Without a doubt, living with an allergy to a Top 8 food is difficult. Conversely, managing an allergy that is not on the Top 8 list can add a whole new level of complicated. If you are new to the allergy world, you might even be wondering what a “Top 8 allergen” or “non-Top 8 allergen” even is. So let’s dive right into what those foods are and how they are categorized.
There are approximately 5.6 million children in the U.S. that have a food allergy (Source 2). According to John Hopkins Medicine, 90% of all food reactions are typically caused by the Top 8 (Source 3).
The Top 8 Are:
- Tree Nuts
- Wheat (gluten)
However, according to the FDA, there are more than 160 foods that cause allergies in the U.S. That is a lot more than the Top 8 allergens!
Here are some common food allergies that are NOT in the Top 8:
- Sesame (will be regulated by the FDA beginning January 2023)
- Sulphur Dioxide and Sulphates
- Poultry Meat
- Red Meat
Of course, there are many more possible food allergens that could be listed. This also means that roughly 560,000 children have an allergy to a non-Top 8 food.
I know that managing a non-Top 8 food allergy can make you feel alone, but I promise you, you are not!
There are some additional things to consider when managing a non-Top 8 food allergy, so let’s jump in!
A Few Challenges
Dealing with Food Labels
First, food labels and non-Top 8 allergens can be confusing. Here’s why.
In the United States, the Top 8 allergens are the ONLY foods currently regulated on labels by the FDA. The Food Allergen Labeling and Consumer Protection Act of 2004 made it a company’s responsibility to clearly state all ingredients used in the production of their product. They have to disclose whether or not that product contains a Top 8 major allergen (the FDA does not regulate the top 8 allergens in meat products, some egg products, or alcoholic beverages).
A company can choose to do this in one of two ways. They can label the allergen clearly (specifically identifying peanut, milk, eggs, etc.) in the ingredient list or they can have a “contains” section below the list of ingredients.
Although companies have to clearly state Top 8 ingredients on labels, they absolutely do not have to state non-Top 8 allergens clearly. In fact, in May 2020, companies were granted special temporary permission to substitute non-Top 8 food ingredients due to pandemic supply shortages. Not only that, but they are not required to update their labels either.
For example, a company could substitute canola oil for sunflower oil, and canola oil would still be on the label even though sunflower oil is what is actually in the product.
Yes this is real, and highlights the point that only Top 8 allergens are truly regulated.
Alternative Names on Labels
For foods that are not Top 8, companies also do not need to use layman’s terms or the common name of the food on a label. Additionally, an allergen could be in a product, but be hidden in the ingredients under “spices” or “natural flavoring.”
If you are trying to avoid celery, most companies probably will not disclose that celery seeds were used in their spice mix or natural flavoring. You would have to call the company directly to inquire about what exactly is in their “spices” or “natural flavoring” listed in the product’s ingredients.
Another example is sesame. When reading ingredient lists, it might be listed as “sim sim” or “sesamum indicum” on a product label instead of using its most common name of “sesame.” I know, it’s ridiculous.
Less Awareness of Non-Top 8 Allergens
Undoubtedly, one really great thing that has happened in the last two decades is the significant increase in food allergy awareness. The FDA Top 8 regulation has helped shine a spotlight on food allergies. Schools and child-care centers increasingly have protocols. And the general public has a basic (I’ll leave it at basic) awareness of food allergies.
I’ll be the first one to say we have a long way to go, but we are definitely moving in a direction that is increasing research, awareness, and understanding of food allergies. That is good for all of us!
Nevertheless, there are numerous differences that I have noticed in managing allergies to a Top 8 food and a non-Top 8 food. There are significantly more resources and products, as well as more general public awareness for my son’s peanut allergy than my daughter’s banana allergy.
Although I have had people question the reality of both of my children’s food allergies, (as if I’m making this up for fun I guess), I get more eyebrow raises when I say my daughter is allergic to banana than I do when I say my son is allergic to peanut.
Be ready for this, momma. There will be looks when you say your child is allergic to an uncommon food. Prepare yourself that some people will not take it as seriously.
