How to be an Allergy Ally

 

When I first envisioned this blog, my main goal was to complain about how much I hate food allergies. I guess, maybe, to give advice to other parents with kids with food allergies to make their lives easier. But mostly to complain, you know?  Because there is a lot of good information online on how to keep your kid safe from food allergies once they are diagnosed, but those websites are very informative but super impassive. It’s: here’s how to check a food label! Not: man, checking food labels gets old. It’s: here’s how to replace eggs in your muffins. Not: have fun eating your rubbery brick!

But, I think some people who are reading this don’t have kids with food allergies and are completely new to the world of dangerous foods being everywhere you look. Luckily, in addition to knowing some tricks to feeding a kid with food allergies, I also have some tricks on how to be a better community member to kids with food allergies. In the before times, I tried to accommodate other kids- when bringing in treats for my son’s birthday, I knew that one of his friends had an allergy to eggs, so I made scones to share with everybody. I knew not to send peanut butter and jelly sandwiches to school (because it’s a written rule for his preschool), but I honestly had no idea what other foods my kid ate that had common allergens. So here are some things you can do, even if you aren’t living with a kid with food allergies.

Be aware when you are eating the top 9 allergens in public

Any food can cause an allergic reaction, but these are the most likely to cause a severe one: peanuts, tree nuts, milk, eggs, soy, wheat, shellfish, fish, and sesame.

I think it’s good to know these top ones and just carry that awareness with you when you eat these things. You never know when somebody is around that is allergic. The biggest thing that drives me bonkers is kids eating snacks at a public place and then coming up to talk to my kid. A few weeks ago, we were at the park and there was another family- young toddler, little kid, and grandma. The young toddler, who was about my youngest’s age, came over and clearly wanted to talk and interact with my kid. The grandma started asking questions about how old my kids were and all I could think about was that the toddler was covered (and I mean COVERED) in cheese dust with what I can only assume is diary milk spilled all over their onesie. Hands and face looked like they had making out with Chester the Cheeto cheetah. Did I want to my kid to learn how to meet and talk to other people? Definitely. Did I physically pick her up and move her away from Chester’s BFF? I did. I mumbled something about “food allergies, sorry,” but I am not sure the grandma understood. After all, the kid was just eating goldfish and drinking milk! No peanuts in sight! In another life, I would have been confused, too.

This happened a few months ago, too, at the zoo. This time, the cute little kid was eating ice cream. It was hot. The ice cream was dripping. We were already in a conversation with the other mom when the liquid poison carrier waddled over. We explain about the food allergies and the other mom quickly snatched up her little one. But it was a conversation ender. We looked like crazy people for keeping our kid away from other kids and the other adult felt bad. Like they shouldn’t let their kid interact with anybody else.

Wash your hands AFTER eating

Generally, to have a food allergy reaction, the person has to actually consume the food. The only exception I know of is cooking shellfish. For peanuts, my allergist told me that to have a reaction to inhaling peanuts, everyone on the entire airplane would have to open their peanut pouches at the exact same time to release enough peanut dust. And that would only affect the person is they were extremely sensitive.

This means that you can safely eat foods with allergens near somebody with allergies- you just have to keep your food to yourself. The problem with food allergies and babies is how much babies like to put things in their mouths. So, after eating foods with allergens, to make sure you don’t accidentally leave a smear of peanut butter on a block that another kid chews on, you should wash everybody’s hands. With soap and water. Hand sanitizer doesn’t cut it here. The alcohol in hand sanitizer kills germs, but it doesn’t wash away anything off your hands. If you are somewhere without soap and water, then using a wipe and thoroughly wiping off your hands is the next best thing.

Now when we go to the park, if we bring a snack with us, I always wipe off my kids’ hands before setting them loose. Almost all of their snacks have wheat in them and who knows when a poor little guy with a wheat allergy is going to come along, either to say hi to my kids or to lick the hand rail.

