Anyone, Anytime

I was seventeen when I had my first anaphylactic reaction. So, you can see why I am frustrated when people assume food allergies, peanut in particular for some reason, only affect children. Yes, most recorded initial diagnoses are in children. But most do not outgrow the allergy, they are still just as allergic as adults. And many people do not develop their allergy until they are older.

The onset of my allergies seems to correspond to the beginning of my other auto-immune symptoms. I'm going only on hindsight, I wasn't diagnosed with Hashimoto's until I was 28. But I had been dealing with the symptoms for several years (lack of energy, wild fluctuation in weight without change in diet or level of exercise, intolerance to cold, low blood pressure, dry skin, depression, swollen neck, etc.)

Research is still being done, but there seems to be a strong correlation between people who have auto-immune disorders and food allergies. My endocrinologist also seems to think there is a connection between the two. An auto-immune disorder is diagnosed when the body attacks its own tissue. Mine is organ specific, it attacks my thyroid. Allergies happen when the immune system attacks other things (pollen, dander, food) as if it is an invasive disease. It makes sense that if someone's immune system is already attacking things it shouldn't, it might be more likely to make the same mistake with something else.

That being said, auto-immune disorders are rare in children. The majority seem to be diagnosed in people in their 20s and 30s. And this is only one possible reason for an adult onset food allergy.

I think my late onset has given me a unique perspective. And it has given me some additional struggle. I was a senior in high school when  had my first severe reaction and we figured out why I felt sick all the time. By the time we knew how severe the allergies were and how to handle them, I was living on my own. My parents never learned how to live with me as I am now. They don't seem to really get what kinds of precautions to take. Sometimes they forget entirely.

Other people that knew me as a child seem confused. I've heard "but you used to eat X." I've also discovered people that think I'm faking it. I guess, to an outside observer, it can seem strange. As a child I did eat peanuts and tree nuts without a problem. As a teenager, I babysat often and made peanut butter sandwiches and survived. When I was 15, I had a job at camp that involved a lot of washing dishes, many of which would not be safe now.

When I was 16, I started getting intestinal cramps every time I ate peanuts. I started to notice the correlation myself, but my mother and the doctor both thought the abdominal pain might be something else, so we looked for ovarian cysts. Then they thought it was menstrual cramping. Next, stressed induced. A year later, I ate Asian food cooked in peanut oil and had my first bout of anaphylaxis. I finally got to see an allergist and confirmed my suspicion.

Knowing my experience, some of the people around me still assume food allergies are a children's thing.

When my current church was debating and constructing its new nut-free policy, one of the suggestions was that we only keep children's events nut-free. The person suggested this knowing I was in the room, and knowing I was allergic. Which implies either they think I'm a child (I'm in my 30s), or they're telling me I'm not welcome. When I pointed out that all of the people with food allergies in our congregation happen to be adults (there are at least three of us), they gave up that particular angle. But I'm still not entirely convinced that person really gets it.

Anyone can develop an allergy at any time in their life. Our bodies are always changing. We need to get out of the mindset that food allergies are a children's disease, and start working to be inclusive everywhere.

A Root of the Problem?

A few days ago, I was reading through the recent posts on notalwaysright.com, a website dedicated to insensitive, thoughtless, and just plain stupid things customers do and say. I ran across this post: You Say Tomato, I Say Epinephrine. And I think it solidified one of my theories on why people who haven't actually experienced life-threatening food allergies often downplay or dismiss them.

I found myself wanting to yell at the person who submitted this post, because they clearly didn't fully understand their actions.

I have seen other people do this too; they don't like a food, so they say they're allergic to make sure a restaurant, host, or caregiver doesn't give them any. This person even exaggerated further, stating that it was a severe allergy! And then went on to order a side item that contained the "allergic" ingredient, planning to eat it without consequence.

First, this person made extra work for the kitchen. Instead of simply leaving tomato off the sandwich, they needed to ensure that the grill, utensils, etc had all been completely cleaned and that their meal was kept a safe distance from any other tomato products in the kitchen. They may have needed to modify the recipe - ingredients hide in places you don't always expect or notice them.

