Thursday, May 8, 2014

Eosinophilic Esophagitis

It started one ordinary lunch break in the spring of 2008.
Sitting with colleagues, I dug into the plate of rice and chicken I'd just ordered—a bad habit I'd slipped into lately, instead of packing my own lunch. The discussion around me involved hockey playoffs, and not knowing much about hockey compared to the others at the table, I kept quiet, content to listen.

Not two bites into my meal I felt something lodge in my throat. I attempted to swallow several times, and when it wouldn't budge a small stab of fear jabbed at my stomach. I took a sip of water and found I couldn't even swallow the liquid. The conversation around me faded. I could still breathe without difficulty, but my esophagus seemed completely blocked. Grabbing my phone, I bolted for the staff washroom. I grabbed a paper cup from the dispenser and tried several gulps of water, which did nothing but come right back up, causing me to come dangerously close to inhaling the liquid.

Hearing someone enter the bathroom, I ducked into the stall, listening until they finally left. When they did, I stood shaking, trying to think of what to do. I had no idea what was going on. The only reasonable assumption I could think of based on my past experience was that I was having an allergic reaction; but I had never experienced my throat becoming completely blocked, and wasn't having any other symptoms of a reaction.

I punched my parents' number into my phone. After the first ring, I hung up. I desperately wanted help, but they were at work and, even if they happened to be home and answered, wouldn't be able to help me from afar.

After fifteen minutes I made my way unsteadily back to the table where my co-workers sat. One asked with concern if I was all right, and I answered in a shaky voice that I didn't know what was happening but that I couldn't swallow food or water.

Everything stopped. Suddenly, everyone's attention was on me. Everyone at the table thought that I should go to campus security where there was a first aid attendant. I agreed, and a fellow instructor walked with me out of the cafeteria and down the hall to security.

"How do you feel about 911?" the security guard asked after I explained the situation, his fingers poised above the keypad and the receiver already in his hand. I could hardly believe this was happening.

"I'd rather not ..." I said, knowing even as I said it that it was probably the wrong decision. "Not unless I have to."

The guard was, understandably, concerned that if I was having an allergic reaction my airway might close off next. But aside from not being able to swallow, I didn't feel like I was having a reaction. I told the guard that I would let him know if it worsened, and returned to the lunch table, where I sat talking, trying to distract myself, periodically trying to swallow. As the lunch break came to an end—at this point I had been unable to swallow for over an hour—I suddenly felt like my throat was getting worse. I stood up suddenly. "It's getting worse. I'm going to go tell them to call 911," I announced. Murmurs of agreement swept around the table, and a colleague stood to walk me back over to security.

And then, on the way out of the cafeteria, the blockage disappeared as suddenly as it had come. I returned to the table and took a tentative sip of water. It went down without so much as a splutter.

Later that afternoon I visited a doctor on campus, who agreed with me that the symptoms didn't entirely match those of a severe allergic reaction. He advised that, if it happened again, I should go to emergency.

That was the first instance of food impaction, but not the last. Several months later it happened again as I ate dinner in my apartment. I called my mom, and she was on her way over to drive me to the hospital when the obstruction once again cleared with the help of large amounts of water. Instead of the hospital I went to a walk-in clinic, where I was advised once again to go to emergency if it happened again, and tests were ordered, all of which came back normal.

For about five years I experienced food getting stuck in my throat intermittently. As it happened more frequently, it also became more severe—several times I had to force food back up before I could swallow enough water to force the rest down—which is just as disgusting and unpleasant as it sounds. Each time I did so, I felt in danger of choking and thought about the hospital, but 911 always felt silly when I didn't feel like my life was in danger, despite doctors' recommendations. The entire situation was unpleasant no matter where it happened, but I feared it most happening at work or during social events. In these situations I would be forced to excuse myself to the bathroom, always afraid that this time really might be a medical emergency. Over the years swallowing in general got more and more difficult. It progressed to the point where I was using water at every meal to help food along, and I refused to eat if I didn't have access it, for fear of food getting completely stuck. I also began to experience near-constant heartburn for the first time in my life, and developed severe stomach pain. I did not connect any of these symptoms with one another, and felt like a hypochondriac bringing so many separate complaints up with my doctor, so kept quiet, and hoped it wasn't something serious.

