example, coconut milk or coconut cream for just about any dish that calls for dairy, it’s just as good, and in many cases it’s better. You can use cassava flour, almond flour, or flax eggs, and make delicious desserts. The best chocolate I’ve ever had — not exaggerating — is made by Honey Momma’s and has all of four ingredients. Sixth, as I began to feel and look better, I was motivated to get into shape. As they say, 90% of getting into shape is done in the kitchen, so I only had 10% to go. I started to lift weights and exercise, and now I look better than I’ve ever looked in my life. I’m like Benjamin Button aging in reverse. To demonstrate, I checked back in the MyFitnessPal app, and my last logged weight was from 2012 — I weighed 174 lbs. on May 30, 2012. At the end of 2018, when I made the decision to get into shape, I had a body fat percentage of 18%. I now regularly weigh in somewhere between 147–152 lbs. and have a body fat percentage around 10%.

11 year old Ricky suffers from Eosinophilic Colitis, and can only eat 14 different types of food. Poor Ricky, along with Remington, have it way worse than I do, and never really got the chance to eat the foods I’ve eventually had to cut out. Said Ricky, “Someday I would love to be able to eat popcorn or corn on the cob, but I am allergic to corn.” 😥

Living a Better Life with EoE

Like Remington, I chose life, and I chose health. I took a negative, and I turned it into a positive. Again, I’ve never felt better. And I plan to continue on this path of eating right and staying fit. And when people ask me now how I’ve done it, I can now give them a little more insight than “go get an auto-immune disease.”

The disease is still tough though. Sometimes an allergen will sneak into something I eat without me knowing, and that makes for an uncomfortable 6-12 hours of recovery. And even though I feel better, look better, and haven’t had an impaction episode in forever, I still have to go back to get regular endoscopies to track the disease. Endoscopies aren’t fun. After my last endoscopy, it turns out, despite the changes I’ve made, I still have an alarmingly high eosinophil count. The next step is to figure out, with my doctors, how to get that count down.

And I’ll do whatever they tell me. I can’t express how grateful I am to my doctors, especially Dr. Palma and Dr. Lubitz. I’ve told them this, but I don’t know if I could ever appropriately explain it to them. Because they knew what they were doing, they were able to properly diagnose and treat me, and drastically changed my life for the better. I really do have them to thank. And, obviously, Brittany for making me do what most normal people probably would have done on their own: to go see the doctor in the first place!