Are ME/CFS Patients Suffering from Gluten Intolerance?


I have been reading a very interesting book by Dr. Stephen Wangen, the gluten-free doctor, Healthier Without Wheat and I have found the book to be rather fascinating. I wrote recently on Fighting Fatigue about how Celiac Disease can be misdiagnosed as ME/CFS but I never realized that Celiac Disease is only one type of gluten intolerance.  You don’t have to have Celiac Disease to have an intolerance to gluten-containing products.

While reading this book I have discovered that many of the symptoms that we suffer from with ME/CFS are also common symptoms that people who have a gluten intolerance suffer from.  Here are some of the symptoms of gluten intolerance in adults:

  • Diarrhea
  • Constipation
  • Heartburn
  • Abdominal pain
  • Headaches, including migraines
  • Fatigue
  • Muscle aches
  • Joint pain
  • Hypoglycemia
  • Eczema
  • Acne
  • Mental fogginess
  • Anemia (iron or B12 deficiency)
  • Frequent illness
  • Itchy skin
  • Low bone density

How many of the above symptoms can us ME/CFS patients say we have?  I can check off most of these. 

Emotional symptoms experienced by gluten intolerance include:

  • Anxiety
  • Irritability
  • Depression

It just amazes me by reading this book how much I can relate to the examples he includes from patients who have suffered from gluten intolerance and/or Celiac Disease.  The more I read the more convinced I become that I need to try an elimination diet to see if I notice an improvement in any of my symptoms.  I have thought about doing this many times before but I have never followed through with it because I love products that contain gluten, particularly bread.  Wheat bread is my favorite and I eat sandwiches almost every day for lunch using wheat bread.  It is going to be a hard habit to break but it will be worth it if I start to feel better. 

Here is an excerpt from Healthier Without Wheat on gluten intolerance:

Many people, probably many millions of people, have a non-celiac form of gluten intolerance and experience one or more of these problems (see the list of symptoms I wrote above).  Because the conditions associated wtih  non-celiac gluten intolerance have more than one potential cause, and because so little research has been done on non-celiac forms of gluten intolerance, it is difficult to say how often these symptoms are caused by a gluten intolerance.  It is possible that gluten intolerance is the cause far more often than most people currently suspect.  Recent studies estimate that non-celiac forms of gluten intolerance are approximately 30 times more common than celiac disease and may affect up to 15% of the world’s population.

I’m not a physician, nor do I tend to make this post sound like ME/CFS is caused by gluten intolerance.  I am just wondering if maybe my particular situation couldn’t be helped by cutting out gluten products.  I am going to finish this book, do a little more research, and go shopping for some gluten-free food items to see if after a few months I notice an improvement in symptoms.  It’s worth a shot and what’s the worst that can happen? 

Have any of you ever cut out gluten and noticed your symptoms improving?  Let me know!

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  1. I did see an improvement after cutting out wheat, corn and soy. I would run the other direction from most gluten-free products on the market today because they usually rely on questionable and harmful additives to mimic wheat products. Try going completely bread free instead for a couple of weeks (we can do anything for a couple of weeks, right?). You can always learn to make gluten-free bread if you feel you need it later. I would also suggest going corn-free since it was the source of most of my intestinal symptoms and inflammation. It is much harder to go corn-free than it is gluten-free since corn is in everything including white rice, salt, shampoo, lotions, medications, vitamins (including those in vitamin enriched products), toothpaste, cleaning products, frozen and canned vegetables (citric acid), pretty much everything in a package, box or bag (and sometimes in the package itself). Take a look at ubiquitous nature of corn in our lives may be the key to our problem digesting it, at least that is what I believe after ten months of pain management using dietary restrictions.

    I urge you to try a couple weeks on the test diet listed here: It is a diet designed to exclude MSG and other free glutamic acids but it also works well to eliminates corn and soy since most processed free glutamic acid is derived from those two scourges. In fact, if you are a bread lover, you may be pleased to find out that it is the additives in commercial wheat products that actually give you problems and not the bread itself.

  2. I have always had severe seasonal allergies(wyes would swell shut regularly, eyes would weep etc..) When I got into my 30’s I started to get catch every virus that came my way. I even started getting sick with wierd things that people with a good immune systems usually would not get. The final straw was when I started having insomnia. I went to a couple of doctors would had no solution for me other than they were willing to give me sleeping pills. The insomnia lasted for 2 years! Finally, out of desperation, I went to a Nauturopath. After a blood test, he found that I had allergies to wheat, gluten, dairy and some other random foods. I immediately changed my diet and lost 16 pounds within 2 months (my doctor said that I could have been swollen inside from constant ingestion of foods I was sensitive to). My seasonal allergies disappeared and I have only had 1 cold (lasted 2 days) and that is in a whole year!! I did not have any other symptoms to tell me that I was having problems with these foods, but my immune system was so busy fighting the foods that it was not keeping me from getting ill. My son has the same allergies as I do and he had severe eczema on his legs (bleeding and crusty). Elimintating the offending foods and treating him with Difucan cured him 98%.