Have separate serving utensils at get togethers

For birthday parties and family reunions I know my kid isn’t going to be able to eat the cake. Cakes are a minefield of top allergens. But maybe there’s something she can eat- like fresh fruit. The thing is, to keep those safe things safe, we need to make sure the cake spatula doesn’t come anywhere near the fruit and the fruit ladle doesn’t come anywhere near the yogurt dipping sauce. More utensils mean more dishes to clean but ultimately a much safer party.

Teach your kids about food allergies

Guys. A few years ago, a 13-year-old kid threw cheese at a kid with multiple food allergies, and because of complete ineptitude by his teacher and multiple adults in the “welfare office”, the kid died. Horrifying. It’s unclear what happened to the kid and adults involved, but you better believe I would pursue repercussions to the fullest extent of the law. Negligence. Manslaughter. I would want lives ruined. For a few weeks earlier in the summer, it seemed like every time I signed on to twitter, Kids With Food Allergies (@kfatweets) would have another horrifying story about bullying. Nearly 35% of kids with food allergies over the age of 5 are bullied about their food allergies! Their blog focuses on what the parents of kids with food allergies can do to prevent bullying- but what about the actual bullies?

When my oldest was little, we did talk about food allergies a little bit- we talked about how there are things that some kids in his class can’t eat. His best friend is allergic to sesame and we talked about how his best friend couldn’t eat hummus. Never did it cross my mind that I should also tell him PLEASE DON’T FLICK YOUR HUMMUS AT YOUR FRIEND, but maybe I should have? If the 13-year-old that threw the cheese had known about food allergies, would he have still thrown it? I hope not. I know that teenagers are mean, but they aren’t that mean, right?

Just like we’ve instituted a wash your hands after you eat rule, we could also institute a “never throw food because you don’t know who could be allergic to that food” rule. And a “just because your friend can’t eat a normal cookie doesn’t mean you can make fun of him” rule. Food allergies suck enough without adding on bullying.

 

So. Let’s make the world a food allergy friendlier place! Wash your hands! Keep your food to yourself! And don’t make fun of kids who can’t eat everything you can.

Food Allergies and Food Labels

 

Before food allergies, the only part of the food label that I looked at were the nutrition facts. And that was only if I was feeling particularly invested in how much sugar I was eating. These days, I glance right over the nutritional section, straight for the ingredient list. Getting used to reading through the gobitygook ingredients on processed food has been a real joy, only made easier by the fact that most of my kid’s allergies are part of the top 8* that have to labeled clearly in the US. (Not in the US?) According to the FDA, there are three ways the allergen can be clearly labeled: 

• Common or usual name of an ingredient is listed (ie “milk”)
• In parenthesis following the name of the ingredient (ie “whey (milk)”)
• Immediately after the list of ingredients in a contains statement (ie Contains: Milk)

Well, that’s fun. And super clear. Having three different ways to list allergens was definitely the best plan to avoid confusion... said no one ever. There’s a clear winner on the “easy and clear” to read scale and that’s having a contains statement. On my favorite packages the contains statement is even bold!

Oh la la! Look at that contains statement! So beautiful and clear.

The worst? When the ingredient list has no contains statement, is a whole page long, has many sets of parenthesis that have nothing to do with allergens, so you have to squint and read through every single word to make sure you aren’t missing anything. What a joy!

Just look at this nonsense! Sure, it states "wheat" and "sesame" in the ingredient list. But it's hidden in a list of things that could just as easily be a seed shopping list for your local garden store. Plus, why have organic before every ingredient? Really? I get it. It's organic. I don't care. 

This bread is so good. This label is NOT.

The really annoying thing? Ingredient lists can change at any time so every single time I’m at the grocery store, I glance at the ingredients before I toss it in the cart. It means we keep everything in the packages it came in because I also double check foods before passing them out to my daughter. It’s mostly just a lot of reading.

