Food allergies: I hate them. I never, ever, ever saw them coming, and I never thought I would have to deal with them. Quite frankly, they have been both a much bigger and smaller cross to bear than I ever imagined.
When I learned that Ben was allergic to nuts I was bummed, but not too worried. Easy PBJs would have to be moved out of the easy lunch menu rotation but we could make it work. But when we learned that JF is allergic to dairy, nuts, eggs, wheat, tomatoes, and soy (along with cats, dust, and various seasonal crap) I was both incredibly sad and really worried.
Food is an important part of every single culture. One's ethnicity, religion, and socio-economic situation all combine to define what we eat and how we eat it, and what we eat and how we eat it help to define who we are.
Food brings people together. It helps us celebrate and grieve. It heals us and unites us. Traditions center around it and our holidays are filled with specific food that for a general culture and individual families help define that holiday.
The Super Bowl has chips, dip, wings, and beer. Birthday parties, weddings, graduations, and pretty much every other celebration has cake. And on it goes...
Valentine's Day: chocolate
St. Patrick's Day: corned beef, soda bread, potatoes, and beer
Lenten Fridays: mac n' cheese, grilled cheese, cheese pizza and fish
Easter: chocolate bunnies and jelly beans
Fourth of July: hot dogs and watermelon
Halloween: Trick-or-Treat candy and caramel apples
Thanksgiving: turkey, buttery mashed potatoes, stuffing, dinner rolls, and pumpkin pie with whipped cream
St. Nicholas' feast day: Chocolate coins and candy canes
Christmas: cut-out cookies, hot chocolate, and casseroles
So just what do you feed a kid who is allergic to everything? And how do you make stuff special when so many of the celebratory food gold standards (pizza, ice cream, s'mores, and cake) were now off limits?
If you are a mom who just learned that your child has food allergies I want to tell you something: It is hard. And it can be very isolating. And people won't get it. And you will worry about your child every single day, especially if the allergies are severe. But you can do it. Your child will learn to advocate and ask questions to keep himself safe. Your loved ones will come to understand and will put your child's presence above the importance of the family's traditional pecan pie. And you will find that there are lots of foods you can feed for your child and your whole family. You can do this.
But first... go ahead and cry. Mourn those nachos, family pizza nights, Taco Tuesdays, and casseroles. Mourn the birthday cakes and milkshakes and Go'Gurts. Mourn the loss of friends and social functions. Cry and feel afraid for a little bit because I understand and I think you deserve it. But once you're ready to move on and get going, well let's get going.
The first step in moving forward is figuring out what is going to work with your family. Our situations will vary, but I am going to share five ways I feed my son - who is allergic to everything - and keep him safe in the world. Maybe some of them will be helpful to you.
#1 - Realize he's not allergic to everything. When wheat, dairy, eggs, nuts, tomatoes, and soy were taken out of our family dinners I was reeling, but the truth is there is a whole month's worth of dinners that don't have to contain any of those items. Basic meat, veggies, and fruits. Rice, quinoa, and steel cut oats. Vanilla Rice Milk isn't so bad, rice krispie treats can be made with coconut oil, and Earth Balance Soy Free "butter" spread is actually pretty good. Salt, pepper, and other seasonings go a long way and there's lots of tricks vegans have been using for years that can be borrowed. Focus on what still *is* on the menu, not what isn't.
#2 -Try new recipes knowing that some will flop and some foods just can't be replaced. For a long time I felt I had to find recipes that would give me an exact-tasting, allergy-safe version of the food we wanted to eat. But the fact is baking always, and cooking sometimes, relies on chemistry and when you change the ingredients you are not going to get the same result. That being said, some recipes are simple to adapt (like the rice krispie treats mentioned above) and you will learn what they are - just be patient and don't be afraid to try, fail, and throw things out. And by the way, while most recipes I have tried online have failed me in one way or another, The Healthy Gluten-Free Life Cookbook has been wonderful. I'm not being compensated to say that, either. I just borrowed and then bought the book and want to share, although that is an affiliate link.
