Q: I've seen claims that people who went on a gluten-free diet have lost all symptoms of fibromyalgia and chronic fatigue syndrome. Is this possible? What's going on?
A: This is definitely a topic that's coming up a lot. So far, we don't have enough research to know for sure what's happening in these cases. I suspect we've got a few things happening:
- A lot of us have sensitivities to gluten and/or other foods, which can cause their own set of symptoms or exacerbate fibromyalgia/chronic fatigue syndrome symptoms. For people in this category, cutting out the problem food may help alleviate symptoms, but likely won't relieve them completely.
- Some people with severe food intolerance symptoms may be misdiagnosed as having fibromyalgia/chronic fatigue syndrome, so when they eliminate the food their symptoms all clear up.
- It's possible that in some people food sensitivities can contribute to central sensitization, which is believe to be a key component of these conditions, and that eliminating the problem foods can put them into remission.
Since this is still a big gray area, we have no idea which category, if any, we may fit into -- so I think it's important for all of us to go through an elimination diet to see what food issues we may have. Also, as I learned from experience, it's probably smart to repeat the diet every few years. The first time I did it, I found nothing. However, a couple of years later I developed gluten intolerance.
For me, cutting out gluten hasn't impacted my fibromyalgia symptoms -- it only cleared up my gluten-related symptoms, which were digestive issues, mouth sores, intense fatigue and narcolepsy symptoms. Do you have food sensitivities? Find out:
What's your experience with eliminating gluten or other foods from your diet? What do you think is behind some people's dramatic food-related improvements? Leave your comments below!
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I have M.E.; I tried a gluten-free diet for 3 months to see if that was part of the problem. It made no difference to any of my symptoms. When I began eating products with gluten again, I noticed no change.
Having said that, I do appear to have a specific problem with wheat bread and wheat pasta, and develop heartburn when I eat too much of these. Small quantities from time to time are ok. But there is nothing to say that this is related to M.E. When I stick to rye bread and spelt pasta there’s no problem.
The last time you brought this up I was in one of the denial stages. It is such a difficult diet to stick to at first. In march my husband’s doctor told him his blood pressure was way too high, so together we went on our favorite diet, no bread or pasta only grilled meat, veggies, fruit,no snacks. I felt great after a three weeks! (after all the cravings were gone)But I have done this a couple of times before- trying the gluten free diet, having most of the symptoms. Then I had my doctor do the blood test,it was negative, I didn’t care I was feeling great, not as weak, thinking a lot clearer, no more stomach and bowel pain, diarrhea every day. I stayed on a glute free diet for months, I felt pretty good but I started thinking of that negative test, went back to wheat, gained the weight back and all the problems.
This time I have done a lot more research, negative tests are very common. Some people don’t even have the
gastrointestinal problems, it takes on average 10years to get a correct diagnoses,gluten sensitivity is early signs of celiac,the average person also has problems digesting wheat because it leaks into the blood stream through the gut, it also causes inflammation so if you have rheumatoid arthritis like I do you don’t need any more of that.
I got a DNA test, the results were extremely high for developing celiac, that’s all I need to know, I have always had anemia, I saw my parents suffer with stomach problems, my son lost a hundred pounds almost died, can barely eat anything without having severe pain and very weak and is still in denial about possible celiac because his blood test was negative, maybe when his son starts having the same problems he will be convinced.
We seem to have not one but several immune problems at once, what’s not so bad about celiac it goes away with a gluten free diet! Now I love my diet, I found all kinds of good products, I make my own bread I’m trying not to eat too many of the goodies, I lost 8 lbs, my husband 20,- show off!
There are different reasons someone could feel better on a gluten free diet. unfortunately it didn’t take away the fibromyalgia and RA, but I really do feel a lot better, this maybe one of the reasons some with fibromyalgia do much better than others.
I will never go back to gluten not even to try the test again, I don’t need the mark on my doctors envelope and the nod from her it’s ok to be on the gluten free diet. I don’t need a title. I just need to be as healthy as possible with the cards I was dealt.
I tried the gluten free thing last year about this time, many people kept pushing me towards it, so finally I conceded and said I would give it a full month, no cheating. I had no change in symptoms, positive that is, but what I do know is that I was exhausted that whole month. I’ve learned with FMS that one variable like this cannot 100% be related. This year at the same time, my second summer in Memphis, I’m just as exhausted, if not more, though I’m not gluten free. Bottom line, it hasn’t helped. I would have anybody that is thinking about a gluten free diet to see both a GI doc to check for Celiac’s disease (sp?) and then onto a nutrionist.
I am ME diagnosed and was bedridden for ca. 5 years.
9 months ago I started gluten, milk&dairy, egg, and fructose (+suggar) – free and low histamin diet. As doctor perscribed I do need to take some substitues of enzymes for pancreas and gallbladder&liver + detoxyfier + large amout of B12 twice a week. Well partially I have got my life back, have much more energy, not so much reumatic pain anymore – in general I am much, much better. My weight loss since beginning of the diet is 13 kg and is still going gently down in addition that I got a baby skin while I switched to gluten&wheat starch free…
I am not fully cured from ME but what a improvement… belive or not…
I am celiac, I had fibro (and so much more) and it’s gone now, but it took me 4 years and plenty of diet trial and errors, including a heart attack. More on that later. You don’t have to be celiac (but, yes, PLEASE get tested by asking a doctor for a ‘complete’ “CELIAC PANEL” BEFORE you try gf diet. If it’s negative, great, but STILL try gf diet!). It took me a good four to six months gf to see bowel changes. It took me another two years to see that vitamin levels made a difference (Bs, magnesium and D for sure); most of my pain was gone – except my hams and quads (largest muscles).
