Category: Allergy-Friendly Fridays

One of the surprising things about having food allergies is the fear of getting sick and whether the process of getting well will make you sicker. It’s much more complicated than you might imagine.

In January, I managed to get either bronchitis or pneumonia, which affected my asthma to the point that my nurse practitioner considered admitting me to the hospital because they couldn’t get a peak (air) flow at first. I did a nebulizer treatment in the office and then talked them out of admitting me. Why did I talk them out of admitting me? Well, yeah I hate the hospital, who doesn’t? But my first reaction, was “what would I eat? There’s no way they could serve me corn-free food, let alone deal with the other 12 allergies.” My second reaction was “I’ll get a rash from the sheets; there’s coconut in their detergent.” And although I’ve saved the Corn Allergy Girl’s Emergency Room Safety Doc to my phone, I was there by myself and wasn’t sure I had the air to self-advocate for what I would need at the hospital.

I didn’t have the money to pay for compounded medication, as our insurance doesn’t cover it and I didn’t know how long it would take to get it compounded. I ended up choosing the lesser of two evils and taking three regular medications, all of which had corn. Although it did help me breathe and get over the bronchitis or pneumonia, it also caused me to have a corn reaction the entire time I was on the medication. So I swelled up like I had gained 20 pounds, broke out in cystic acne, broke out in blisters on my foot so that the bottom of my foot had open wounds in a 2 inch square area, had terrible brain fog, and had insomnia during the whole time. And it took me weeks to get clear of the corn reaction, once my lungs had cleared and I could breathe again, and for my foot to heal. 

This raises the question of what will happen when I really have to be admitted to the hospital. I’ve known that I really need to have a plan in place, but I still haven’t gotten myself together. I would need safely-laundered sheets, pillow cases, and bed clothes; safe toiletries; a list of the foods and derivatives to which I’m allergic; and actual safe food and drink. I keep putting it off, but one of these days I’m going to need it and then I’m going to be sorry that I didn’t get around to doing it. 

One of the things I find most disturbing about seeking medical care is that the medical profession just doesn’t seem to know what’s in the stuff they prescribe. I love my nurse practitioner, but when I needed an antibiotic, she asked me which one was corn-free. I had some testing done at the time of my annual physical and I turned out to be low in Vitamin D and magnesium. The nurse called to tell me the results and to tell me to get a supplement. I laughed and said I wouldn’t be able to find one that was corn and coconut-free. The nurse, in an attempt to be helpful, called back later and left a message with several suggestions. Then I had to call her back and tell her that half of the ingredients in the ones she had suggested were corn and coconut derived. 

I went to the optometrist in December. She said my eyes looked irritated and I needed drops. I said that I was allergic to milk, corn and coconut (these are the most prevalent of my allergens in medications). She handed me three sets of drops so I could look at the ingredients. None them were safe. I tried to seek alternative care through a naturopath, and she wanted me to go on supplements, and I again laughed. And sure enough, all of the ones she wanted me to take had corn and/or coconut derivatives. I got such a bad vibe from her lack of knowledge and insistence that it was a good company making the supplements that I never went back.

Before I was diagnosed with the corn allergy, I was having a lot of trouble with brain fog to the point that I was literally concerned that I was getting a brain tumor or that I had early dementia. I was forgetting the names of people I saw every day and the names for every day objects, or saying the incorrect word for an object. Some days it happened 25-30 times by noon. I went to a neurologist, an audiologist and did a sleep study. Then, being severely unhappy with the neurologist who didn’t listen to me, went to another one, and got sent to have a dementia evaluation. During this time I was told that it was sleep debt from my insomnia and mild sleep apnea. I was prescribed 3-4 different insomnia medications, none of which had the slightest effect. So I decided to discontinue treatment. Guess what? When I went off the corn, the brain fog went away, one of my two types of my insomnia went away, and I’m willing to bet if I ever went through the excruciating process of a sleep study ever again (unlikely in the extreme) that my sleep apnea will have diminished as well. I’ve dropped about 20 pounds or so, and gone down three sizes, without trying to since going off the corn, wheat and chicken after the last round of testing. Since then, every time I’ve been exposed to corn accidentally, I get insomnia that night, and for the next couple of days I lose my words. Sounds like a causal relationship to me. 

The problem with all this, and which will be discussed in greater depth in a future post, is that I cannot depend on my medical professionals to know whether medical issues I’m having are related or not related to food allergies. If they are not related, I cannot depend on them to know how to treat the problem given my food allergies, what’s available under my insurance plan, and what pharmaceutical companies actually make. And with the amount of self-advocating and figuring it out myself I do now, what happens when I really get dementia or can’t communicate, and have to go to the nursing home?  Skydiving, cliff diving or eating fugu in my old age sounds better all the time.

Now, my allergies aren’t quite as severe as Denise’s, and I’m not allergic to corn or coconut, which are in everything. In some respects, this is great, because I also have ongoing idiopathic (the technical term for “we have no idea why”) vitamin and mineral absorption issues, and the supplements I take are part of what keep me functioning. All the ones Denise and I have looked at together contain corn. ALL of them.

