Living with eosinophilic esophagitis

For as long as I can remember, I’ve had the occasional difficulty swallowing. Nothing that drinking a glass of water wouldn’t fix. As I would learn later, my subconsciously-developed coping mechanism to always have something to drink available while eating is actually a symptom of this particular allergy.

These difficulties would happen—as I thought—because I wasn’t chewing well enough. But my perception changed one day in 2022. I was having some curry with rice for lunch. Despite the soft texture of the food, some of it got stuck in my esophagus.

Medically, this is called a “food bolus” obstructing the esophagus.¹

I felt I was suffocating. It is difficult to tell the feeling of having an obstructed esophagus from an obstructed trachea. Fortunately, my panic subsided quickly because I could in fact breathe, just not swallow.² While waiting for emergency services to arrive, I tried drinking some sips of waters. They were immediately ejected (including my own saliva). The esophagus was literally blocked. Think of this as a continuous urge to vomit while also being unable to actually do it. It was revolting.

When the emergency services arrived, the obstruction had cleared by itself already. Therefore, there was little else to do than to send me to the nearest (ORL) physician.

My throat was completely swollen, so the physician couldn’t see a thing.

Diagnosis

The next step was to wait for the swelling to subside and go to the hospital to eat some barium. This is a diagnostic procedure where I’m being X-rayed while swallowing a radioactive agent. It was a somewhat funny procedure because I had to eat some—what I can only describe as—white paste in different sizes, whilst being rotated into various angles.

This procedure found some issues with my bowel system, but nothing that would explain the incident from a few weeks prior.

By suggestion of the last physician, I went to a specialist for internal medicine. Finally, about two months later, I got to enjoy a gastroscopy. They found both visual and histological (through biopsy) evidence of eosinophilic esophagitis. (Please note that I’m not a physician and nothing here should be construed as medical advice. I’m merely a patient with this particular condition.)

I’ll do my best to explain this condition in simple terms.³ Eosinophils are a type of white blood cells and part of the human immune system. There shouldn’t be too many of them near the esophagus. Too many of them cause the muscles in the esophagus to give up, which means the peristaltic wave stops. This causes a bolus.

Exactly why the eosinophils are flocking to the esophagus is not known. What’s known is that it’s an allergic reaction (eoisinophils are associated with allergic reactions) and that it’s caused by some antigens in some foods.

Broadly, there are six categories of foods known to cause allergic reaction:

1. Dairy
2. Eggs
3. Fish
4. Soy
5. Wheat and relatives (including spelt, einkorn, and emmer, but not buckwheat nor rye)
6. Nuts

Not everyone will react to all of them, and it’s unclear which exact proteins are to blame. One possible way of treatment is to remove the offending category from one’s diet.

Treatment (first attempt)

However, as opposed to other allergies, prick tests are not effective to identify the category. The “gold standard” for a full diagnosis of the condition is therefore to follow an algorithm that is designed to figure out under which conditions there are too many eosinophils (shit’s broken) or a good amount (shit’s fine). It works like this:

1. Eliminate all of these six categories of foods from the diet (also known as 6FED or Six Food Elimination Diet).
2. Wait for a few weeks.⁴
3. Do a gastroscopy and if:
   • shit’s fine, i.e. the visual and histological signs in the esophagus are in remission: the condition is diagnosed beyond doubt, proceed
   • shit’s still broken: you have something else, abort
4. For all six categories of food, repeat:
   1. reintroduce into diet
   2. wait for a few weeks
   3. do a gastroscopy and if:
      • shit’s still fine:
        1. mark category as safe
        2. keep category in diet
        3. continue loop
      • shit’s broken again:
        1. mark category as unsafe
        2. remove category from diet
        3. continue loop

Fun, no?

Astute readers may feel inclined to count the worst-case number of gastroscopies.

This is essentially a trial-and-error approach.⁵ In fact, there is various research suggesting different loops (e.g. reintroduce two categories at a time) that would get us closer to something like a binary search.