This is why I am always so careful to be completely honest: I have life threatening allergies to peanuts and tree nuts. I have mild to moderate allergies to shellfish, goat milk, and red grape. I have intolerances to lactose and tuna. I am vegetarian. And I really dislike olives, probably as much as this person dislikes raw tomato. Good chefs understand this. They take every precaution with the allergies, and are careful with the intolerances. They cook on a vegetarian dedicated, or cleaned grill. They occasionally make mistakes with the olives, but olives won't actually make me sick or kill me. I appreciate the extra work they do to ensure my safety.

But my main concern is that people who don't understand allergies observe people like this. And I have to wonder if they think this is what's happening when I list my legitimate food allergies.

I have had people try to tell me I'm exaggerating, or just being picky. I have had people tell me to eat around the allergen, or "pick it out," not understanding that just touching the nut could give me a life-threatening anaphylactic reaction.

If we want people to better understand the severity of food allergies, we need to represent them appropriately. Please don't say you're allergic to something if you're not, especially if you are going to disprove yourself within minutes. Be honest, tell them you just don't like it. Chances are, they'll get it right. If they make a mistake, be forgiving, at least it wasn't something that could have actually hurt you. If you do have a true allergy, make it clear, people like this are out there.

The PBJ Fallacy

I have been told by several adults in different locations, under different circumstances that "we can't eliminate peanut butter (from our event) because its the only thing kids eat."

That's not true. While the PBJ is a favorite for some kids, it is usually not, and should not be the only thing they will eat.

In fact, most of the kids I have encountered understand food allergies quite well. They see it at school, at camp, at extracurricular activities. They know that peanuts can hurt or kill some of their friends, classmates, teachers, etc. And they are willing to forgo that food in public areas and/or in the presence of an allergic person.

To be honest, its not all adults. I've noticed that the culprits usually seem to be between the ages of 50 and 75. Maybe its a generational thing? I want to believe that they truly don't understand, but the message they are sending is that a picky child having to make a different meal choice far outweighs my personal safety.

Yes, children can be picky eaters. To be fair, we are born with all the taste buds we will ever have. And as we age, they slowly die off. So flavors are much stronger to children. Its only fair that many of them don't like some of the more potent foods. However, it is very rare to have a child that will only eat one thing. And if that is the case, shouldn't we be challenging that child anyway? They certainly cannot be getting all the nutrition they need from a single food item for months on end.

When hosting public events, its time to start considering safety and inclusion first. There are plenty of safe "kid-friendly" foods.

The Round Table

A lot of my experience has taught me that, in general, older children and teenagers are more aware, empathetic, and proactive about food allergies than adults. To illustrate, I'll share two stories from the same camp...

The camp chef knows me. I'm there at least three times a year with my food restrictions, allergies, and intolerances every year since before he was hired. He catered my wedding. He knows what I can and can't eat, as well as what I can't be near. But, sometimes he makes mistakes. Or doesn't quite get it.

When he does include peanuts or tree nuts in a meal, he makes sure to tell me at least a meal in advance. He has helped me set up a nut free table for these meals, and everyone at my table gets something else to eat.

First, the adult group. I was there in the off season for a planning weekend. All of the adults involved in making the summer run stay in one of the winterized buildings for three days, and we eat family style in tables of 8 in the dining hall. The chef forgot I was coming and our first breakfast was scheduled to be banana walnut pancakes. He assured me that we would have walnut-free pancakes for one table and everything would be fine.

I arrived at breakfast a little early and everything was as the chef said. We had a designated nut free table on the edge of the room to minimize contamination. I sat, with my husband, and waited for the rest of our group to arrive.

Every single person walked right past us and sat at one of our other two tables. There were a couple "sorry, I really like nuts" comments, but most people just ignored us. My husband and I ate that meal alone at a table set for eight.

I honestly don't think most of them realized what message they were sending. But I heard, clearly, "we think eating the nuts is more important than including you."

Another time, in the summer, I was in charge of a group of teenagers. I had spoken with the chef, and other members of kitchen staff, and had been advised that there would be peanut butter available at lunch as a back up option for picky kids, but that it would be kept near the salad bar and I am seated far enough away to not be a problem.