This past winter, one of my doctors did a full vitamin and mineral evaluation, and we discovered some really random deficiencies. It took three tries before we found a B-complex I could take — the first one that she recommended had an ingredient I was allergic to in it — and she’s the one who did that round of testing. I took the second one and got a cold. Or, at least, that’s what it felt like — one of those colds where, you feel fine, and then, sort of suddenly, your head is stuffed, your nose is running, your eyes are glassy and teary. That was a Thursday afternoon, and I called in sick the next day. Weirdly, though, around 5 pm, I started to feel fine. I guess there are 24-hour stomach viruses, so why not a 30-hour cold? Felt fine all weekend: I’d left the supplement on my desk. When I remembered taking it again, it was Tuesday. Same pattern, exactly, except this time I had to leave a meeting because my head was filling with snot. 30 hours later? Fine. To me, it was absolutely an easy call — allergy reaction — and one I had to convince my doctor of. We tried a third B supplement, and this one is fine, but you can bet I read the label about 200 times before taking it.

Our insurance company switched prescription providers this year, and of the three medicines I take, all of which are available in generic forms, this new company provides different generics, and at least one of the three contains milk or a milk-derivative, which is causing minor issues. Again, for clarity’s sake — I do not (probably) have a milk allergy, just severe lactose intolerance. I’ve been taking this drug for three months anyway, because being off of it causes more issues than being on it with milk, and I couldn’t get in to see my doctor until April anyway, to see if there is a way to ask for a generic without milk without getting a DAW (dispense as written) prescription for the non-generic drug which could cost me 70 times more. Yeah, that’s not a typo — it’s the difference between paying $1 and $70.

Milk and wheat are the basis for a lot of fillers used in pharmaceuticals, and there is no requirement that these be clearly labeled, anywhere, nor that pharmacists, prescribing doctors, or nurses have any knowledge of the allergens that may be present in the drugs they prescribe. So even if you think you are safe because your doctor is aware of your allergies, you are not. You need to ask the doctor to check potential allergens (if your doctor won’t or can’t or doesn’t know how, that’s really not great). Then ask the pharmacist again. And go online and check. If you’re on a name-brand drug, checking isn’t too bad; with generics, it can be kind of awful, and worse if the generics can be switched up any time the pharmacy company chooses.

Frankly the vigilance is tiring, and it’s tempting to castigate yourself for every slip. I try to remember how unhelpful that is, but stock it up as a reminder that no one else will advocate for my health the way that I do, partly because no one else has to deal with it when I get sick.

How were your food allergies diagnosed?

Denise and I have both posted our diagnosis stories in our blog bios. The medical tests recommended for each of us were different — her allergist recommended skin scratch tests, and my doctor had referred me to a naturopathic doctor because she couldn’t help, and my naturopath was the one who brought up food allergies. She recommended blood testing.

There is no standard testing protocol that everyone agrees on, it seems, but FARE identifies four paths of testing. After the medical tests, we both did elimination diets followed by food challenge testing. Our elimination diets varied in length — Denise’s lasted three months or so, mine was more than 6 months. The food challenges were … well, they were time-consuming and depressing, as most of the time, those foods identified as “potential” allergens made each of us sick. Yipee, real allergy identified. [sarcasm]

Treatment: Avoid trigger food. Forever. This diagnosis is secured, right?

(If you’re lucky enough not to know, a food challenge usually involves waiting until you feel well, and then eating several servings of a food that has been identified as likely to make you sick. And then wait three days, and record all symptoms. If you get really sick, never do that again. If you feel just kind of unwell, maybe try it again, or try different iterations of the food — eggs, egg whites, mayonnaise, for example — and see what happens. Depending on the severity of the expected reaction, you may need to do this under medical supervision. Please don’t read any of this as recommended medical procedure, though.)

This post on Gluten Dude really resonated with me, as I’m in a similar boat. I wasn’t tested for celiac until after I’d been told to cut gluten from my diet (it popped as an allergen on my blood test). So after cutting gluten (and a bunch of other things), I was told to go back on gluten and get the blood test, but it came back negative — did it come back negative because of the on and off, or because I don’t have celiac? The GI, years later, said he found no evidence — not really listening to the fact that I’d been gluten-free for a year and a half at that point. Genetic testing is complicated, as insurance won’t cover it for me easily because I “have no family history of celiac,” but I don’t have a full family medical history — I’m adopted. One of those catch-22 situations. 

My final decision is to never again eat gluten, as the last time I was accidentally exposed it knocked me down for two days. I’m okay with that decision, overall, as I’d rather be healthy than eat bread. But unlike “plain” food allergies, it would be nice to know if I have an autoimmune disease, instead of saying “severe intolerance to gluten with some of the hallmarks of celiac.”

I think that teasing out what you’re allergic or even sensitive to can be next to impossible, whether you’re talking about food allergies or environmental allergies. When do you eat just one food in a day? Or in a meal? Or when are you in a room with only one thing that you could be allergic to — dander, dust mites, pollen? How do you narrow it all down? How often do people even consider that allergies might be the cause of their health issues? My doctors didn’t for years.

See, I think diagnosis might be key in starting this journey, but it’s not the end of it. Knowing exactly why something makes you sick is sometimes helpful, but not as helpful as avoiding the food or trigger. The problem seems to be that the list of allergies can grow, change, expand, and so does the world. We can hope that medicine will catch up, too, but I’m not personally holding my breath.

What it seems to boil down to is using the tools your doctor or medical team can offer, and then doing a boatload (frankly, an ark-load) of research on your own. Read up. Use the magic of the internet. Get really good at trying to tease out the good sources from the questionable sources that may have some good information from the crackpot theories that somewhere in them have a product to sell to fix you. Ask lots of questions. Find other people online going through weird stuff and read what they’ve found out. Use the doctors again, if you can. And most of all, pay attention to yourself, and get to know what’s going on, both when you feel sick and when you feel well. It’s a lot of work, but generally no one else is going to do it for you.

