Eating out with food sensitivities can be frustrating

We had a teacher work day here at school in which we were encouraged to go off campus for lunch with colleagues. A small group of us headed to a local Mexican restaurant that had just opened. We were all excited to try the food. But sometimes eating out can be a challenge for me because of my Ehlers-Danlos syndrome (EDS) food sensitivities and alpha-gal syndrome.

With my EDS, overly heavy or fried foods upset my stomach. I can have french fries or chicken tenders, but not both. Prior to developing alpha-gal syndrome — a reaction to a tick bite that makes me reactive to the mammalian protein alpha-gal — I still couldn’t eat a rich dish like fettuccine Alfredo without getting an upset stomach. I rarely had trouble eating out with just my EDS sensitivities, though, because it wasn’t hard to avoid triggering foods.

But once alpha-gal syndrome was added to the picture, it became much more difficult. When you can’t eat anything derived from a mammal, which includes meat as well as dairy, gelatin, and many other ingredients, it feels impossible to navigate. I eat a vegan diet with the addition of poultry, seafood, and honey.

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I don’t like making things difficult for others, and I’m not a fan of drawing attention to myself. Federal law requires chain restaurants to publish nutrition information, so I can look up the options online. Even if there aren’t many I can eat, I can at least find out. But who wants to eat at chain restaurants all the time? My friends and I have always loved trying out local mom-and-pop places, but that’s much more complicated for me now.

When I looked up the menu online for the restaurant my colleagues and I were heading to, I saw that they had a vegetarian section, which sounded promising. If we’re already down to vegetarian, it’s usually not hard to make sure it’s vegan. I ordered a fajita veggie bowl, asked them to hold the sour cream and cheese, and thought I was good.

As the server put my plate down, though, I realized I hadn’t asked whether the veggies were cooked in butter or oil. I could tell by how they looked that the vegetables had been cooked in butter, and the server confirmed that they had been. I found myself in the awkward position of sitting there with a plate of food I couldn’t eat while my friends ate their lunch. Not only was I incredibly frustrated, but my friends also felt terrible even though it wasn’t their fault.

I ended up getting my meal to go and gave it to someone else who I knew would enjoy it. I was able to eat the chips and salsa and then had some fruit and yogurt when I got back to the office. It wasn’t actually that big of a deal, but in the moment, when I simply wanted to go out to lunch with my friends and enjoy a little bit of time away, it really bothered me.

I’m not sure there’s a big lesson for me to learn from this experience other than sometimes things happen. I can either be frustrated about it or focus on realistic positivity, in which I accept that those feelings are legitimate and then decide to move on and focus on better things. Next time I go out, I’ll make sure to ask all the questions before I order.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.