Meghan Hillard: Going Gluten-Free with Lyme Disease

While working weekends at a café in Brooklyn to supplement my freelance job in the city, I noticed I couldn’t sit down on a milk crate to write on our sidewalk chalkboard. I tried everything I could, but my legs would not lower me to the ground. Lifting my long dress, I noticed my knees were swollen beyond recognition. With no memory of recent injury, I took it as a fluke.

My fluke spiraled into a year-plus nightmare. Pain and swelling took over the entire lower half of my body and my legs were hot. I needed assistance getting in and out of bed. I couldn’t descend stairs, so I couldn’t take the subway. I was once a healthy 26-year-old woman who now needed city buses to lower their release valves so I could board.

I went to emergency rooms and urgent cares. I saw specialists on Park Avenue and a shaman in Chinatown. My test results came back perpetually inconclusive. The overwhelming fatigue caused me to take a leave of absence from my café job and do my freelance work from my bed. I had to bandage ice-packs around my legs to sleep. I remember calling my parents on the West Coast in the middle of a hot August night. “Mom,” I said when she frantically answered the phone. “I think I’m dying.”

It wasn’t until an orthopedic doctor mentioned seeing a rheumatologist – a specialist in autoimmune diseases – that I began down the road toward progress. At my appointment, she tapped my legs of fluids and conducted multiple panels. Although I had no bullseye rash or remnants of tick activity, the tests were overwhelmingly positive: I had Lyme Disease.

After months of treatments – antibiotics, more leg taps, pain management shots, physical therapy, and maintenance care – I was told I would test forever positive for Lyme. The residual side effects were debilitating. The medication made me sicker. I lived the next 18 months tired, sore, and defeated.

It wasn’t until late 2013 while doing some research and talking to a few doctors with the CDC that I realized I couldn’t just wait to feel better. Sitting around and existing had consumed my life for almost two years. In order to feel like myself again, I needed to take action.

In January 2014, I went completely gluten-free. Lyme patients often suffer from gastrointestinal symptoms due to toxins emitted from the disease. Since gluten is difficult to digest, it often causes inflammation and extreme fatigue within the body – two main symptoms of Lyme that were taking over my life. Removing both gluten and casein-containing products from my diet has limited unnecessary immune activity and noticeably reduced my inflammation. The shining benefit has been the improvement in my energy. It’s staggering.

I can now say that although I am still in the infancy stages of this lifestyle, going gluten-free has changed my life. While gluten-free may not be the cure-all for chronic Lyme, it’s leading me back onto the road to being that young woman who is able to savor life, which I’m now actively working on making better.