The Cost of False Positives

Guys. Food allergy testing is the worst. Mainly because the only way to know if you (or your kid) is actually allergic to something is to eat it and see what happens. I call this the "mess around and find out method". That's crazy. With how much we know about the human body and the immune system, the only way we can definitely say, "Hey, you are allergic to this" is to give it to you and make you have an allergic reaction. 

Because of what happens during a positive oral food challenge, skin tests are the usually the first stop for an allergist. I’ve talked about them before- the nurse scratches your skin with things you might be allergic to and they measure the response after waiting 20 minutes. Today, I'm going to talk (vent) about the main problem with skin tests- that they have a 50% false positive rate. This means that if you have a positive skin test (your skin is red, itchy, and swells up), 50% of the time you can eat that food no problem! Take that in for a second. One out of every two people who react to having their skin scratched with a food can eat that food without risk of an allergic reaction. And there’s research on how big the swelling is and how likely it is that it’s safe to eat, but really, there’s just no way to know unless you actually eat it.

What does this mean? Well, for us it means we have been avoiding garlic for TWO YEARS and we have no idea if my kid is actually allergic. Two years of making my own pasta sauce. Spice mixes. Pesto. Hummus. Ranch. Avoiding anything other than plain crackers. Only eating plain chips. Meticulously reading every ingredient on lunch meat. Only eating one brand of chicken nuggets. For TWO YEARS.

And okay, if she is allergic to garlic, then I’ve done a lot of work in the kitchen and I’ve kept her safe and I can feel good about that.

But if she’s not allergic to garlic (because really, who’s actually really, truly allergic allergic to garlic?) then I have been working as a personal chef for FREE for NO REASON for TWO YEARS.

One thing that I see a lot on food allergy twitter is to not use skin tests as a screening process for food allergies. With so many false positives, you shouldn’t just go looking for allergies when there’s no good reason to. At best all you are going to do is make families unnecessarily avoid foods and at worst you could miss the window to introduce that food and actually cause an allergy/intolerance/aversion.

At first, the decision to avoid garlic was pretty easy- after one round of unexplained anaphylaxis, I would do ANYTHING to avoid it happening again.

To be fair, our allergist didn’t just go looking for a rare garlic allergy, our kid had anaphylaxis and we didn’t know what to. At first we thought that our garlic sauce had somehow gotten into her food. She had negative skin tests to milk (what she was eating) and shellfish (what we were eating). So what else could it be? But when she had anaphylaxis again (again eating milk), it became clear that the garlic we were eating at nothing to do with her reaction. But the damage had been done- we are stuck with her skin reaction to garlic being so large, our allergist is afraid to let her try it. 

Now, the scales have tipped. What actually is her risk of anaphylaxis from garlic? 50%? And what I thought would be a slight inconvenience has become something that has completely changed my life. My weekly meal planning is consumed by avoiding food allergens.

Just let her try it! We’ll never know if she’s actually allergic! I don’t think our allergist really understands what a burden avoiding garlic is. It is IN EVERYTHING. It’s easy enough to leave out of things you make from scratch, but garlic is in EVERYTHING. EVERYTHING. And it may be all for nothing! I don't want want her to have anaphylaxis. I really don't. But, I really want her to be able to eat all the food she can safely have. 

Free Snacking: MadeGood Part 2

Remember the mini MadeGood cookies (with the hidden “vegetables” but really it’s just vegetable extracts) that we had last month? More importantly, do you remember their 15% sale they had for Allergy Awareness month? I’m a sucker for a sale and really liked those cookies, so here we are, back again. 

2Made2Good: Not Just Cookies This Time

Chocolate drizzled granola bars? Regular sized cookies? CHEDDAR CRACKERS SHAPED LIKE STARS?! It's all my allergen friendly dreams come true!

Crackers

First thing in the cart were crackers. They have “cheddar” flavored crackers and they are the first flavored cracker that I have found without dreaded garlic powder! Ordering them online, you can only get a 6 pack of them… but online shipping is no risk, no reward. Last year, my daughter’s only breakdown at the grocery store was when all she wanted was Goldfish (“I WANT THE FISHIES, MOMMY! THE FISHIES!”) and every kind of them had milk (even the pretzels! Why are they putting milk in the pretzel fish?). She was too young to understand why I couldn't get that type of cracker for her. I had to get out of the snack aisle immediately and she was not allowed back to the grocery store until she was older.

These star crackers, though? Safe! Fun! Kind of taste like goldfish! I’m assuming the cheddar flavor is from nutritional yeast, though it is not specifically listed on the ingredient list. I think I like them more than my kid, but whoever eats them, I’m glad we have 6 bags of them.

Granola Bars

I (obviously) opted for the chocolate drizzled granola bars (I mean... why would anyone not?). They are a little hard to eat for my youngest, but my five year old loves them. They taste almost exactly like a Chewy granola bar. Granola seems like an easy target to make without the top 9 allergens, since it’s mostly oats. They just have to stay away from nuts and use dairy free chocolate, and you've got yourself a tasty snack.

Cookies

Last time, we got the mini, soft baked cookies from the store; online they only had packs of their crunchy cookies. We got vanilla, chocolate chip, and double chocolate. Guys. I’m just gonna say it. They were the best allergen free cookies we tried (and we tried a lot). They had no weird after taste. The texture was just like any crunchy regular cookie. We tried the vanilla and it was delicious! Then the chocolate chip and it was great, too. Then the double chocolate... was also great! I don’t even know which one was the best. They are all great! The only problem has been my lack of self control. I could sit at the couch and eat an entire bag by myself. And, no amount of vegetable extract would make me feel okay after eating an entire bag of cookies.