Celiac disease is but a small part of the LEAKY GUT spectrum. I’m all over the net trying to figure out my health mysteries. After my heart attack I listened to a Dr. Ron Rosedale interview where he said that saturated fat prevents cellular energy. This info coincided with my reading about mitochondria energy shortages … which is what I was feeling before my heart attack (I’m obese and ran a 5k too fast for my level … but at the “heart” of it was not having energy). AND that lack of energy was DEPRESSION because I had a delayed food intolerance to … dairy (atypical for a celiac, I never had “lactose intolerance.”) Dang! I LOVE/D dairy. I figured that out in four days – wow, my depression went away, but BONUS: my muscles felt better: the “fibro” in my hams and quads is GONE. I also had to take out other things (see link below), but because of my clean eating and gluten-free most of that was already done.
If you’re interested, I have written more in my blog: http://bit.ly/Dotsladyfibro . You can ask an alternative health doc for an “intestinal permeability” test or “lactulose-mannitol” test. Mine was from Genova Diagnostics. I paid about $72. Please google “fibromyalgia leaky gut” and read away.
This new way of eating (WOE) is helping me sleep better, too. Can’t help but think about kids on the autism spectrum who benefit from gfcf diet… me, too.
Good luck fibro friends. Where there’s a will, there’s a way.
Could it also be the GM foods? I know something that’s not discussed anymore just excepted. If you downed a shot of raid your not going to feel well, they have been for some time now infusing pesticide in the wheat grain, before that spraying it on. ever seen the old black and white clip of them spraying DDT on people including children? With the thought Look it’s safe for humans. We have all been exposed to a multitude of chemicals from the womb. Doesn’t make it safe or OK. The program I saw on the disappearance of the bees clearly showed the genetically modified plants were to blame, they weren’t able to digest it, found dead with it still in their stomach. People want to so badly believe everything is alright, but is it? I won’t get into BPAs and PCBs or radiation and hormones in milk, meat …
It’s very very sad to even think about these things, but there are more and more immune disorders, digestive problems, cancers, heavy children, little girls in puberty too early.
So many people can no longer digest wheat, what next? It’s going to be interesting to say the least.
My sister in law has chronic fatigue and fibro and she is currently eliminating wheat to see if this helps. I will have to share this with her. I keep telling her about how much our Vidazorb probiotic has helped our family with our son’s eczema due to food intolerance and digestion. He is so much better now and I so recommend this!
A test our family found useful is the DNA analysis done by “23 and me”. It confirmed that genetically both my daughter and I were pre-disposed to celiac. Both of us were over 30 times the risk of normal population. The test is not in-expensive but you also learn about 50 other diseases. It is an easy test to take, you spit into a small test tube, results take about 6 weeks. Test is not definitive but it is can be a very useful guide.
I was diagnosed with FM about 2 years ago and I’ve been wheat free for over a year. No change with my fibro symptoms unfortunately, only the digestive problems I was having due to wheat intolerance.
Be sure and get the blood test for gluten sensitivity!
I went gluten-free at the suggestion of my dietician when I was having bowel issues. I had tested negative on the blood test for celiac sprue twice. After not even a week off of gluten, I started to BREATHE BETTER! I had fewer headaches, less muscle pain, and I thought I was having less fatigue. I had a turn-around in bowel issues from diarrhea to some constipation (probably just from diet change in general — later on when I went on the diet long-term, my bowel habits would become regular)
I regretted having to go back to eating gluten at the end of the week because I’d decided to go for a colonoscopy/endoscopy and get the biopsies done (I think with the endoscopy part of the test) to see if my cilia were damaged (another way to test for gluten intolerance/celiac sprue). That test came back negative.
After the test, I went back on the gluten-free diet and found myself breathing much better, fewer headaches, less fatigue, less pain… So, what in the world is going on!?!? On a whim, I went to the allergist, I was sure that if it wasn’t celiac sprue then it had to be an ALLERGY to wheat. So, he did the testing on my arm with the little dots of serum and pin pricks. The wheat serum wasn’t causing a reaction! One marked “B” was!
BARLEY! I’m allergic to barley! Which means anything with “caramel color” or “malt flavoring” or “malt vinegar” or “brown rice syrup” or “maltose” is something I need to avoid.
I also avoid pastas and breads because I don’t feel well after eating them. It sounds like there is often some “cross-reactivity” issues with people allergic to grains. My dietician said she’s never seen anyone “just” allergic to barley, so I keep that in mind. I feel so much better now that I know what’s going on! It’s so worth the extra trouble of trying to figure out what it is that might be causing issues — this cleared up my bowel issues, my breathing, my headaches, most of my pain, my fatigue. It’s given me better quality of life.
Heidi, thank you for sharing your story. I was really moved by it!
I have fibromyalgia, amongst other things, dont we all, and have always had gut problems – major – last year in September, I cut out all milk, wheat, gluten, meat and sugar products – and immediately lost 10K about 25 Lbs, and have kept it off and have no more swollen belly after eating nor the awful pains. my diet is pretty boring, but I am happy that I am so much better – it is amazing – now if I can just get rid of the immune problems, the CF and all the rest – it will be great.
Try a wheat free diet just, youknow, to try. My symptoms have been much relieved (it takes about two weeks) but simply eating no wheat. It’s hard, but it’s so nice to be in no-pain or MUCH less pain. Thing is, it wasn’t the gluten. It was the wheat. Somehow.
Gluten free helped my constant pain. My sinus pressure was eliminated. But the muscle pain/aches/soreness totally cleared up when I added essential fatty (omega 3s and 6s) acids to my diet by way of Flaxseed oil. Barleans if you’re interested in the brand. I tried this after reading an article from Dr Andrew Weil.
I’m curious how many have you had already been put through a complete celiac panel and had been allergy tested for wheat prior? If you had already had both did you still try going GF and what were the results?