Author: STFAA

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. 

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?