 

MadeGood! It looks like you are the winner of Free Snacking. I didn't know it was a competition, but here's your blue ribbon and gold medal and all of my money.

Free Snacking: Cybele's Free to Eat

GI bug beaten (and hopefully never to return again), we are back into free snacking. Next up? Cybele’s Free to Eat. I had never heard of Cybele, but she is a big deal in the food allergy world. She has written 3 top allergen free cookbooks, she has been on Martha Stewart a number of times, AND she is also the food editor for Allergic Living Magazine. This is the magazine that crosses my twitter timeline and tells me all of these horrible stories including children dying from anaphylaxis when they weren’t given epinephrine quickly enough, passengers on airplanes bullying people with food allergies, and teenagers throwing peanuts at their “friend” with allergies. Needless to say, I have been banned from reading said publication. NONETHELESS, she has clearly made a name for herself. She became invested in food allergies when her kid was diagnosed with multiple severe food allergies (isn’t it always? There’s nothing like having your kid in danger that drives moms [don’t @ me, it’s always moms] to make complete career changes).

SO, ARE THESE COOKIES GOOD?

Yes! Though, they don’t exactly taste like cookies. They are soft, they have a good texture, but what they really taste like is cake batter. We got Red Velvet (which definitely tasted like cake batter) and Chocolate Chip Cookie (which tasted like a chocolate chip… cake batter). They are definitely cooked, which is why it’s weird to taste like uncooked cake. Maybe it's like cake batter ice cream had a baby with a cookie. You know how cake batter ice cream’s predominant flavor is sugar? That’s how these taste. Sugar may not be the first ingredient, but they do have 11-12 grams of sugar per serving, which is way more than the other brands (6-8 grams) we've tried. 

Ummm, I believe we were promised a red cookie? Don't put them down on the table, you'll have an unfortunate camouflage situation.

The red velvet was surprisingly better than the classic, which has led me to a new theory. Because everyone has an expectation of how chocolate chip cookies should taste, nothing that’s processed, out of box, and made without the top 9 allergens, will ever meet those expectations. BUT red velvet, on the other hand, is a bit of a mystery. Sure, I’ve had the occasional red velvet cupcake, but have I had a red velvet cookie? I don’t have a clear idea of what it should taste like. No childhood nostalgia. No sad let down. It was delicious! It tasted like cake! Not a sad imitation of the timeless standard.

They also sell pasta, which seems like a weird addition to cookies, but Cybele’s original job was a pasta maker. So that checks out. Doesn’t really fall into the Free Snacking category, though, so we didn’t taste test it. (Yet.)

My oldest has said multiple times that these are his favorite cookie, but I stand by the fact that whatever cookie is currently in his hand is his favorite of all time. More sugar definitely didn’t hurt their prospects though.

Happy 1 Year Blogiversary

Guys. I’ve been yelling writing into the void for a whole year! Every Friday!* 53 posts and still going. I still have things to complain about! I’m the Hanukkah oil of food allergy observations. Definitely not always helpful, but I’m still here, writing a blog, like it’s 2002. To celebrate, I’ve decided to dole out some awards to… myself.

One whole year!

THE MOST READ POST

Food allergy testing

I guess if you came here to learn about food allergies, that’s a good place to start. And the good news? I've done two more posts about food allergy testing now that my kid has grown from a baby to a one year old to a toddler. From false positives to false negatives (c'mon skin tests, you are the worst) to oral food challenges, we've been through some stuff. But no matter the age, one thing is always the same: if you go the allergist, you are going to be there FOREVER.

THE LEAST READ POST

Free Snacking: Granola butter

I don’t want to point any fingers… but it’s a terrible name for the product. But that doesn’t mean the post is bad! And the stuff itself is pretty good! Just like liquid teddy grah…. You know, all of their marketing could use a little work.

THE ONE I WISH EVERYONE WHO FEEDS MY KID WOULD READ

Food Allergies and Food Labels

Dear family, friends, and strangers I pay to take care of my kid,

You gotta learn to read a label! You just got to!

Love, every allergy parent in the world

THE MOST HELPFUL/LEAST READ POST

Some Mental Health Resources

You know, if I had access to more mental health resources, I probably wouldn’t have started this blog. I could have processed my feelings in a much more successful way: in therapy. I even started following The Food Allergy Counselor on Twitter and it's got so much good information.

THE FUNNIEST POST

Was It Worth It: Fancy Blender Edition

I love my fancy blender. But it is not an exaggeration to say that it is the loudest thing I have ever operated. Smoothies have never been so good. Ear drums will never be the same.

After reading the original post, my friend wanted to see the blender in person to see how big it is. So I had my daughter pose next to ours to give you some perspective.

THE POST WITH THE MOST COMMENTS

The Best (Top 9 Allergen Free) Toddler Snacks

Remember when I used to get comments? *sigh* Those were the days. So what if 3 out of the 4 comments on this bad boy were the same? A comment is a comment. This post also wins the award for best image. You guac to love a good pun!

THE POST THAT UNEQUIVACALLY PROVED I AM GENIUS

The Good, The Bad, The COVID

Remember my whole post about COVID and food allergies? Turns out Annals of Allergy, Asthma, & Immunology didn’t need to run a whole survey, they could have just asked me for my opinion! COVID did actually decrease some food allergy stress (since we were trapped at home and less risk of exposure to allergens) in most families. I will take this win and extrapolate that I am right about everything else, too. Year 2 here I come!

*or Saturday… or maybe Sunday… but definitely weekly