  3. I forgot to mention that the Naturopath I went to found that I was extremely low in vitamin D. After I had been on the vitmin D about a month, that is when I started to get over my insomnia. I take 5000 IU a day at his specific recommendation. It is important to find vitamins that do not have wheat or gluten in them as many do. I use Thorne vitamins. I also take a B complex as it helps with my energy levels during the day.

  4. Thanks Deborah for your comments. I also have severe insomnia that I have not been able to get help for. I am trying to get this book finished and then I’m going to cut out gluten. Thanks again!

  5. Ros Bowness says:

    I have been under Dr Myhill in Powys since august 2008 and was diganosed with CFS then and confirmed lated with the mitochondrial tests. The first thing she did was put me on the ‘stone age diet’ as she felt I was allergic to wheat and dairy. A very common allergy. I found it relieved so many of the symptoms that helped cope with the rest of the CFS problems. If I am ‘naughty and have anything I shouldn’t boy do I know it!!!! Not only that I was eating, a problem I had, eating more healthily and I lost 3st in weight from june 2008 to date. It certainly is worth looking at the gluten free products, some are very dry but many are quite nice and it means you are not the odd one oout at parties or family gatherings.

  6. I also experienced a huge improvement in symptoms from cutting out gluten, casein (dairy), soy, corn and sugar — my personal food sensitivities. I had had myofascial trigger points for as long as I could remember in my neck and shoulders and they went away within six months of giving up these foods. Low-level depression and anxiety, as well as other symptoms, also improved about 90 percent. It was not (and is not) easy, but without question it has been so worth it! Please give an elimination diet a try. I resisted for so long for the same reason you did — I love my bread! — and then read several places that we often crave what we’re sensitive to.

    If you think about it, it makes sense — we are super sensitive to things like medications, so why not foods? It still remains to be shown whether this is a cause or result of having FMS. I wonder if the new findings about XMRV will show a link. So, XMRV affects our immune response and as a result, our system becomes over-activated and reacts to otherwise benign things, like “foreign” foods in our bodies.

  7. I have experienced fairly severe fibromyalgia symptoms since I was 15 years old–a long 20+ years of pain, fatigue, rashes, insomnia, low blood sugar, and digestive issues. It was a struggle to maintain a career, care for my family, or simply have something of a life. The digestive issues seemed to really pick up in the past couple of years, despite my efforts to ‘eat right’ and exercise. Doctors were not of much help. I was desperate.

    It never once occurred to me that what I was eating was the actual issue. Thank goodness for the internet! I read a few articles on the potential connection between fibro symptoms and gluten intolerance and immediately decided to try eliminating gluten from my diet. The changes were immediate and remarkable! My digestive issues and feelings of low blood sugar improved tremendously within days, my rashes cleared, and the frequency and severity of brain fog and pain have greatly reduced. It has been 7 months since I have been gluten-free, and while the fibro is not 100% gone, the improvement is completely worth the effort of the gluten-free diet. I feel as though my life has been given back to me. Though I LOVED wheat-based foods, nothing tastes as good as being healthy feels.

    There is no harm in trying a gluten-free diet and the potential of great benefit. Keep up your research and best wishes to you in your journey to health.