One of the things I find so aggravating about diagnosis is that my ball appears to keep moving. And that I had a lot of problems for a lot of years that maybe wouldn’t have been problems if my food allergies had been properly diagnosed. Mark Kate is correct in that I have had scratch testing, and you can read about it at the link above. But I’ve also have two allergies that I just had big enough reactions to the food that I don’t need to be tested, I know I’m allergic. And in the last two weeks, I just hit another food that might be a problem. I had a reaction, hives and facial swelling, which faded when I took Benedryl, and I had a milder reaction to another form of the food a week later when I ate it by accident because I wasn’t paying attention (again, I’m an idiot, don’t follow my example). I’d like to do another formal food challenge, but I need to be clear of things and get my body back to normal, before I’m willing to confirm that it’s food allergy #14. 

At this point, I find allergy testing technology to be so unreliable, that it’s hard to deal. In the last round of scratch testing, I tested positive for seven new allergies, I got a 2+ for lobster and 1+’s for wheat, corn, potato, chicken, celery and onion. For the 1+ results, the allergist said this result meant I had approximately at 25% chance of having a true allergy for these reactions. Only three of the positive results were confirmed by subsequent food challenges, although one of the ones I’m calling a pass at the moment might be iffy. (I noticed some minute things, but it’s lobster, and I could have been otherwise exposed the last time I challenged it, so I’m calling it a pass. It’s lobster.) Of the three that were challenge confirmed, corn, wheat, and chicken, all of which were a 1+’s, the corn is fourth for severity of reaction out of all 13-14 food allergies. Crab which is my worst reaction in severity, is a 2+. I can eat picked blue Atlantic crab with no apparent reaction, but if I eat soft shell crab my throat closes and I throw up. Sunflower is my second worst reaction. I’ve had no medical testing to verify it, but the reaction was so bad, I won’t do a food challenge to confirm it. I don’t want to have to use my epi pen. Dairy which is my third worst reaction in severity is a 3+. Does any of this make sense? Nope. 

At the beginning, diagnosis seems like a life line, because you have some hope that things will get better and you’ll feel better once you know what to avoid. But there are false positives, and there are false negatives, and to verify you have to do food challenges. And there are people out there who don’t test positive to the serums at the allergist’s office, but have a documented reaction to the actual food. But for me, as time has progressed, I’ve realized that I have to pay attention to what’s going on with my body and watch what I’m eating, because testing isn’t as reliable as my observations and my actual reactions. 

“You are what you eat.”

Right. So what are you when you can’t eat half the foods that you used to love? Or any of the family recipes you grew up with? Or your favorite dish of your best friends, or the perfect brownie recipe you spent two years perfecting?

What are you? Lost and frustrated. And others — your friends and family — are lost with you.

Our food culture today is a bizarre landscape that includes mega-star cooks, entire networks dedicated watching people cook food you will never make, “food deserts,” corporate organics, farmers’ markets, some shady corporate political maneuvering, and an entire populace generally both obsessed with and confused by food.

This article has nothing to do with food allergies; it’s about making small changes to your diet to eliminate “non-real” food additives. I think this is the kind of article that expresses our collective cultural confusion about food. A diagnosis of food allergy or intolerance means you start reading all labels and learning things you maybe wish you did not need to know about how our food is produced. While I’m all in favor of people figuring out what makes them healthy or well, the seemingly random declaration of some foods as “real” and morally superior or “good” and others “fake” and “bad” doesn’t seem to serve a greater purpose, but it does start to explain the comments that those of us who “insist” upon bringing our own food to social events hear so often —

• “Oh, you’re so good to eat that way!”
• “You’re so healthy!”
• “That must be how you stay so skinny!” or “You must be losing so much weight on that diet.”
• “I’m so bad for eating this cookie!”

As we talked about last week, it’s a different health-based reason than most people think, but allergies often seem to get lumped with diet choices and food fads, undermining their seriousness and the toll they can take on your life. A food allergy diet is not a choice. It’s not a moral statement. It’s food that doesn’t kill you.

I read a maybe more pertinent essay last year that really got into food and what it means to us, individually and as a culture. This open letter to Paula Deen from culinary historian Michael W. Twitty is really worth reading, as I’ve been thinking about it since last summer. Part of what Twitty was saying is that the conversation around food has been somewhat divorced from both its history and meaning. At its base, food is energy. We consume so that we continue; it is fuel for our bodies. But food is a much larger social construct. Food is identity, it is connection, it is love. What we eat defines us, not in the childhood mantra of “you are what you eat,” but in our connections to the world.

Culinary traditions bind families and communities together, even through migrations as Twitty describes in the large mid-20th century movement of African-American communities from the rural south to the urban north. Think about your family’s traditions. Was there a special food for birthdays, or celebrations? A Sunday meal? A holiday treat? I think I could tell the story of my life through foods, from Cookie Monster birthday cakes, that one cookie recipe my grandmother made, through my mother’s stir-fry phase, through the successes and failures in the harvest gold kitchen of my first apartment, and through that absolutely magical brownie recipe.

This is one of the very reasons that adult-onset food allergies are so difficult. When the foods that define your family and traditions are now forbidden to you — when going to a family gathering means enduring the many queries about why you are no longer participating in the sharing of history-laden sustenance, or why you brought your own food, or explaining again that, no, you cannot “just have a bite” of that — you have to work around to finding that identity again. All of the old comforts are gone, and seeking the new, while potentially exciting, is rarely comforting.

