Q&A: What It's Like to Live With a Corn Allergy

An interview with Amy Graves, founder of Hidden Consumers Consulting, about life with a severe food allergy

In addition to being Celiac Awareness Month, May is also Food Allergy Awareness Month. According to the Asthma and Allergy Foundation of America, about 20 million people have food allergies in the US (16 million adults and four million children).

In the US, there are nine foods that have to be labeled as allergens on packaged foods by the FDA. These are milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, soybeans, and sesame. These are among the most common food allergies.

Food allergies can cause digestive symptoms, hives, and swollen airaways—and in some cases, they can cause anaphalaxysis, a life-threatening reaction.

If you have a more uncommon food allergy, and the food you’re allergic to isn’t required to be labeled as an allergen, that can make grocery shopping, dining out, and generally living your life even more complicated to navigate.

I recently connected with Amy Graves, the founder of Hidden Consumers Consulting, who lives with a severe corn allergy (which is an unrecognized allergy and relatively rare).

Ahead, I chat with Amy about how she gets through life with a corn allergy and multiple chronic conditions, why she started her consulting company to help food and drink brands be more transparent about the ingredients in their products, and more.

Amy Graves has a corn allergy and is using her platform to help inspire food brands to be more transparent about the ingredients in their products.

Q: Tell me about your food allergy journey.

A: My allergy is unique. No one recognizes corn as an allergy, so nobody tests for it. I’ve probably been reacting to corn my entire life, but I hit a point where things got to be too much and my body started having more extreme reactions.

What lead to the diagnosis was a sinus infection that lasted almost three years. For another one of my conditions—Wartenberg Migratory Sensory Neuritis—we were trying to rule out MS. I had an MRI, where a lump was found in my sinus cavity.

I was directed to an ENT who said, “It’s not cancerous, but we defintiely need to go in and remove it.” It turns out my sinus cavity was packed with an infection—and the only time people have a sinus cavity packed with infection is when they’re allergic to food.

My doctor said I had to figure it out or I’d be back in his operating room because it wasn’t going to go away. He said I had to eliminate whatever was clogging my sinuses to make it better. I didn’t fully figure out it was corn and how sensitive I was to corn until 2016.

Q: How did you figure out you were allergic to corn?

A: I had already done allergy testing before sinus surgery. I determined I was already sensitive to gluten and soy, but there was clearly something more going on that just that. When you take out gluten in something and you eat a gluten-free product, you’re eating corn and rice.

I actually created my own journal, where I tracked on a daily basis what I ate, what time I ate, and what time I had reactions. From there, I was able to start whittling it down. I was the typical American—I ate the processsed foods. It’s what is in the grocery stores—and that had to be safe, right? No, no.

So my first step was getting rid of all that. I couldn’t narrow it down, but I did notice that high fructose corn syrup was one of my issues. I had gone down with a migraine and took three ibuprofen and slammed a Pepsi—which contains high fructose corn syrup—because that’s how I could get rid of something quickly. And it didn’t work.

I was down for three days with the worst migraine pain I ever had. I figured at that point, corn was something. That led me the Corn Allergy Girl, and then I found all of these other resources that said, “Okay, it’s corn.” And then I realized it was in everything I ate.

I then started buying products with only five ingredients. If one of those ingredients was natural flavors, I couldn’t eat it. If they’re not making this ingredient from corn, they’re making it from wheat.

Then I had to figure out my sensivity level. I had coffee beans from a raoster I liked, and I went in to get a to-go cup. I got sick immediately and broke out in a rash and hives from head to toe, not realizing I was super sensitive. I’m allergic to the wax on paper cups and plastics, and that’s how I realized I’m super sensitive.

I started reacting to organic vegetebles in the grocery store as well. They’re coated in a corn-based pesticides derivative.

Q: How did realizing you had a corn allergy affect your quality of life?

A: The impact was massive. I was slowly losing food throughought this whole process and couldn’t shop in a grocery store for anything safe to eat.

The day I realized I could not shop in a grocery store—it was was in the middle of winter, and I was in the midwest, in Minnesota. There were no farmers, no one growing fruit. It literally became a fight to survive.

We ended up moving to California in 2018 because I needed fresh food and I was starving. I was living on rice and beef from a rancher that was processed with a butcher that didn’t use corn-based products.

The beef was raised on more free range or hay. There was no corn feed or supplements added to their diet. Because I am so sensitive, I can’t eat an animal that’s eating corn.

It was hard. I was angry—and I didn’t realize how if you can’t eat, you can’t participate in any function. It’s still an issue today, but at least I know why.

Q: Was there anything else about your corn allergy that surprised you?

