One family’s quest through an allergen-filled world
BY JENNI PERTUSET
My daughter asked if she could have another cookie, and I felt my pulse quicken. Another cookie? I didn’t know she’d had the first. “Oh, yeah,” my uncle said. “I thought it was OK. They were no-bake, made without flour or eggs, so she should be fine, right?” No. Those cookies had peanut butter. I wouldn’t have even let her hold one in her hand to pass to a cousin.
Feeling close to panic, I examined Meg for the symptoms I’d seen on her two previous exposures. I listened for wheezing or shortness of breath, which she’d suffered the second time. She was breathing fine. I looked for hives, which appeared on the first. Her skin was clear. When had she eaten that cookie? It had been about an hour ago. I’d been with her, as had my aunt, uncle, and several cousins, the whole time. Not watching her closely, admittedly, but anaphylaxis is hard to miss.
From the increasing intensity of her reactions, her health care providers—and her parents–feared a severe reaction was inevitable, and one had readied me with an epinephrine auto-injector (EpiPen®). I thought I’d have to load her body with adrenaline to cope with an emergency, instead I’d felt the rush of adrenaline fade from my own as the threat of emergency passed.
I was relieved, and perplexed. Had she outgrown her peanut allergy? We’d already recently discovered that she had become less reactive to some foods, including wheat and dairy. But peanuts are usually a lifelong allergy.
Food allergies are adverse reactions by the body’s immune system to proteins that for most people are harmless. The most widely understood allergic reactions occur when an abundance of the antibody Immunoglobulin E (IgE) triggers responses in the lung, skin, and mucous membranes when exposed to an allergen — responses such as itching, hives, sudden drop in blood pressure, and respiratory distress. The reactions are immediate and sometimes severe.
Until recently, only IgE reactions were recognized as allergies. But responses to food that are controlled by other aspects of the immune system are likewise allergic reactions. Because these reactions are often delayed, causation can be harder to identify, and diagnosis is often more challenging. Celiac, a disease in which the protein gluten damages the lining of the small intestine, causing intestinal distress and reducing the body’s ability to absorb nutrients, is one example.
My husband and I both suffer from allergic disorders. During childhood, I was hospitalized frequently with allergic asthma attacks. Steve’s eosinophilic esophagitis caused swelling of his esophagus and swallowing difficulty. Our allergies and asthma put Meg at high risk of developing food allergies. Once we knew she had them, we struggled to understand what they were and how to cope with them.
We began, with the help of her healthcare providers, to identify her allergens using a food diary, but with multiple foods and reactions that for some foods didn’t appear until two days later, it was befuddling. I wanted clear answers, and hoped that allergy testing would provide them. I didn’t know how misplaced that hope was.
Testing for food allergies was surprisingly unhelpful. Though a negative reaction to a skin prick test can rule out an allergen with 95% certainty, approximately 50% of positive reactions are false positives. And that’s of the well-regarded skin scratch or prick tests and RAST blood tests. Another test suggested by one of Meg’s providers was a ELISA blood test, measuring Immunoglobulin G (IgG), an antibody that has a poorly-understood connection to allergic response. The trouble is that there’s no evidence that the presence of IgG can identify food allergens.
Though the process was slow, our own observations of her reactions and testing those observations via diagnostic elimination was more useful. After many months, Meg stopped waking several times a night scratching at scaly patches of skin (and our relationship with her improved with adequate sleep for everyone). We felt glad we’d done the detective work.
As hard as it was, identifying her allergens was among the least challenging aspect of eating with food allergies –and as a nursing mother, to protect Meg I was eating as though her allergies were my own. Steve ate as we did to keep from tempting or taunting us. We grieved the loss of comfort foods along with the ease of continuing with our way of life. New eating habits brought new buying and cooking habits. We learned to read labels with exceeding care. We ate at restaurants infrequently and rarely relied on packaged foods. We feared being difficult for our family and friends to feed, and we felt the exclusion from traditions and community expressed only through shared food.
With the long list of allergens our family avoided, I frequently heard the question, “What can you eat?” My approach was to celebrate how broad our diet could still be. When I had been a vegetarian, I relished a hearty mushroom and shunned soy “burgers.” I took the same approach under new circumstances, looking for foods fulfilling on their own terms, rather than in their ability to approximate what I couldn’t have. While some our family members seemed to understand, even enjoy the challenge, and offered meals to satisfy everyone at the table, others served us partial meals or poor imitations of what everyone else was eating.
We adapted, staying in lodgings with kitchens when we traveled so we could guarantee to eat well at least part of the time. We would also bring along separate safe foods when the situation warranted, such as an allergen-free sweet for Meg when the rest of the kids would be eating birthday cake.
Our changed eating habits brought unexpected joys as well. We ate better. We cooked more for ourselves. We experienced growing curiosity about our food, and gained greater skills and knowledge in the sourcing and preparation of it. My concern for Meg fueled the journey I was already leading our family on to eat more seasonally and sustainably, and that journey made it easier to feed our family wholesomely. While our extended family didn’t always understand, most of our friends did. Several also struggled with food allergies or intolerances (adverse reactions that aren’t immunological), and we felt welcomed at their tables. We also had the good fortune of welcoming others who weren’t always so well accommodated. At one of Meg’s birthday parties, I felt pleased to hear one mom say, “It’s so good to know we’re safe here.”
Though Meg hasn’t entirely outgrown her food allergies, we’re far from our restricted diet of just a year ago. Meg’s changing reactions are yet again changing our relationship with food. Most notably, she is learning to make choices about foods based on factors other than whether they’ll make her itch. I can’t just answer, “that has soy,” I now have to explain why I don’t think it’s a good idea when she asks for a processed treat. But she’s figuring things out for herself.
Watching her cousins scoop up forkfuls of macaroni and cheese made from a box, Meg asked if she could have some. Then she changed her mind. “Actually, Mom,” she asked, “would you make me some noodles with real cheese and butter?”
Jenni Pertuset lives on Queen Anne with her family. She just baked her first loaf of bread in 4 years.
For some tips on living with food allergies, click here