To further complicate the situation, there's an entire gray area of "may contain." Like this pasta that you are buying for your kid that is allergic to eggs "may contain: eggs." Great. So does it contain eggs? There's no regulation for "may contain" statements and some people assume it's just companies covering their booties. Our NP told us that the bigger the company the less you have to worry about cross contamination. If it's a small bakery- there's a good chance there could be peanuts and peanut dust in every single thing they make in their tiny back room. If it's a national conglomerate that only makes one kind of cereal in a giant warehouse, less likely for those peanuts to jump ship into your food. It seems like a big risk to take if there are safer alternatives. Online there is all kind of advice, but one thing is clear: milk is the most common top allergen to contaminate other ingredients, especially in chocolate. Which is why every singe chocolate bar I have ever seen has a special warning that that chocolate is made on the same line as other top allergens.

Womp. Womp. No chocolate bars for you, kiddo.

So, to recap, the only way to know what is in the food is to the look at the ingredient list on the box it came from. Simple, right? Get the box, read the ingredients. I try to remember to check all the boxes at the store. And then I try to remember to check them again when I open them to give them to my kid. It’s a lot of checking and I really appreciate when things are bolded.

Times this was a problem? When we went to visit the grandparents' house and grandma had removed all of the snacks and put them in clear containers. Looked great! Like a magazine! Not great? We had no idea what kind of Ritz they were. Normal kind? Butter flavored? Without that box, I’m not giving those crackers to my kid.

Another family member loves to google ingredients to see if they are safe for my kid to eat. I’ve tried to explain that google doesn’t know what ingredients are in the package of Oreos they have, only the package of Oreos knows that… but it’s taken some time to sink in. I think it’s extra hard to remember to check ingredients when you aren’t in a habit of it. When you only feed somebody with food allergies once a month, you don’t have that daily reminder. I guess that’s why FARE suggests having friends/family keep all the boxes of ingredients they use while cooking so that you can double check that what they made is safe. Should be an interesting Thanksgiving this year! Hi, yes, do you have the package of stock you used? Yep and every single can you opened? And every spice you used? Yes. And… corn meal? Flour? Did your turkey have anything in it other turkey? Are you sure you didn't add butter to the vegetables? On second thought, I think we’ll just pack her some food.

All in all, I don’t enjoy looking at ingredient lists. But it is really nice to be able to check the label and know what’s inside. Now, if only there was a way to know for sure what went into restaurant’s food!

Want more info on how to read a food label? FARE

*Soon to be Top 9 in the US! Welcome sesame! Biden signed a law that adds sesame to the required foods to be labeled starting: (checks notes) January 1, 2023?! Well, in a year and half I guess we will talk about the Top 9 allergens in the US.

Cookbook Review: Go Dairy Free

 

Pre-food allergies, almost all of my favorite recipes came from magazines. For years I have been collecting recipes from Cooking Light and Real Simple- making notes on the ones I liked and keeping them in a spiral notebook. But as the food allergens piled on, most of favorite recipes just didn’t quite work anymore. There are some replacements that are easy to make- a recipe calls for a couple of cloves of garlic? Ok. No problem. I’ll leave those out. Trying to make a frittata without eggs? Well, that’s going to take a miracle.

And, searching randomly online for vegan recipes- you just never know what you are going to get.  I haven’t had very much luck with recipes from random blogs from people with no official qualifications (Pot? Yes, hi, it’s me, Kettle.)

So, instead of sadly flipping through my favorite recipes that I can no longer have, or blindly trying recipes online, I went on the lookout for cookbooks that I could use. Cookbooks that presumably have had somebody other than the author test the recipes and they turned out okay. And cookbooks that have recipes that are already okay for my kid’s food allergies. Go Dairy Free by Alisa Fleming was one of the first ones (and one of the best ones!) I’ve gotten. It’s got hundreds of recipes from breakfast to sides to meals to desserts. Best of all, it’s not a healthy vegan book trying to sell you on a lifestyle where you don’t need cheese. It is perfectly aware that cheese IS delicious and unfortunately there are just times when you CAN’T PHYSICALLY eat it. Before the recipes it’s got chapters on just how to start living a dairy free life which I found very helpful. Some the advice?