A: If you look back over my Facebook memories, there are a lot of WTF moments. I made a post about having to throw away my socks because the elastic in the socks was coated in cornstarch—and I would break out in hives whenever the elastic touched my skin.

I’m not actually able to be in a room where corn is being cooked. I haven’t been to a movie theater in over a decade because of the popcorn. If a friend wants to do a barbecue and make corn on the cob, I can’t go. It’s in the air.

I have a handful of chronic conditions, and I can’t medicate because of this. I have no options. Vitamins, supplements, and your prescription drugs are made from corn and multiple sources of it—it’s not just one thing. It’s a laundry list.

So it was that whole change of, “How do I manage my life with no medication? How do I buy socks?” There are so many things we depend on as consumers that are no longer available to me.

Q: How did this experience lead you to launching your business, Hidden Consumers Consulting?

A: In 2018, we moved to California and my goal was to get a job. It turns out California law makes me unhireable because I’m disabled. At that point, I was using crutches 100% of the time.

I don’t have full use of my lower body, which makes me a hiring risk because I can trip or damage the people around me—so I couldn’t get a job. So I started my own company in 2020. I focused on websites when I first launched, but in 2022, I realized I hated what I did.

I needed something that connected what I do well. I like some of the website work, and I still do that because I love creating websites that talk to people, that aren’t just about SEO-ing. It’s got to make a connection.

The Hidden Consumers concept came out of this need of understanding that as I shared my story, I would hear everybody else’s stories, from people with celiac disease to people with diabetes to people who had a heart attack and went completely plant-based.

I kept hearing these stories and realized there’s no one marketing to us. Just people with recognized allergies alone is a $19 billion market that’s untapped. If you factor in all of us who have other issues that aren’t recongized, how many billions of dollars are companies leaving on the table?

That’s where I’m taking my marketing experience and website experience—helping the food industry be more transparent in their ingredients.

Yes, you’re probably going to have to leave natural flavors on the package—but on your website, there’s no reason why you’re not detailing what’s in the natural flavors so that people can competently buy your product.

Q: What has the experience working with companies over the last couple of years been like? Have you seen any become more transparent about their ingredients?

A: I’ve seen a few companies change for the better. Natural and organic groups love me because I can help them get over that next barrier.

Because of my website expertise, I can take what they’re doing, improve their website, and take them to that next level by showing them what other quesitions they need to be asking of the people they work with.

Not natural-organics hate me. They want nothing to do with me. They don’t want people to know what’s in their products.

Q: I know you’re in the process of writing a book on this very topic. What can readers expect to take away from it?

A: The biggest takeaway for the readers is the journey. What I’ve discovered through a lot of talking to people is how many people don’t realize certain reactions they’re having are actually an allergic reaction.

Prior to realizing I had a corn allergy, I had eczema, I had IBS, I had chronic migraines. The minute I took that food out of my system, they all went away. So understanding that if you have to have a box of tissues at the kitchen table when you’re eating, you might be reacting to the food you’re eating.

But the other side of it is really digging in and explaining where the food industry is going wrong. So that when readers go grocery shopping, it’s easier for them to buy what they know is safe for them.

The back of my book will have hidden ingredients—I broke out hidden sugars, hidden salts, hidden corn in everyday foods as well as actual ingredients. I also talk through what I do for food and beverage companies as well.

Q: What grocery-shopping advice do you have for someone else with similar food allergies to you?

A: I think we’re all on the same page that if it says natural flavors, avoid. The biggest thing is to look into what hidden sugars are and how they’re labeled.

They’re not all labeled sugar. Don’t trust the package. I think if you’re well-versed in our world, you probably know better if it says sugar-free that it really isn’t.

But why? Do you know what ingredients to look for to say, “Oh yeah, they’re lying on this package?” I do. That’s going to be in the book. I’m going to give you all of that information.

Just know that if you have food allergies, you’re going to have to do a little bit of research before you go grocery shopping.

Q: In the US, gluten currently isn’t a major food allergen, which makes grocery shopping challenging for people with celiac disease. How would you like to see food labeling to change here?

A: I want us to embrace the same allergens as the EU does because they do break out gluten and really list out exactly what’s in a product. I’m not lobbying for corn to be recognized as an allergen—I think that would be the fastest way to plummet our economy.

Do we need to be more transparrent in where we’re using corn? Absolutely. Let the consumer make the decision for themsleves. My big thing that I’m lobbying for is transparency. That’s why I do what I do.

I believe so much that we need to be transparent. We don’t need to ban these products, in my opinion, but we do need to say, “This is what’s acutally in our products.” Then you can make that decision if you want to eat it.

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Image courtesy of Amy Graves