Simone has lived with a severe allergy to red food dye for most of her life. She is allergic to a few specific variants of red food dye out of the 200 variants available, one of them being E-316 (for more info, click here).
It all started when she had an anaphylactic reaction in a movie theater as a child. She had never had an allergic reaction before and was unsure which of the snacks she ate had caused the reaction. The reaction was so severe that her mother had to carry her out of the theater and seek medical attention. After this terrifying experience, Simone went through several months of intensive allergy testing to figure out what she was allergic to. That’s when she discovered that she is allergic to certain variants of red food dye.
Food dyes are color additives that dissolve in water and are in a variety of products including dairy products, drinks, baked goods, and more. In the United States, the FDA strictly studies and certifies man-made food dyes to approve them for usage in foods. These dyes are FDA-certified, while food dyes that come from natural sources like minerals or animals are exempt from this FDA-certification. Food dyes are in many of the products and foods we use on a daily basis but sometimes are not listed on the ingredients label. This is because the FDA allows color additives that are not FDA-certified to be omitted from the ingredients label, and even allows artificial colors to be listed in vague terms like "artificial colors" or "artificial flavors" (check out this link for more details). This loophole is terrifying for people like Simone, who have allergies to certain food dyes and need to know exactly which ones are in their food.
Over the years, she has had multiple allergic reactions after unknowingly consuming dyes that were in her food and were not listed on the label. These reactions usually begin with hives and a burning sensation in her hand. Some reactions are more severe than others and include stomach cramps, vomiting, blurred vision, tightness in her throat, and difficulty breathing.
Today, Simone is a transaction coordinator at a real estate agency in Nashville. I was able to catch up with her recently and wanted to share our conversation about what it’s like living with her allergy.
Jenna: Simone, thank you for chatting with me about what it’s like living with your allergy! I wanted to ask, what is the biggest challenge you’ve faced with having your allergy?
Simone: Of course! I’d say the biggest challenge is managing my mental health along with my food allergy. I have Generalized Anxiety Disorder which includes having panic attacks, and they present similar symptoms to an allergic reaction in the beginning. It can be very difficult to determine whether I am having a panic attack or if it is an allergic reaction, which makes determining whether I need to use my Epi-Pen even harder.
Jenna: Not to mention that one of the symptoms of anaphylaxis is a feeling of impending doom or anxiety, so I can imagine this just makes it even more confusing to determine whether it is your anxiety or an allergic reaction. That is so scary to deal with.
Simone: Exactly! Also, red dye is in so many foods that aren’t labeled which makes the determination of whether I’m having a reaction or not even more challenging! But one of my telltale signs that I’m having a reaction is a burning sensation in my hands, so that is a helpful indicator that I need to use my Epi-Pen.
Jenna: I’m glad you keep your Epi-Pens with you and are ready to use them in case it is a reaction and not a panic attack. You mentioned that red food dye is in many foods that aren’t labeled. What’s the most surprising food you’ve encountered that contains red food dye?
Simone: Ham deli meat contains red food dye —which is not only a surprise but pretty gross if you ask me! I recently had a reaction to this and was shocked to learn it contained food dye although it wasn’t on the ingredient label.
Jenna: That is so disturbing. Is there anything you want to see moving forward that would make managing your allergy easier?
Simone: As more and more brands make the switch to "natural alternatives.” I think it is incredibly important that companies are required to label the dyes they use beyond "red color" or "natural colors". As I mentioned, there are over 200 different types of red food dye and most people are only allergic to a few. Requiring them to physically list out their dyes would make selecting food at the grocery store so much easier! Also requiring brands to list food dye as a potential allergen would help remove barriers for those who cannot afford the expensive allergy testing required to determine which variants of dye they are allergic to.
💙 Thank you for reading, be sure to follow me on Instagram @tsoyum and DM me if you have an allergy spotlight you’d like me to share!