arrow29 Comments
  1. Sasha
    Sep 09 - 2:38 pm

    Argh, that’s a bummer that quinoa and buckwheat might also be off the menu if gluten is a problem. Some months ago I cut out wheat and within a day, was able for the first time in years to lie on my side and breath through my nose at night instead of my sinusitis rapidly clogging it up. So I stayed off wheat and switched to quinoa and buckwheat. That was a while back – but in the last few weeks, that night-time problem is back. I had thought it was maybe hay fever but argh…

    Still, better to know than not know. I’m running out of ideas for what else to have for starch, though. I’m already on sweet potatoes for two of my meals as the starch portion. I had thought quinoa and buckwheat were OK because they’re seeds rather than grains (though I’m not sure of the difference, since surely grains are seeds?).

    • Cort Johnson
      Sep 09 - 2:53 pm

      Maybe Niki can join in here. In the next post she’ll talk about how to repair the damage; hopefully so that the sensitization really dies down.

      Are you rotating those foods? I eat sweet potatoes and potatoes quite a bit and, honestly, for me, I think I should really cut down starch….but I think that’s another issue.

      • Niki Gratrix
        Sep 09 - 3:29 pm

        Hi Sasha

        The only foods it may be prudent to avoid in addition to gluten are the confirmed ones that tend to cross-sensitize, which is all dairy, coffee and milk chocolate. Most oats are contaminated with gluten (in the delivery trucks).

        Generally there’s no need to avoid the other foods like buckwheat and quinoa without at least first testing them, which you can do with the Cyrex Labs testing array for cross-sensitivity.

        Personally I wouldn’t eat all genetically modified versions of foods either (which are mainly soy and corn). I’d eat them GMO-free…More will be written about that in part III of the article series.

        • jonathan
          Sep 09 - 4:23 pm

          According to Aristo Vojdani coffee per se is not a cross reactor. It has been instant coffee that has been shown to be cross reactive and not fresh coffee. It is postulated that this is more likely to be caused by contamination in the manufacturing process. “Instant coffee is reactive at 20% to anti-gliadin antibodies, a significant finding that often reflects the presence of wheat fractions in the factory. Yet when we tested espresso from five different well-known coffee houses, we found no reactivity due to anti-gliadin antibodies. We also found no reactivity in tests on coffee beans purchased from Israel, Turkey, Greece, Colombia, and Brazil. Therefore, coffee beans do not appear to be cross-reacting with wheat, but some instant coffees are apparently cross-reactive due to contamination. These results indicate that drinking pure coffee, but not instant coffee, is safe for individuals with gluten sensitivity and celiac disease as long as these individuals do not have a classic allergy to coffee.” (Vojdani A, 2013, Enhanced Testing for Gluten and Food Sensitivity Townsend Newsletter January 2013)

        • Sasha
          Sep 10 - 2:54 am

          Thanks Nikki – I’m already avoiding that other stuff :(

          I’m in the UK and don’t have access to Cyrex Labs. How well-established/sensitive/specific are the tests? Would a conventional doctor recognise them?

          I’m stopping buckwheat and quinoa for a few days to see if it affects my sinusitis. I really hope it doesn’t – I’d really miss them!

          • Niki Gratrix
            Sep 10 - 11:06 am

            Hi Sasha – good news, Regenerus Labs are due to become the Cyrex Labs agent in the UK in December this year –

            Bearing in mind a large part of this article was called “The 10 Facts your Doctors are Unlikely to Know About Gluten” – most conventional doctors are not up to date with the research. This is despite the fact the main aim of this article was to summarize the key facts from 19,000 papers already published in the main stream medical literature – it’s a case of patients being more up to date than the doctors if you read this material I’m afraid.

            It’s better to base knowledge on what the expert researchers in the specialism are saying than your local GP. Cyrex is state of the art testing, i understand the lab is currently double checking all tests at the moment, the testing will be more sensitive and specific for Non Celiac Gluten Sensitivity than anywhere else on the market at the moment…

      • Sasha
        Sep 10 - 2:55 am

        Hi Cort – no, I’m not rotating them. I’m having quinoa instead of toast, basically (which I used to eat for breakfast and last thing) and buckwheat instead of toast (which I used to snack on when I was hungry).

        Ah, toast…

  2. italass
    Sep 09 - 4:46 pm

    Autoimmune Disorders Occur Ten Times More Commonly in People with Celiac Disease (CD) Than in the Normal Population does not mean that more people than may be expected with ‘autoimmune’ (jury is still out on that one) disorders like fibro/CFS/ME have all of these gut/food sensitivities. Anyway, there’s a world of difference between correlation and causality.

    I’m starting to get exasperated by some of the posts on this site, I signed up in the hope of getting some serious, up to date info about state of the art research taking place in the fibro/CFS/ME research community and keep finding slightly dodgy science/leaps of faith and it’s all in your guts stuff. I’m not convinced that there is much in common with the (horrible if you have them) gut diseases and fibro/CFS/ME, much as some would have us believe (especially private healthcare/health food/1 day training course providers). I’d be happy to be proved wrong, but there is currently no tangible proof that there is much of a correlation, even. More than this, I just don’t find the above to be a very well written piece.

