Pain News Network recently published my story on the link between increased symptoms of fibromyalgia and gluten. I’m reprinting that story here with permission from the editor.
I know some of you probably rolled your eyes when you read the headline of this story. I know that because I used to do the same thing.
Since being diagnosed with fibromyalgia, I’ve heard countless people talk about the link between fibromyalgia and gluten, and how going gluten free improved their symptoms. Whenever I’d hear that, I’d always think the same thing: “Fibro can be a living hell of pain and fatigue and everything else. I’ve already given up parts of my life because of this horrible condition. You want me to give up donuts and cake and yeast rolls, too? Are you kidding me? My sweet treats are one of the only things that make life bearable!”
But then my new fibromyalgia doctor ordered me to go on a strict anti-inflammatory, gluten-free diet. During the first two months of the diet, I allowed myself one “cheat” meal a week, which usually involved emptying the complimentary bread basket at my favorite restaurant or shoving half of a pizza down my throat.
My doctor wasn’t happy. He said I was just holding up my progress – that by reintroducing gluten every few days, my body didn’t have the opportunity to properly cleanse and heal – and that I would never feel the full effects of the anti-inflammatory diet until I cut out gluten for good.
In my gut, I knew he was right. I’d paid good money for his expertise, and here I was not following his protocol. So, on Thanksgiving, I topped off my meal with a slice of pumpkin pie, and I’ve been gluten free ever since.
After three weeks of no gluten, my daily pain levels had decreased. I was having more low pain days than usual, with my levels falling between 1-3 on the pain scale.
And then I messed up.
I was really tired one night and didn’t feel like cooking dinner. I asked my hubby if we could go out to eat at a new restaurant in town. It was the first time I’d dined out since going gluten free. I chose the salmon and veggies with a tarragon sauce. I thought I was making the right choice.
On the way home, I began having stomach cramps. I felt dizzy and nauseous. I knew I’d been exposed to gluten because I’d had these same gastrointestinal symptoms when I’d enjoyed my “cheat” meals previously.
The body is incredibly amazing. My doctor explained that when someone eats gluten every day, the body compensates as best it can. You may feel bloated or have acid reflux or feel extremely tired, but you’d never connect that to gluten exposure because it’s just part of your day-to-day existence. But when you detox from gluten for several weeks, and then reintroduce it, the body will often react strongly to gluten if you have a sensitivity to it.
My reaction to that gluten-laden meal reminded me of when I quit smoking years ago. I quit several times before I was finally successful. Sometimes I’d go days without a cigarette, and when I’d fall off the wagon, those first couple of cigarettes would make me sick-as-a-dog nauseous. I recognized that it was my body’s way of telling me, “Stop it! I don’t like it when you smoke!”
And here I was, years later, with my body telling me again, “Stop it! I don’t like when you eat gluten!” As a gluten-free newbie, it took me a few minutes to realize the tarragon sauce on the salmon must have been thickened with flour. (I’m not sure why I didn’t consider that before ordering. I chalk it up to be tired and hungry.) I figured I would go to bed with a queasy stomach, sleep it off and that would be the end of it.
But two hours after eating that meal, I started to feel a humming, vibrating pain come over my entire body. My arms, back, legs, hips – everything – ached like I was coming down with the flu. It was that same old fibro ache that I’d been living with off and on for years, and I was completely miserable.
For the first time, I connected what I ate to how I felt, and I was shocked. Logically, I know eating breads, cookies, pastas and other gluten-laden foods aren’t good for me. They give me an energy boost, but then I crash, and I feel worse than before. I know they spike my blood sugar and that I shouldn’t eat them because I have a family history of diabetes. I know they make me fat and lethargic.
But I didn’t know they were increasing my pain. It was a wake-up call for me.
Fibromyalgia and gluten studies …
It turns out all of those people who talk up the benefits of going gluten free might be right. Three small Spanish studies support anecdotal accounts from patients that gluten may increase fibromyalgia pain:
- A 2014 study involving 20 fibromyalgia patients who followed a gluten-free diet for 16 months found that “the level of widespread chronic pain improved dramatically for all patients; for 15 patients, chronic widespread pain was no longer present, indicating remission of fibromyalgia. Fifteen patients returned to work or normal life. In three patients who had been previously treated in pain units with opioids, these drugs were discontinued. Fatigue, gastrointestinal symptoms, migraine and depression also improved together with pain.”
- A 2013 study involving seven fibromyalgia patients with comorbid celiac disease found a gluten-free diet “can simultaneously improve celiac disease and irritable bowel disease/fibromyalgia symptoms, and indicate the merit of further research on a larger cohort.”
- A larger 2014 study involving 97 fibromyalgia patients with comorbid irritable bowel syndrome had a “slight but significant improvement in all symptoms” after following a gluten-free diet for one year. “Our findings suggest that further studies of this subject are warranted,” reads the study.
Yes, I know these are all small studies, and none of them are double-blind placebo controlled. I think it’s important to say here that I’m not aware of any studies that have concluded gluten causes fibromyalgia, so I am in no way inferring that. I also know that what works for one person with fibromyalgia may not work for someone else. This hasn’t been a “cure” for me – there is no “cure” for fibromyalgia – but it is one more step I’ve taken that I’ve found to be useful in reducing my symptoms overall. I’m simply sharing my experience and some of the research in case others would like to try it and see if it helps.
With that in mind, what if? What if giving up cupcakes could reduce your pain, even just by one-third or half? That could be life-changing!
I’ve had one other episode where I was accidentally “glutened” at a restaurant. As with the salmon, I again felt gastrointestinal symptoms on the way home, and again, my pain levels increased for a day or two afterwards. I don’t think this was a coincidence.
Why I’m going to stay gluten free …
I am a believer now in the benefits of going gluten free, and from here forward, I will be one of those annoying people on facebook and in the online support groups who, when someone asks if anything helps with fibromyalgia symptoms, will chime in and say, “My pain is better since going gluten free.”
No one wants to hear that, and I get it! Giving up gluten is damn hard. It seems like it’s in almost everything! And who wants to envision a life without birthday cake … without a juicy hamburger on a bun … without a slice of ooey-gooey cheese pizza … without Grandma’s homemade bread? I hate that my body has betrayed me like this – that it now identifies my favorite foods as the enemy and makes me pay for it.
But what I hate worse is living every day in increased pain. Knowing that I’m sensitive to gluten gives me a choice. It gives me power, to some degree, over my fibro symptoms. I can still have that slice of pumpkin pie at Thanksgiving, but I know it comes with a price.
Whenever I’m tempted to cheat on my diet, I ask myself, “Is it worth it?” And so far, the answer is no.
Have you tried going gluten free? Did it reduce your symptoms? Please share your experience in the comments section below.
Interested in learning more about the link between fibromyalgia and gluten? Check out this list of “10 Great Websites to Help You Go Gluten Free When You Have Fibromyalgia.” (I’ll be adding to this list as I find other useful sites.)