I had a bad habit of bolusing after beginning a meal, which meant that the interruptions to my meals for 30 to 60 minutes or more (and often the entire meal was trashed, because I didn't feel like eating after the ordeal) did not have an impact on my blood sugar. One night, however, in the summer of 2013, I bolused and as soon as I began eating felt the familiar painful lump lodge in my throat. I tried all my usual tricks, but the food would not budge in either direction. After 45 minutes, with my blood sugar dipping into hypoglycemia and unable to eat or drink, I picked up the phone and for the first time really, seriously considering calling 911. But I was expecting company, and (as usual) didn't want to cause a scene. Eventually, after more than an hour, I managed a to clear enough of the blockage that I was able to gulp down some fruit juice to raise my blood sugar.

That was the final straw. That was the first situation that felt truly life-threatening to me and, desperate to know what might be causing it, I googled "difficulty swallowing." Amid the hits about strokes and cancer, I stumbled upon a condition called eosinophilic esophagitis. Its symptoms were described as difficulty swallowing, food getting stuck in the throat, heartburn, and stomach pain. Those diagnosed often had a history of allergies or asthma. It sounded exactly like me, but I knew enough to know not to self-diagnose through the internet. I went to my GP and described my symptoms, without mentioning the website I'd read about eosinophilic esophagitis. He didn't know what it was, but knew enough to refer me to a gastroenterologist.

At our first appointment the gastroenterologist listened to my symptoms and history. "There's a condition related to allergies and asthma called eosinophilic esophagitis," he said without hesitation. "I think you may have it."

An endoscopy followed, where the doctor found signs of possible damage caused by eosinophils and took biopsies, which found increased eosinophils in the lining of my esophagus.

So in January of 2014, I received the third life-changing diagnosis of my lifetime. The first (although I don't remember it) was retinopathy of prematurity. The second was Type 1 diabetes. This third was eosinophilic esophagitis. In this condition, which lies somewhere between the immediate, life-threatening reaction of anaphylaxis and the chronic, insidious reaction of celiac disease, the immune system deploys eosinophils—a type of white blood cell—to the esophagus to intercept food proteins which are incorrectly targeted as a threat. The catch is that the condition is not triggered by a single food, like gluten; it can be triggered by multiple, even dozens, of foods within the same individual. And, since the reactions are often delayed, allergy testing is not always accurate, and in some individuals the disease isn't triggered by food but by something entirely different, such as environmental allergies or an unknown cause. Scientists don't fully understand the disease, but like other allergic diseases such as asthma and food allergies, EoE is on the rise.

It was a relief, in a way, to finally have a name for what was happening to me. To be told in no uncertain terms that when food got stuck it was a medical emergency. Since I had read about EoE well before my diagnosis, it came more as a confirmation that a total shock. I trialled a proton pump inhibitor to see if that helped, with no effect. I trialled a course of swallowed steroids from an asthma inhaler, but it caused such unpleasant side effects that it was hard to tell if it helped. What I was not entirely prepared for was being thrust into the world of multiple, major food allergies. I have lived with a severe food allergy my entire life. Reading labels and alerting restaurant staff was nothing new to me. But walking through a supermarket and not being able to eat most of the food there was very new.

Food allergy testing from an allergist revealed that I am allergic to milk—which I had already been largely avoiding due to allergy symptoms. In addition to this allergy, however, tests showed that my immune system is being triggered by wheat, eggs, peanuts, soy, shellfish, sesame, and tree nuts. Skin tests also confirmed my environmental allergies that, for the most part, I already knew—I am allergic to dust mites, tobacco, all grasses, trees, cats, dogs, and horses. The allergist declared that my allergies and asthma were, in general, not well controlled despite already taking daily antihistamines and taking measures to control environmental exposure to allergens. I walked away from the appointment with a list of foods to avoid and a bag full of antihistamines, nasal sprays, and inhalers.

