It is not uncommon for those of us with fibromyalgia to have a sensitivity to gluten. So, what is gluten? It’s a sticky, glue-like protein found in wheat, rye and barley. You also can find it in oats and other grains, due to cross pollination when they are processed in places that also process wheat, rye and barley. (It’s interesting to note that the wheat we have today is genetically different than the wheat our parents and grandparents had.)
Something I learned recently that really shocked me is that two slices of whole wheat bread can spike our blood sugar faster than two tablespoons of table sugar. Wow! Gluten activates our hunger hormones, making us crave carbohydrates. It also can lead to leaky gut syndrome, which is common in those of us with FM. I can tell you that since I cut out gluten, my IBS symptoms have really quieted down. I went from having two or more painful episodes a week, to only three minor incidents in the few months since I completely cut out gluten. If you haven’t gone gluten-free, it may be worth considering.
I’ve been able to stop taking my medication for acid reflux. Although I’m noticing some great changes, my FM pain remains a constant. However, I’ve only been gluten-free for about two months. It will be interesting to see what changes happen after six months or a year. Going gluten-free is not a magic bullet, but it may help some to reap amazing short- and long-term benefits.
According to U.S News and World Report some of the symptoms that could indicate a gluten intolerance include: Gastrointestinal issues, vitamin malabsorption, skin rash, migraine headaches, joint pain, lactose intolerance, chronic fatigue, and fibromyalgia.
A couple of books I would recommend are Wheat Belly by William Davis, MD and Brain Grain by David Perlmutter.
In order to avoid gluten, you can get gluten-free oats, quinoa, etc. If you’re not sure if you have a sensitivity to gluten, you also could talk it through with your rheumatologist or other health care providers. They may recommend that you eliminate gluten from your diet for several months to see how your body responds to the changes.
Have you gone gluten-free already? Please share your experience without readers.
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Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
The more I read the more discouraged I become. I am sugar/gluten free and have been for a long time. Due to severe TMJ I can no longer chew-even soft foods cause problems. I know I need more protein and ho to get it is difficult. I WILL NOT use those protein drinks that are claiming to be so healthy-EGADS!! Reading the ingredients is enough to bring about an attack of reverse peristalsis. there are companies that have healthy ones-waaay out of reach in $$$.
Very discouraged. Becoming even more discouraged w/ the more I read. May need to get the heck out of all of this depressing info.
Em, we get protein powder at our local grocery store, pea and rice protein powder. It’s really good in a smoothie or I like the chocolate added to some almond milk. It’s a lot less expensive than a health food store and it’s organic.
My FM/CFS functional doc says if you need protein (me), eat eggs if tolerated (b/c we often don’t eat supper where your meat dish usually is served). I hate eggs, but I like egg salad, so I make my mother’s recipe, and eat it with Good Thins Gluten Free Crackers, it is really good. The salt on the crackers is LESS than Premium, but there is enough for your salt requirement daily, so my POTS tachycardia is now a non-issue, a win-win. Wanted to share that with you.
That is one of those things that either works for you or doesn’t IMO. I was on the Ketogenic diet, terrible diet for me, for only two weeks, so was also sugar and gluten free for that time. Not only was my pain still awful, I hated the diet and eliminating foods that made my life somewhat better. Would a longer trial help…I don’t think so for me. I have no IBS symptoms and my fibro related reflux has disappeared with supplements after some months. I ate sugar and gluten for forty years before getting fibro, afraid it’s just another thing that does not seem to work for me.
Steve, I agree, we all have to find what works for us. I just try to stay away from foods that I know will cause an unfavorable response with me
Steve, I tried ketogenic diet for 2 weeks too. I felt worse with respect to fatigue and depression so I quit. My (well read) friend has been ketogenic for 10 years (MS) and says that 2 weeks is not enough for the body to convert over to using fat for energy. She is in amazing health at 58!!
Do most folks experience issues every time if they are gluten intolerant? It seems to fluctuate with me, then I forget and eat it again and I need to remember it can be delayed. Do you suggest food challenge for how many months?