#3 - Say "no" to events when you have to. For the most part we have stopped going to potlucks, reunions, parties, and even our parish's coffee and donuts because it's just not safe for our boys, especially our son with the severe allergies. Truthfully, this is one of the hardest parts for me, because I want to be with my loved ones, but food is everywhere and at everything and my child's safety is more important. If it's not a situation where we can control how food is served and when hands are washed we just stay home.
#4 - Say "yes" when you can and help hosts keep things safe. Fortunately there are people who love us and who are willing to learn. We've had entire Thanksgiving dinners that are entirely safe for my boys to eat! When someone offers to make things safe for your child with allergies take them up on it! Explain beforehand what will need to be done and then pitch in, especially if it's the first time for the host. Bringing food, explaining about the allergies and hand washing to other guests, helping to wipe down tables and put food away - all of that helps you and others create a community with the shared goal of protecting your child.
#5 - Have a plan and communicate it. Since allergies, our family has changed how things work in our home and every time food is eaten. We wash hands and mouths after we eat. Food is eaten at the table unless it is a "safe" food which can be taken outside or eaten from a bowl in the living room (popcorn, potato chips, popcicles, fruit). Grazing is not allowed, especially of "unsafe" foods. A pencil bag with emergency drugs accompanies my son everywhere. Anyone who will be left in the care of my boys is trained on how to use an EpiPen. Our kids are taught to speak up - the boys with allergies ask if food is safe for them and their siblings watch out for them, too. Friends, family members, teachers, bus drivers, babysitters - everyone knows about the food allergies in our family and are told the household rules.
Now you may be thinking, "That's nice, lady, but what am I supposed to feed this kid?" Well, here's some standards for us. These foods should all be dairy, egg, nut, wheat, tomato, and soy free although recipes and packaging change so please read labels!
- Earth Balance Soy-Free "Butter" spread
- Live G Free cookies, bars, and pretzels from Aldi
- Oscar Meyer Turkey Selects hot dogs
- King Arthur Gluten Free Baking Mix
- Cornstarch (as a thickener for gravies, sauces, etc)
- Jello brand jello
- Lays Potato Chips
- Tostitos Tortilla Chips
- Tyson Gluten Free Chicken Nuggets
- Italian Ice
- Frozen veggies
- baked potatoes
- Fresh meats and fish
- Fresh veggies
- Fresh fruit
- Rice Krispies
- Kroger brand Chocolate Cheerios
- Corn Flakes
- Vanilla Rice Milk
- Mott's Fruit Snacks
- Regular Skittles
- Regular Starburts
Hopefully that's a helpful start for you! Most likely, you have a lot of those products in your home already. And remember, you can do this!
You have me in tears! I could have written this it's so true for me. I have a great support family, but as far as other allergy parents go I'm lacking that type of support group. I struggle the most with not being able to go to things with my daughter (peanuts, tree nuts, shellfish, fish, soy, eggs, wheat, corn, legumes allergies- basically worst catholic ever for Fridays in lent!). I feel like you and I could sit, chat and be best friends within 10min!ReplyDelete
It is so comforting to know others carry the same cross! I find it is so important to focus on what my boys can eat, other than what they can't...because it's just so darn depressing! But I also try to remind myself often how HEALTHY my boys diets are! Social functions are the hardest. I am always on edge, especially regarding my 2yr old. Sometimes it truly is better to just not go. Hard as that is... my husband and I are very social individuals! Their health is worth it.ReplyDelete
This is such a great post. I think, after three years since we first discovered all the food allergies, the hardest part for me is still the social aspect. It seems like every single social event at our parish revolves around food... and with Maggie's special needs she just doesn't understand why she can't have to cookies or the doughnuts or whatever it is they're serving (and she of course wants "those ones") and it turns into a disaster... so we don't go. But I think that's what makes me the saddest.ReplyDelete
Thank you for this post. It is such a hard thing. I'm only six months into my daughter's diagnosis. I think deep down I knew that she had these allergies from the time she was born but now that they are confirmed I feel way more responsible. Luckily, they are not life threatening and usually result in extreme rashes and bowel...trouble...but I feel like that makes it easier for people to shrug off. They are like she won't have anaphalatic so its fine. Bah! Anyways. Thank you for your hope and suggestions. I just made banana bread with chia eggs as an egg and wow, it turned out awful. You helped me gain some perspective!ReplyDelete
SO many people said that to us, too. I finally started saying, "Think about how horrible you feel right before you have diarrhea. Why aren't you trying to save my child from feeling like that every day? It's not healthy." They stopped saying it. lolDelete
Thanks for this post Bonny. My family also suffers with a list of allergies (missing tomatoes and eggs but worse on gluten as we cannot eat a few of the foods you mentioned.) My kids attend the parochial school in town and my heart just hurts for them when they come home with stories about food (missing out or being singled out). It has become an easy way to teach suffering. I hope that some day they can look on their allergies as a blessing, realizing that they were able to offer up so much to the Lord throughout their life. Say, I have finally figured out a way to make ice cream with rice milk (gelatine as the thickener) if you would like that recipe. Also, we also only recently discovered that an ice cream cone iron (similar to a waffle iron) makes not only cones but also wraps,ReplyDelete
Which foods did I list have gluten? You have me panicking!Delete
Or is it the steel cut oats? I know that bothers some with wheat allergies but not others. Fortunately my boys seem to do fine with it.
