Tuesday, May 21, 2013

Harmless Killer

We walk into the room and my jaw drops. Other conference attendees had said we would be staying in suites, but I had thought they would just be regular rooms. We were, indeed, staying in a suite with a small kitchen, table, couch, and TV separated from a bedroom and huge bathroom.

"They must have gotten us a really good deal," I comment as I dump my luggage near the door and look around.

From the other side of the room, my roommate examines the contents of the kitchen counter. "Wow, expensive wine!" she exclaims. A few minutes later, she roots through the basket of goodies. "Chocolate bars ... almonds ... Pringles—there's stuff here that would kill both of us ... Oh—Fun Dip! I remember those! Have you ever had those?!"

Diabetes is a major part of my everyday life, but it's not the only condition that affects my relationship with food. I have lived with diabetes for almost 22 years, since childhood; but there is another condition that I have lived with for longer and that, in many ways, has had a much bigger impact on my attitude towards food.

I don't remember when I first became aware of the fact that I had food allergies and that most other people didn't. I know that my parents suspected a food allergy since I was an infant, although it took years for them to pin down exactly which food I was reacting to. My first memories of restrictions are from when I was six or seven years old. I remember being offered ketchup chips and refusing. When we ate out at McDonald's, my brothers got fries while I went without. I remember reactions, too, but neither I nor my parents connected them to any particular food at the time. I had episodes of waking in the middle of the night itching, covered in hives, and episodes of facial swelling that made my eyes swell nearly shut. The antidote for these was Benadryl, cold compresses, and baking soda baths, and my parents wondering what the trigger might be. Unbeknownst to me at the time, they carried an EpiPen on my behalf, and doctors speculated that either potatoes or nuts were the trigger, so I avoided both.

Few people without food allergies understand the fear associated with it. Those of us with diabetes are careful with food ... but we don't fear food. Accidentally eating a pinch of sugar is not going to send us into diabetic ketoacidosis. But imagine if it did—if that's all it took, a pinch of sugar. One accidental scoop of sugar in your coffee and that's it—hospitals, monitors, IVs. For people with food allergies, that's the reality. It was around the age of nine or ten, if memory serves, that I had reactions that caused me to fear some foods.

My first memory of potatoes leading to a direct reaction came at a church-run event where international students prepared food for us to eat after the service. It was before diabetes came along, so perhaps I was eight. Our table had a Japanese student who prepared a dish of rice and vegetables. I remember my mom inspecting my plate as I began to eat. As the student walked by, she waved her over and pointed at something mixed into the rice. "What's that?" she asked.

"Potatoes," the student answered.

My mom turned to me instantly and told me to stop eating. I put my fork down. I had only eaten some of the rice. "I've never heard of potatoes in Japanese food," I heard my mom comment to my dad after the student had left. "We'll have to get her something later."

As they continued talking, my dad suddenly interrupted. "Look at her face," he said, staring over my mom's shoulder at me. I wondered what was wrong with my face. My right eye was itchy, but that was all the discomfort I felt. When my mom looked over, she saw the right side of my face swelling, my right eye nearly swollen shut. She insisted we leave and get Benadryl, despite my protests that it wasn't that bad.

Around the age of nine, shortly before I was diagnosed with diabetes in my hazy timeline of events, I suddenly didn't like my mom's Yorkshire puddings anymore. I told her, too, but she didn't really believe me at first. I couldn't quite explain why I disliked them, but told her they made me feel wheezy. They also made my mouth and throat feel funny. She continued to serve them at meals, though, and I would often take one bite to satisfy her and leave the rest. Eventually, she stopped trying to make me eat them. Some time later, she realized that she was cooking them near the potatoes. We already knew that I couldn't be near cooking potatoes—in a kitchen or fast food restaurant—without feeling wheezy. We used to visit friends for Christmas dinner every year, and I didn't even like that because I always felt wheezy around the dining area where potatoes had been cooked and served. My mom changed her cooking habits, but I never liked Yorkshire pudding much after that. Other foods were to follow: stews, soups, gravy. I am wary of eating these foods to this day, even when someone who knows about my allergy  makes a safe version.

I experienced my first severe reactions in my pre-teen and teenage years, both due to peer pressure from friends to eat food. The first that I remember was when I was about 11 years old. As we loitered in my friend's kitchen, talking while she ate some leftover stew her parents had warmed up, she suggested I try a bite—it was really good! After asking if it had potatoes (yes), I tried several times to refuse, but my friend cajoled—just one bite! She promised to make sure that there were no actual potatoes in the forkful. Eventually, I gave in.