When my forbidden foods list extended just to dairy, I found that food traditions other than Midwestern American — or anything North American — were easier and therefore worth exploring. Dairy is rarely used in traditional (even “Americanized traditional”) Asian cuisines. Chinese was safe, sushi was awesome, and even Indian was navigable. Vegan cookbooks taught me to bake without dairy and without eggs, as well as how to focus on vegetables and really use the depths of my spice cabinet.

As the list of forbidden foods has expanded, the ease of eating out has decreased. I didn’t realize for the first year or so how much I had let fear of getting sick circumscribe my life. Giving up control of my plate meant the potential for getting sick — not likely anaphylaxis (or not so far), but every time I get sick I have to re-face and re-conquer the fear of eating out after I’ve gotten back to being well. I was turning down social opportunities, packing my own food, afraid of the consequences. And I was missing out, not necessarily on opportunities to get sick, but on opportunities to socialize, make and build connections, and to learn how to be a good advocate for myself in restaurants. Not that the latter always works, but it is a skill that you need to learn and practice.

The other skill is learning to balance — my need to find and take advantage of safe social situations, my ability to create food-free or not food-centered social opportunities, and my own health. The trials of learning this balance are now part of who I am, as are my food allergies, and this outlet Denise and I created online. One of the reasons we started this blog was that we both needed a positive outlet for the frustration of needing to recreate the entirety of our foodscapes. The blog — well, our editorial calendar, which changes, but gives us structure — helps keep us focused on working out recipes for foods we want to eat again. Sharing them out via the internet, and the feedback we get from our readers encourages us to keep working on new things rather than getting stuck in our own ruts.

Beyond the food, the many conversations we have about our own frustrations and triumphs and failures has lead to this series of essays as we’re starting to feel more like the food allergy online world is a community that we want to participate in beyond our recipes. We’re glad you’re here, and thanks for reading.

We’ve touched on this topic in a peripheral way in our posts on Relationships and Food Free Entertainment, but we wanted to give this topic its own post because of the prevalence of food with socializing in our society, and the complications that can cause if you have food allergies.

When you develop a food allergy in adulthood, and then have to re-learn how to eat and how to cook, you suddenly realize how much of your social life revolves around food. Looking back at the last six months or so, and at the events I have coming up, most had/or have something to do with food:

• Family wedding
• Meeting my mother’s new friends at a restaurant
• Work holiday party at a Chinese restaurant
• Family holiday celebration
• Going out to eat for birthday dinners
• Gatherings at friends’ homes, where people all bring food

Even if the event itself doesn’t revolve around food, I have to figure out how to get safely fed while attending the event:

• Conventions
• Vacations
• My college reunion 

For me, corn is nearly impossible to deal with. If I go out to eat, I am probably going to be exposed and have a reaction. Unless I can cook for myself with safe stuff, I am going to have a reaction. This can be minor, and it can be more serious, so the people around me have to know how to use an epi-pen. The last convention I attended with a friend, we ate out some meals (I was lucky and had minor reactions, yes, I know, dumb), I brought safe food and snacks with me, and we may or may not have smuggled in a hot plate into our hotel room and warmed up some foods. This was also before I really got good with my pressure canner, and didn’t have anything canned other than pickles that I could bring. Next time will be different and I won’t take so many stupid chances. I’ll still go out with my friends, but I’ll eat at the hotel.

My college reunion is in June. I’ve been in contact with the college to determine whether they have fridges and microwaves or not, and since I’m driving, I’ll bring in food I pressure canned with me that I can warm up in the microwaves. I’ve paid for all the meals so that I have a seat and can sit with my friends, but I won’t be able to eat anything at those meals.

As I stated before in our Relationships post, for most events, I will bring my own food, or eat before or after, but that can pose some interesting questions and reactions from others. Some reactions are sympathetic, and some, not so much. I’ve witnessed reactions that clearly communicate that people don’t believe I have a problem and must be making it up, and reactions which are intended to be sympathetic but are possibly passive aggressive. Here are some things not to say or do to a person with food allergies:

• “If I had to do that, I’d kill myself.” – I’ve heard this on multiple occasions and have always wanted to respond with, “Oh, should I nip off and slit my wrists now then?” but it’s not yet been said in a situation that I could get away with it.
• “Oh, I’m sure it only has a little, it won’t bother you.” This is where I want to stab them myself with the epi-pen.
• “You really can’t eat anything here? Not even a salad?”  No, I freaking can’t. If I’ve determined there’s no safe food there, there is no safe food there. Don’t harass me to eat something just because you think it looks weird that I’m not eating anything. Let me drink my glass of water or wine in peace. 
• “Isn’t there a pill you can take?” – No, there isn’t. I wish there were. Whoever develops one will make a billion dollars, but until that time, I’ll just not eat the food and continue to be healthy, thanks.
• “I would just eat x[food] anyway.” – Besides the whole potential for death thing, let’s talk about some of my reactions and see how you feel about spending multiple hours near a toilet, with the contents of your stomach exiting both ways. 
• “If I had that many food allergies, I would only eat one thing.” – I don’t even know how to respond to that. Boredom? Malnutrition? Eating one thing is better than learning new ways to cook?
• Playing the “can you eat x[food] game?” – Seriously, I don’t want to play that game. First, it’s depressing, and second, last time I checked I wasn’t a circus freak and I just want to hang out and have a normal conversation. 
• “Oh, how come you get to have x [whatever safe food I’m having]?  What are you, special?” said as I pull out my own safe food to eat. Really?  When you get to eat everything at a store whenever you feel like it? Really? Again, I want to stab them with my epi-pen. 
• People who take offense because I won’t take just one little bite of this special thing they made – Apparently they would prefer to show off how great the thing they made is, instead of keeping me healthy and letting me decline gracefully. Thanks.  
• People who tell me to eat local/organic/non-gmo, and I’ll be cured – While all of those things are good things, if I’m allergic to it, it doesn’t matter whether it’s local, organic or non-gmo. I’ll just have a reaction to a more expensive version of my allergen. 
• People who insist they are going to have safe food for me at an event and then don’t – While annoying, I’ve learned my lesson on this one. First, they are not going to have the knowledge that you do, and will likely make a mistake even if they do have the food. Second, don’t depend on others, just bring your own safe food. Less chance of a problem that way, and no questioning whether you should have eaten something or not while your stomach churns. 