There are many wonderful restaurants out there that try to help families with food allergies dine comfortably at their facilities. However, it is important to note that restaurant employees are not always equipped with in-depth knowledge about Top 8 allergens, let alone a lesser known allergen.
Try to plan ahead for any special occasions that involve dining out. I usually check online first to see if I can find any information about the allergen on the menu (there usually isn’t any). Call and ask to speak to the manager/owner. Tell them about your allergy concerns. Feel free to go as far as asking for their preparation policies in the kitchen when dealing with a food allergen.
If you don’t feel comfortable, don’t feel pressured to dine there. Another option is to pack and bring your child their own food.
I have a relative who is allergic to bell peppers. Over the years, he has informed restaurant staff of his allergy countless times and still was served bell peppers anyways. This happens with Top 8 allergens too, but I’ve seen firsthand how unequipped the staff was to check the ingredients for a non-Top 8 allergen like bell peppers.
Expect less awareness. Expect some skepticism.
I am here to affirm to you that you are not crazy. You are not overreacting. These allergies are real and there are literally thousands of other families managing allergies to foods that are not on the Top 8 list.
You are not alone!
Furthermore, another challenge with the food label regulations is that companies are NOT required to tell you if the product was produced on equipment or in a facility that also processes any of those allergens (Top 8 or non-Top 8).
They are ONLY required to tell you if at Top 8 allergen is an actual ingredient in the product.
For some kiddos, this creates a problem called “cross-contact.” You’ll likely hear this referred to as “cross-contamination” by other food allergy parents. Here is a link to a great explanation from Allergy Amulet of the difference between cross-contamination and cross-contact.
You can also check back soon for our upcoming post, What in the World is Cross-Contact?
Cross-contact in manufacturing is when residual protein from an allergen that was produced on equipment gets into the next product (or products) that are run on that same equipment.
Unfortunately, some allergen proteins are so potent, like the nut proteins, or some kiddos are so sensitive to their allergens, that even the smallest amount of residual protein can trigger an allergic reaction.
How Concerned Should You be About Cross-Contact?
When you meet with your child’s allergist to review their allergens and IgE numbers, ask them clearly if cross-contact with potentially shared lines is an issue for your child. There are some families that don’t have to worry about factory cross-contact or they might be comfortable still using the allergen at home with their cookware.
Some families have so many allergies that they have no choice but to keep the allergen at home for other family member’s needs. That is completely okay!
Different food allergy families have different needs.
Lauren and I are concerned about shared lines and do not keep our children’s allergens in our homes (minus eggs), but that might not be the case for your child and that is great!
Again, please note, companies are NOT legally required to disclose cross-contact information on the label.
If your child has an allergy to a food that is not on the FDA’s Top 8 list, then you have a few more hurdles to jump through to find clear and concise information on a particular product.
Some Practical Steps:
1. Get A List of Alternative Names For the Allergen
Ask your allergist for a list of all possible alternative names for your child’s allergen. You can also usually find that list by Googling it. You will need that list because companies are not obligated to use the food’s common name.
Printing off a list of these alternative names or storing a note in your phone will come in handy when you are checking food labels.
2. Don’t Be Shy About Calling Customer Service
At this time, companies can sneak a non-Top 8 allergen past you by using the terms “natural flavorings” or “spices.” Don’t hesitate to call and ask the company directly if the allergen is in the product.
Phone numbers are usually listed on the back of a product. Moreover, there is usually a website which should have an email for you to contact.
If cross-contact is a concern for your family, you can call the product’s customer service line to request information about whether your child’s specific allergen is found in the production facility or on shared lines.
When you are in the beginning stages of building your base of safe products, it can also be useful to set aside some dedicated time to go through your pantry and fridge.
Consequently, try to recruit friends and family to come over and watch your little ones so that you can make phone calls and organize food.
A Note About Calling:
Prepare yourself for the fact that this process might take weeks. Most customer service representatives can tell you a canned reply on what their company’s allergen protocol is, but many will not know if a non-Top 8 allergen is actually in the facility or processed on the lines.
