02.16.2016

How going gluten free may help with fibromyalgia

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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!”

Several small research studies suggest there's a link between increased symptoms of fibromyalgia and gluten. Read about these studies and my own experience of going gluten free. | Fed Up with Fatigue

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.)

Early research studies show going gluten free might reduce fibromyalgia symptoms. These 10 websites will help you go gluten free.

Each week, FedUpwithFatigue.com publishes the latest news on research and treatments along with helpful tips for living better with fibromyalgia. If you found this post informative, please subscribe below for updates.






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Comments

  1. My Reumotologist suggested that I try going gluten free. I said I’d give it a try for six months because she said it way take that long before I would notice a difference! I actually started noticing the difference within three months! I have now been Gluten free for four years! It has reduced my pain level from a 30 to a 1.5 to 2! If I accidentally ingest something that has gluten in it (in a restaurant that try’s to tell you it’s gluten free) I am in the bathroom nauseated, stomach cramping and diarrhea within 20min. ….. You must always ask about ingredients when you go to a new restaurant or to someone else’s home to dine!!! A lot of times I carry my own then I know it’s a safe choice. I haven’t had any flare ups for nearly 3 years! I recently went through a major operation that required a 10 week recovery and my dr was amazed with how great I was doing in 1week! I took it easy for the full 10 weeks but I was ready & wanted to get off the couch after 3 weeks! I was originally concerned I’d be in a relapse of pain & stuck in bed for 10 or more weeks! I credit my rapid recovery to being gluten free and knowing my body and my symptoms! If I feel bad a day I meditate and relax and follow my own regime! I was finally given a diagnoses in 2009 after struggling for more than 10 years! Gluten free is the way to go; I have discovered that I am very gluten sensitive and it just isn’t worth the pain & stress to my body to go back to my old eating habits! There are a lot of delicious desserts that are gluten free that is not dry or taste like an MRE cracker, etc. Udi’s is my favorite for breads & buns! Betty Crocker is my favorite GF cake! There are many many more you just have to buy & sample until you find what satisfies your taste buds then you’ll find yourself continually buying that brand and then you’ll be smooth sailing for the rest of your life! Also B-12 injections, Omega 3 supplements both will help your fatigue.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so glad going gluten free has helped you. Making that shift does help a lot of us. I like Udi’s breads too. Their raisin bread is one of my special treats – I like to slather it w/ a little nut butter.

  2. ShyestOfFlies says:

    I think it’s placebo for a lot of people honestly. Dairy is a more major allergen than gluten by far, but people don’t find that as trendy.

    I have had the celeiac blood test- negative and tried an elimination gluten diet- no change in any symptoms. I’m glad cause frankly I love gluten a lot and as a vegan my diet is already quite limited. Other things I did elimination with were soy, acidic foods, and I was supposed to do dairy but I already don’t eat that and haven’t for many years because of increased ibs symptoms and a topical reaction to dairy!

  3. 22/2/2016 at 8.26am Hello everyone from rainy old UK, coming at the gluten free debate from a slightly different angle I have had no choice in giving up gluten ,because at the age of 55yrs I developed the most dreadful maddeningly itchy skin rash. To cut a long story short it took almost a year of tests to be told that I had become Coeliac.I am now 57/58 in October 2016 I have been gluten free since May 2015. Has it helped, a little with my fibro fog ,I also noticed that I had two separate rashes as I also have the rash associated with fibromyalgia. So double misery , the coeliac rash is known as Dermatitis Herpetiformis, an outwardly visible sign of coeliac disease. I don’t actually know how long I was Coeliac before I was diagnosed, a long time I believe , however I kept being told it was Arthritis, which I also have. Just fight every step of the way to be you and be strong, because of people like Donna, you realize that you aren’t alone.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Linda, I’m so glad you were able to finally get properly diagnosed!!!!! Celiac can be dangerous if it goes undetected. You are never alone. There are millions of us out here who live the struggle just as you do every day.

    • I too had to go gluten free. I was only 30 when I started getting severe stomach pains that would send me to the ER, rashes and more than anything body pain that felt like I was recovering from a severe car accident on a daily basis. My body was in so much pain that by the time I was 32 I moved like a robot. I got diagnosed with fibromyalgia, got diagnosed with chronic gastritis, depression, psoriasis on my skin and a few other things. I had considered myself pretty healthy, I ate well but still I was having to see a chiropractor 2-3 times a week. I had an endoscopy done to look for celiac and it came back negative, so I wrote it off. A few months later I was fed up because it felt like I was getting worse and more health problems were coming up. I asked my doctor for an allergy panel to test everything because I wanted to know if it was something I was eating. Turns out I have a non-celiac gluten sensitivity with an extremely high allergy to gluten. Fast forward, 1 year of being gluten free. I have adapted, at first I had to explain why I couldn’t eat many things to everyone, I sounded like a broken record-but it is so much easier now. Best of all my rashes and psoriasis is almost completely non existent, except when I accidentally get glutened and I have only had to go see the chiropractor once this entire year. Being gluten free has changed me so much- for the betted, including my level of happiness.