It’s just food, people. It shouldn’t be a capital offense if I’m not eating what you’re eating at a social event. I’m lucky that I’m not airborne sensitive, so I don’t have to ask people to change what they are eating or serving, so I wouldn’t expect to get as much aggravation as I end up getting. And I’m lucky that my husband, and a lot of my close friends and family members are supportive. That being said, I’m also lucky that I have the kind of personality that if you try to “peer pressure” me or “guilt me” or tell me I can’t do something because it’s not done or because you’re worried about how it will “look,” I’m likely to tell you to shove it and where to go, and do whatever I’m going to do anyway. Sometimes, I’ll have to be more diplomatic with the message than others, but keeping myself safe is more important that whether it is socially awkward for other people or not. And if those people can’t get it, they aren’t worth the time and aggravation anyway. 

I’m going to start out by saying that I’m not nearly as restricted as Denise. While soy and gluten are in a lot of prepared foods, they aren’t nearly as pervasive as corn, and I so far don’t react to soy lecithin. I can, if I’m careful, eat out sometimes.

When I’m in charge of making plans, or when I am with a smaller group and can ask for some level of accommodation by suggesting places I know I can eat. But the thing is, with friends and family, we often find other work-arounds, and have learned to make plans that do not revolve around food.

And to me, that is a big key to life with food allergies — learn to make plans that do not revolve around food. The food-orientation of socializing is inculcated early — read this post on Gluten Dude for what parents of kids with food allergies deal with daily. (Full disclosure — I did read the original essay. I did not read most of the comments. Not enough sanity points in my day.) Those attitudes — why should I have to change my behavior when you have the problem? — are pervasive and problematic. If parents are teaching their children that their own desire for something is more important than someone else’s health, even if just by modeling that behavior, then despite food allergies being more prevalent among the younger generation, things won’t get much better as far as attitudes go.

Even if my allergies are most likely to just make me sick rather than kill me, I take my own health more seriously than I take anyone else’s feelings. For the most part, I’ve not experienced the peer pressure stuff Denise has — people generally have not encouraged me to eat something I said no to anyway. But the questions can be kind of intrusive and can derail or take over the social experience. So maybe some general advice for anyone who doesn’t have food allergies but knows someone who does — or may meet someone who does:

• When I say “no” to the pizza at a meeting, don’t point out that there is salad, or crackers, or cookies, or anything. Just accept the no. There is nothing I can eat. I am okay with it, and I will be more okay if you stop pointing out that I’m the only person not eating.
• When you tell me the ingredients in your dish at the potluck or party, and I smile and say thanks and then skip it anyway, please don’t take it personally or as an indictment. I don’t want to ask about your kitchen practices, about the potential for cross-contamination, or try to explain the list of what I can’t eat.
• When I bring my own lunch to an event, where lunch is provided, I’d really love it if you just don’t ask me about it. I know people aren’t being rude, really, but let’s just talk about something other than food. Maybe let’s not talk about “how healthy” my lunch looks or how that must be the reason I stay so skinny. Discussing my health and digestion with strangers isn’t high on my list of fun topics.
• When I decline an offer of food with an explanation — “No, thanks, I can’t. I have food allergies.” — and then change the subject — “So how long have you been involved in [this project or conference]?” Please take the hint and let’s move on.

I don’t feel obliged to explain. When I want to, I do, when I don’t want to, I don’t. And overall, I’m not angry at people who ask questions; I just don’t always want to play ambassador for the “alternative eaters,” especially not when I’m in my professional role.Unless you’re at a gourmet restaurant, you generally don’t need to talk about the food you’re eating, do you?

There are people I trust enough to cook for me, but I’m always aware that I am the only one who has to live through any mistakes I eat. If I really have concerns, I’ll skip it. Whatever “it” is.

I think our cultural obsession with food, as well as our very odd relationship with it, as a culture, both play into these questions and these interactions — but, hey, that’s a whole other post. Until next week, I’ll just say that events that don’t revolve around food, even if food is there, are much appreciated by all of us with allergies.

What about you — what’s the worst thing you’ve heard or been asked? What’s been the best response you’ve ever gotten? Have any of your social groups changed how they get together to focus less on food?

More Life With Food Allergies! You’ve been holding your breath in anticipation, haven’t you?

This week, we’re planning to discuss things you can do with your significant other or your friends or even your family that do not revolve around food. I know, it sounds crazy that food would be so central to socializing, and it does not seem that way until you can no longer easily eat anything anywhere.

