My Keto Diet Almost Killed Me
When I was 15, I had my first undiagnosable attack—a painful combo of muscle weakness, insomnia, abdominal discomfort, confusion. and anxiety. Individually, these symptoms wouldn’t have been all that scary, but in tandem, it was a lot.
These symptoms kept up and by the time I was 20, I was desperate to feel better. So, I traveled around the country, visiting more than 20 doctors across 5 states. Every blood test and lab they ran came back normal. I was even referred to allergists on two different occasions to test for food sensitivities. Again, "normal."
During these years, I also met with quite a few dietitians and nutritionists. I learned a lot about healthy choices and supplements, but none of them actually addressed my abdominal pain.
At one point, I was told that it was toxic stress. Another doctor referred me to a therapist because they said it was "all in my head." I got tired of being written off as a head case or drug seeker, so I started experimenting with managing stress in different ways, on my own.
Testing out different diets was one way I attempted to move forward. I went through it all: paleo, the South Beach Diet, no refined sugar, wheat-free, dairy-free, grain-free, vegetarian, pescatarian, low carb, slow carb, no carb, and there was even a brief stint of being a full-fledged vegan. I took magnesium supplements and slicked on essential oils. And don't get me started on the cleanses! Cayenne, Ayurvedic, green, candida—I've lost count. I didn’t find any pain relief, but it also didn't cross my mind that I could be doing much more harm than good.
In January 2016, I decided to try the keto diet for a few different reasons. I wanted to boost my performance as a runner and burn fat rather than sugar along the way. I was also hoping it would help my debilitating abdominal pain and constipation. Plus, cutting out sugar and dairy and grains is what healthy people do, right?
Wrong. I never could have guessed that about six months after starting this diet, my colon would completely shut down and I’d be hospitalized for 27 days over the course of 5 months.
My doctors were stumped at first. Eventually, the team at St. Mary's Hospital in Rochester, MN, examined me and gave me a battery of tests, including one for porphyria. Of the many tests I had been given over the years, that one finally came back abnormal.
They diagnosed me with acute intermittent porphyria (AIP), a genetic condition that affects fewer than 3,000 Americans. Symptoms tend to come in waves, typically for days or weeks, and I learned that I can live a mostly normal life between attacks.
But, it turns out that carbs can actually help keep symptoms at bay—which is why going on keto led to so many problems. My doctor actually told me to eat potato chips if I felt symptoms coming on. Carbs help my liver produce heme, something that, when low, triggers symptoms. I’m still working on accepting the fact that a food group I demonized for so long is actually a key component in helping me feel better. But the fact is, it has helped me feel better.
Now, instead of steering clear of certain foods, I avoid situations that stimulate stress, limit alcohol, prioritize sleep, and monitor my hormones. I can safely run a little more than 10 miles each week if my body is feeling cooperative.
I’ve also found a medication that helps. Since AIP is so rare, my treatment is largely experimental. There are a handful of porphyria experts in the U.S. and I travel to Salt Lake City once a year to see a hematologist. He advises my team at John Stoddard Cancer Center and I visit a local hospital once a week to receive infusions of the one AIP medication currently available. The treatment lasts around three hours. It’s not a fun process, but it helps.
I wish more women knew not to accept a non-answer as their fate. Become your own advocate and ask questions when you don't understand. Not every disease has an easy checklist that leads to a diagnosis.
“Everything in moderation” is now my food M.O. I strive for variety within my diet, while always tuning into the way I feel.
One of the most surprising things I learned in my journey: The hottest diet trends aren’t always the healthiest. Oh, and life is way more fun with sandwiches.
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