On Monday, April 29, 2013, I had some more scratch test allergy testing done because I was having symptoms similar to those I had before I realized that the milk allergy was bad and couldn’t be ignored any more (see my Denise page, which will have to be updated at some point for reasons that will become apparent), and again a year or so later, just before I tested positive for coconut, almond, egg, clams, and crab. So after hemming and hawing and hoping it would freaking go away for a few months (please don’t do what I did, I’m an idiot), I dragged myself into my allergist’s office for more testing.
I got a 2+ for lobster and 1+’s for wheat, corn, potato, chicken, celery and onion. For the 1+ results, the allergist says this result means I have approximately at 25% chance of having a true allergy for these reactions. I’ve been told to do a food avoidance for these and then do a challenge for each ingredient to determine which ones actually cause symptoms. So, here’s the thing. I know it’s at least one of them, and one of my 1+ results from the last round of testing, egg, causes me huge distress when eaten, totally belying its puny 1+ reaction. Here’s the other fricking thing. This brings me to a total of SIXTEEN foods and food derivatives that I have to avoid to do this challenge. Now just for fun, since corn is not a top 8 allergen and doesn’t have to be declared or labeled separately, go look at this list of possible corn derived ingredients. Then go look at this list of foods and products that you may not recognize as containing corn. I thought wheat was bad before I started looking at this stuff, but seriously, I think corn is the worst. And I’ll totally lose being able to eat most Asian food out at restaurants, which will be really, really annoying. And why can’t the FDA get it through its head that people would be best served by having all this stuff labeled?? But actually, I know why and it involves the moment of little pieces of green paper, to borrow a phrase from Douglas Adams.
I haven’t started the elimination process yet, because I’m thinking that while I’m at it, I should just freaking get tested for celiac as well and get it over with, thanks to Mary Kate’s sharing of Celiac Disease Symptoms from the Gluten Dude, and since I still I need to be eating wheat in order for the test to work. In addition, there’s a crapload of stuff I have to sort through and figure out and learn. But at this point, it’s looking like a lot of plain beef or pork, plain vegetables, and rice in my future for the avoidance part of the challenges. Please send good thoughts for the challenges that I was just having a bad day and my skin was pissed off at me and it just decided to fake me out, because it was in a mood. And if some of these results are in fact true allergies, join me in crossing my fingers, eyes and toes, that one of them isn’t f-ing corn. I’ll seriously take all of the rest of them as true allergies as long as corn isn’t one of them (knocking on wood so the universe doesn’t b*tch slap me with corn, just for hoping that it isn’t).
I drafted the above paragraphs the day after I received the results, and I’ve been letting them sit so I could go back and write it to show both the reaction to the testing, and the later consideration after I’ve had time to think about what it means. Which would be good if I were at that point, but the thing is, I’m still reacting and in denial. I haven’t started the elimination process because my doctor appointment with a new primary care practice (don’t get me started on that whole thing) isn’t until later today, where I’ll start the process for getting testing for celiac. I don’t think that this will become real until after I try to eliminate everything and see what is actually is causing the problems and what isn’t, although the possibilities are causing huge anxiety. Also, if it’s corn, and I have a reaction to Earth Balance and have to make my own margarine, I’m probably going to have a huge temper tantrum. I’ll try to contain it and not expose the blog reading public to it, and try remember that at least I still have the option to make my own and be positive, but I may be cranky for a bit. Being optimistic and positive is not one of my normal states of being (and anyone who knows me in real life is probably busting a gut laughing right about now at the understatement). I’m also trying not to get ticked off in advance by stuff I might never be able to buy or use again until I know that I have a reaction, but I’m anxious about it. And at the same time, I’m afraid that even if all or some of this round of positives are allergies, that this isn’t the end. From the original diagnosis of three food allergies in 2000 to the testing in 2011, I added six additional food allergies. Now in a two year span, I’ve added another seven potential food allergies with this round of tests. My pointed little logical brain can’t help but say, “so does this mean that I’m just going to keep adding more food allergies over the course of my life? I’m 41. What will be left for me to eat?”
I’ve been through this before, so I know I’m just going through the normal stages of this process, and I know I’ll get to the other stages eventually. Like being at the place where knowing is better because I can control it and I will feel better and be happier once I have a handle on what the problem is. But I’m just not there yet, I’m still angry and anxious, which causes me to be more angry because I seriously don’t like being anxious. Before I got the results, I thought I was ready, and that it wouldn’t be this hard this time around because I’ve been through this twice before and you’d think I’d be used to it. Oops, guess not. I thought about waiting to share this post until I had moved farther along the continuum, but maybe it’ll help others with first time food allergies realize that this is part of the process and it’s okay.
Anyway, that’s the beginning of the new battle, just as I thought I was getting the handle of things with the other nine. Any helpful references or pages you guys have for any of the new list, would be most appreciated. I’ll be posting some updates as I do the elimination and challenges.
Be careful out there.
Ugh, sorry to hear it, that really sucks. There was a while where basically all I could eat was pasta, drastically overcooked vegetables, and chicken with nothing on it. The only exciting part of the meal was when the peas fit inside the shell pasta. It was super bleak/I’d find myself in the kitchen an hour after dinner just staring blankly into the fridge. Eventually, though, as you have before, you’ll find things that work… I hope the internet helps that happen fast!
Thanks Corinne! I still haven’t started yet, but I did do the blood draw for the celiac test today, so hopefully I’ll get results soon.
I just came across your blog today via Ravelry. So, I don’t know all the back story and what all you’ve tried…but immediately I’m wondering if you’ve seen a naturopath/holistic doctor and discussed leaky gut or anything along those lines? The good news is that if it is leaky gut related then it might be something you can heal and then go back to enjoying foods on this list. Gluten (in large enough quantities) will cause leaky gut in anyone.
I have total empathy…we’ve been dealing with a load of avoidances between my husband and two children. And finding meals that everyone can eat (and doesn’t hate) has been a real challenge. One of the things I did was contact my local Whole Foods and ask them for suggestions. They have someone on staff with a title like “Healthy Eating Specialist” or something silly. And basically they emailed some suggestions to me for convenience products (Go Raw, No Nut Bars, gluten free oatmeal, Chebe bread mixes, Enger-g egg replacement) as well as recipe/ingredient names to look up – tofu scramble, quinoa, millet. It really is a case of not knowing what to even look for. But, once you know how to navigate the info there really is a lot available. Good luck!