It's just so frigging hard to explain.
My soy allergy is complicated, to say the least. And truthfully I've never had a good way of communicating it so most of the time I just say no to soy in general. Some allergies are not so cut and dry. My dairy allergy, for example, is a firm do not eat overall and I avoid it entirely. From whole forms of dairy such as cheese or milk, to additives like lactose and casein. But what if your allergy lies somewhere on the periphery?
Here's the deal. I was severely allergic to all soy as a young child but the severity has gone up and down over time. I'm allergic to the protein, so that means no tofu, edamame, miso, soy butter, soy milk, or whole soy in any form. It does mean that I can have soy sauce though. And I love soy sauce. I can tolerate some soybean oil, or if there is soy lecithin or some other form of soy as one of many ingredients in a product (for example, some vegan butters). I don't buy soy oil to cook with at home. I do buy things that say "may contain soy".
The grey area is so wide. I once had a bite of a banana loaf containing tofu and was just fine with antihistamine after experiencing a slightly itchy mouth. As a young kid (who clearly didn't understand the severity of anaphylaxis) I would eat tofu "ice cream" bars and not tell my mom that my mouth was on fire, even though if it happened today I'd definitely use my Epi Pen. And then in 9th grade, at age 13, I drank some soy milk that my mom had specifically asked me not to test until she was home, then got into a hot shower, and boom I had an anaphylactic reaction that taught me a lesson I'll never forget. I was confused about the severity because soy had always sent mixed messages.
So how do I communicate my soy allergy? Well, I just tell people I can't have it altogether. My family knows my restrictions and tolerances, but outside of that it would be way too muggy to try to explain this to anyone else. Most people don't understand what it means to be allergic to "soy protein" but still be able to have some forms of soy. So I elect to go fully soy free at restaurants, people's houses, parties, or anywhere else food is served to me. I avoid presenting recipes on EAF that contain soy sauce because believe it or not, it does cause confusion for people that know me.
Well, this was just enough pondering on paper to get you through your bus ride or Uber drive. Do you have an allergy that's hard to explain?