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Geothermic activity at Te Puia, Rotorua, New Zealand. It seemed apropos.
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.
First full year post-apocalypse. How have we done? Let’s chat.
MK’s Take:
I know that we haven’t been online for a year, but the original genesis for this blog was a discussion Denise and I had sometime between Thanksgiving and Christmas of 2011. I was really unhappy with the allergy diagnosis. I felt like I did not know what to eat, and even though I’d been through this when I stopped eating dairy, this seemed worse. I’d helped Denise some when she went dairy-free, and now she was able to help me some with this transition, as she figured out her allergies before I figured out mine. We decided to test a few recipe ideas on friends at a party in January 2012, and started working towards that deadline. Our first success was the recipe we’ll be sharing next week, so please stay tuned — we’re very proud.
I have a notebook from the early planning, listing all my allergens, all the things I needed to replace in my pantry, and the multi-page results of the afternoon discussion Denise and I had where we laid out everything we wanted to learn to make allergen-free. That list is now a spreadsheet we share, and eventually it sparked this blog. So far, I’ve found the testing and writing and sharing to be great motivators — not only to try recipes, but to innovate and plan and eat well. I love it. I thought that we could share some of our thoughts on the year and the lessons we’ve learned, as well as some of the products we now regularly rely on. Hopefully you’ll find this helpful, whether you’re new to the allergen-free lifestyle or just still exploring.
The first lesson, from me, is that there is an arc to coping with a diagnosis of food allergies, whether they be severe or moderate. From talking to others, this is true for other people who must modify their diets for health reasons (e.g. diabetics), with the notable exception that the “bargaining” stage is a little more dangerous (i.e. it could kill you). Anger, disbelief, trying to “game” the new rules, bouts of acceptance, bouts of despair, and an eventual understanding and acceptance of a new way of eating. This is, apparently, quite normal, but I wish I’d known in advance, so I didn’t feel I was failing so miserably with my attitude adjustment. It is HARD. It gets easier. It gets easier because you learn how to do it. You do stop having fits of rage reading packages in the grocery store, I promise.
As a reminder, my allergens are as follows: dairy, egg, soy, gluten, peanuts, hazelnuts, and pineapple.
From my list, entitled “MUST FIND,” here’s what I found:
Crackers: by far, my favorite are the Crunchmaster Sea Salt Multi-grain Crackers. These do contain flax, but no other major allergen — thanks to Angie for bringing these to a knit night! Not all of their varieties are safe for me, but this one is great. If you have multiple allergens, crackers are not easy — many GF varieties contain either eggs or dairy or both.
Pretzels: Snyders of Hanover Gluten-free Pretzel Sticks and Glutino pretzels contain soy lecithin, but no other allergens. I can handle the soy lecithin in small doses, so I only eat a few at a time.
Pasta: Schar pasta (I’ve only had the penne), Quinoa pasta (here, only had the macaroni), and Trader Joe’s corn pastas are all good. The corn pasta makes horrible leftovers, but it’s great when it’s freshly cooked. I was originally advised to try brown rice pastas, and I cannot say that I recommend any of them at all.
Bread: Hands down, the best gluten-free, dairy-free, egg-free, pineapple juice-free bread I’ve gotten in the past year is from Deland Bakery, and their millet potato bread is my go-to bread these days. Some of Schar’s baked products are completely allergen-free and pretty good (if they don’t come frozen, freeze everything you don’t use after you open the package; trust me). If you’re in New England, you might find some of Abigail’s Bakery’s Millet bread products — the loaf is good, but I didn’t love the other versions. For make-your-own breadcrumbs, I use Food For Life White Rice Bread as well as the tail end of anything I try and don’t really love for toast.
Miso: South River’s Chickpea Miso is both soy and gluten-free. It’s not as smooth or as strong as other miso products I’ve used in the past, but it definitely fills what would be a large hole in my pantry otherwise.
Margarine: this one was easy — the only good dairy-free margarine I’d found was Earth Balance. Earth Balance makes a soy-free version. This was the quickest fix on my list.