My physician was unaware of anything after the first step, though. They suggested going ahead with the 6FED for the rest of my life. When I pointed out that, as a (mostly) vegetarian, there would be hardly anything left to eat for me, they suggested eating meat. (Imagine my face.)

I followed through with the 6FED and substituted dairy for oat or almond products and wheat for rye. There is a significant overlap of “gluten-free vegan” food and 6FED, but, soy and nuts broke that logic.

It started to dawn on me why research is nowadays suggesting not to do 6FED: patient compliance is too poor, and I can see why.

There was something else that the physician didn’t know. On top of the 6FED, they prescribed me a cortisol-based medicine. It is rather new, but proven to be safe and effective.

What I only found out later is that you shouldn’t be taking this medicine while following the above algorithm. The algorithm is supposed to figure out what food causes shit to be broken, but the cortisol fixes shit by itself.⁶ In other words: the medicine is a confounding factor.

Fortunately, by the time I was waiting for my second gastroscopy, I was already knee-deep in the medical literature. I also consulted with a dietitian, who confirmed my suspicion: you either do the algorithm or you take the medicine.

Treatment (second attempt)

Now I had a choice to make between taking medicine for the rest of my life or getting to the bottom of the problem. I chose the latter.

Based on my dietitian’s suggestion, I started to reintroduce dairy.

And what can I say? Bingpot.

After a few weeks, while travelling with friends in a foreign country, I had a bolus again. Unlike the last time it had happened, the bolus did not go away by itself. I ended up having to go to the hospital for an emergency gastroscopy. (Which they do to sort of shove it down my throat. Literally.)

I reckoned that dairy is not safe for me.

A better diagnosis

Soon afterwards, I started looking out for more specialised physicians. I found two, and they both sort of told me the same thing: according to the latest research, dairy is the main cause of the inflammation.

I decided to cut the algorithm short, do a 1FED with dairy, and get another—non-emergency—gastroscopy to confirm. As expected, shit was fine again.

If you want to stop reading, after this paragraph would be a good time. I now know that dairy causes a problem, so I permanently removed it from the diet, and will (hopefully) live happily ever after. No medicine required, since there is no more allergic reaction.

EoE in reality

Of course, reality is a bit more complicated.

I was under the impression that I should avoid taking cortisol due to its side effects. However, the tablets do not have a systemic effect (only topical), so in principle, the side effects are a lot less severe.⁷ Other reasons not to take them is that they are expensive (mostly covered by insurance), and well, I would still need to take them twice daily. If I can avoid it, I will avoid it.

The alternative—avoiding dairy—sounds more reasonable to me.

I also tried to get into a study for another, non-cortisol-based treatment, but they rejected me on ethical grounds: since shit’s fine for me, there is no medical reason for me to try experimental stuff.

These days, when I’m going out, eating vegan food is typically safest. This is not always possible when travelling. So for these cases, I have some tablets with me, which I take regularly while abroad.

Why regularly? There’s one aspect I haven’t mentioned yet. The allergic reaction is not immediate. Were I to have small amounts of dairy daily, e.g. a bit of milk in the coffee, it wouldn’t result in difficulties swallowing for a few weeks. In other words, as the antigens keep passing through the esophagus, the eosinophils keep accumulating, until the esophagus gets upset.

This means that I have some kind of “dairy budget.” If I’m at home, it’s easy for me to control that; I’ve got quite good at noticing the symptoms when they start. But abroad, the tablets are the safest bet to raise that budget to an extent that government esophagus shutdown is avoided.

To close, let me just say this. I could’ve avoided a painstaking diet if I had done two things. First, get my esophagus checked out earlier, instead of taking difficulties swallowing for granted. Second, read the literature earlier, which is not as hard as it sounds.

Fortunately, there are now medical guidelines to treat EoE, so I hope that future patients will have an easier time getting the treatment they need.