|By Abhijit Tembhekar from Mumbai, India - Nikon D80 Apple, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=7823406|
Guest post by Lise Broer, Owner of the Rare Food Anaphylaxis Facebook Group. Rare Food Allergy Anaphylaxis is a forum for people who get life threatening immune responses to allergens that are not among the eight protected under US law.
SnackSafely published an updated Safe Snack guide this week to accommodate consumer feedback. Wonderful was my first reaction. As the owner of the Rare Food Allergy Anaphylaxis Facebook group I had sent feedback to SnackSafely last year. The details of SnackSafely's updated guide are a disappointment: they chose to prioritize non-GMO and organic foods instead of a disclaimer about rare but potentially deadly allergic reactions to the foods in their guide.
The community I moderate includes people who are anaphylactic to potatoes, which is not a common condition but for someone who has it this is basically the same as an allergy to peanuts or shellfish. It means carrying an epinephrine auto-injector; accidental exposures can result in hospitalization. Very few people are this allergic to potatoes. So in addition to all the other challenges of living safely with the severest type of allergy a person with this diagnosis has to navigate widespread disbelief that their medical condition exists.
How does potato anaphylaxis relate to the SnackSafely guide, you ask? Potatoes are a common substitute for wheat. This is wonderful if you are allergic to wheat, not so good if you are allergic to potatoes.
Now you might be thinking how impractical it would be to devise a list of safe snacks that eliminated every ingredient known to medicine as a cause of anaphylaxis. This is a fair point. So instead of asking for major revisions I asked SnackSafely to publish a disclaimer about rare anaphylaxis in the fine print. Their guide had no such statement last year. It still has none.
The SnackSafely list gets distributed to schools and scouting troops--all of whom want to ensure the safety of the children in their care. Yet it is possible to read the Safe Snack Guide front to back and come away with the impression that an eight-year-old who says, "I can't eat apples. I'm allergic to apples," is fibbing.
I also happen to be anaphylactic to apples. Even at age forty-eight this makes for challenging conversation because many people have never heard that a deadly immune response to apples is possible. The parents of children who have this medical problem find it deeply frustrating because you can coach a child in what to say and the child can obey perfectly without being believed. Other adults mistake these kids for picky eaters and there is not even one sentence in the fine print within the Safe Snack Guide to help. Many of the foods in the guide feature apples. A publication that brands itself as safe it owes its audience better.
When you add together all the rare causes of anaphylaxis, this type of condition is not all that uncommon. Nearly ten percent of food anaphylaxis sufferers have a life threatening allergy to something that is not a "big 8" allergen. So although you might never meet someone who gets anaphylaxis to potatoes or apples, you may know a person who has an equally serious allergy to mustard or peppermint or tomatoes or bananas or something else.
SnackSafely has tried to acknowledge less common allergies by publishing an alternate eleven allergen guide, yet there remain many anaphylactic allergens that are not accommodated by food manufacturers or by SnackSafely. Instead they could incorporate a disclaimer that popular substitute foods may be deadly in rare cases. If a child insists she can't eat grapes, the child could be right. It would be worth double checking with the parents. Yet instead of this caution, SnackSafely revised its guide to cover GMOs.
Nobody ever stopped breathing because a food was GMO.
Food Allergy Buzz thanks Lise for her contribution and for sharing her insight.