The time I figured out food was trying to kill me

Screen Shot 2014-09-10 at 9.06.42 PM

Back when I was a kid, I couldn’t understand why anyone would want to drink milk. The taste was nothing special, and since it made my lips and tongue itchy and made it hard to swallow, what was the point? Ice cream and cheese were fine because the taste made up for the discomfort, but why drink milk?

When I was around age fourteen or fifteen, the little town in Maine where my family always went for a week in the summer had a very sudden and very dramatic boom in the soft serve industry. Every business in town sold soft serve, and we went to a different one every night. I remember at the end of the week, as I was finishing a chocolate and peanut butter ice cream shake, I began to think that maybe the chest and neck pain wasn’t really worth it.

In high school, my doctor suggested I might be lactose intolerant, which seemed as good an explanation as any. Lactose is a type of sugar in milk. (You can tell by the -ose ending, like glucose or sucrose). When you’re lactose intolerant, it means your body doesn’t have the right enzymes (lactase) to digest the lactose correctly, so you end up with a lot of gas and stomach cramps. Drinking milk is actually very unnatural, and most humans don’t have the ability to digest milk after they’re weaned from their mother. It’s only people from particularly dairy-centric cultures who have the enzyme, which is why people of Asian or African descent are more likely to be lactose intolerant, while people of European decent are not. And maybe I didn’t get those symptoms, and lactaid pills did nothing for me, but it was the best explanation I had.

As I started college, my intermittent swallowing problem became drastically worse. I’d be in the middle of a meal and my esophagus would close like a fist, making it impossible for me to swallow anything at all, even water, until it went away on its own—something that could take a few minutes or, in one terrible case, up to twelve hours. I could breathe fine, but it made eating in public very stressful. When you can’t even swallow your own spit, public humiliation is pretty much inevitable. I left the college dining halls in a panic at least once a week. My doctors tried everything. I drank barium in front of an x-ray while they videotaped my throat to see if there were any weird pockets in there. I ate barium-covered french fries and tuna salad. One doctor thought it was being caused by a strong gag reflex (nope). One thought I had heartburn, and prescribed antacids (nope). One gave me nitroglycerin to take whenever the attack happened. Nothing really helped.

Sophomore year of college, some students ordered Indian food, and I tried some. I wasn’t sure what one of the creamy sauces was, so I dipped the very tip of the tines of my fork in it and touched it to my tongue. I immediately had what I thought was an asthma attack but, looking back, could have been anaphylaxis. I didn’t know that. I took my asthma inhaler and, by sheer luck, was fine.

You’d think by this point that I’d know I was allergic to milk, but it was complicated. For one thing, there was the lactose intolerance diagnosis, and even though my symptoms didn’t match up, it was the only explanation I knew. For another, I still could eat cheese pizza and creamy coffee and really fudgey brownies, so I couldn’t really be allergic, right?

 

Screen Shot 2014-09-10 at 9.07.06 PM

It wasn’t until the year after college that I had a diagnosis. I was volunteering as cast at a LARP at a summer camp in the middle of nowhere. The LARP ran from 8am to 2am all weekend, so they kept us supplied with lots of coffee, tea and hot chocolate. I got in the habit of dumping a packet of hot chocolate in my cup of coffee, topping it all off with a few spoonfuls of powdered creamer, and downing a few of those throughout the day and night. One night, when I was a few sips into my concoction, I began to have an itchy mouth and trouble swallowing. It didn’t stop there: within minutes, my face swelled up and I started to get hives all over my entire body, from my scalp to the bottoms of my feet. I panicked, but luckily my friend noticed my distress and got the on-site EMTs, who dosed me with some anti-histamines and told me to let them know if it didn’t clear up in an hour. It didn’t go away, but I didn’t tell them, and though I was still having trouble swallowing the next morning, I got over it by lunchtime. Again, looking back, I can see how irresponsible that was, both on my part and the part of the EMTs. I should have gone straight to the hospital. But none of us really knew.