As I said in the past post, I’ve found someone who thinks that finding things to do that don’t involve food is actually kind of a fun challenge. While our first date was a rather traditional dinner out, we’ve followed that with a rather eclectic collection of events that have, for the most part, been free. Many of them are somewhat educational, which I find interesting, and they usually provide good fodder for conversation afterwards. Stand-by — I’m going to start waving my nerd flag high and proud.

Because we’re in New Hampshire, my specifics are keyed to this area, but many of them are broadly applicable. If you can approach your own town or region like a tourist, you may discover new things.

We’ve seen only a few movies, but then popcorn, like pizza, might be one of the more evil tempting smells of foods you cannot eat. Streaming and DVDs do offer more options as far as getting your own snacks. With all of the TV series you can stream, appointment viewing of a TV series is really easy to do. But movies are a classic date night that do not need to revolve around food.

Museums are a great option — art, science, or history. Now, upfront, I love museums — I have degrees in art history. But what I think is great about going to a museum with someone is that it gives you something to do while getting to know one another. Museums can be a bit steep for entry, unless you’re near DC, but check with your local library to see if they have either membership cards you can check out or discount passes. Locally, we have the McAuliffe-Shepard Discover Center (planetarium and museum), the New Hampshire Historical Society, the Millyard Museum, a few local galleries, and the Currier Museum. Some museums offer free or discounted entry on certain days or at certain times. In fact, did you know there is a free museum day sponsored by the Smithsonian? No date has been announced yet for 2014, but stay tuned. If you’re in a major city, maybe you’re on this list of free museum days.

Author readings at a local bookstore (here in Concord, Gibson’s is one of my favorite places) are often free and usually interesting whether or not you’ve read the book (or intend to). They often have a calendar available online. The library will often have a few events as well, though my local library tends to be geared towards the younger and older crowds (school-aged, teens, and retirees).

Meetup may offer some options finding like-minded groups doing trivia nights, company tours (I met a good friend on a brewery tour, though neither of us drinks), lectures, walking tours. In fact, Denise and I met through Meetup, too. If you’re science-oriented, science cafes, going by a variety of similar titles, exist in three New Hampshire towns — Manchester, Nashua, and Portsmouth — and there are a bunch in Boston — there might be one near you.

Possibly my favorite resource is the New Hampshire Humanities Council calendar of lectures, performances, and events that we’ve taken great advantage of (so much so that they might be getting sick of our names on their participant evaluations). Last year they had a series of events on constitutional issues — Denise and Corinne and I went to the first, and I went to the last with Jack. Maybe you’re thinking that civics discussions wouldn’t be all that fun or interesting; I disagree — I thought they were pretty fascinating. But they also have history-related performances, literature recitals, and there’s an upcoming one on comics.

If you want to see a huge variety of events — theatre, arts, auctions, shows, exhibits, festivals, classes, and more — and you’re in NH, southern ME, or northern MA, you can try the NH365 website — search by region, type of event, or date.

If you’re the type, there’s also the great outdoors — plenty of local hiking or walking trails, biking or snowmobiling, whatever you’re into. Just standard caution — don’t hike off into the wilderness with someone you’ve never met before. Make common sense common again. Me, personally, I tend to prefer the outdoors when seen from the indoors for about 10 months of the year, but your mileage may vary.

With a little effort and creativity, there is plenty to do without food being at the center of everything. And hey, if you’re looking for another way to celebrate Friday, one that doesn’t involve cupids and hearts, can I suggest Ferris Wheel Day or Bulgarian Wine Day?

I grew up in rural Maine, and I’m used to driving all over hell and gone to go do things. Also, I went to school in Boston and it’s only about an hour or so from Manchester, so it’s fun for a day trip. The City of Boston site has a list of Free (and almost free) Things to Do.  You might want to check your city’s website to see what they recommend. Also check out Boston.com’s Things to Do section.  You can search by geographical area of the city and by category.

Since there are so many colleges in the area, you can to their websites and see what’s going on for lectures, readings, performances, concerts and events as well.  Since I went to Wellesley for undergrad, I had to go check out the stuff going on at Wellesley, but you can check out Harvard, MIT, Boston College, Boston University, Northeastern, etc, etc.  Also locally in New Hampshire, you can check out Saint Anselm College, UNH, and Plymouth State University, 

I always love to go the New England Aquarium or if tech is more your thing, go to the MIT Museum, I hear they have holograms and robots (They do, and it is awesome. — MK). Or go check out the Museum of African American History, the Peabody Museum of Archaeology and Ethnology at Harvard University, the American Textile History Museum in Lowell. You can do the standard stuff like the MFA, the Isabella Steward Gardner Museum, and the Museum of Science, but why not check out the weirder quirkier offerings Boston has?  Or check out the less traveled stuff in your city?

The last thing I’d suggest is seeing what community theater groups your area has and what performances they might be putting on.  I just went to a local production of A Midsummer Night’s Dream that was really good in Dover, New Hampshire. You can check out this website for local theater in New England.

We hope this gives you some great ideas; go have fun!

Welcome back to our Whatever Wednesday: Living with Food Allergies series. I bet you thought we forgot about it, but the truth is, we needed to talk about what we wanted to cover in this series. Expect to see more regular postings going forward. And when you see one of these? Grab a cup of coffee and settle in — we have things to say, and when you give free reign to a few liberal arts majors, many words you shall receive.

This week: Relationships, specifically those of the romantic variety. We’ll touch on socializing in general in a later post.