• Get an ice cream maker. Yep, did that. Feel great about it.
• The longer you go without cheese, the better the alternatives taste. Seriously. That’s true. Also true for pretty much everything else- the longer I go without eating peanut butter, the better that sun butter tastes.
• Which kinds of restaurants to avoid (I see you Italian and all your cheesy, creamy, deliciousness) and things to do to try to make sure the restaurants you do go to are safe if you are allergic to milk

She's also got an entire website with good information if you are trying to ditch dairy.

Okay so are the recipes good?

No milk. No eggs. Still looks like a cake to me!

Yes! I have made all of my birthday cakes from this book for the past year. The first attempt stuck to the pan a lot and wasn’t the prettiest. One of the icing recipes never fluffed up but you know what? They’ve all been delicious. There are these avocado filled enchiladas that when eating them I never once thought “You know what this needs? Cheese.” Talk about magic. The wholesome pillowy pancakes my son eats at least 8 at a time and then has to lay down because he ate too much. Waffles? Yes. Cookies? Yes. Pasta? Yes. Pizza? Ehh…. The one recipe I have made from this book that my wife said maybe let’s not make this again was a pizza with a “cheese sauce” on it. It was weird. We still ate it though!

It's never good when you show somebody a photo of what you baked and they say ".... what is that?"

Is it good for people with food allergies?

Well, obviously it’s good for people who are allergic to dairy milk. But it also has a handy index with what allergens are in each recipe and it has easy swaps on most recipes if you are vegan or avoiding certain foods. A lot of the cheese alternatives use nuts so I can’t say if the cashew cheese wheel or the pine nut parma sprinkles are good… but the tofu ricotta made a delicious lasagna.

All in all, if you are forced to go dairy free, then this is the book for you.

Food Allergy Testing

 

Having a food allergy is pretty bad, but the testing process might actually be worse. If you think you’ve had an allergic reaction to a food, it’s not always easy to pinpoint what exactly was the cause. Starting solid foods with your kid can be a stressful process no matter what, but it’s exponentially more stressful when you don’t know what is going to be safe to eat. And because the only way to truly test for a food allergy is to eat the food and see if you have a reaction, there’s a lot of guess work in the diagnosis process. The oral food challenge is the gold standard in food allergy testing.

Oral Food Challenge

It sounds exactly like what it is. You give the person the food you think they are allergic to and see what happens. But because if the test is positive, you’ve purposely induced a severe allergic reaction, they’ve made up some standards to make it safer.

You only do it at the doctor’s office.

They start by giving you a very small amount of the allergen, then waiting for a reaction. If there’s no sign of a reaction, more food is given.

If there’s no reaction by the end of the challenge you aren’t allergic! Yay! But if there’s any sign of a reaction, the test is stopped and you are given medication and monitored at the office. It takes 2-4 hours (that’s right HOURS) so go ahead and mark out the rest of the day. And bring toys. And books. And a stroller. And you know what? Just be a crazy person and move right on in to that room and make yourself comfortable.

We’ve been through 2 oral challenges. One (soy) with no reaction- it was so fun! My kid now loves soy yogurt and soy milk and tofu and it opened up a lot of foods for her to eat. She got soy yogurt all over her face and had a huge smile the whole time. Would highly recommend.

The other one (baked egg in a muffin) was stopped early and she eventually needed epinephrine. Not fun.  Not only did she have a severe allergic reaction at the doctor’s office, afterwards she was 1) scared of all doctors and cried bloody murder even when just getting weighed and 2) refused to eat baked goods including her birthday cupcakes that I had lovingly made for her. Months later, she’ll eat a vegan muffin. She is still not sure about any medical office.

