I have eosinophilic esophagitis. If you’re interested in this kind of stuff, my doctor tells me she counted 30 eosinophils per high powered field. Fun fact! Eosinophils are a type of white blood cell and get their names not from the function they perform but from the dye, eosin, used to make them show up on slides. They take up more dye than the surrounding tissues and cells, so they are eosin-loving.
This strikes me as kind of a shoddy naming scheme.
Anyway, back in June I had this feeling of having food stuck in my throat (whether I had actually eaten anything or not) which would persist for a few days. I’d had this feeling before, but it happened so infrequently and at such small durations that I’d never given it much thought. This time, though, it was really bothering me, so I did some research.
GERD was the most popular result. Both my parents have GERD, so it seemed likely to be right. I’d never gotten heartburn, but maybe I’m just special? (This is more true than I knew.)
I got an appointment in July with my mom’s gastroenterologist to confirm the self-diagnosis. She agreed that I probably had GERD, but there was a small chance that I had something else. She needed to do an upper endoscopy to confirm and, lucky me, she had an opening later that week.
If I ever have another procedure like this, here’s what I want to remember: -As a woman of childbearing age, will I have to provide a urine sample? -Either write medication info on my arm, or write it on a piece of paper and tape to my arm. How many miligrams, you ask? Uhh…. -Bring warm socks.
The gastroenterologist didn’t see any signs of GERD, but she did see signs of eosinophilic esophagitis. The inflammation is in the middle of the esophagus, and if I had GERD she would have seen more irritation closer to the stomach. She got the biopsy results back the week after that and they confirmed it.
(Also, my esophagus was killing me after the procedure. I don’t know whether it was too narrow for the scope to pass through comfortably or what, but for about two days I had to sip water and eat squishy foods to minimize discomfort when swallowing.)
She put me on budesonide. I’m familiar with the respules, because both my brother and I have used a nebulizer in the past. This time, though, I’m squirting them into a bowl, mixing in five packets of splenda per respule, and then swallowing the concoction.
What you need to know: -Make sure you’re not prescribed a pulmicort inhaler. I was, at first, and spent a very confused hour trying to figure out how to use it until I concluded a mistake had been made. The problem is that this inhaler doesn’t squirt the medication into your mouth—you have to inhale through the mouthpiece and the suction of your lungs picks up the powder and delivers it to your respiratory system. This maneuver doesn’t work if you want to powder to go to your esophagus. -Stick to the splenda packets. It might seem easier to get a box of baking splenda and just measure out what you need, but something has been done to make it fluffier so that its sweetness/unit of volume is the same as that of sugar. I tried using it, but it kept fizzing in the budesonide and I couldn’t figure out how much I was supposed to add.
The gastroenterologist also put me on a proton pump inhibitor (which is used to treat GERD). The jury is currently out on whether it will help my symptoms, but I guess it can’t hurt.
These are both short-term solutions, though. Ideally, we will identify what is triggering this reaction and I will stop eating that food.
To further that aim, I saw an allergist. She explained that eosinophilic esophagitis isn’t very well understood (unless you’re participating in a study, treatment depends on self-reporting, which isn’t necessarily reliable, and upper endoscopies, which are undesirable). Also, it has only been recognized relatively recently.
It is unclear whether the reaction must be caused by a food, and if so, whether the established methods of testing for food allergies will yield a useful result. Eosinophilic esophagitis is a non-IgE (immunoglobulin-E) disorder, but allergy tests look for IgE reactions because those are the ones that are life-threatening. Because the mechanisms of the reactions are not the same, the tests do not necessarily pinpoint the food that is causing EoE.
Allergy tests do provide a jumping-off point, though, and are generally preferable to what I call the hell-if-I-know method: eliminating the six most common allergens from your diet at once and seeing if that helps. For the record, the six most common food allergies are wheat, eggs, soy, peanuts, dairy, and tree nuts. Rice, veggies, and meat FTW.
We’ve started with a skin prick test. I had to stop taking allegra for a week before the test, and for some reason my scalp became unbearably itchy. The itching stopped once I started taking allegra again.
I got the results this week. I had a definite reaction to soy and peanuts (plus a small one for shrimp, which I might have inherited from my mom). The allergist says these proteins are similar, and cross reactions are common. She’s told me to try cutting all soy and legumes from my diet.
While skin prick tests do have a high rate of false positives, I am inclined to believe these results have merit.
It all fits. I brought this on myself.
About a year ago I realized that, in all likelihood, I was failing to meet my daily recommended intake of protein. I had heard from multiple sources that Americans eat way more protein than they need, so it wasn’t something I’d worried about. However, I don’t like meat. I don’t like the taste or the texture, and I definitely don’t like cooking it. Take most of the meat out of my diet, and that left me with fruits, vegetables, grains, and a small bit of soy, dairy, and nuts.
I decided to explore the culinary merits of beans and lentils. They went over so fantastically that now, a year later, I was eating at least one serving of legumes every day. This is significantly more than before, when my legumes intake was confined to the occasional bit of hummus.
It’s possible that the worsening of my eosinophilic symptoms is not caused by this great change in my diet, but one must admit that the evidence is not uncompelling.