Wedding Cake Blues

Last week I posted about my recent diagnosis with of a disorder called Eosinophilic Esophagitis (EE), which means I have an allergy to some kind of food. Although I’m still not entirely sure which foods make me sick, I have discovered that cutting out gluten makes me feel immensely better. But cutting out gluten isn’t just about bread, it means eliminating nearly everything processed and anything that might have come into contact with wheat at some point in time. Farewell to pizza, pasta, oatmeal, naan, cookies, cake, granola bars, trail mix, cereal, cupcakes, crackers … the list goes on for much longer than I’d like.

Cutting gluten out of my diet has been relatively simple at home. I just don’t eat things with wheat. If I’m making something with a sauce, I can check the label.

But eating out with friends or grabbing a quick bite on the road can spell danger quickly. Not only does nearly everything have obvious gluten components — think sandwiches and fried shrimp — but little things like sauces and “corn” tortillas may still contain wheat flour.

Even worse are the things that I know that I can’t eat, but want to so badly, like the absolutely amazing groom’s cake (pictured here) at our friends’ wedding this weekend. It was moist and springy. I imagined that it had just the right amount of chocolate and balanced with a little bit of vanilla. It looked like the kind of cake that you could let sit on your tongue for a minute before chewing. I love wedding cake. I almost love it more than dancing with friends (maybe) during the reception. And this time, not being able to eat it made me so sad.

I feel a little pathetic typing this out, but not being able to eat cake almost made me cry.

Tomorrow the pity party will end as it is my first appointment with an allergist where I’m told there might be a scratch test or I may be put on an elimination diet. Whatever they figure out, part of me hopes that it doesn’t have anything to do with wheat. Either way, I know that I’m going to have to get over it. I’ll have to move on and learn to live without the bread.

In the meantime, dark chocolate squares are fare game and I’m ready to play!

Allergic to Food

Food makes me sick — a lot. I never really knew why, though. I’ve been poked and prodded with scopes. I’ve been biopsied and even found myself in the emergency room once with abdominal pain so intense that I couldn’t stand.

Through all of this, I never really had a primary care physician. Who has time for things like building a relationship with a doctor when you are working 60-70 hour weeks (or more), responding to the largest manmade environmental disaster in North American history? The few doctors I’d seen over the years just wanted to hand me a prescription for everything. Got a neck pain? Here are muscle relaxers and pain killers, they’d say. Got an upset stomach all the time? Take this medicine every day twice a day for the rest of your life, they’d advise. You’ll be fine.

It’s amazing the difference a good doctor can make, though. A few exams and questions into a relationship with my primary care doctor and I had a GI specialist. A quick conversation with him and I was signed up to check my small intestine for Celiac Disease.

But what they discovered was nothing like what they’d expected.

I was diagnosed with eosinophilic esophagitis, which is likely caused by a food allergy. How, I wondered, have I lived this long without knowing about this? Here’s the thing: for most of my life I have lived with but ignored the following symptoms:

  • Chronic upset stomach,
  • Acid reflux,
  • Food getting stuck in my throat, and
  • Stabbing pains in my chest — the kind that make you feel like you’re having a heart attack.

I just always thought these things were normal because I’ve lived with them for so long. These symptoms are normal, right?

Having the doctor tell me that it’s not supposed to be that way, that there is another, better way to live, was pretty dramatic.

So now I still don’t know what I’m allergic to (although I will soon once I see my new allergist), but I at least know that this is something that I can fix. I feel so relieved and liberated, but at the same time terrified … of food.

I’ve never encountered anyone else with this disorder before, although I’m sure there are folks out there because there’s a whole non-profit dedicated to EoE, in addition to countless other blogs and websites.

But here’s the thing, I love, love, love food. I love to cook it. I love to eat it. I’m a “foodie,” by definition, but I really hate that term. I just like good, healthy, delicious food. So as I learn more about this and as I learn what I can and cannot eat, I’m going to share it here. After all, someone else may be living with the same symptoms and, like me, has been ignoring them.