One of the things that was a little unexpected to me after my food allergy issues arose and continued to arise, (see my Denise page and my post on a subsequent visit to the allergist) is the effect it would have on my personal relationships and my social life. Because Valentine’s Day is coming up, we wanted to just focus on romantic relationships for this post. Just as disclaimer, I did get permission from my husband, Shawn, to discuss the things I’m about to discuss, so no one should be worried that I’m putting further friction or stress on my marriage.

Shawn and I met, dated, lived together and had been married for a couple of years before the extent of my food allergies (dairy, hazelnuts, scallops at that point) was recognized. We are food people. Our very favorite thing was to go out to eat, try new cuisines and new foods. And we would have gone out to eat, oh, say 2-4 times a week, prior to the food allergy apocalypse. After the initial apocalypse, i.e. finally getting it through my thick skull the extent of my dairy allergy and how sick it was making me, things didn’t change overmuch. We could still go out to eat quite frequently, sticking to mostly safe places like steakhouses, Chinese, Japanese, and Thai joints. We couldn’t go to all the places we would have liked because there had to be safe options for me, but it was a minor bump in the road.

After the second apocalypse, when I had to cut coconut, almond, eggs, crab, clams and flax, I pretty much lost Thai food and it was still annoying but still there were options. However, after the third apocalypse, I lost corn (and all derivatives), wheat, and chicken. If it had just been wheat and chicken, it might have been okay. But corn is so ever-present in our food supply that it’s hard to avoid it trying to cook at home, let alone go out to eat (see Where’s the Corn in Foods? and the Corn Allergens List). I tried a few times. I went out and got a steak and told them to put absolutely no salt (table salt can have dextrose in it, which is corn), no seasonings, no oil (canola can be cross-contaminated), and to give me steamed broccoli with absolutely nothing on it as a side. Sounds yummy, right? I still had reactions. The only thing I have been able to tolerate so far going out to dinner is going for Japanese, and getting edamame with no salt, and a cucumber avocado roll using the San-J Tamari soy sauce, the gluten-free version (the alcohol is made from sugarcane, so also no apparent corn issues and it doesn’t cause a reaction for me), and I have to skip the wasabi and the pickled ginger. But you know what? If that’s the only dinner you can safely get eating out, after a while it’s kind of freaking boring. So because I’m tired of being sick and breaking out in blisters on my foot (part of my corn reaction), if we are invited to go out to eat, and it’s an event we need to attend, I eat beforehand or plan to eat after, and have a glass of wine while everyone else eats.

There are two effects that this has on my marriage. Although Shawn has Type II diabetes and it’s not a good thing, he can still eat the majority of foods, just as long as he limits quantities and watches his carbohydrate intake. This sounds bizarre, because diabetes runs in my family and I know that diabetes can result in serious medical complications and early death, but I am so damn jealous at times that he can still eat almost everything. I don’t want diabetes, but some part of my head whispers that it’d be easier for me to manage than what I have to deal with now (see my post on Time). If we have to go out to dinner with others, I have to run home, eat something as fast as I can, and run there and watch everyone eat really awesome things, or I have to watch everyone eat really awesome things and then go home and try to find something to eat. If we go to a party, I have to plan ahead and bring food I can eat. I recently attended a memorial service for my cousin, which included food. I had to plan ahead to bring my own. Shawn doesn’t have to do any planning at all and he can go to a store and buy anything he wants. I can’t anymore. There are no convenience foods for me anymore unless I spent hours and hours canning them, and I am so freaking jealous of that. And the thing is, it’s not his fault that I have food allergies, so I feel like a bitch from hell for being jealous that his serious medical condition still allows him to eat everything I can’t. I hate feeling jealous in the first place, and I hate feeling guilty for feeling jealous.

The second effect is how damn guilty I feel for screwing up one of Shawn’s favorite things to do with me. Going out to dinner and talking was one of our favorite activities and ways to spend time together, and it’s gone. I know this sounds ridiculous, but before I met Shawn, when I was still playing the field, if a person didn’t enjoy food and exploring new and different cuisines (i.e. limited himself to American meat and potatoes food), that was sufficient cause for me not to see them anymore. I couldn’t imagine limiting myself in that way to be with that person. And since the third apocalypse this past April, I feel like I’m limiting Shawn’s life in some way now. I’ve raised it with him and he says it’s okay and that he’s more worried about me, but it’d be really tough for me if I were in his shoes, so I continue to feel guilty. I feel like this is not what he signed up for when we got married, and that he’s getting secondary smoke, so to speak, from my medical condition. He still gets takeout, and eats it in the house, and generally I’m okay with that (unless it’s pizza, in which case I have to go in the bedroom and close the door so I can’t smell it, because then I’ll have to put my head between my knees so I won’t want to eat it, despite knowing that it will shortly cause my stomach and intestines to reject all contents), but it’s not the same.

