Casey Cromwell was diagnosed at a young age with fibromyalgia. She thought she had learned to live with her disease and the regular pain and flareups that fibromyalgia causes. But then she was diagnosed with celiac disease a few years later, and Casey had to cope with another autoimmune condition. To Casey’s surprise, going gluten free gave her relief from her long list of fibromyalgia symptoms. Read about Casey’s unexpected path to wellness, the lessons she learned along the way, and who knows—maybe Casey’s story will inspire you to go gluten free and test the healing power of a new fibromyalgia diet.
I remember crying in my mom’s arms.
“I just want to sleep,” I sobbed. “I just want to stop hurting.”
I was 11 years old, and though I might not have known it at the time, it wasn’t normal to be in pain 24 hours a day, seven days a week. But, then again, it isn’t normal to be diagnosed with a chronic illness before your thirteenth birthday either.
My journey with fibromyalgia, a chronic illness characterized by widespread muscle pain, fatigue, sleep problems and other symptoms, began even earlier than that night. I was a loud baby, often crying nonstop unless my mom was holding me. Some doctors have told me it may not have been just colic or neediness; I may have been in pain even then.
My mom has fibromyalgia, so autoimmune diseases are nothing new to my family; however, when it’s a kid complaining of aches and pains, it’s easy to find alternate causes.
In soccer practice as a preteen, I jumped over a mat, caught my toe and slammed against the gym floor. I was shaken and crying, as normal, and my wrist was tender, but I didn’t think it was that bad. However, by the next day, I landed in the hospital: I had a fractured wrist and dislocated all the fingers and thumb of my right hand.
“She should be screaming in pain,” doctors told my mom. When my parents asked why I wasn’t, I shrugged. “It only hurts as much as my back on a bad day,” I explained.
One of the hardest parts about fibromyalgia is that unlike other diseases, there’s no blood test or objective method of diagnosis. It often begins with complaints of pain, fatigue or insomnia to your primary physician. If you’re lucky (or you have a very insistent mother), you’ll find a rheumatologist or functional medicine practitioner who can give you a correct diagnosis.
I remember the day I was told that I had fibromyalgia at a small doctor’s office far from home, one that featured a rare child rheumatologist. I did the tests. I told the doctor my story. And she believed me. I wasn’t crazy or a child with an “active imagination.” I was sick with an autoimmune condition that I would have for the rest of my life. Fibromyalgia is a disease in which there is widespread inflammation throughout the body, which leads to constant pain and other uncomfortable symptoms.
In a way, the official diagnosis changed everything and nothing at the same time. I finally received medication to help me sleep and lower my pain during flare-ups. I went to physical therapy. But my fibromyalgia certainly didn’t disappear. I was still in pain most days, especially during weather changes. When I exercised or played soccer, I had to soak in Epsom salt to help my muscles recover. I never thought about diet or how my diet might be affecting my fibromyalgia symptoms.
Eventually, the life change that helped my fibromyalgia pain the most wasn’t a new medication or stretching routine. It was being diagnosed with another chronic illness at age 17.
My Celiac Diagnosis Helped My Fibromyalgia Symptoms
My celiac disease diagnosis and initial adjustment to the gluten free diet wasn’t easy. I didn’t heal as most do when I first cut out gluten. After losing 20 pounds, I ended up being hospitalized my freshman year of college and fed through a feeding tube for two weeks.. Yet, eventually, after several months on following a gluten free diet, I started getting stronger and gaining back weight.
Even better, I was no longer in pain 24/7. Although pain has been a constant part of my life, I almost didn’t notice when it diminished. It was only when I tweaked a muscle and got that same pounding headache that I realized: I haven’t had one of these in a while. I realized that I could exercise without being overly sore the next day, and I could touch points of my body that had nearly made me scream before. And I definitely didn’t need all the pain meds!
I’m not saying that a gluten free diet “cured” my fibromyalgia, but I do think that changing my diet has helped alleviate my fibromyalgia symptoms. I still have flare ups and have to watch how hard I push my body. However, I’ve definitely found relief, and my day-to-day life is so much easier and less painful. I can live a much more active and busy life than I used to. I truly believe that being diagnosed with celiac ended up transforming my life for the better… I inadvertently discovered a new fibromyalgia diet.
My mom, who has fibromyalgia but tested negative for the celiac gene, went gluten free with me, and she also experienced similar changes: more energy, less pain!
My mom and I aren’t the only people with fibromyalgia who’ve benefited from a gluten free diet. Various small studies have found signs of improvement in fibromyalgia patients who follow gluten-free diets, and more people with fibromyalgia are sharing their success stories about how cutting out gluten helps improve their symptoms.
Experts have linked gluten and wheat to inflammation, which is the basis of autoimmune conditions like fibromyalgia. So, when people cut out gluten, they can lower the inflammation in their body, decreasing their fibromyalgia pain at the same time. Some experts even believe that gluten (or gluten intolerance) is the actual cause of fibromyalgia in the first place. If you have fibromyalgia, I would encourage you to talk to your doctor about experimenting with your diet. It may be hard to change your diet and cut out inflammatory foods like gluten. However if you can find a diet that helps reduce your pain, I think the work is worth it!! Experiment with various foods until you can personalize your own ‘fibromyalgia diet plan,’
What I’ve Learned
My journey has left me grateful. I am grateful for the mom who believed her daughter was truly in pain; for the doctors who diagnosed me, even though it’s extremely rare to find fibromyalgia in someone so young; and for the lessons my chronic illnesses have taught me.
Fibromyalgia has taught me how to persevere despite pain; how to empathize with people whose illnesses might not be clear to the naked eye; and how to listen to my body while stretching its boundaries. Celiac disease gave me the resolve I likely would’ve lacked to go gluten free (even if I’d heard of its benefits for fibromyalgia patients), and has continued to teach me to love cooking and to advocate for myself and my health.
Chronic illnesses aren’t just adult diseases. Kids can suffer from them too, and their complaints of pain or other medical problems deserve to be heard and believed. Give everyone the benefit of the doubt. We may not look sick, but some of us might be struggling more than you can imagine.
Do I think every fibro warrior should ditch gluten? In my (medically unqualified) opinion, no. Every person is different and thrives on a different diet. However, you never know what experimenting with a low-gluten or gluten-free diet could reveal. Similarly you never know what your own chronic illness could reveal-about your inner strength or even the lifestyle that helps your body thrive. So why not give it a try and create your own healing fibromyalgia diet plan? And there actually may be a silver lining to your own chronic illness.
Perhaps the most important lesson I’ve learned is this: Medical diagnoses are not easy, but sometimes they come with silver linings that can change your life for the better.
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