I was allergic to hundreds of things when I was growing up, but anaphylaxis wasn't part of the picture, so I had no idea what living with life-threatening food allergies was like.
In our house, Jay is allergic to wheat and gluten (rye, barley, and most oats) and dairy. The nutritionist also has him off of soy, refined sugars, and most carbs. GracieGirl is allergic to wheat and gluten. E is allergic to peanuts and tree nuts (anaphylactic), eggs, and dairy. Nate was tested as a toddler and no foods showed up, but I suspect a dairy allergy or intolerance.
Jay has severe eczema, E has eczema and asthma, and Nate has asthma.
We make almost all of our food from scratch. There are some prepared foods we can buy but they're expensive and often don't taste as good as homemade.
Baking is an adventure. We have a cabinet and freezer full of different flours. We can't use just one flour when we bake; we have to combine several flours, such as rice, sorghum, tapioca, and potato starch. We use xanthan gum to keep baked goods from becoming a crumbly mess, and powdered egg replacer as a binder. We use olive or coconut oil instead of butter and rice milk instead of cows' milk.
We never have peanuts or tree nuts in the house. We do have eggs, and it's a bit stressful keeping E away from them. E doesn't have anaphylaxis to eggs, but he did have an immediate reaction after eating them, so we don't know what a second reaction might be like. It's sometimes challenging, especially when we're rushing, to remember who eats what. GracieGirl can't have the Ezekiel Bread; she has to have the brown rice rolls. E can't have the rolls because they have egg whites in them. Jay doesn't like meats or most vegetables and that's all he's supposed to be eating right now. Nate can't stand rice milk or gluten-free bread.
On the rare occasions that we find a meal, or even a single food, that everyone likes and can eat, it's cause for celebration!
We always plan ahead. When we leave the house, we pack food and drinks for everyone. We don't have the option of stopping to pick something up if we run late and get hungry.
We read labels, read labels, and just when we think we've read enough, we read more labels! Product ingredients change, so, just because we bought something that was safe one time doesn't mean it will be safe the next time we go to buy it. We also avoid products that were processed in facilities or on equipment that processes peanuts or tree nuts. Studies have shown that a full 10% of foods manufactured on shared equipment will actually have nuts in them.
We avoid some homeschool events, especially those centered around a meal or where a lot of snacks will be served. We opt for more of the outdoor events and field trips.
Family get-togethers are difficult. Jay has a tough time watching his cousin eat pizza and chicken nuggets and desserts that he loves but can't have. When possible, we bring our own substitutions so that he doesn't feel as left out, but it's not always possible and it usually doesn't look as good to him as the stuff his cousin is eating!
Baseball games and flying are two other things that we avoid because of nut allergies. We always carry wipes, and when we go shopping, we wipe down the cart before putting E in it, in case the child before him was eating nuts. E is at that age when he puts everything in his mouth and I worry that he'll pick up a piece of discarded candy at the park that has nuts in it. He also believes that all cups and water bottles must be his, and I worry that he'll grab one that may belong to someone who was eating nuts before drinking from it.
I'm also concerned about people not taking the children's allergies seriously, and/or thinking that we're overreacting or being overprotective. With Jay and GracieGirl, they'll get sick if they eat foods they're allergic to, but with E, he could die from eating nuts or peanuts. He doesn't have to eat a Reece's Cup; he could react from getting a kiss from someone who had eaten peanuts or from eating food that had been served with a spoon that had just a trace of nuts on it.
E can never be without his EpiPen. Thankfully, we have never had to use it. It scares me to think of using it on him, but I'm confident that I would do what I had to do if he was having an anaphylactic reaction. We have EpiPens in a bag by the door, along with a bottle of Benadryl. There are EpiPens and Benadryl in the kitchen and upstairs in our bathroom. We always have them on hand, in their designated spots, and we always make sure they're in date.
E is rarely away from us, and I wonder about sending him to friends' houses when he gets older. It's hard enough for us to keep on top of reading labels all the time; can we expect others to do it vigilantly? What if his friend gives him something, without the friend's mother knowing?
Jay, who is almost nine, knows what he can and cannot eat, and he's good at telling people that he can't eat something. GracieGirl is good, too; she knows that she can't eat bread or pasta or cookies or pizza at people's houses, but I sure can't expect her to know about all of the hidden sources of wheat. All of the kids are very protective of E and will quickly tell family or friends not to feed him certain things or eat nuts near him.
I don't worry about E all the time, but I do have concerns when he suddenly develops hives and I have no idea what caused them. When his eczema or his asthma flares, I wonder if a food allergy is involved. Recently, his eyes have been swelling and he screams and rubs them frantically. He's also been sneezing a lot, after which he also screams and holds his ears. I'm also concerned about other allergies to foods he hasn't been tested for. We haven't given him fish or sesame seeds, for instance, because they're highly allergenic foods, and we don't know if he'll react.
Maybe this is sounding whiny, but I'm not complaining about it. We do what we have to do. Yes, it's a pain, and yes, if I had a choice, I'd certainly prefer that the kids not have food allergies.
On my Fantasy Food Allergy Wish List, if I couldn't get a cure for food allergies, my next requests would be a freezer full of allergy-safe, delicious convenience foods that all of the kids loved, and a healthy, allergy-free fast food restaurant in every town.
I can dream, can't I?? :)
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