I picked my daughter up from school yesterday and she was wearing a different shirt. A shirt I'd never seen before. I asked what had happened and she told me there had been a mayonnaise explosion in the lunch room that had hit her in the back, but, as she said: "It's OK because it only had vegetable oil in it."
"Vegetable oil is soybean oil," I said.
She burst into tears. "I knew it! I knew I was allergic to it but no one would believe me!" And the story came out. How the lunch aide hadn't believed her but had read the ingredients anyway. And hadn't seen any soy in the ingredient list, so had decided the mayonnaise was fine.
Part of the unique challenge of soy allergies is that, despite soy being a big 8 allergen, the food allergy labeling law (FALCPA) has a special exception for soybean oil and soy lecithin. Manufacturers do not have to provide an allergen warning or even list these ingredients in "plain English" as required for other common allergens.
Some studies have found that most people with soy allergies can tolerate the small amounts of soy protein that remain in processed soy oil. But not everyone can. Similar studies have found that refined peanut oil is safe for people with peanut allergies, but there is no exception in the labeling law for certain peanut ingredients. I can only speculate on the politics behind that ruling.
Our story ends well. My daughter ended up with a contact reaction, but nothing more serious. I was proud that our role play practice paid off and she insisted on seeing the school nurse, even after being told the food was OK for her. The Emergency Action Plan we wrote wasn't implemented exactly how it should have been (I didn't get a phone call) but she did get a clean shirt and a check up. And everyone involved learned something from the incident.
What haunts me though is that all the adults involved in this situation had the best of intentions and yet were unable to keep my daughter safe because of this legal loophole.
FALCPA is not enough. It has too many exceptions and only covers 8 of the thousands of foods that are potential allergens.
We have the right as consumers to know what we are putting into (or on) our bodies. Every ingredient of every food needs to be disclosed, and it needs to be listed for what it is. No more "modified food starch" or "natural flavorings." No "vegetable oil" with pictures of lettuce and tomatoes on the label. Tell us what is really in our food, and then we can decide if we really want to eat it.
Every ingredient of every food. A radical idea? Or one whose time has come?
So glad your daughter is okay and how well she handled the situation. You must be very proud of her. I also have a life threatening so allergy and I completely agree with everything in your article. I react to soybean oil and soy lecithin despite what the FDA says. I’ve written about it a few times on my website http://www.sprinklesandallergies.com Thank you for this important article, and sending good energies to you and your daughter!
Agreed!!! Is there anything we can do to fight for this!!! My son is allergic to mustard… It’s hidden in the word ” spices” ! So frustrating!!! What can we do?!
Is there anything we can do to get this into law?!
There is a change.org petition to the US Senate Health Committee (origin of current labeling law) titled Every Ingredient of Every Food. Sign it and share!
Signed the petition, and will definitely share!!!
I have Celiac and have to avoid all gluten, and I’m allergic to corn, sulfites, onion/garlic and more. It is so hard to avoid the foods and additives that make me sick, because they are not properly labeled. Many times, they are not labeled at all. I signed the petition, and passed the info on to a lot of other people.
Not as allergic to soy as your daughter but I have full sympathy since I AM that allergic to peanuts. I am less allergic to tree nuts, shellfish, wheat, lentils, garbanzos, peas, tapioca… and on and on. It is really hard. Things ARE getting better… I’m 44 and when I was your daughter’s age, a teacher thought smearing peanut butter on my hand would “teach you to stop being so silly about it!” — instead, it almost killed me! Like I said, times have changed.
Can they change for the better still? Absolutely, and we need to keep fighting for it. But remember to be reasonable as you can be with the helper people in your kids’ lives; they really do mean well and want to be on your side. Enlist them, don’t dismiss them, that’s my goal personally when I deal with my kids’ teachers and school administration.
We do need to fight for better food labeling. Ingredients lists are too vague, printed too small, and are allowed to mask ingredients, either in included foods (“soy sauce” — gluten-free, or not?), spices (there are thousands, including ground peanuts!), and natural flavors (which can be damn near anything).
I would like things to be labeled as possibly harmful if they are manufactured in an unsafe factory. My son has a life threatening allergy to cashews(not peanuts though) and things like ice cream are a real problem. I wrote Haagen Dazs and they said they do not HAVE to put that information on their labels. Guess what ice cream we won’t be eating! Strangely enough when my son was in
1st Grade the teacher gave the students peanut butter and then panicked, thinking he was allergic to it. He was not but was so shook up he just froze and let them do whatever they wanted, i.e., spiiting it out, rinsing his mouth out, going to the nurse, etc. What a nightmare.
Another great article, Jeanette, that I look forward to sharing with my Facebook fans. You’re an amazing source of information and insight!
I think a clarification is in order here: The FDA exempts ALL highly refined oils from the FALCPA labeling laws, not just soy. Nut oils (the other top allergens that oils are typically made from) are also exempt, when highly refined. On the other hand soy lecithin must be labeled as soy, despite the fact that it is derived from highly refined soybean oil.
Nevertheless, I am glad your daughter is okay.
I re-read the law itself and the commentary on it on the FDA web site. You are correct that highly refined peanut oil is also exempted from FALCPA. The main highly refined oil that is used in food manufacturing are soy and corn, however, since they are cheap.
However, the FDA does exempt from regulation the use of soy lecithin as a release agent:
http://www.fda.gov/Food/GuidanceComplianceRegulatoryInformation/GuidanceDocuments/FoodLabelingNutrition/ucm059065.htm
What gets me is “I knew I was allergic to it but no one would believe me!” I have felt that way so many times. To the point where I stopped believing myself, and allowed myself to get sicker and sicker. I think people don’t realize that if you don’t take care of a food allergy immediately, not only can it escalate, but you can be sick for a few days as the allergen keeps rearing its ugly head. Benedryl is designed to target an allergic reaction as it’s happening, not hours after you’ve finally convinced everyone around that you need to take the medicine…or worse, after you’ve finally convinced yourself.
As for food labeling – it’s preposterous how fuzzy the details are. Does the food contain all tree nuts? Why isn’t corn listed? What’s in the gums or chemicals that we add to our foods? And “spices” are in the “spices?” And oils — when it says safflower/sunflower/vegetable/canola oil, I get so confused. Which is it? How many unnecessary foods are we avoiding because we err on the side of caution and settle for poor labeling?
So true. We are avoiding foods we could add to our diets but it’s just not clear enough to be safe.