Skin Test

Because the risk of food challenges going not great (I mean really, inducing anaphylaxis just doesn’t seem like the best idea), doctors usually first try alternative testing that doesn’t give a definitive diagnosis but can give them more information. Usually, this means a skin prick test.

You go to the doctor, they scratch your skin with a little bit of the suspected food, wait 20 minutes, and see if you have a reaction. They are looking for a wheal to appear and will measure the raised bump portion and the surrounding red circle.

Good things? You get the test results immediately and it really doesn’t take that long. Ok, so trying to keep a baby happy for 20 minutes when you have to hold them a certain way so you don’t touch anywhere they’ve scratched the skin (her entire back) was an upper level parenting challenge. But it was one I excelled at, especially by the third time.

Also good? They are also extremely sensitive. This means that if you are allergic to the food, you will get a positive result. So, if you are going to the doctor for a skin prick test, and you don’t have a reaction (or a big enough reaction compared to the controls), >95% of the time you can eat that food without fear of allergies.

Unfortunately, they are not specific. About half of the time you get false positives, which means that if you get a positive result, you have a 50% chance of not actually being allergic. You could completely change you diet, avoid a certain food, and then it be all for nothing. That’s a big old bummer.

My kid has had 3 rounds of skin testing. The first round happened after her initial reaction to peanuts. It was a pretty mild reaction, but we got referred to the allergist and this was the first thing she did. They ended up testing a lot of the top 8 and other common allergens and she tested positive to both peanuts and eggs. She already had the reaction to peanuts when she ate them so that coupled with the skin test made it pretty clear that she’s actually allergic. Eggs, we had to avoid until she could safely try them in the office during a food challenge.

Then, she had a full blown anaphylaxic reaction and we didn’t know what she had reacted to. Round 2 of skin tests came back positive for garlic. At this point, I felt like going to see the allergist was the worst. Every time we went, we get another thing she’s allergic to that we have to avoid! I thought being allergic to peanuts was terrible. Then I realized how much stuff eggs were in. Now garlic?! Garlic is in every premade sauce, salsa, curry, spice mix, prepared food in the entire universe. She didn’t actually have any garlic on her plate, but the rest of the family was eating it. Maybe it somehow contaminated her plate? Now, keep in mind, there’s a 50% chance she’s not actually allergic to garlic. But that was just our best guess for the cause.

About 1 month later, she had another round of anaphylaxis, this time no garlic in sight. No peanuts in sight. No eggs in sight. It was the first time she was eating cheese. And you know what she was eating last anaphylaxis? Yogurt. It’s got to be milk, right? Even with the negative skin test? So round 3 of skin tests, here we go.

Milk. Still negative.

Our NP doesn’t believe it and repeats the test the same day. There’s a little bit of a wheal but nothing like the other positive skin tests.

Now I have lost all faith in these results. If she can have a false negative to milk and still have full blown anaphylaxis including trouble breathing and repetitive vomiting then how can we trust any of the other negative skin tests? That’s the one thing they are supposed to be good for! Not trusting all of the negative results meant that we did most of our new food trying during weekend lunch when we had two parents home and time for a 4 hour trip to the ED if the worst happened.

 

This 3 month period between her having her first reaction to peanut butter to feeling more confident of her full allergy list has been the worst part of having a kid with food allergies. Avoiding foods is hard work, but the first step is finding out WHICH foods to avoid. So, if you are going through this stage now, know that it does get better. You get used to looking at food labels. You get used to checking twenty times to make sure you have two non-expired epinephrine auto-injectors whenever you leave the house. And eventually, you find out what is safe (and what is not safe) for your kid to eat.

Making (the best) Vegan Yogurt

Guys. Months before my youngest was diagnosed with food allergies, I started making homemade yogurt. And when I say I started making yogurt, I don’t mean I made a batch here and there. I mean, my toddler and I were stuck at home during quarantine, and we were making and eating A GALLON of sweet, sweet cow yogurt each week. We would buy a gallon of milk from the store. Make a gallon of plain yogurt. Eat it at snack with chia and granola and raisins and chocolate chips and it was a magically peaceful time of day. When the youngest tried this delicious yogurt, she vomited everywhere, started gasping for air, and we spent the next four hours hanging out at the ED.