I ate it quickly and handed the fork back, hoping nothing bad would happen. It didn't take long for me to feel a reaction starting. Within half an hour I was in the bathroom with my stomach writhing. My friend called through the door, asking if I was okay. I felt itchy, and wheezy, and sick, and miserable. I didn't know what to do. I didn't want to tell her how bad I felt, but I also wanted her to know that I had been right about not eating the stew. I do not remember the outcome of this reaction, but it was the first reaction that scared me.

When I was about 13, I had a similar incident. I was at another friend's house while her family had dinner. I declined the food, mostly because it wasn't a planned snack or meal time for me with the insulin regimen I was taking. She insisted that I try a few bites, and when I asked if it had potatoes and she said yes. I declined again. I didn't have to eat the potatoes, she said, just try some of the meat and veggies. Soon her parents overheard us and joined in trying to convince me to eat just the meat, promising there would be no potatoes. I reluctantly agreed, and ate a few forkfuls to satisfy them.

Shortly after dinner we went for a walk. As we walked, I could feel a reaction starting. I said nothing, and was grateful for the darkness as dusk fell. I could feel my throat tighten, my back crawling with itchiness and hives I knew were forming there, my lips and face prickling with heat. We walked further, and the further we got from her house the more anxious I felt. I asked if we could go back, my words feeling awkward through my lips, and she said we would go a bit further and then turn around. When we finally arrived at her house, the light from the entrance flooding over us, she gasped. "What happened to your face?!" she shrieked, calling for her parents. I said it was from the dinner, and asked her to tell her parents to call my mom. A few moments later the phone was in my hand and I was asking for Benadryl and my inhaler ... the planned sleepover that night abruptly cut short.

The good to come of these experiences was that my friends stopped trying to cajole me into eating potatoes. A potato allergy is a difficult allergy to have. Almost no one has heard of it—even most doctors—and then there's the already existing confusion between food allergies and food intolerances. Food allergies can be difficult for people to understand. How can something so harmless to one person be deadly to the next? How can something as small as a peanut or potato chip cause such a disastrous reaction? Since potatoes are nowhere close to being one of the top most common allergens (things like peanuts, tree nuts, shrimp, eggs, milk, and so on), some people don't take the declaration of a potato allergy seriously, and there are no labelling requirements for warnings on packaged foods. This means that potato can easily be hidden in foods, and I have had some "mystery reactions" to food that, despite having access to ingredients lists, I was never able to determine the cause and chalked up to hidden potato contamination.

Even though I refused food from friends, I soon learned that even adults couldn't be trusted. My first year at a summer camp for visually impaired teens, my mom wrote on the registration form that I was allergic to potatoes. Despite this, I always checked what was on the plate before eating. One night, we got served roast beef and potatoes. I told the staff I was allergic and they took my plate away, returning a few minutes later with a new one, sans potatoes. I knew within a few minutes of beginning to eat that something wasn't right. I ran to my room, got two Benadryl, and gulped them down with some water when I returned to the table. I sat there picking at my food, hoping that the Benadryl would take effect and prevent the reaction from getting worse, feeling my bottom lip stiffen with swelling and my back itching. I  listened to all the other campers talking and laughing, not caring abut anything, and wished I was one of them.

When I realized that this one was going to be a bad reaction, I excused myself from the table early and went to my room. I took a few puffs from my inhaler, curled up on my bed, and stayed there for hours, alternating between trying unsuccessfully to sleep and running to the bathroom. Painful cramps rolled through my stomach in waves. Swallowing felt like a ping-pong ball bobbing up and down my throat. My face and back itched intensely. I was miserable ... and told no one, campers or staff, what was happening. I should have been in a hospital. At one point my roommate came in and asked what I was doing. I told her I was tired, and was secretly grateful that she couldn't see the hives covering my face. By the time it was lights out, my stomach was finally calming down and the itching and swelling was fading. Swallowing still felt strange when I woke up the next morning.

As a teenager I did not carry an EpiPen. I did not know what anaphylaxis was and did not really know that food allergies could be life-threatening. This was mostly because I had never been officially diagnosed, since I had never gone to the hospital during a reaction. Back then, allergies weren't as common as they are today, and it wasn't until high school that I met peers with food allergies. In my mid-20s I was tested for the first time with a skin prick test that confirmed the allergy by a doctor. After the reaction at camp, I got much stricter about avoiding foods, and refused to eat anything that had caused a previous reaction—like stew and soup and meals that were prepared with potatoes, even if I wasn't eating potatoes directly. Through experience rather than education I learned about the concept of allergen cross-contamination. I often refused even if an adult said it was okay, unless it was my parents or someone who knew me, and my allergy well.