Rose, I would say 14-21 days. Then add it back in for 2 days and see how your body responds
Thank you Robin. anything I have found locally is (in my opinion, poison). Also peas and I do not get along. Thank you for your input though. Where I live people believe bacon is a protein. Do not dare say a word because I am making it all up. I would that I were. I can hear the earth calling to me. Whilst growing up everything was organic and now the land I grew up in has been poisoned by greed. To know that the earth that my own father loved so?? He knew what the chemicals would do as did other farmers. Too late now. Greed has taken over. So, so sad 🙁
That is sad Em.
Em, you may not be able to eat legumes, peas are one. I did the Elimination Diet for about six months along w the Autoimmune diet, and I just cannot add back in, nor get along with, any beans or peas whatsoever – and I love beans, every kind! But they make me feel ill. Peanuts are legumes (when eating nuts must watch for divert. symptoms first! I switched to cashews for mag, English walnuts for fibro, and occ brazil nuts for selenium + take a 50 mg sel cap daily, + liquid zinc at the 50 mark on the dropper every a.m., makes a dif in energy). Almonds have lectin/leptin? so I don’t eat them or drink the milk, I use everything coconut, incl milk. Avoid soy like the PLAGUE. Also dairy and gluten free.Try it.
Legumes/almonds are not a problem and I have always avoided soy. Also dairy and gluten free. Also avoid peanuts like the plague as they are not good for the thyroid as are many things.
Another thing I now avoid is Gabapentin and even the name brand. I have all of the more unusual side effects some of which can be severe and were for this individual. If anyone would like to check into these side effects you will see a figure disappearing into the distance waving good-bye to more of the drugs that are to help w/ fibro symptoms-A typically passive person had turned into a grizzle bear w/ a sore paw and this drastic personality change had me strongly despising myself and saying things that were waaay atypical. Was even seriously considering suicide and throwing away personal possessions, but afraid of admitting how I was feeling for fear of being kicked to the curb as a head case one again only to be locked up and pumped full of pyschotropics-WHEW, y’all that was a close call once again. Wise mind started telling me that I had been here before w/ meds. Almost a week now and feeling much better. I will deal w/ the tingling. Will be fun to announce this to my family and pain specialist as well. Been down this road before as well.
As I have aforementioned we are not all wired the same.
Wishing all a tolerable weekend and do the best to listen to your body as mind and body are all one.
Blessings.
There are times that turning the clock backwards can be useful
I have been gluten/sugar free since 2010. Now I can no longer eat anything in the nightshade family. White potatoes were not something I cared for-peppers were a hard one to banish from my diet. Took me a month or more to figure this one out. I do not eat refined sugar and now it tastes bitter. How are peppers that are supposed to be healthy can cause a fibro-flare?
We are all learning. All of the additives in foods are not only harmful to fibro folks. All of the artificial trash is harming our younger ones-will they ever get it???
We are not all wired the same. What works for one does not work for another. Do the best you can to listen to your body.
I have doctors whom think I am making things up. Time to find another doctor. Problem is docs stick together. They are doctors and their job is to prescribe. Not their fault they cannot get it!!! To this I say. “toro turds”.
Yes, Robin, it is sad. Also sad this is the best comment you have for a fibro person.
As I said in former comment-what works for one does not work for another. We are NOT all wired the same.
I have come to the conclusion that traditional doctors are trained to prescribe-not their fault they cannot think outside the box.
Living on a fixed income is limiting. My best to you whom are struggling alone.
Hi Robin, how are you doing going sugar free???
I mostly just have raw honey and pure maple syrup
I am just finishing week 3 of being gluten free (trying it for lent) last weekend I was saying that I felt better and had less stomach problems then usual, I wish I hadn’t said anything! This week has been horrendous, can’t leave the house, doubled up in pain, using heat on my tummy and ice on my bottom!
Not sure what to do, ride it out for a little longer, or just eat the doughnut I am craving! (I rarely even want to eat but this week has been different)
Annie, how awful! This week has been terrible in a lot of ways for me this week and lots of other fibro friends as well…hugs!