Could I still have a dairy yogurt for me to eat? Sure. Do I want to confuse my homemade yogurt with the kid’s safe yogurt and risk needing another epinephrine injection? Not even a little bit.

So, I set out find the best vegan yogurt recipe. I had a couple of qualifications to make it as close to full fat, plain Greek yogurt as possible.

1) Nutrition: the more fat and protein the better

For protein, I decided to make it mostly from soy milk. To add fat, I also add in a can of full fat coconut milk. You can taste the hint of coconut in the final product which makes it harder to use in some savory cooking applications. But, toddlers need their fat and without dairy you got to use what you can.

2) Thick: I mean I know it’s not going to be like strained Greek yogurt, but the closer we could get to “could be eaten with a spoon by a toddler” and further from “yogurt soup” the better

It seems like vegan yogurt is always a little thinner than the original thing. The trick to thickening dairy yogurt is to make sure it stays at that special 110^oF incubating temperature for as long as possible. That’s not enough for vegan yogurt, though. There are a lot of thickeners suggested online, here are a few I’ve tried:

• Agar agar- it was the easiest to add into the milk while heating, and it did thicken the yogurt…. but it made a very strange, lumpy texture. If you aren’t into molecular gastronomy and don’t want to try lumps of yogurt jelly, this probably isn’t for you.
• Arrowroot starch- created a yogurt soup situation
• Cornstarch- leads to the best end product, but every time I add it, I make a huge mess. It’s hard to get a full ¼ cup out, you have to stir it with a little bit of cold milk before stirring it into the big pot, and it’s got to be heated for 5-10 minutes to thicken. Then after the milk has cooled to incubating temperature, you have to skim off the top so the yogurt isn’t chunky. Yummy! It does make the best final product, but it’s so annoying.
• Powdered milk- it did thicken surprisingly well, but it tasted a little grainy. I liked adding more protein into the yogurt, but I don’t think it’s worth losing the creamy taste.

3) Plain: I like my yogurt the way I like my tea. Plain. Unsweetened. And by the vat.

Despite claiming I like it unsweetened, I do add some sugar to my recipe. The bacteria that transform the milk into yogurt eat sugar. In dairy milk, they eat the lactose. In unsweetened soy milk and coconut milk, there’s really not much sugar. I don’t want warm vegan milk- we got to give those bacteria something to eat!

 

I think it’s pretty good. My son and daughter like it. My wife is yet to try it. It’s at least something similar to yogurt that is safe for my daughter to eat. I’m not going to have a lot of recipes on this blog. But, here is one that I spent time specially curating.

Ingredients
2 quarts unsweetened soy milk
1 can full fat coconut milk
2 tb sugar
¼ cup cornstarch
Yogurt starter (1/4 cup yogurt or a package of dried yogurt starter)

Directions

1.      Heat soy milk, coconut milk, sugar, and cornstarch to 180 ^oF, stir occasionally.

2.      Cook at 180 ^oF for 5 minutes.

3.      Remove from heat. Let cool to 110 ^oF

4.      Mix in yogurt/yogurt starter (scoop out about 1 cup of warm milk and combine; then pour that back in bigger pot and stir)

5.      Incubate for at least 8 hours, maintaining as close to 110 ^oF as you can to keep the bacteria happy

a.      Some of the advice online for maintaining this temp: use the yogurt setting on an instant pot (the best). Buy yogurt makers. Put it in your oven with only the light on. Wrap up your crockpot bowl in towels.

b.      Before my instant pot, what worked best to maintain the temperature was filling up jars and wrapping them in towels in a cooler. If the cooler wasn’t packed full of warm milk, I would add a jar or two of hot water to keep the temperature up in the insulation.