  8. I think you should definitely try it. The following is a concise description of what happened to me and why I believe all CFS/ME patients should look at their diets. I was diagnosed with post-viral fatigue, but refused to believe that my body remained fatigued and run down for another 8 months after I’d had a virus. Doctors were on the verge of upgrading the diagnosis to chronic fatigue syndrome when I had a bad cold that turned nasty. To avoid a secondary infection I was given antibiotics. Within 48 hours of starting the antibiotics my fatigue disappeared! I went back to the doctor and refrained from saying I told you so. We then worked out that I’d had a sinus infection. I spent the next 12 months with recurring sinusitis, which created the same fatigue and aches that I’d suffered with during the post-viral fatigue. (Google sinusitis and CFS and you’ll find a few articles about CFS people wrongly diagnosed when they had chronic sinusitis.) The interesting thing is that my sinusitis wasn’t obvious – my nasal mucus was clear, not yellow or green and I didn’t have sinus pain below my eyes. The worst symptoms were fatigue, ear pain without ear infection and migraines at night at the front middle of my forehead, especially when it was cold. Before I got the virus I had gone without wheat and dairy for several months as my daughter was dairy and wheat intolerant and I was still breastfeeding her. I suggested to my doctor if it’s possible the reintroduction of wheat into my diet around the time of the virus was the cause of the sinusitis. She agreed so I did some elimination diet tests and she tested for caeliac disease. The results are that I’m a gluten intolerant inactive caeliac with a wheat allergy.
    I have the caeliac gene but the caeliac antibodies are inactive and should stay that way as long as I avoid gluten. If I eat gluten my brain fogs up, I become severely fatigued, my legs and arms ache, especially at night when I also suffer insomnia, I put on weight, I get clumsy, constipated and irritable. If the gluten is in a wheat product, I also get severe sinus infections, migraines and itchy skin. After the elimination dieting was over I discovered other small things that I’d not related to gluten or wheat, the odd twinges and sharp pains in the belly, my hair falling out and itchy scalp. I have since found that I need to avoid cosmetic products that contain wheat as these also cause my scalp/skin to itch and my hair to fall out.
    We believe I was always a little intolerant/allergic to gluten/wheat, but by eliminating it for several months and then reintroducing it my body has reacted more violently.
    When I first went without it for the same of my breastfed daughter, I lost 6kgs of baby weight that refused to shift and I had heaps of energy. We never realised that I’d done what my body had been subtly asking me to do for years. I’d always needed to keep blowing my nose and twinges in my ears for years, but thought everyone was like that. Then I got the virus and reintroduced wheat and the next two years were hell. Unfortunately, we don’t know if I reintroduced wheat or got the virus first, but either way it doesn’t matter, I must avoid gluten and wheat if I want to have a quality life. I still keep a little gluten in my kids’ diets, but I do try to limit it and the difference is obvious, especially in their behaviour.
    Hope that helps.

  9. I disagree with all this – the gluten intolerance is actually Candida sensitivity. It is a condition almost all fatigue sufferers have – CFS FM or other. Wheat is highly acidic and messed about with and Candida loves it – try cutting out sugar too and see how much more energy you have!That includes alcohol. There is also a range of foods in the US which is GM. Soy and Corn are GM I believe – with little natural produce of Soy and Maize. The GM foods will flare up gastrointestinal symptoms and will make you quite ill.

  10. Michelle Curtis says:

    I have suffered with CFIDS/ME and Fibromyalgia for several years now. I do not have Celiac disease, but I am extremely sensitive to gluten. In the three months since I have eliminated gluten from my diet, my cognitive and mental faculties have greatly improved, my energy levels have increased massively, my neuropathy and parasthesias have both improved, and my pain levels in general are way down. I went from being stuck in bed or a recliner 20 hours a day to being able to take one mile walks, hike short distances, do home improvement projects and go bowling. I have lost 17 pounds (I have been unable to lose weight for 3 years no matter what I tried) and I no longer need the medications I was on. My mental faculties had shrunk to the point where I was losing the ability to do math in my head and was unable to form cogent sentences. My husband was so concerned about my ability to reason and care for myself, he was looking for in home care. Then I quit eating gluten and started on a powerful anti-oxidant called glutathione and my whole world changed. I was given a second lease on life.

    I was astounded and somewhat boggled by these changes until I began reading ‘Wheat Brain’ by Dr. Perlmutter, who does an excellent job of explaining and presenting research on the effects of gluten and carbohydrates on the brain. He believes it is the reason for the spike in all neurological disorders and that it either causes them or exacerbates them, depending on the severity of the sensitivity. I highly recommend this book for anyone who’s interested in gluten and neurological disorders.

    Changing my diet changed my life and I’m convinced eliminating gluten could improve the lives of many ME sufferers.

  11. Tony Bailey says:

    My wife had ME for 10 years. When I went to work she went back to bed and only got up for a few hours in the evening. She had NHS and private medical consultancy, tests, MRI scans, the whole lot. There was nothing they could do for her apart from give her a leaflet on pacing. In the tenth year, by chance, she went on a wheat and dairy free diet and recovered completely in months. She is now back working as a staff nurse doing 12 hour shifts 3 and sometimes 4 days a week. The proof that it was gluten intolerance is when she accidently had something with wheat in it, for example soy sauce, and reacts immediately. She now only eats unprocessed foods – meat, fish, potataoes, rice, fruit and veg, eggs and is living a normal life. What a waste of 10 years. We must get the message out there.

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