I also learned that potato starch was in all kinds of foods I hadn't expected. Crackers, ravioli, fish sticks, and rice chips. I discovered this initially by eating foods, having my mouth and throat itch after one or two bites, and then checking the ingredients. After the first few instances of this I began reading ingredients on everything, and telling all restaurant staff that I had an allergy when I ate out. I continued to have one or two reactions a year, but now the mistakes were minor enough that the reactions were usually not as severe. Over the years a few other mild food allergies, along with severe environmental and seasonal allergies, cropped up. At some point during my teens nuts went back on the menu. I went through a period in my teens and early 20s where I experienced some severe reactions from cold urticaria—a couple just as scary as my worst food reactions. During all this time I continued without carrying an EpiPen, and I did not think of my allergies as that severe. Even after learning that allergies could be life-threatening, I didn't think there was any real risk of having a life-threatening reaction.

In 2008, I was attending a conference where lunch was served. I had put "severe potato allergy" on the registration form, and assumed that this would be sufficient (teenage-trusting-lessons apparently being forgotten). When the plate was put in front of me I dug in with barely a glance. The fork was nearly to my mouth when I heard someone beside me shout, "STOP!" I froze and looked around. It was one of my closest friends sitting beside me. "That's a potato!" she said, sounding panicked. I looked back at my fork. What I had assumed to be a piece of apple or pear was, in fact, a slice of potato. And I had nearly eaten it. Given how violent my reactions to minute amounts of potato were, I was almost certain eating that slice of potato would have killed me. Fortunately, I had no reaction to speak of thanks to my friend's actions.

That incident scared me enough that I went to my GP, explained my allergy and symptoms, and got a prescription for an EpiPen. Suddenly, I felt a lot more relaxed eating foods that others had prepared, and especially eating out. In the following years, I had a few small reactions, but nothing major. Last year, while in Las Vegas, I nearly ate a bun made with potato flour. It was pure chance that I found out before biting into it. I treated the minor reaction that resulted from the contact with a Benadryl, and was glad for the EpiPen I always had with me, just in case. Still, in the back of my mind I thought maybe I was overreacting. I had never gone to the hospital for a reaction, and I hadn't died, after all. Maybe I was being overly-paranoid carrying an EpiPen. I hadn't had a severe reaction in so long ... maybe I would someday outgrow the allergy. I wondered if maybe someday I would be able to eat a potato chip without something horrible happening. I had even discussed the prospect with friends, deciding that poutine would be my first potato-based meal if I could ever eat it.

I thought that way until two nights ago. Two nights ago, I almost used the EpiPen.

A few nights ago I stayed late at work to help run a youth event our office was hosting. There were food and drink for the teens, and after cleaning up at the end of the evening the remaining food was divided up among the staff. I brought home a container of tortilla chips. "Don't eat chips from the yellow bowl," I had been warned before the event started. Our office has several staff members with severe food allergies, so there is a great deal of caution and exchanged warnings around food. This evening, the tortilla chips were in the white bowl, the potato chips in the yellow. I didn't eat many of them, and did not eat any of the dip once people arrived and began dipping tortilla and potato into the same containers.

Two nights ago, I decided to have a few of the chips I had brought home. I did not even think to double-check. I picked a chip off the top and bit off a small piece, planning to eat them as "mini chips" to make a few chips last longer, as I usually do for my blood sugar.

As soon as I tasted it I realized it wasn't a tortilla chip. I examined the container and discovered that someone had dumped the few remaining potato chips into the larger container of tortilla chips. I dropped the chip I'd just bitten on top and the entire container went into the garbage. I had swallowed the chip fragment too quickly to spit it out once I realized it was potato.

I didn't think too much of it. For the first five minutes, I felt fine. I was sure I would have some sort of reaction, but I thought it would be minor, as usually happened with accidental exposure. Some itching, maybe some wheezing. Yet, I had never actually eaten potato. I had a few close encounters with French fries that I spit out immediately, but beyond that cross-contamination and traces of potato starch was it.

Five minutes after eating the piece of potato chip my mouth and lips and throat became intensely itchy. Minutes later, my entire face itched. I still didn't think much of it, but I did take a Benadryl. I was typing on my computer a few minutes later when I noticed the palms of my hands itching. I rubbed them on my pants, and then went to wash them. The itching just intensified, and was joined by my armpits and some other areas of my body far distant from my mouth or face. My face, by this point, was itching even more and starting to prickle with heat.