Robin, I have a friend who went gluten free and he dropped at least 30 pounds right away! Has it helped you in that department?
Denise, I have lost about 10lbs. It would probably be more, but some of my meds make it hard to lose weight
I’ve been gluten free for 25 years (definite allergy). Diagnosed with fibro 20 years ago. My fibro remained manageable for about 10 years without meds. Now If I happen to get a little cross contamination it increases my pain and fatigue substantially. In the last 3 years I’ve found that all grains can often trigger some painful neuropathy. I am hoping to find a doctor that can see if leaky gut syndrome might be an issue for me.
Karen I would suggest a functional medicine gastroenterologist
Thank you!!
Good luck finding a functional medicine gastroentrologist! I can’t find ANY “functional medicine” doctors of any sort in my rather large geographical area. Any suggestions on finding one?
Denise, I live in a small town in New Hampshire and have a functional gastroenterologist and a functional medicine doc who is my pcp. Here’s a link to see if you can find one in your area: Search for functional medicine doctor
Robin, already tried that. Got “NO MATCHES.” Sad, but true.
I found that if I put in city and state I got no matches, if I put in the zip code, I got matches
My reumatologist has come to the conclusion that for some people a gluten-free diet is not enough to see improvements in pain/fatigue, but they need to be completely grain-free.I tried some time ago with the gluten-free diet for 7 months without any improvement. Now I am trying to be mentally prepared for a completely grain-free diet,but have not yet started…I’ll let you know if it works…
Rebeca, I applaud you! I tried a grain-free diet fir about 6 weeks and could not do it. Keep us posted once you get started
I read Fibromyalgia News Today regularly and I just have to sound off about how this article upsets me. So frequently I have people ask me if I’ve “tried this or tried that” especially with regards to diets or supplements. I have been tested for gluten intolerance. THAT IS NOT MY PROBLEM! I have Fibromyalgia. It is not going to be cured by a change in diet. Trust me. If I could change my diet and feel better, I would. I HURT! Everyday. Unceasingly. I hurt.
Please, don’t run another belittling article like this. It shows you do NOT understand. This is NOT a disease that will be cured or even aided by a change of diet, a supplement or a new excercise. REALLY! Be a little more sensitive.
Dede, I’m sorry for offending you. This was written about my personal experience. I have fibromyalgia and although I understand what works for one person may not work for another, I share my experiences in case it can help someone else, even a little.
Robin, I appreciate where you are coming from. However, it is hard enough to convince people who do not suffer from this horrible disease that it isn’t something we’ve done or failed to do to bring it on. It just IS. I hope and pray some FM sufferers find a tinge of relief from changes in diet, but overall, I find changes to ones diet is simply another deadend. We need to be supported in every way. Fibromyalgia is not the result of some food we eat or some action we have failed to take. It is a disease of the central nervous system. It is not something “made up” and it is not “our fault.” Again, I wish the solution were as simple as a change in diet, I’d be there in an instant. What helps are articles that support FM patients who struggle to “prove” their illness is “real” and not the result of lack of vitamin D, a nightshade veggie, or a missing supplement.
Thank you Dede for sharing. I want you to know that I respect and appreciate your perspective. Please don’t misunderstand my intent. I don’t believe fibromyalgia is the result of an inadequate diet, and I agree with you, I’d love it if dietary changes was the solution we needed to heal. I am just saying that some people experience some relief from their symptoms with dietary changes.
About 7 years ago I spent a year going to a fibromyalgia and chronic fatigue clinic. The lead doctor told me that a large percentage of people presenting with fibromyalgia symptoms turn out to be gluten sensitive and that most of them experienced substantial (and sometimes complete) relief from the pain and fatigue when cutting gluten from the diet. So I think it is crucial that we keep this as part of the conversation about searching for ways to manage the illness. Fortunately there is now a simple blood test (a skin test is not sufficient) instead of the elimination diet that I went through 25 years ago.
Thank you Karen for your support!