Be ready with the name of the product and the series of numbers beneath the bar code scan. You might even need to provide the expiration date and the codes listed next to the date.
They will collect that information from you and tell you that they need to resource your question out to staff that actually work in the facility in which it was processed.
Lastly, it could take over a week to hear a reply. So just a heads up, you may not get to feed your child that specific product immediately.
3. Find Your Staples First
When beginning to call companies, it might save you time if you first reach out to companies of types of foods that you would want to be eating more regularly (like finding a safe bread before a safe hot sauce).
Other staples you might need to check first would be:
- milk/cheese/yogurt products
- common sauces
- salad dressings
- everyday spices
4. Go For Fresh Foods When You Can
You know you have to feed your child 3 meals a day as well as snacks. But before you know it, those meal times can suddenly turn into stressful hurdles for you. If feeding your child is causing you a ton of anxiety as you are waiting to hear back from companies, it might be easiest for you to gain peace in the situation by leaning on less processed food for a bit. Namely, you might want to stock up on fresh fruits and vegetables instead of canned/jarred fruits and veggies.
You could also make a few dinners from scratch and freeze them to save you time during the week instead of buying boxed/frozen meals.
5. A Few Sneaky Foods
Here’s a few more places where your child’s allergen can show up unexpectedly. This is not an exhaustive list, but it is intended to give you a heads up so you’re not caught off guard.
- Cooking Sprays
- Food Coloring/Dyes
- Flavoring Extracts
- Seasoning Packets
- Drink Mixes
- Baking Mixes
6. Don’t Forget About Non-Food Products
Allergens can show up in the weirdest of places. For your specific allergen, you could do a search to see what non-food products are made with it and see if anything comes up. For instance, I searched “Non-food products made with sesame” and an article listing non-food products popped up.
To get you started, here is a list of non-food products that we have found our children’s allergens in:
- Pet Food
- Body Wash
- Hair Products
- Cuticle Oils
- Potting Soil
- Stuffed Animal Filling
- Pest Control Products
A Couple Helpful Resources
1. Allergen Inside
Reading labels and calling companies is straight up draining. For this reason, I think a beneficial resource is the website and app Allergen Inside. It has a barcode to help identify alternative names for food allergens. Yes, this includes non-Top 8 allergens!
Download the free version (you can upgrade if you’d like) and go into your account settings. Click on “My Allergens” and choose yours. The cherry on top….you can add an allergen if you don’t see it listed!!! *Cue angelic music*
Then, go to the Scanner Settings and turn on the barcode reader. Go to “search” and click on the top right eyeball icon. It will bring up a barcode scanner for you to scan a product!
It is seriously so helpful in identifying those sneaky alternate names for specific allergens!
A Note About Using Allergen Inside:
Nothing is fool-proof, Momma. Please keep in mind that this app is still developing its database. You won’t find information on every product you scan, especially uncommon goods. Printing off your list of alternate food names for your kiddos allergen and keeping it handy (ie. wallet, pantry, fridge, phone) will still be your best line of defense when technology fails you.
Furthermore, this app also cannot tell you if that product had cross-contact with your child’s specific allergen, so based on your child’s needs, phone calls/emails to companies might still be necessary.
But hopefully it’ll help you identify issues much faster than just scanning back and forth between your list of names and the ingredients.
2. Snack Safely
For you families managing sesame and/or mustard allergies, this resource is for you! Check out Snack Safely. Snack Safely vets the manufacturing process for a variety of products. The snack guides let you know about the manufacturing process (shared lines, dedicated facility, etc) so that you can make the best decision for your family’s needs.
You can make your own snack guide depending on your child’s specific allergen. Click HERE to make a custom snack guide.
This is An Added Challenge, But You Can Do This
As always, Lauren and I know all too well the challenges of managing food allergies. We hope this information helps you and makes your life a bit easier.
Also, if you know of a resource that might help a family navigate a non-Top 8 allergen, please hit us up. We are all in this together!
Katie & Lauren