Amanda Orlando — Everyday Allergen-Free founder and creator of the 'Free to Be Me' food allergy wellness retreat — has lived her entire life with life threatening food allergies to peanuts, nuts, dairy, and several non-Top 9 allergens.
In this guest post, Amanda reflects on all the uncertainties that surround life with food allergies making life a Gray Zone to navigate.
"...And it's just our normal. How weird is that?"
When you have an anaphylactic reaction, it can feel like a fail. But it’s not!
I’ve had many of them and I held on to guilt, shame, and distrust towards myself for the ones that I had as a teen and adult. These feelings got really heavy the longer I carried them and eventually they became a burden. Learning to forgive myself for mistakes and move on was a huge relief and a big leap forward with my life in general. It opened up a lot of mind space for other things.
I think one of the most shocking and difficult things to accept for those who are new to food allergy life is that there are few definite answers to anything. There is always so much murkiness it can feel like living in a perpetual Gray Zone. Nothing is certain other than 100% avoidance of all your allergens to avoid reactions.
Sometimes it boggles my mind when I think of how many things we don't know about life with food allergy simply because the data does not exist {yet!}
Will my kid grow out of this allergy?
“Who knows? Maybe he will. Maybe he won't.”
Will I grow out of this allergy?
“Who knows? Maybe you will. Maybe you won't.”
Will my kid now develop new allergies?
“Who knows? Maybe he will. Maybe he won't.”
Is this restaurant meal safe?
“We think so. We really tried our best. But we can't guarantee. And do you have your epi pen?”
If I sign up for a clinical trial will I be placebo, potentially wasting so much time and effort? Or, not?
“We can’t tell you. That’s just the way it is. Are you in? Are you out?”
How much would it take of each of my specific allergens to make me fully react?
“We have no way of knowing with precision.”
Wow, is this epi-pen window foggy? Or, not?
“Hard to tell. Maybe it is. Maybe it isn’t.”
Can you tell me if this product was made on shared lines with other products containing the NON-top 9 allergens I'm allergic to.
“Oh we don't know. And we don't have to know. Sorry!”
I have trusted products I buy again and again to stock my pantry and I’m quick to buy them whenever I see them at the store, even if I already have a supply. There’s always that little voice in my head saying,
“What if they stop making it? What if they change the ingredients? What if the company goes out of business? What if the store stops carrying it? I’d better get it while I can.”
A case in point, Enjoy Life Foods (owned by food industry behemoth Mondelēz) just closed one of its top-allergen free manufacturing facilities to narrow and refocus the Enjoy Life Foods allergen-free portfolio. Apparently competition is stiff in the allergen-free category and a product line haircut was necessary.
Managing top-allergens aside (and I have my share!) I am also severely allergic to some non-top 9 legumes, like peas and lentils. While prevalence research indicates that food allergies to peas and other legumes, beyond peanuts and soy, are not as common, in my experience these allergens are not commonly tested for by allergists. In fact, in the past, I've always had to bring the physical legumes to my allergist appointment so my allergist can do the skin prick test.
“I wonder if people are not being tested for it by their allergist? I wonder if they’re just managing it in their own lives and not communicating it to their doctors?”
Judging from the public outcry that happens any time a food allergy brand adds peas or other legumes to a product, this seems to be a concern for the food allergy community that might be more widespread than the data indicates.
As a breastfeeding new mom I struggled with intense, painful itching on my body (though thankfully never anaphylaxis) after I nursed or expressed milk. Initially I thought I had an infection, but my OB suggested it could be histamines triggered as part of an allergic response. It’s difficult to accurately diagnose because there’s not a lot of information about it — my OB had never seen it in real life —
and my allergist thought it wasn't even possible.
A question I asked myself was, “Could this become lactation anaphylaxis?”
But no one was able to tell me because there is so little data available.
When I posted about it on Instagram suddenly all these women came forward in my DM's and said "Hey, I actually had that too and all my doctors told me that there was no way this was happening to me, but this is what's happening to me.”
While the individual reactions have calmed down with antihistamines, I am still experiencing histamine reactions almost daily at a year and a half postpartum — all in all surprising and super unsettling with
no crystal clear medical validation for peace of mind.
So, if you have grown up with food allergies yourself, you are probably accustomed to not knowing definite answers to any of these things and more.
Remember to give yourself grace because so many aspects of our lives with atopic disease are uncertain. It’s life in the Gray Zone.
And it's just our normal. How weird is that?
What food allergy unknowns make you crazy?
How do you find peace of mind?
Join Amanda of @EverydayAllergenFree for the second annual ‘Free To Be Me’ food allergy wellness retreat in Toronto, Canada the weekend of May 31 to June 2, 2024. This retreat — "Live from Toronto!" — is designed for the food allergy community by an allergy adult who understands what it's like to grow up allergic and deal with the complex emotions, and often very specific situations, that arise from allergy life.
The 2024 retreat will explore the role of the media/social media in our lives as people with allergies, and the role of people with allergies in the media and on social media. How do we respond to representations of food allergies? How do they make us feel, and do they impact our level of anxiety? How do we share our own stories online? How can we make ourselves heard? How can we reach a broader audience and the general public? The questions go on and on.
About the Author: Amanda Orlando is the author and photographer of Everyone's Welcome, a food allergy aware and inclusive cookbook. She is the blogger behind everydayallergenfree.com, the creator & host of the ‘Free to Be Me’ food allergy wellness retreat, and she also does freelance food photography and recipe development. You can also find her on YouTube at Amanda Orlando. Amanda has lived with multiple anaphylactic food allergies since she was a baby. She lives in Toronto, Canada.
Image: Courtesy of Everyday Allergen-Free