I was walking near the end of my pack of teens, headed toward the dining hall for lunch. As I approached the building, a small group of my youth burst out of the side door and ran toward me. "There's peanut butter on every table! You can smell it everywhere! Don't go in, we'll go talk to the kitchen."

I waited outside. I had no idea what to expect. I didn't know if I should let my counselors supervise lunch and go eat some of the safe snacks I had packed away in our cabin, or if I should forgo lunch and wait outside, or risk it go inside and wheeze all afternoon, or if my youth were really going to manage to persuade the kitchen staff to do something about it.

Within five minutes, those youth were carrying out clean plates, cups and utensils. Another few followed with serving bowls and platters of safe food.

Those teenagers didn't just remember and bring me safe lunch, they brought enough for themselves too. They sat with me at the round picnic table and we ate our nut free lunch together outside.

The Wedding Problem

Its wedding season, so I thought I'd say a little something about the anxiety from the nut free vegetarian perspective...

Most invitations come with a bare-bones reply card. For example, the last one I received had a space for number attending and then the following two choices to be checked off for the reception meal: Chicken or Beef.

First of all, neither of those proteins work for me. I haven't eaten meat in so long that not only is it against my belief system, but it would make me horribly ill. But, even if I could eat one or both of those, how are they prepared? What comes with, on, or stuffed inside of the protein? Where is it prepared? What else is in that kitchen, and what is the likelihood of cross contamination? Beyond that, what other courses aren't you telling me about: nut studded salads, breads, desserts?

If I know the couple or the family well, its easier for me to have a conversation with them ahead of time and ask these questions. At least once, the bride actually thought of me before I asked and made sure everything was safe. But, many of the weddings to which I am invited are arranged by people I barely know, or perhaps don't know at all.

We all get invited to an occasional random wedding: a coworker, attending as a guest with a friend who knows the couple, a family friend that you only sort of know yourself, an extended family member you haven't communicated with all that much, etc. I'm a pastor's spouse. This happens all the time. Most of the weddings my husband officiates come with an invitation in both of our names.

I feel like I'm left with a handful of awkward choices:

• Go anyway. If there's a vegetarian option, choose it and hope for the best but prepare for the worst. Eat a light meal ahead of time. Take an anxiety pill. Pack Benedryl, an EpiPen, and a fully charged cell phone. 
• Try to talk with whomever is in charge of planning the meal. If I don't know the person well, this usually goes badly. People that don't understand life-threatening allergies think I'm being picky and rude.
• Just don't go. Safest, but it has some major drawbacks. If the wedding is for a member of the church, I can be seen as antisocial, or worse as if I have something against that particular member or family. 

...So, I challenge every one of you: if and when you are planning an event with a reception like this, be open to questions. Chances are, someone attending will have a food allergy or other reason for concerns. Maybe describe the meals a little more. Maybe add a phone number or email to contact with questions, concerns, or special needs. Please don't be offended if someone is asking these questions, not eating at the reception, or avoiding the dessert table. Chances are pretty good they are just trying to avoid a life-threatening reaction.

The Beginning of Something New!

As an adult with life threatening food allergies. I have been frustrated with the lack of education, information, resources, and recipes aimed at adults. As a result of these parents of allergic schoolchildren communities, I have encountered an astonishing number of otherwise intelligent adults that swear food allergies only affect children.

These same adults are usually the people who do not understand that peanut and tree nut allergies are often life threatening. An allergic person can suffer anaphylaxis, hives, swelling, restricted airflow, and death, not only from eating the allergen, but also from skin contact and/or inhaling airborne particles.

I have been told that I am exaggerating, that I can "just eat around the nuts" or "pick them out," and that I "just shouldn't come" to community events because the people in charge aren't willing to give up their favorite cookie.

Recipe searches for "nut free" items usually provide alternative classic kid food. While that's a great thing, I would love to see more out there for the adult palate. One of my goals is to create a database of safe recipes, as well as resources on substitute ingredients that allow us to convert otherwise unsafe recipes.

In addition to my allergies, I am a vegetarian. Recently, mainstream vegetarian publications have been adding nuts to almost every recipe. I would love to provide an alternative: safe food for allergic and restricted adults, and resources for everyone who touches our lives (and our food).

My main goal is to provide an opportunity for education, so we can create more safe, inclusive environments for everyone.