Mayo: Again, Earth Balance to the rescue with Mindful Mayo. See our review of it here.
Other things I am glad I have found now:
Chocolate: Enjoy Life chocolate chips (regular, mini, and baking chunks), Enjoy Life rice milk chocolate bars (crispy and plain — crispy are better), and a lot of Fair Trade certified dark chocolate bars are allergen free, if not specifically certified as such, so beware if cross-contamination is an issue for you. Enjoy Life makes chocolate chips — plus mini and large chunks — and so does Trader Joe’s (these contain soy lecithin — this seems to be okay for me, though I avoid it where I can). For nice chocolate, I’d also recommend checking out Taza. It’s probably not for the nut allergic, as they don’t appear to have separate lines for processing (I did not see an allergen statement on their website), but it’s stone-ground, handmade chocolate that’s dairy free and pretty incredible. Different than anything you’ve had before, I’d guess. My favorite is the cinnamon, closely followed by the guajillo.
Tuna: Many brands of tuna has soy or gluten in it. I know! Season Brand tuna (they don’t appear to have a website?) is good. Find it in the kosher section.
Frozen foods: Applegate Farms, turkey burgers (be careful not to overcook these, as they are then pretty bad, and they don’t work on the electric grill. But in a skillet, not cooked dry, these are a go-to easy meal for me) and gluten-free chicken nuggets (they’re chicken nuggets!), and Cascadian Farms spud puppies (aka tater tots).
Cereal: There is a gluten-free version of Rice Krispies (I know, they are rice, but the originals contain malt!), Barbara’s Cinnamon Puffins, and many versions of granola are gluten-free (but most contain nuts). Local to central New Hampshire, I’ve found Courser Farm Kitchen — gluten-free vegan granolas, which are fantastic.
The vast majority of what I eat is not packaged or processed or listed above, as I make almost everything from scratch. But having crackers, chips, and pasta on hand, as well as ice cream and a quick frozen dinner if I need one? All these serve to make me feel less deprived, a bit more normal, and less uptight about food, knowing I have something in the house to eat.
What else have I learned this year? Patience, perseverance, and the importance of the “buddy system” in any difficult endeavor. Don’t be afraid to “fail.” If you can eat it, it isn’t a complete failure, even if you dump the rest. Plan ahead — when you can’t grab food to go, you need to be prepared. Keep snacks at work, and if appropriate, in the car. When traveling, always have something you can eat with you and ID the closest grocery store.
For 2013, I’m looking forward to more breakfast discoveries (I hope), and continued recipe development, as well as playing with George (my new mixer) and coming up with some great vegan grilling options for next summer. I’m going to get a handle on this gluten-free baking thing, too. I’m planning to follow up Denise’s personal care posts with some posts on environmentally-friendly and allergen-friendly house cleaning.
Please share your favorite allergen-free products, links, or with us in the comments! Happy 2013, everyone!
Denise’s Take
Having had the benefit of reading Mary Kate’s take before having to write mine, and reflecting back on this journey, I think the most important part truly has been the “buddy system”. When the dairy allergy became severe enough that I was forced to give it up, I was lucky enough to have Mary Kate in my knitting group having been through the dairy free learning process before. She, in turn, was able to point me to resources and information and websites (such as GoDairyFree.org) where I could find additional information and issues. I had to learn all these new things and get advice from Mary Kate about products she liked and didn’t like, and I finally got in a place where I thought I knew what I was doing. And then I started having reactions again. In March of 2011, I tested positive for the next round of allergens, which meant I had to give up a bunch of the products I had found and liked and baking became much harder, and eating out became harder, and it was unpleasant. But since I had been through it so recently, I didn’t have to go through as much of the emotional adjustment process, other than some minor temper tantrums at the grocery store. It seemed to be just more on the same continuum. But I wasn’t really finding the solutions I wanted to some of the problems, because it was just food, and I didn’t really want make time to do it. I had a lot of other things to do, because I tend to be this somewhat Type A crazy person with a million things going on at any given time. I should just be able to eat whatever without any work right? (Talk about denial.) So I kept eating some of the solutions I had found, but I felt restricted, restrained and bored.
