I had my first unidentified attack when I was 15 years old, which included a severe complication of muscle weakness, insomnia, gastrointestinal discomfort, bewilderment, and worry. These symptoms weren’t very ominous on their own, but taken together, they were quite alarming.
By the time I was 20 years old, these problems persisted and I was desperate to feel better. I saw more than 20 doctors in five states on my travels throughout the nation. Each blood test and lab they performed returned normal results. In order to test for food sensitivities, I was even referred to allergists twice. Once more, “normal.”
I also had many meetings with nutritionists and dietitians throughout this time. I gained a lot of knowledge about supplements and proper eating, but none of it helped my stomach ache.
Once received the diagnosis of toxic stress. A different medical professional suggested I see a therapist after telling me it was “all in my brain.” I started experimenting on my own with different methods of stress management after getting tired of being dismissed as a psycho or drug user.
One strategy I tried to use to advance was to experiment with various diets. I tried them all, including paleo, the South Beach Diet, giving up refined sugar, avoiding grains, dairy, and wheat, being vegetarian or pescatarian, and even briefly going completely vegan. I used essential oils and took magnesium pills. And let’s not even talk about cleanses! I’ve lost track of the cayenne, ayurvedic, green, and candida. Although I couldn’t find any pain relief, the possibility that I might be doing more harm than good didn’t even occur to me.
I made the decision to try the ketogenic diet in January 2016 for a variety of reasons. I wanted to increase my running efficiency and burn fat instead of sugar while doing it. Additionally, I hoped that it would alleviate my incapacitating abdominal pain and constipation. Additionally, cutting out grains, dairy, and sugar is something that healthy people do, right?
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Wrong. I had no idea that about six months after beginning this diet, my colon would completely shut down and I would spend a total of 27 days in the hospital over the course of five months.
Finally, the staff at St. Mary’s Hospital in Rochester, Minnesota, examined me and administered a series of tests to me, one of which was a porphyria test. That test was the last one I had over the years that had an abnormal result.
I was given the diagnosis of acute intermittent porphyria (AIP), a genetic disease that affects fewer than 3,000 people in the United States. I discovered that I can live a relatively normal life in between attacks. Symptoms typically come in waves and last for days or weeks.
However, it turns out that carbs can actually help manage symptoms, which explains why going on a ketogenic diet caused so many issues. In fact, my doctor advised me to eat potato chips if I started to experience symptoms. My liver produces heme with the aid of carbohydrates; heme levels can cause symptoms when low. I’m still trying to come to terms with the fact that a food group I long ago demonised is actually essential to my ability to feel better. However, the truth is that it has made me feel better.
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Instead of avoiding specific foods, I now limit alcohol, put sleep first, avoid situations that cause stress, and keep an eye on my hormones. If my body is feeling good, I can run a little bit more than 10 miles each week without risk.
Additionally, I’ve discovered a drug that works. Due to the rarity of AIP, most of my treatment is experimental. There are only a few porphyria specialists in the United States, and I visit a haematologist in Salt Lake City once a year. He suggests that I go to a nearby hospital once a week with my John Stoddard Cancer Center team to get infusions of the one AIP drug that is currently available. Though unpleasant, the process is beneficial.
I wish more women understood that a non-answer does not have to be their end. Become your own best advocate and seek clarification when necessary.
My new dietary philosophy is “everything in moderation.” I make an effort to vary my diet while remaining mindful of how I feel.
One of the most unexpected lessons I took away from my journey was that the most popular diet trends aren’t always the healthiest. Oh, and sandwiches make life much more enjoyable.