I know this is a late reply, but I just recently stumbled on your blog (and love it). Beware that Rice Krispies and Kelloggs Corn Flakes both have gluten, because they are flavored with malt, which is made with barley. My kid has celiac, so I learned very quickly I can't just look for "no wheat" on the labels.Delete
My neice is 7 and has Celiacs, she was diagnosed at 1. It was so hard for her family in the beginning, but once she got older (i'm thinking around age 5) she became so responsible about asking what was in the food she was offered. She has gotten sick once when somebody gave her a cookie with gluten in it, after she had asked them if it had gluten. Since then, she just doesn't partake if she's not sure. But, here's my point, my sister, her mom, always has food for her to eat no matter where they go. At family parties, though we all do our best to make sure there are enough gluten free dishes for her, my sister will bring a gluten free frozen pizza and dessert. That way her daughter rarely feels deprived. So I guess that is my "advice" - still go to the social events you want, just have food from home in your pocket (or not because that would get smushed). I hope your son finds continued success with his limited diet, what a cross! is there any chance he will outgrow any of them? My son had a nut allergy diagnosed at 1 that he outgrew at age 6.ReplyDelete
We are actually getting the boys retested this summer to see if the severity has gone down for some and if some of the lesser ones have gone away. I am hopeful.Delete
Regarding still going to social events: We tried that but dairy is a bit of a different beast than gluten. Butter, ice cream, yogurt, frosting, cheese, Dorito dust - it gets everywhere, dripping and splattering and the oil staying on fingers that are licked clean or wiped on a napkin but not washed. At a potluck last summer kids were grazing on Doritos and playing tag. James had an allergic reaction and that was when we decided never again. It's not about feeding our kids - we can do that just fine - it's about everyone else being on board with not feeding him, putting food up, and washing hands and tables.
God bless you Bonnie!Delete
Great post! I love when you said first sit down and cry. I think that is so important. My breaking point was my daughter reacting to an all natural bug spray that had a wheat or soy byproduct. There have been times in the grocery store when I found something that my daughter could eat and I wanted to laugh and cry and fist pump and high five anyone who would reciprocate. :) You do what you have to do do to keep your kids safe. We were at a baby shower a few weeks ago and I literally lunged at a well meaning lady offering my daughter popcorn. Yes, an overreaction, but she's not going to be benadryl-ing, nebulizing, and fearing during naptime that she could have an anaphylactic reaction. You're doing a great job and prayers that some of the allergies are gone with their next testing.ReplyDelete
Solidarity Bonnie. We *just* have dairy and gluten but that's enough to change everything. Parties are a logistical nightmare. Donuts after Mass will never happen. She has to deny herself so much. :(ReplyDelete
We have multiple allergies in our house too.ReplyDelete
My oldest (18) was diagnosed at 17 with an allergy to all mammal meat - alpha gal. We switched the whole family to chicken and fish. About 15 months later I was diagnosed with food allergies to milk,chocolate,wheat,corn,oats,peanut butter and CHICKEN. Throw in a vegetarian teenage girl. My oldest has life threatening allergies. I now cook proteins ahead of time and separately. If I don't one of us will have an allergic reaction. Some people do not take our allergies that seriously but we have to.