When Mary Kate received her second diagnosis of problem ingredients, I knew her frustration with having to start all over again. Since I hadn’t solved a lot of the foods that I still wanted to be able to eat, we had three allergies in common (dairy, egg and hazelnut), and we hadn’t been able to find a lot of books or information on food we wanted to eat (most of the books out there seemed geared toward kiddos), it made sense that we team up. As Mary Kate stated above, doing a cookbook seemed like a natural place to start, since we were both in a writing group together as well. But we both kind of need deadlines, so the blog was born as a way to actually make us do what we had planned to do.
I had specific things on our wish lists that I needed to find decent solutions for as well. (As a reminder, my allergens are as follows: dairy, egg, almonds, coconut, hazelnuts, crab, clam, scallops, and flax seed.)
A decent egg replacement for box mixes: Again, I can be lazy about food. Since I can have wheat, and since Duncan Hines makes a variety of cake and brownie mixes that don’t have egg or milk, I wanted to find a egg replacement that worked and that I liked. I tried Ener-G, applesauce, blueberry apple sauce, tofu, and flax seed (before I figured out that I was allergic to it based on the resulting reaction), without finding any of them acceptable. But then I found chia seed. (Cue heavenly choir). It works for Duncan Hines brownie mix, and is best in the 8 x 8 inch pan. I haven’t tried it in cake mixes yet, but I’ll let you know how it goes.
Mayo: Earth Balance Mindful Mayo, I concur with Mary Kate that it was a godsend. See the link for our review above. Also, try mixing in some Sriracha. Yum.
Chocolate: I agree with Mary Kate’s take above. However, if you don’t have a soy issue, I can often use Ghiradelli’s Semi-Sweet chips. I have to watch the ingredients because sometimes they use coconut instead of soy lecithin, and I can’t have coconut. It’s a lesson to continue to watch labels even after you think a product is safe. They change formulations all the time based on the prices of ingredients.
Coffee Creamer – For me, I don’t have a lot of options. I don’t like soy milk or creamer (I’ll drink diet pepsi at 6:00 A.M. for the caffeine rather than touch soy, and I generally won’t use it baked goods either, I can still taste it), and most of the other options contain either almond, hazelnut, or coconut, all on my no-no list. I found a recipe for homemade cashew milk that does the trick for me nicely, so I make up a batch, freeze it in ice cube trays and just thaw what I need in the microwave when I need it.
There were quite a few items that were in my old “normal” diet that I still wanted, that we were able to come up with versions that I’m pretty happy about. Most have been posted to the blog and some are still coming up on the schedule. (We have an editorial schedule, and blog meetings, I kid you not.) The ones we’ve posted that were “must finds for me” are:
The other interesting journey for me this year is limiting the cleaning and personal care products I use with coconut derivatives in them. Although it aggravates me that I have to spend some time making these products, honestly, it’s so much cheaper than buying commercial laundry detergent, shampoo, and lotions. And it really doesn’t take that much time. You can check out what we’ve posted so far here. A recipe for laundry detergent and other cleaning products will be posted in the coming weeks/months.
Looking ahead there’s still a lot on my list of things I want to be able to eat again. There are things that I’ve been working on, but they aren’t ready for prime time yet, and things that when I looked at our infamous spreadsheet to write this post, I had forgotten about and really need to get working on. Things I hope to solve in the next year include some Indian curries and kormas, a recipe for ice cream that’s dairy, soy and coconut free (I don’t like the Rice Dream and I can sort of tolerate soy ice cream, but want better), Alfredo sauce, Vodka sauce, mac & cheese, and pizza cheese (I can’t have Daiya because of the coconut oil, although it was the best cheese replacement I’d tried before finding out about the coconut allergy).
