I recently found myself (masked up) at Walmart in a tiny Iowa town. These days, I don’t frequent big-box stores, but I’m a huge fan of scoping out the newest innovations in packaged foods adorning their shelves. Holiday-themed candy is one of my favorite things to discover, and I was not disappointed at the orange-, black-, and purple-clad treats that awaited me. I strolled up and down the Halloween aisles looking at candy: fruit-flavored, chocolate, crunchy, chewy, and hard. I’m a chocolate lover myself, so I typically go for those Reese’s Peanut Butter Cups in festive, spooky shapes!
This Halloween, I’m filling up my jack-o’-lantern trick-or-treat bucket with chocolate because candy benefits my health condition.
Yes, I wrote that correctly. Sugar is good for my body.
Obligatory disclaimer: My diet is based on provider-prescribed guidelines for the prevention of acute hepatic porphyria (AHP) attacks. Consult with your physician and nutritionist prior to making significant dietary changes.
I have acute intermittent porphyria, a subtype of AHP. Hormones, medications, diet, and stress can trigger symptoms. People who live with this rare disease can best prevent attacks and flare-ups by monitoring stress and prescriptions closely, and also by ensuring their diets are high in carbohydrates. Cue the candy cannons!
From a young age, my diet choices may have led to my symptom development. In fact, there is evidence that carb restriction will provoke acute porphyria symptoms in otherwise asymptomatic, genetically predisposed individuals.
Carb restriction was the name of my game growing up. My tendencies towards anorexia began at age 11. My eating disorder, along with hormonal changes, led to the onset of my porphyria symptoms, specifically gastrointestinal distress: nausea, vomiting, and abdominal pain. When no doctor could find a diagnosis to explain my struggles, I blamed food.
Carbohydrates were already demonized in my mind, so it was easy enough to start experimenting with what I ate, hoping my symptoms were due to a gluten allergy or candida overgrowth. Looking back, this idea is both laughable and frustrating. It was clearly the product of a mentally ill mind, which was both addicted to the eating disorder and suffering psychiatric symptoms of uncontrolled, untreated AHP. The severity of my central nervous system symptoms, including nerve pain, vomiting, neuropathy, and paralytic ileus, surpassed the discomfort that would be caused by food intolerance.
Every cleanse, lifestyle change, and diet only worsened my symptoms. At one point, I was down to eating mostly beans, nuts, and vegetables. I was also in physiological crisis, starvation mode, and causing unspeakable damage to my central nervous system.
Recognizing something had to change, I admitted myself into eating disorder rehab to restore my body to a healthy weight. It was the summer of 2013 and I was 29 years old, in between my first and second year of graduate school. As I was forced to confront and rediscover the very foods I had written off as pain-inducing, such as breads, cereals, and tomato-based sauces, my body began to feel better. In fact, upon reestablishing a healthy weight, I enjoyed the longest respite from my symptoms in my adult life.
Three years later, after a seven-month-long series of attacks and hospitalizations, doctors discovered an inherited metabolic disorder was the culprit all along. Along with my AIP diagnosis, I received a surprising set of dietary guidelines. My specialists and nutritionist advised me to eat a diet high in carbohydrates to keep attacks at bay. That’s right, this prescribed diet is essentially the opposite of what I used to put into my body.
To this day, it is hard for me to eat a sandwich or a pizza slice due to a lifetime of fear around carbohydrate intake. But I do credit my AHP for helping me find a more balanced diet. And let’s be honest: These days, my plates are way more fun to eat!
After a lifetime of restriction, letting go has been freeing, and my body is relishing in the effects of grains, fruit smoothies, and baked potatoes! It is important to note that while I do indulge in dessert most days, I moderate my refined sugar intake.
This Halloween, I’m choosing to find joy in buckets of candy. This Halloween, I am challenging myself to shake off that deep-seated shame related to eating sugar. Besides, what tastes better than chocolate and peanut butter goodness squeezed into plump pumpkin and spooky bat shapes?
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.
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