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| 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.
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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.
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Food Allergy Buzz thanks Lise for her contribution and for sharing her insight.
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