Besides Mary Kate’s thoughts on patience, perseverance, the buddy system and not being afraid to fail, I’d like to add another thing I’ve learned this year. Just because they have a commercial product on the market, doesn’t mean you can’t make your own very easily and much more cheaply, and it doesn’t mean that the commercial product works better or tastes better. Experiment, experiment, and don’t settle if you don’t like something. Keep trying. I’ve also learned how many of us there are out there, dealing with the same issues, and trying to share our knowledge. I hope we’re making a contribution and in the words of Red Green, “Remember, I’m pulling for ya. We’re all in this together!” And since we are all in this together, feel free to share your favorite allergen-free products, links, or recipes with us 🙂
Have a happy and productive 2013 everyone!
Final bonus link — need an allergen-free, good fortune soup for the New Year? Veggie Venture has you covered, and as a bonus, it’s vegan.
Now that Denise and I have established what we think is a nice rhythm, and we have a few readers (HI READERS! WE ARE SO HAPPY YOU ARE HERE. PLEASE KEEP COMING BACK!), we’d like to introduce a new feature, our catch-all for things we want to talk about or share but that aren’t recipes or links.
Welcome to Whatever Wednesdays! Anything goes here, so when we have a product review, cookbook commentary, personal essay, tips, tricks, or anything else to share, we’ll throw a post up on Wednesdays. This feature will happen when we have things, not every Wednesday, so consider subscribing so you don’t miss a post. We don’t want you to miss a post.
First up, as we gear up for the holidays, we thought we’d put together some thoughts and tips and tricks for traveling with allergies.
Denise’s Tips and General Opinions:
Having a food allergy is a pain. And some of your family and friends won’t understand. They think that you’re making it up, that you can just have a little. They get angry, they get passive aggressive, they want what they’ve always had and don’t want your new weird health issues interfering with their food. Well, some of us with food allergies risk dying if it’s even in the air around us, or if we have just have a little. And for some of us, while we won’t die, we’ll suffer huge amounts of intestinal and stomach pain, we’ll vomit or have diarrhea, our faces and parts of our body may swell up, we may get rashes and we may feel like we have the flu for days after. I don’t know what your particular food allergy is and what your reaction is, but we all have a responsibility to a) not eat something that’s going to make us sick, regardless of what anyone else has to say about it; b) make sure that we understand what is in all food that’s being offered to us (i.e. some people don’t understand that milk means butter, cheese and sour cream too); and c) to provide for ourselves to make sure we’re never put in that situation.
For holiday dinners, if you have anaphylaxis reactions where you could die if you are around a particular food, and your family refuses to catch a clue, then you no longer have holiday dinners with the family members who can’t be trusted. It’s that freaking simple as far as I’m concerned. I absolve you of all guilt and give you permission to cut them off. If someone doesn’t care that you might die, just so they can have what they’re used to having, they aren’t family. Family takes care of one another, and you are within your rights to ask that yours do this.
If your allergy is such that you can be around a food, but you can’t eat it, make sure you know how things are prepared. If you don’t know, DON’T EAT IT. One example in my life is turkey. My family bastes their turkey with a concoction made with margarine/butter (milk), bouillon (often containing milk), celery, onions and giblets. So that means I can’t eat their turkey. Most people wouldn’t expect that turkey would have milk in it. I’m going to be blunt here, but unless you have anaphylaxis, it is not your family’s problem to accommodate you. There’s no way I’m going to get my 96 year old grandmother to change her ways at this point, and she shouldn’t have to do so. So I bring my own turkey that I’ve made cooked safely. I’m not saying cook yourself a whole turkey, I’m just saying get some turkey, a piece of breast or a leg quarter and cook it yourself. I might even bring a potato I can nuke and a salad, and I bring my own dessert. Especially if it’s potluck. Because otherwise, you might only be able to eat the thing you brought. And don’t let anyone make you feel bad about it. Another strategy that I sometimes use for going to friends or families’ houses where I’m not sure what will be served is to just eat something before I go, so that if there’s nothing I can eat there, it won’t matter. It’s a hard lesson to learn, but after being at a few dinners where I couldn’t eat a single thing there, you start to catch a clue.
