Living with an Anaphylactic Wheat Allergy

“Is it like a gluten intolerance?”

This is the most common question we get, having a child with a severe, IgE-meditated wheat allergy. If you are a parent of a kid with food allergies, you probably already know the answer: No. Just like a milk allergy is not the same as lactose intolerance and a soy allergy is not the same as a soy intolerance.

Our standard answer is: “It’s like a peanut allergy, but to wheat. He carries an EpiPen for it.”

Sometimes people are really shocked and can’t imagine how we deal with it. But after a few years, it’s become just a normal part of life.

Early Days

Wheat was our son’s very first reaction. He was just about a year old and I gave him some wheat baby cereal for the first time. He ate one bite and then got fussy. We headed off to a playdate and he “fell asleep” in the baby carrier. But when I took him out of the baby carrier, his face, back, arms and legs were covered in hives. He had gone into shock.

Wheat? My husband and I were stunned. We didn’t really know that people could be allergic like that to anything but nuts and peanuts. We had a lot of questions for the allergist, like “can he eat the cheese off a wheat pizza?” (no), “does he really need an EpiPen for it?” (yes), and “but no one has ever died from a wheat reaction, right?” (wrong). We learned that people can have anaphylactic reactions to just about any food, and that wheat is one of the top 10 most common foods for severe reactions. We also learned that some kids can outgrow the allergy. (Still waiting.)

The hardest years for us were the toddler years. There were a lot of little parties, and they all seemed to involve children with cake-covered faces trying to kiss our son. Playgrounds full of toddlers trying to share their goldfish crackers (by shoving them towards his face). Fallen crumbs at the barbecue as my son crawled on the ground and tried to pick them up (as is instinctive among babies and toddlers). We had to teach him as a toddler to over-ride his instincts – and we had to stay on our toes. “But Cheerios don’t have wheat,” my friend patiently explained to me. Sigh. “He prefers to eat his own food,” I said. Our standard mantra.

“Nut Free?”

We travel quite a bit, and while I support the No Nut Traveller petition to keep nuts off airplanes, it’s really not relevant to us as a family living with multiple allergies. When we take a train or flight, Bax’s allergens are all over and they always will be. Our choice with travel is either: A. Wipe down the tray table and eat our own food; or B. Never travel. No one is going to ban his allergens. So we learn to live with them, side by side.

There are a lot of restaurants where there may only be one or two menu items that are free of his allergens (he has 6 allergies). So early on, Roger and I quickly developed the ability to eat a sandwich with one hand and cut up Bax’s chicken breast with the other, using the precision of a surgeon. Baby wipes were the second asset, after our EpiPens, that we never left home without. Anyhow, our dining out options are A. Ambidexterous eating; or B. Never eat out. No restaurant is going to ban his allergens. So we learn to live with allergens, side by side.

Growing Up

Bax could not attend preschool because no preschool that we spoke to was allergy-aware. They were proud of their nut bans, but did not have hand-washing protocols or mealtime monitoring, essential for kids with milk and wheat allergies because these are all around at snack time. I know there are some good centres out there but we didn’t happen to find them. We joined a homeschool co-op and we feel like it has been a surprising asset. First, for the academic and social opportunities, but also for supporting his growing responsibility in managing his allergies. (I wrote about this in another piece.)

He is five and is now taking on more and more of a role of managing his allergies. I would say he is eagle-eyed but mellow: the near-impossible combination we are striving for and hope to keep. The other day, his piano teacher offered him a cookie and he said “I think that has wheat in it.” When the teacher said he was not sure, Bax quickly chirped “No, thank you!” and just moved on. If you have food allergies or a child with allergies, you can understand why this was a happy moment for me!

It’s hard – really hard – for me to imagine the challenges that the future brings, in terms of his having a wheat allergy. Wheat is an ingredient in so many things (including beer! I am trying not to think about the teenage years…). It would be so easy for mistakes to happen. We are focused on the fact that they probably will, actually, so teaching about the Epi is 50% of the effort; teaching about prevention is the other 50%. EpiPens save lives, and he may need his someday when we’re not there.

Managing It

We have ended up eating a primarily whole-foods diet since most packaged products contain wheat — and so many “gluten-free” products contain another one of his allergens (such as nut flours or sesame). A “Gluten-free” stamp on the front of the box is also NOT a guarantee that it is really wheat-free. The amount of wheat cross-contamination that is allowable for “gluten-free” is safe for people who have an intolerance to gluten, but it’s different for people with an IgE-mediated wheat allergy.

I will never forget visiting the gluten-free bakery in my hometown and seeing their open kitchen, where wheat-flour products were being rolled out on shared countertops and flour was flying through the air. This is pretty common, so when we buy a “gluten-free” product, we have to check with the manufacturer, and eating “gluten-free” pasta off a restaurant menu is not something we do unless we know the source.

Living with an anaphylactic wheat allergy has a big impact on daily life, because wheat is in so many products. We read labels closely, even on products such as soap, shampoo and art supplies. We pack a lot of our own snacks and soaps when we travel. We have to be really prepared for things like travel, (but we aren’t letting the allergies stop us). We are grateful for the EpiPen, and it is obviously a key part of educating our son about allergy management. It all felt overwhelming at first, much moreso than his other allergies, and the early years were really, really difficult. But we have adapted. It is amazing how a person can adapt, really — especially kids — and still lead a full life. That’s our goal in managing a severe allergy to wheat.

Re-published with permission from Anne King’s blog May Contain.