Like any life-changing diagnosis, I've felt in some ways like my life has been turned upside down. For a few days after the appointment with the allergist I walked around constantly feeling on the verge of tears. I didn't want this—in particular, I didn't want to have to avoid multiple foods for the rest of my life. But a week into the diet I began to feel better than I had in a long time, and suddenly felt a sense of hope. That hope was dashed a few days later when an allergic reaction to something caused a huge rash on my face and the return of intense stomach pain. But soon enough this, too, was replaced again by a period of feeling great.

It's been a rollercoaster, as any chronic illness is. I have found online groups that, like the diabetes online community and online ROP community, have been a tremendous source of information and support. I cannot imagine being diagnosed with a condition like this before the days of the internet. But, in the six weeks since I went from having two or three food allergies to having nine or more (I am still having improved, but daily, symptoms), the good days have begun to vastly outnumber the bad. I found that my allergies—which had begun to interfere with my diabetes control due to allergic reactions to infusion sets—were better controlled than they had been in ages. My skin tolerated infusion sets better—they still get itchy, but no longer so irritated that they affect insulin delivery. I've had far fewer instances of breaking out in random hives. My stomach no longer hurts constantly. Heartburn has become much less frequent. I can even eat the majority of a meal without water sometimes, if I want to.

I am not at the end of my journey—not even close. There may be more foods I have to avoid—I have been instructed to avoid anything I suspect is causing symptoms. There may be medications, if I'm still having symptoms despite food avoidance. There will be further endoscopies to monitor the condition. There will, at some point, be an attempt to re-introduce some foods to see if they trigger symptoms. I am learning, too, how long foods take to trigger symptoms and how long symptoms take to retreat. As with most chronic illnesses, trial and error and patience are a virtue when it comes to EoE.

But, despite all this, I've managed. I've survived shopping, work luncheons, and even air travel and two conferences. I have some exciting summer plans that, for a moment, I considered cancelling, but in the end didn't. Because although I would never ask for such a diagnosis, I've begun to believe I can handle it—I have been handling it, through all its ups and downs. I truly believe that having had prior experience with a disability and chronic illness and allergies has helped me to cope in many ways. Despite being life-changing, chronic condition, I won't let it change the course of my life.


  1. Wow, Jen. I remember when you were talking about EoE and I commented on how I know someone who has the condition and it sounds exactly like you. I'm very sorry you got the diagnosis, but I'm also happy that your allergies are improving. Hopefully you'll be one of the people whose EoE is only caused by food allergies.

    I live with a severe allergy to nuts and peanuts. My allergist and I also suspect an allergy to sunflower seeds (I can't get tested until August because of allergy season, so I'm just avoiding them). I was diagnosed when I was 14. Between diabetes and food allergies, I sometimes feel like my life is dictated by the things I can't eat, but those moments get fewer and farther apart as time goes on. You'll find new foods, new products you can have. (I especially LOVE Sunbutter, which I think tastes better than peanut butter. It's made on nut-fee equipment.)

    I wish you a lot of luck with this. Getting a third major diagnosis isn't easy (don't I know it!) but even though it's life-changing, it isn't the end of the world. (I'm sure you know that, but it sometimes helps to hear it, anyway.)

    1. Thanks for your comment. I am still having daily symptoms, but they are definitely *much* better than they were. At my last appointment the allergist was a bit disappointing and acted like he didn't know quite what to do with me, still having symptoms even avoiding nearly 10 foods. He just kept sighing and saying, "You're very allergic ..." Not helpful!

      I've started keeping a food diary so that i can tease out what foods cause problems; I go from feeling fine one day to having major symptoms the next, so clearly I'm still eating stuff that my immune system hates. But in general my allergies are better, as long as I take the medication. I think eliminating milk (which was an immediate IgE allergy) played a big part in this, and I no longer feel allergic after eating most of my meals after its elimination.

      But you are right - it's life-changing, but it's not the end of the world. Even if I'm having to pack literally everything I eat, I am getting used to this and even finding works-around for travel. (I haven't yet had a successful eating out experience, my food always ends up causing a reaction or me noticing that it contains something I can't eat.)