My Gluten Free for Fibromyalgia Experiment

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Last Updated on January 3, 2022 by melissanreynolds

I’ve been looking into dietary changes recently. Gluten free for fibromyalgia is one of the cure alls that loads of people like to go on about. However, as with many of these things, there is some truth to the matter.

There have been people for whom gluten intolerance is a big deal. There are also people who are celiac (cannot tolerate gluten at all).

Gluten is the protein found in wheat, barley, rye, spelt, kamut and triticale and more.

gluten free for fibromyalgia

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There is no one diet recommended for fibromyalgia but there is some information suggestion that some people with fibromyalgia do well gluten free. Doctor Teitelbaum recommends low carbohydrate in his book From Fatigued to Fantastic (2021)

Research around gluten free for fibromyalgia

In this tiny study (2014) of 20 people they found, “This report shows that remarkable clinical improvement can be achieved with a gluten-free diet in patients with FM, even if CD has been ruled out, suggesting that non-celiac gluten sensitivity may be an underlying treatable cause of FM syndrome.”

In this study quoted in this article Gluten Intolerance in Fibromyalgia on VeryWell they said, “In 2016, a study in the Journal of Clinical Gastroenterology compared the effects of a gluten-free diet to a low-calorie diet in people with both FMS and symptoms of gluten sensitivity.4 Both diets appeared to reduce gluten-sensitivity symptoms and there wasn’t any difference in their effect on other symptoms.”

As is the case for most information around specific ways of eating for fibromyalgia, unless there is an intolerance, healthier food choices might be the best answer.

My gluten free for fibromyalgia experiment

I slid, rather than dove, into my gluten free experiment.

After some recurring problems with candida, I had mostly given up bread already (which was most of my gluten battle).

I had circled the gluten free idea for ages. A naturopath suggested I give it up. Research and blogs of fibromyalgia/CFS warriors suggested the same.

Here’s a few links about non-Celiac gluten sensitivity:

Is Non-Celiac Gluten Sensitivity a Real Thing? 
Symptoms of Gluten Intolerance 
Following a Gluten Free Elimination Diet 
Improving Fibromyalgia Symptoms with Food 

I let a negative celiac test give gluten a stay of execution.

After reading It Starts with Food and the Whole 30 books and deciding a gentler approach to elimination would be wisest, I made plans to go gluten free.

I’m a planner. I will not make a decision that could knowingly increase my pain and fatigue levels, I have a responsibility to my baby and my husband as well as to myself.

So I created a plan, worksheets to track progress and lists of food ideas. A month long trial excluding gluten, initially including oats, would begin on June 1.

As luck would have it, I ended up with a super bad virus on May 30 and experienced such severe fatigue and pain that I got a fright! But I managed to fight through it and get back on track just four days late.

I began the gluten free experiment on June 4.

Let me just say that I had no idea that withdrawal would be so bad!

It felt like I was withdrawing from a heavy addiction. From day one I was ravenous and desperately wanted gluten and sugar (not that I was avoiding sugar any more than moderation). By day three I experienced a detoxifying lot of bowel movements, this continued into day four.

The day four symptoms were probably due, in part, to being exhausted post virus plus being up with a teething baby. However I had a massive headache, sightly diminished hunger pangs and a general blah feeling. Unpicking the general fibromyalgia/CFS threads from the flare up from the viral infection from the gluten withdrawal threads would be impossible.

I was gentle with myself, allowing myself to eat what I liked (without gluten). I found a nice half vegetable, half fruit smoothie was useful in getting me through the morning. I just can’t fill up at breakfast time, so thinking of morning tea as second breakfast helped. I allowed the chocolate craving within reason with some dark chocolate. Fruit, vegetables, our usual meals with quinoa or rice, some gluten free bread, smoothies and nuts and seeds where my staples.

Day five and six were good days! I felt like my head was clearer and my energy levels had risen.

After a week, I thought I was feeling better and a little less fogged. Certainly less upset in my stomach. However, I can’t be sure as 15 days in, I realised that some wheat fillers had snuck into some of the foods I was eating! In addition, as soon as my virus cleared up, my son gave me a lovely mucus-y cold! After three weeks sick and just over two weeks gluten free, I think that it is worth it.

gluten free for fibromyalgia

My gluten free summary

It may be what I am including, rather than what I am excluding that is making the difference, but I am pretty happy with the results. My husband has been amazing, twice he has done the supermarket shop and brought back a whole heap of gluten free products (I was too stingy and ended up struggling for what to eat) but he has joined me with gusto.

I have been having more quinoa and millet – both have far more vitamins and minerals than rice or glutenous grains. Breakfast smoothies full of fruit and vegetables have amped up my fruit and vegetable intake. Whole foods are taking center stage.

Here’s a couple of things I have been reading to help me continue:

The G-Free Diet: A Gluten-Free Survival Guide book
Hidden Sources of Gluten blog post
Grass Fed Girl blog
Gluten Free on a Shoe String blog

I was going to post my part two after my month and reintroduction was completed. However, I added oats back in for one meal and experienced severe stomach cramps followed by a mini version of the withdrawal process afterward. So I am going to do six months (yikes!). I will update then 🙂

8 thoughts on “My Gluten Free for Fibromyalgia Experiment

  1. The advantages of going gluten free is one of the topics in Dr. Robynne Chutkan’s book “Gutbliss.” She talks about her own experience with gluten: “Like clockwork, the symptoms would occur about an hour after eating a high-gluten meal. A bagel was the worst; gluten-containing soy sauce and other mild exposure wasn’t a problem.” (p. 112) So wheat fillers might not be a huge issue. It did, though, take her months to connect gluten definitely with the brain fog and fatigue that she was having. It took me months, too; not that I wasn’t feeling any better after the first four weeks. The initial relief was more in my thinking and less in my stomach and fatigue.
    Lately I’ve been noticing that some gluten-free products don’t leave me feeling very well either. You’re on the right track when you say, “what I am including, rather than what I am excluding that is making the difference”. Adding potato/tapioca starch breads and pastas isn’t the answer, eating fruits and vegetables is.
    It’s great you’re feeling better! Good for you and your baby steps!

    1. Thanks for sharing your experience, it’s great to know someone else had a similar experience in the first little while. I’ll look up that book too! 🙂

  2. How are you getting on with your Co-enzyme Q10? I am finding it’s made a real difference to me. My dad had coeliac disease and I know how hard it is to find gluten free foods (((hugs)))

    1. I’m not really sure! Being sick for three weeks straight plus going gluten free has made it hard to tell! I will stick with it until the bottle runs out (3 month mark) and then see if I have negative effects from going off it 🙂 thanks for that, it’s difficult but worth it 🙂

      1. Once you are over the sickness you might feel more energised. The biggest thing I have noticed is that ‘coming down with the flu’ feeling has eased a lot, so once you have recovered a bit, you might be able to tell. Fingers crossed for you, petal xx

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