  4. I have fibromyalgia and IBS and have recently started a gluten free and dairy free ( I have been lactose intolerant since childhood, and it has recently started bothering me more than before) diet. I was definitely amazed at how much better I feel! I can say that when I cheat and have gluten, my body pain increases and lets me know it doesn’t like it. Thank you for writing this article, it was good to see that I’m not the only one!

  5. Catherine says:

    Perfect timing! I live to bake. Being up to my elbows in flour is the closest thing to heaven on earth. I recently graduated with a degree in Baking and Pastries. I’m in the process of starting a home bakeshop. I’m also battling RA. It has been getting worse, despite numerous drugs. And then a friend asked me to do GF baking for her, and she gave me a bag of GF flour. As I played with it, I noticed within days my RA symptoms lessened. I went totally GF and was finally able to taper off steroids. And then I accidentally ate something with gluten. Within an hour, I started to flare. I was with a friend who is GF due to fibro, and she could see it. I figured a couple days and I’d be fine. Nope! A week out, and I’m back on a higher dose of steroid with no relief in sight. I just wish if I was going to “cheat” it would have been something worth eating! Luckily, the baker in me is determined to create GF baked goods that actually taste good.

    • Donna Gregory/FedUpwithFatigue.com says:

      It’s great that you were able to identify a symptom trigger. Like I said in the post, it gives you a bit more control over how you’re feeling. You’re going to help so many people by offering gluten free goodies. 🙂

  6. Yes, yes, yes and yes!!! I am 100% in agreement with you and I (stupidly) reminded myself of this last week where I ate something with gluten (and dairy– both evidently problematic for me) every day because it was there and would otherwise be wasted. When you’ve been following a diet for so long you can easily forget the starting point and why you decided to do it. Want to know what I noticed:

    Bloating, stomach cramps, headaches, eye pain, muscle twitches, increased widespread pain, increased fatigue and a 10-20% decrease in sleep quality (I track it with an app).

    I was like woah! Sometimes you need a reminder of why you do what you do. Imagine how things would decline if I kept it up? I don’t really want to think about it!

    I don’t for a second believe that gluten causes fibromyalgia but I definitely believe it aggravates it. It’s so hard to see that connection though when you eat it everyday. I know that from experience.

    Maybe I’m wrong but I do think those who don’t see the benefit from diet changes either don’t give it long enough or do it half-heartedly. I’m sure you’ve learned the problem from “cheating” 🙂 Most need to heal and restore the gut to feel the full benefit too and that can be a difficult road for some. It’s also worth bearing in mind other foods can be problematic too and if you cut out one but keep eating others you aren’t going to feel the benefits.

    • Donna Gregory/FedUpwithFatigue.com says:

      I have almost the exact same symptoms as you when I eat gluten now. It’s so crazy. I would have never known had I not been ordered to do that diet by my doctor. I do see a lot of people in the online support groups say they’ve tried going gluten free and it didn’t help them. I always wonder if they gave it long enough to see a difference and/or were they really gluten free b/c it is extremely hard for novices to cut gluten out completely b/c it’s included in so, so many foods under different names. (“Natural flavors” is my favorite overly vague one.) I suspect I may also have an issue w/ dairy, but have not tested it yet. I’m testing tomatoes/peppers (nightshades) this week.

  7. wow really interesting- there is a big link between gluten and lots of chronic illneses i think; i feel much better gluten free and i have crohn’s disease.

    jenna from http://www.abalancedbelly.co.uk

  8. Jill Vokey says:

    I was gluten free already due to celiac disease when I was diagnosed with fibromyalgia.

    • Donna Gregory/FedUpwithFatigue.com says:

      None of the studies say gluten causes fibromyalgia – just that gluten may aggravate symptoms. It seems to be because gluten causes inflammation in some people, and inflammation can lead to more pain/digestive issues.

Trackbacks

  1. […] I’ve learned that eating unhealthy food aggravates my fibromyalgia symptoms, so I’ve tried to find ways to prepare foods ahead of time […]

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  3. […] How going gluten free may help with fibromyalgia […]

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