Food Allergy Managment: Non Top 8 Allergens

by Amanda Painter, South Chapter Coordinator 

Managing food allergies is challenging.  Those of you doing this on a daily basis know that’s probably an understatement.  But when you are managing an uncommon allergy much more work is added to avoid the allergen successfully.  Everyone has heard of a peanut allergy.  Peanut allergies tend to hog the spotlight.  Move on to egg, shellfish or some of the other "common" allergies and most people still recognize that those are allergens.  Yet, say that you're allergic to mustard and they will likely have a very perplexed look on their face.
 
Currently in the U.S., the FDA states that milk, egg, soy, wheat, peanut, tree nut, fish and shellfish are the food allergies reported most frequently.  These are also commonly referred to as the “Top 8.”  According to the FDA, these 8 foods account for 90% of reactions in the U.S.  (To my knowledge, that statistic is 12-15 years old.  I'm very curious if the numbers today are the same.)
 
While the above may cover the majority, it does not cover all food allergies.  More than 170 foods are known to cause allergic reactions.  That's over 160 not considered "common."  These offending foods can be seeds (sesame, flax, sunflower, etc.), spices (i.e. garlic, cinnamon, cumin), meat, gelatin, corn, even fruits and vegetables.
 
Those managing food allergies know that there are people who still refuse to believe that eating the wrong food could cause a fatality.  When said food allergy is something more unusual, the amount of skepticism grows. I've heard people (when trying to understand our situation) attempt to rank my child's allergies in order of importance (or severity), typically starting with the assumption that the more common allergens are more severe. There is a presumption that we work harder to avoid a PB&J than we would a corn dog covered in mustard. The reality is that both pose a hazard for my child.  It's vital to understand that any food has the potential to cause life-threatening anaphylaxis… not only the dreaded peanut. 
 
Some allergens that seem uncommon in the U.S. are more widespread in other countries.  The most prevalent food allergies vary worldwide. Some countries consider more allergens a priority than the U.S. does, such as Canada’s recognition of mustard and sesame as common allergens.  The European Union has a longer list that also includes celery, lupin, and others.

For those of us in the U.S., we can only count on the Top 8 to be labeled per the Food Allergen Labeling and Consumer Protection Act.  FALCPA states that ingredient statements must list any Top 8 allergens by their common name.  Have you seen an ingredient label that states "natural flavors” or “spices?”  If you have a non-Top 8 allergy, it could be hiding there. Companies need to be contacted to ensure your allergen isn't an ingredient and determine if there is a risk of cross contact.
It is important to note that even when avoiding a Top 8 allergen, cross contact is not required to be listed on the ingredient label.  You need to know the company's policy on allergen control, cleaning, testing and labeling. Visit our website for more information on understanding the limitations of food labels.

A tip for when you contact a manufacturer to ask about natural flavors or spices: some companies will be reluctant to give you the entire list of what this contains.  Instead, ask specifically, "Does this contain garlic or onion?"  You will likely receive a clearer answer with this approach.  Do know that some companies will still refuse to give you this information stating that the recipe is proprietary information? (In my opinion, any company that has a policy of this is not worth my time.)
 
It’s vital to educate yourself on what foods are considered high-risk for your allergen. The average person does not think much about what goes into their food.  Unless someone has an interest in cooking and food or has worked in the food industry, they may not realize that most pickled foods contain mustard.  Most people associate cinnamon with dessert, but did you know that many dry rubs for meat often contain cinnamon? Corn can creep into many processed foods you would never imagine. Finding bread made in a facility without sesame seeds is rare.
 
Even once you become well-versed in the foods that typically contain your allergen, you can't let your guard down around foods that are usually safe.  Many cooks may use a "pinch of this" as a secret ingredient in a dish.  Always be sure you ask the right questions to confirm food is safe for you.
 
I hear from many people with uncommon allergies, asking for advice.  Sometimes I feel that they are looking for a magic solution to make it easier.  A way to simplify it.  Something that they have possibly been missing.  Unfortunately, I have no simple solution. The reality is, managing an uncommon allergy is complex.  It comes down to finding brands and products that you trust, asking a lot of questions and knowing what is in your food.  For my family, it means cooking most meals from scratch at home.
 
One piece of advice I have is to connect with others managing the same allergies.  For those that utilize Facebook, there are several “groups” for managing allergies (a list is below). Also, KFA’s online community has forums for some uncommon allergies, such as sesame, corn, mustard, garlic & onion.  While these groups won’t give you all the answers, these connections can support you.  You can share recipes and get food recommendations that may be safe for your allergen set (I do recommend that you always do your research and contact the manufacturer).  But knowing what brands other people use serves as an excellent starting point that will cut down on your time spent researching. 
 
What non-Top 8 allergen are you avoiding? What tips do you have for managing? 

Sesame: The number of people allergic to sesame is growing. There has been a push to add it to the list of top allergens in the U.S.  You can find more information here.  FARE recently covered the topic of sesame in a webinar that can be viewed here.

Here are some links that may be useful:
 http://www.foodallergy.org/allergens/other-allergens 
http://www.kidswithfoodallergies.org/page/natural-flavoring-can-contain-food-allergens.aspx
http://www.livecornfree.com
http://www.neocate.com/blog/food-allergies-around-the-world/
http://allergence.snacksafely.com/product/categories

Facebook Groups:
Mustard, cumin, flax, poppy, sunflower and other seed allergy.
Sesame Allergy Information and awareness
Corn Allergy & Intolerance
Garlic Allergy/Intolerance
Allium Allergy: Garlic, Onion & More
Onion Allergy/Intolerance