After that, my doctor sent me to an allergist. When I admitted that I’d had milk (the hot chocolate packet and the creamer both had powdered milk in them) even though I knew I was sensitive to it, the allergist bluntly told me that I could have died. Even with a mild allergy, you can have a severe reaction at any time. Most of the people who die from anaphylaxis do so because they didn’t get a shot of epinephrin within thirty minutes of the attack. I was prescribed two Epi-Pens and was told to avoid milk at all costs.

Oddly enough, as I cut milk out of my diet, my swallowing problem (which had seemed completely unrelated) went away. It was only recently that I found out it was called eosinophilic esophagitis, and is caused by food allergies making your esophagus swell.

I got more and more allergic with each passing year. First I had to stop eating milk chocolate; then any baked goods made with milk; then cooking with butter; then I had to get very serious about reading labels to find hidden sources of whey. Now, I have reactions with food that was produced on machinery that previously touched milk. Sometime soon I’m going to have to avoid restaurants entirely and bring my own food with me wherever I go.

Let me tell you, it’s extremely hard to avoid milk. Most people don’t really comprehend that. Here, I’ll give you a little test. I’ll list some foods, and you tell me which ones have milk in them and which ones don’t.

  • Coffeemate Non-Dairy Creamer
  • Thomas’s English Muffins
  • Daisy Sour Cream
  • McDonald’s french fries
  • KFC Original Recipe Chicken
  • I Can’t Believe It’s Not Butter
  • Bailey’s Irish Cream
  • Carnation Instant Breakfast
  • Kit Kat bars

Ok. Have you figured it out? If you thought that was a trick question, it was. They’ve all got milk in them. Yes, even the non-dairy creamer and the not-butter (Guess what! It has butter in it). Other things that can (but not always) have milk in them include hamburgers, hot dogs, bread, cereals, most chocolate, taco seasoning, mashed potatoes, deep fried foods, frozen dinners, salad dressings, granola bars, instant oatmeal, and every single dessert on every dessert menu of every restaurant (this last one is the bane of my existence). Pumpkin spice lattes have milk in the flavor syrup.

Don’t feel bad about not getting that list correct. I once had to inform a waitress that sour cream is made with milk, and I had to tell a different one that butter is milk, too. So is sweetened condensed milk. Evaporated milk. Lactaid. Margarine. The list goes on.

This week, I finally bought a medical alert bracelet. I hope I’ll never be in a situation where I’m having a reaction so bad that I can’t speak, but it’s possible, so having that bracelet gives me a little peace of mind. As I get older, anaphylaxis is more likely to cause drops in blood pressure that will make me pass out. I carry two epi-pens at all times and so far have not had to use them.

Food is such an integral part of culture that being unable to participate is alienating. I like watching the food channel, even though I know I can’t eat anything at any of the restaurants they visit, and I can’t eat most of the food they make. Food commercials don’t apply to me. I generally can’t eat in food courts, in airports or train stations, at most fast food places. Cookouts are hard when you have to track down the packaging to make sure there’s no dairy in the meat or the buns. I can’t eat cake at birthday parties or weddings. No buffets or pot-lucks.  I can’t eat Halloween or Easter candy. I don’t even try to get popcorn at movie theaters. If I can’t read a nutrition information label or interrogate a cook, I can’t eat it.

I’m not asking anyone to feel sorry for me. I don’t miss cheese or ice cream or any of those other things. Having a food allergy is like having really effective aversion therapy. Food made out of milk is just as appealing to me as food made out of poison ivy. Okay, I miss brownies, but I can make those myself without dairy, so I can deal. Cheeseless pizza is better than you’d think. I adore soy lattes. Did you know Oreos don’t have any milk in them? I could eat an entire package in one sitting.

I’m writing this post because it’s amazing to me how I managed to muddle along for the first thirty years of my life without knowing most of this information. Maybe this post will help someone else who hasn’t put the pieces together yet. If it does, let me know.

Advertisements