Besides limiting our favorite activity and the emotional repercussions of that, it also changes the dynamics of how we operate with respect to household chores and tasks. You might have noticed from the blog posts, or if you know me in real life, that I’m somewhat Type A. (Mary Kate will die laughing when she reads this.) Due to natural inclination and assorted baggage from my childhood, my standard operating procedure (hereinafter “SOP”) has always been that if I need something done, I make sure it gets done and probably do it myself, because no one will take care of you but you, and it’s best not to depend on anyone. My SOP has gotten me through some hard times. As a result, I’ve always placed a high valve on being in control of my life to the extent that it’s controllable, and managing my life so that I am not dependent on anyone for anything other than for emotional support. This can be problematic because (a) I forget to ask for help when I probably actually need it; (b) I hate to ask for help because it might mean that I have to depend on someone else; and (c) I have a huge emotional attachment to the fallacious belief that I can manage my own life without help from anyone. What is especially problematic was the application of my SOP to household chores, especially when I now spend inordinate amounts of time canning and making my own food (again, go read my post on Time if you didn’t already). It’s kind of hard to keep up with the household chores you previously did if you’re canning food you can eat 8-14 hours a day on the weekends for months on end to try to get a level of inventory so that maybe you can stop canning all the time. And it’s fricking stupid to think that you can. Unfortunately, my husband didn’t catch a clue and notice that I needed help, and my SOP, and my emotional attachment to it, didn’t allow me to ask for help until I was ready to blow sky-high. As a result, there were a few fights and a bit of friction until we re-negotiated over the new state of reality and set up new expectations for what we were each going to do going forward. 

I am very lucky that my husband has been so supportive about my food allergies. He’s seen first hand the reactions I’ve had. He’s stood nearby with a wet wash cloth while my stomach emptied its contents, and massaged my back while I’m curled up in a ball with cramping that feels like I’m being knifed in the stomach and intestines. He’s watched during challenges to see me blow up like a balloon and look like I’ve gained 20 pounds in less than a couple of hours, and to make sure I don’t go into anaphylaxis and that I can still breathe. He’s helped me find words when my brain doesn’t work well for a few days after a corn exposure and I say the wrong words or can’t remember the correct word for something. He’s learned how to use an epi-pen in case the day comes when I need it. He’s been willing to pick up the slack and help when it was finally clearly communicated to him that I needed it. He has never questioned my food allergies or my need to avoid any exposure to them. I’ve heard other stories in online communities that haven’t been so positive. Stories about spouses who are not supportive because it interferes with their own eating habits, it inconveniences them, or food that is safe costs too much for their liking. Stories about spouses who will do nothing to help their food allergic spouse or help the spouse who is managing the food supply for the couple’s children with food allergies. Stories about spouses refusing to believe the allergy exists and causing reactions for their food allergic spouse or for the couple’s children with food allergies as a result. Stories that end in divorce. 

People say that it’s just a food allergy, but it affects a lot more of your life than just avoiding food. 

Unlike Denise, I am not married. I was somewhat newly-single — and somewhat relieved by that — when I started this food allergy apocalypse and stayed that way throughout the entirety of that initial adjustment. Part of that was because of experience — prior to the food allergy diagnosis, I was “just” severely lactose intolerant, and that had been an issue more than once in the relationship that just ended. If just avoiding dairy had been an issue, how much more of an issue would this new list of food I couldn’t eat be? I admit, I cringed thinking about attempting to order food at a restaurant on a date and sounding like Meg Ryan’s Sally with a thousand special requests (and without the subsequent performance). And then I just didn’t date for a while.

Socializing almost without fail revolves around food because it can be a good and relaxed way to connect, to have time to talk with a bit of something else to do (eat) and a relatively recognizable end time at the end of the meal. Dating, even more so. Except that eating out is rarely relaxing if you’re dealing with food allergies.

When I did start dating again, first dates meant coffee. I figured when I got around to dinner with someone, hopefully I would know a place or two where I could safely order 1 or 2 things off the menu with minimal special request. That didn’t end up being the case, it turned out, as I was invited to dinner at a small Mexican restaurant by someone interesting enough to break the first-date-coffee “rule” and come to terms with going out with someone I didn’t know to a restaurant I didn’t know. For me, not having corn issues, Mexican is usually pretty good — they are frequently making dishes from scratch, know the ingredients well, and incredibly accommodating about leaving cheese off things. It was still a giant leap outside my comfort zone, but sometimes these chances pay off.

This one did, as that dinner turned into a second date (not food-related), and a third, where, as luck and fate and whatever might have it, I got glutened. I knew it had happened as I was driving home, as gluten and I have a very specific pattern together. Beyond being sick, I spent the rest of what little energy I had trying to figure out how to break one of the cardinal rules of dating: telling your date about your medical issues.

Anyone who has anaphylactic allergies is probably better at this than I am — I am sure that a peanut allergy comes up on a first date, or at any rate before a first kiss is negotiated. But this was my first go-round with “Hey, I have a list of food allergies that would make your head spin,” and given previous experience and some of what I read in allergy communities online, I was kind of worried that this was going to make me un-datable. As Denise mentioned, unlike some other health conditions, this can somewhat limit your partner’s social activities, too.

As it turns out, that was the first and last time I’ve needed to make that confession, as the guy I’d met turned out not only not to be a jerk, but someone who was really willing to work with me on this whole “dating with food allergies” project. On our fourth date, I cooked for him. He’s learning to cook for me (which, seriously, there is nothing more attractive), including the required intensive label reading. He’s perfectly happy to be a non-allergic tester for recipe development (aka guinea pig) and has actually taken most of the good photographs that have been in my recipe posts (and the one in this post).

We have occasionally joined groups for socializing where there is nothing I can eat, and I don’t. Knowing I have some backup on that helps me feel a little less weird about it, and it seems as though, in general, his acceptance makes other people ask fewer questions. I think I’d expected the worst, as generally you read more horror stories than tales with happy endings, but instead I got the best.

We don’t go out for pizza. We’ve never been near an Italian restaurant, or an American chain. But we’ve gone in different, not-food-oriented directions for dates, and that gives us a great topic for next week.

 

Anyone else want to share experiences with how food allergies have changed relationships — or potential relationships?