Over the next 20 minutes the reaction exploded. My chin, forehead, and then entire face and ears began to swell. I looked at myself in the mirror and saw that my entire face was flushed bright, bright red.  The itching spread to my entire scalp, then spread down my neck to my chest and back. The itching was soon joined by hives. I was nauseated, and kept feeling like I had to go to the bathroom to throw up. My heart was racing. Calm down, I kept telling myself, calm down, you can still breathe. I could still breathe—but my throat itched, swallowing felt constricted, and I could feel myself beginning to get wheezy.

I felt like my body was completely out of control. My body was completely out of control—my immune system mounting a full-scale nuclear attack on a few potato proteins. I sat with the phone in my hand, debating whether to dial 911. My nose and ears were so itchy and congested that I had sneezing fits. My heart continued to race. My throat felt tight. Maybe I need my EpiPen, I thought, maybe I really do need it ... I got the device out of my purse and even took it out of its protective plastic case, debating. I was terrified the next step in the reaction would be me passing out or my airway closing.

In hindsight, I probably did need the EpiPen, and certainly some emergency medical attention and monitoring. In the end, I didn't use the epinephrine or call 911. I took another Benadryl, used my inhaler, and sat with the phone nearby in case things progressed any further. I concentrated on not scratching the hives that covered half my body, somehow thinking that scratching them might make things worse. I did not want to call my parents or my friends because I didn't want to worry them. I did not want to call 911 because I didn't want to cause a scene or spend the night in the hospital. I was not thinking rationally at all.

I was lucky. The reaction did not get any worse, and after an hour or two it began to slowly fade. At that point I called one of my best friends, who has a tree nut allergy. In a shaking voice I told her what had just happened. Her first question—after asking several times if my breathing was okay—was why I hadn't used my EpiPen. I don't have a good answer for that, and if I ever have another reaction I will not hesitate to call 911.

A few weeks ago I was volunteering with some colleagues at a trade show where we were handed packages of trail mix. The two people I was working with, one of whom was the same person I attended the conference with a month ago, were both allergic to nuts, so I ended up with all three packages. Tonight, I decided to try one of them. I was positive that trail mix would not have any potato in it, but feeling extra-paranoid due to the recent reaction, I stuck the package under my video magnifier and after checking the nutritional label (15g of carbohydrates), I zoomed in on the low-contrast black text on red background and squinted through the hard-to-read capitals:
INGREDIENTS: PEANUTS, RAISINS, WALNUTS, CASHEWS, SUGAR, DRIED CRANBERRIES, HONEY, PEANUT OIL AND/OR VEGETABLE OIL AND/OR HYDROGENATED VEGETABLE OIL, SALT, MODIFIED POTATO STARCH, CORN MALTODEXTRIN, XANTHAN GUM, NATURAL AND ARTIFICIAL FLAVOURS [CONTAINS MODIFIED CORN STARCH, GUM ACACIA, CARROT JUICE, MOLASSES, RAISIN JUICE CONCENTRATE, CITRIC ACID, PROPYLENE GLYCOL ALGINATE, COLOUR, BARLEY GLUTEN], BHA, TBHQ.
I stared at the package in disbelief, thankful I had checked. I put the packages aside, adding trail mix to the list of foods that could contain potato starch. I e-mailed my colleague and joked that, like the hotel room food, we'd been given stuff that could kill both of us. I asked if she knew of anyone else at work who would enjoy them and, most importantly, find them harmless.

3 comments:

  1. You poor thing having to check all the packets. On the other hand you must have a lot of good old fashioned home cooked foods without any random additives like potato starch!

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  2. I've had similar experiences--from people telling me that I'll just avoid the nuts in the cake to severe reactions that I should've used an epi-pen for. A few things.

    1. Epi-pens do make me feel safer.

    2. Allergic reactions mess with my head. I can insist that I'll use an epi-pen during my next reaction, but when it comes to that, I don't. Sometimes I even refuse to take benadryl--and I sound reasonable when I refuse, saying I don't want to be tired!

    3. When I know I've eaten something that might be a problem, I take benadryl before the reaction starts. More likely than not, I've avoided some really bad reactions like this.

    4. My allergist told me that because I have a history of severe reactions, I should use an epi-pen for every, single reaction, regardless of its severity. I can't say I do this, but it's probably good advice. :-)

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    Replies
    1. I think the biggest lesson I learned from this latest reaction is that if I'm ever sitting with the phone debating whether to call 911, it's time to USE THE EPIPEN AND CALL!

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