Help me understand what my doctor is telling me about my bizarre new party trick, where my lips swell up to Kardashian proportions. Also, help me be a good patient and actually follow through on the prescribed course(s) of action.
You are not my doctor. I am not seeking your medical opinion. I am seeing my own specialist. Yes. All of that. I just need help making an informed decision about how to move forward with those treatments, and my doctor's explanation was a little too flip to be helpful.
So my lips have started swelling. Majorly.
(Warning, I look like someone's science experiment gone wrong.)
This started only after I began allergy shot treatments and has seemed to get worse over time. It stared simply enough. One random lip swelling after breakfast one day. But then it kept happening. It never concurred with my allergy shot, and if it was food, the list of things I'd eaten was too long to really ferret out what it might have been. It got more severe and more frequent - up to and including throat swelling. (I've got an epi pen, but haven't ever had to use it because I've never had respiratory distress related to this reaction.)
Before getting allergy shots: nil. Never had this reaction. Didn't even know what throat swelling felt like.
So I dutifully went back to the doctor's office and showed him the photo(s), and he said some stuff about cross-reactive food allergy, or an "enzyme deficiency." The prescribed next steps left me feeling a little confused, and although I asked questions, I think I got the "you're not paying me enough to give you a science lesson, kid" answer from the doctor. I was instructed to have a blood test (to determine if this is due to this mysterious enzyme deficiency), and also keep a food journal.
1) First off, what's the deal with this "enzyme deficiency?" It sounds a little woo to me. And also, where the hell would such a deficiency come from? I'm 30. Could someone just become deficient like this? Could allergy shot treatments bring on such a deficiency? What are the treatments for such a deficiency? (When I asked the doctor these questions, I was told "We wont know more until we get the blood test back; the therapy for enzyme deficiency is enzyme replacement therapy." which was tautologically useless.)
2) Cross-reactive food allergy? This also sounds a bit woo to me. I've been wildly disappointed with the lack of specificity where potential food allergies are concerned. I got the whole "sensitive, not specific" nature of food allergy scratch testing. (The whole frigging panel lit up when I had the food scratch done.) I get the concept (that certain environmental allergies could be triggered by non-environmental things), but I'm at the maintenance dose for my environmental allergy treatment. Shouldn't that mean that this is less of a thing?
3) I suppose I should get the blood test done, but I'm concerned that we've created a problem and now we're in search of a solution for a problem that we didn't have to begin with. Is that ridiculous? And not knowing what kind of treatments I'm potentially facing, I'm less than thrilled with the prospects of moving forward with more seemingly-blind diagnostic tests. Do I need to do this? Do I need more/different information? Can I just nix the allergy treatments and go back to life before them where my seasonal allergies were gross but not publicly embarrassing like swollen lips?
4) And finally, a food journal? Really? I'm no man of science, but that strikes me as a wholly unhelpful method of actually figuring out what is going on. Am I not better off going on an elimination diet and slowly introducing foods back in to see if I react? A food journal just strikes me as yet another scattershot approach which may or may not yield useful data. If food journaling is the way to go, is there a way to do this that I'll actually follow through on and which will possibly yield helpful information?
tl;dr Lips/throat suddenly swelling up after a year of allergy treatments. What do I do next?