Dede, I agree with you. I would rather see articles about who to contact to demand additional research and funding as well as articles about FIBROMYALGIA AWARENESS MONTH that is fast approaching. (It’s the month of May, folks!) Yes, some of these herbal supplements and changes of diets may help with some symptoms, but what I want to help do is eliminate the word FIBROMYALGIA forever!
Thank you Karen and Robin. I do appreciate both of you. I am in a severe pain state today which always come with a certain level of despair and increased “unsolicited advice” about diet and supplements from those who do not understand. Please forgive me my frustrations. I am happy to know some are helped with a gluten-free diet. (This happens to be the “advice” I receive most often.) I’m a very joyful, very productutive FM paitient. But, for the past many days I’m hurting, a WHOLE bunch. I want to be out of pain, and sometimes, when it is this bad, I’m grouchy and hopeless. Forgive me.
Forgiven…hugs! ?
No worries here Dede. I also suffer with long flares and know that this illness is a CNS disorder. Since other CNS disorders (MS, epilepsy, Parkinson’s, etc) do not have cures or definitive origins I know that an easy solution may not be around the corner. But I am grateful that there is now at least some research showing that this thing is not ‘all in our heads’ or caused by some easily controllable factor. I will try whatever I can to minimize my symptoms … drugs, diet, lifestyle changes … it’s a constant battle. I hope that you can find some relief soon and that there is more research under way so that we can further understand and better treat fibromyalgia. ?
How were you all diagnosed?
About 25 years ago I had been having severe sinus congestion for over a year as well as multiple sinus infections and knew I had some sort of allergy. An MD / allergist was not able to help me except to give me antihistamine which didn’t help much. He told me that food allergies could not be determined by a skin test. I went to a naturopath who put me on an elimination diet for three weeks. Then I gradually reintroduced different foods until I reacted quite severely to wheat. I went off of all gluten containing products. An added bonus was that I no longer had my decades-long problem with IBS. My understanding now is that there is a blood test that will identify a problem with gluten. My rheumatologist gave me the test about 10 years ago and it came back negative. He wasn’t surprised because at that point I had not (purposely) eaten gluten for 15 years. I don’t know how reliable the blood test really is, as many docs still recommend an elimination diet.
Thank you Karen! Amen!
Jayne, my OBGYN, a man, has Fibro. He told my symptoms sounded like his. I was diagnosed by my primary care physician shortly thereafter. It has since been confirmed by my rheumatologist.
Em, I have two large plastic tubbies of medications tried and failed – just from the last couple of years! As everyone is different, what helps one may not help another. I have finally found a combo which seems to keep me ” stabilized” about half of the time. (I’m being generous as I just had a lumbar epidural that has helped with my overall pain.) My point is: we all know our bodies the best! My primary doctor said I was pre-diabetic, then diabetic -I had just had 24 trigger point injections with steroids, which increases your glucose and your triglycerides. She didn’t listen when I told her I had been getting these shots every 8 weeks for well over a year. The last labs were done 3 days after those shots when she declared me diabetic and put me on a medication that royally screwed my whole system up. Voila! The next batch of labs showed exactly what had raised my A1C- the shots! – as they were done weeks after getting them, not a couple days. A1C was back down into acceptable range. The docs don’t know everything…we must be our own best health advocates! I’m so sorry you’re having to go through this. I’m so sorry we’re all having to go through this!
Thanks for sharing. My daughter is 14 and was diagnosed 6 months ago with Fibro, Hashimotos, Vitamin D deficiency and anxiety. Yes all at once. My happy go lucky girl isn’t the same. She was so depressed I had to admit her. Breaks my heart. I’m giving this a go and if it fails onto something else but I wont give up. Best wishes to all
Tami,I’m so sorry your daughter was diagnosed. It’s not uncommon for those of us with fibro to also have thyroid disease, vitamin D deficiency, anxiety and depression. Both of my daughters also have fibromyalgia. My youngest was diagnosed at 16, she also has scoliosis and has back pain all the time. She’s now 23