When traveling out of your local area on a car trip, pack accordingly. If I’m staying at a hotel, I buy things that I can eat without cooking for breakfast. Breakfast is really hard for me to eat out these days, since I’m allergic to milk and eggs. I buy fruit that I can eat without peeling, apples, pears or nectarines, and allergy-free-for-me non-perishable snacks I can eat if I can’t find anything else to eat. It’s also a good idea to research before you go. For me, I know that Chinese and Japanese restaurants are the easiest places for me to eat now. I don’t have an issue with soy, and they don’t use as much milk, cheese, or egg as other restaurants. So I go to Yelp.com and do a search for those restaurants within so many miles of my destination. When I find one that looks good, I then go to their website if they have one and check out the menu. If it looks like there may be things I can have on the menu, I then go to Allergyeats.com to see if others with food allergies have rated it. There are other websites and apps you can use also, just do a search. You can call ahead to see if a restaurant will be accommodating, but honestly, most of the time I just go. You do have to be prepared to be very assertive and ask questions about what you’re ordering. Be nice, but ask. If you are not comfortable that the waitstaff knows what they are talking about, be prepared to pick something safer on the menu.
When you are doing more extensive travel, again prepare. If you’re taking a cruise, flying or going to an all-inclusive resort, notify them ahead of time so they can make accommodations. If you’re traveling to a foreign country, check out these food allergy chef translation cards you might want to use. Also be prepared to educate those serving you. I took a cruise where they tried very hard, but didn’t really get it, and tried to pick off feta from a salad and tried to serve me sherbet, when I have a milk allergy. The waiter didn’t understand that sherbet has milk in it. Breakfast on the cruise was a challenge because I didn’t want to be served but went to the buffet. I ate so much melon on the cruise that I didn’t want to look at a melon again for six months after I got home. I probably should have sucked it up and gone to the formal dining breakfast where I could find out what was in stuff.
Mary Kate’s Tips:
First caveat: I do not have anaphylactic food allergies at this time, with the possible exception (which I’ve not tested, of hazelnut). Even so, my allergies can ruin an entire weekend, trip, or week, so generally, if I don’t know what is in it, I do not eat it.
Personally, beyond just food, I have about a gazillion environmental allergies, including dust and pets. (I know. I should live in a bubble, but that’s just cumbersome). Beyond taking my medications, there are a few things I can do while traveling to help me out. I bring along my own pillow, if driving, encased in its own dust mite covering. If I’m flying, I can take the dust mite pillow cover with me. Sometimes I also bring along an allergen neutralizer — I use Allersearch ADS Anti-Allergen spray, which neutralizes pet dander and dust mites in fabric surfaces. Depending on the severity of your allergies, you might consider a traveling air purifier, too.
For most of my environmental allergy needs, I use National Allergy to find products. My allergist recommended them, and I’ve found their customer service to be great.
For breakfasts when staying in hotels, I know there is nothing on a continental breakfast bar that I can eat anymore. I try to make sure there is a coffee maker in the room, and I make instant oatmeal, mixed with a travel cup of applesauce and a packet of sugar. If you can’t tolerate oats, consider cream of rice or instant grits.
If you can eat nuts, most of which I can eat, Larabars are a great travel food. They’re compact, protein-dense, and keep reasonably well at the bottom of your purse or backpack. They do not, however, taste good a year beyond their expiration date, so clean out your bags occasionally. I also take dried fruit, plain nuts, or other snack-sized things when I can find them.
For road trips? Bake ahead. Bring brownies or cookies with you, especially if you can make a breakfast-like cookie. Roasted vegetables travel well and are somewhat neat to eat on the go.
I used to be primarily a baker, and for years I’ve been making baked goods for other people’s birthdays — at first just because I enjoyed it, and later that, plus a selfish desire to be able to eat the baked goods. But for potlucks, I never bake anymore, as I want more than dessert — always bring a main dish or a side dish that can be your main dish (check our small plates category — it’s our biggest so far — for stuff Denise and I both like).
Most of all, try to find ways of enjoying holidays and spending time with people that do not revolve around food, as eating is the one area you’re most likely to feel odd or left out. Game nights are kind of awesome, and I really love playing cards with my neighbors. Movie night is also good. Or invite everyone you know over and cook safe tasty foods for them — we’re working on giving you all the recipes you might ever need for entertaining.