    It may well be that for a tiny minority, there is an association between gut and autoimmune diseases, but I am starting to get cheesed of with all this baloney about those of us who have illnesses that leave us cream crackered. I am living working in Africa where most people are grateful to eat food, of any kind, most of which is heavily starch based, because people need the calories and to keep ‘belly full’. That’s how it is for most people in the world. People eat the starchy foods to stay alive, and to be honest most people absolutely thrive on them. People in the West are spoiled silly about food. Enjoy the ride, because in 10-20 years we’ll be thankful to get what we can.

    And now I am deprived of it, If only I could get decent, bread, yes, wheat, lovely wheat, I’d be so happy. I don’t eat chocolate despite working in the second biggest cocoa producing country in the world and it’s got nothing to do with what it may or may not do to my health, and everything to do with the health and impoverished conditions of the people who labour to produce the raw materials that go into making it. But right now I’d kill for a decent cup of coffee, much as it probably isn’t that good for me, but I haven’t had one for months.

    There is a tiny minority in the general population that have gluten sensitivities. Celiac disease and the like is a bummer for the small number of people that have it, but most of us fibro/CFS/ME sufferers don’t, thankfully. Can we have some more of the cutting edge research on fibro/CFS/ME, please, a
    and less of the Dr O’Bryan’s 1 day training courses/DVD sales pitches, or I shall be voting with my unsubscribe button.

    • Cort Johnson
      Sep 09 - 5:03 pm

      Tell me what you really think :).

      We’ll see how it all turns out Italass. After my recent success with a dietary change I’m more and more interested in diet. I do think the problems with celiac and gluten sensitivity are pretty well substantiated in the literature, and it’s an area that I, as a person with ME/CFS, haven’t had much exposure to. Whether that’s because its not present much in the ME/CFS/FM communities or because it’s been missed by doctors and patients, only time will tell. I was eager, therefore, to hear what Niki had to say.

      I do recognize that many people have gone the diet route without much success but that its been varying degrees of helpful for others. I wonder if that’s kind of par for the course for these rather heterogeneous illnesses – that most treatments work for a minority of patients.

      We’re focusing on diet at the moment; if you stick around I think you’ll find more of the blogs that attracted to this site in the first place.

      • Niki Gratrix
        Sep 09 - 5:25 pm

        There is an indepth discussion in the final part 3 of this series of articles about the connection between CFS and celiac disease, the percentage that might have it and the fact it is important enough researchers have stated it should be part of the differential diagnosis for CFS, so many of the direct connections with CFS will be covered shortly.

  3. Ess
    Sep 09 - 6:02 pm

    In reading the above with interest re diet–Celiac disease (CD) and NCGS (non-celiac gluten sensitivity) — I have information to share that I hope will be helpful to others.

    In 2005 I was diagnosed by a Gastroenterologist doc as NCGS–and have been on a strict gluten-free diet ever since–8 years now; I have small amounts of dairy only occasionally—NEVER gluten–really takes the body down, etc., etc.! My adult daughter also has NCGS and must adhere to a strict gluten-free diet as well.

    In 2007 I became verrrry ill after a surgery–just wasn’t recovering from a successful surgery; in the fall of 2008 I was diagnosed by my Internist doctor with ME/CFS. (AND, at that point, I had already been eating gluten-free for three years.)

    I am pretty much ‘house-bound’ and as such unable to work. Usually I get out of the house once a week and that is a PUSH–as is everything with any kind of activity with ME/CFS. Obviously, eating gluten-free is NOT the cure for ME/CFS–however, it is necessary if one has CD or NCGS–and could impact on ME/CFS.

    Peripheral nueropathy is mentioned above–I was diagnosed with a mild peripheral neuropathy in 2008 (symptoms occurring for years before)—in my latest nerve conduction test–June 2013–it showed improvement in the peripheral neuropathy AND I can also feel some improvement with the neuropathy. The Neurologist doc felt that the improvement in the neuropathy could be due to the gluten-free diet!

    MORE—my father also had peripheral neuropathy AND cerebellar Ataxia—and the specialists say that it is quite possible that he also had undiagnosed ME/CFS. My father did NOT eat gluten-free and that became suspect (gluten) with the neuropathy and the ataxia. By the way–I started having balance problems, felt like I was walking like a spastic and was occasionally walking into walls (ataxia)—and once eating gluten-free that stopped!!

    There is more to add to the picture as to how ME/CFS came along — intestinal parasite in 2003–lead to IBS–(going gluten-free helped with IBS–still have some issues with this because of ME/CFS). Parathyroid disease and surgery to remove tumour in one of the four PARATHYROID glands in 2004 — this is an autoimmune disease in the ‘endocrine system’–parathyroid glands are located behind the thyroid. Thyroid is mentioned above; there is usually not mention of ‘parathyroid’ — most of us have never heard of it.

    Interesting with all the connections above–I hafta tell you–altho necessary/mandatory for some of us–eating gluten-free is NOT the answer to curing ME/CFS.

    • Cort Johnson
      Sep 09 - 6:11 pm

      Hey, nobody ever said this disorder was anything but complex. Staying away from gluten helps you feel better but you have a long way to go. It sounds like you have intestinal and other issues above and beyond the gluten plus autoimmune stuff.

      Thanks for relating your experience..:).

      • Ess
        Sep 09 - 8:05 pm

        Hi, thanks, Cort and also to Niki. The reason I mentioned the intestinal and autoimmune–and neurological conditions–is because these were all mentioned in the info regarding ‘gluten’. Soooo, proof in the pudding, so to speak on that! I did experience these health problems BECAUSE of gluten.

        CD and NCGS are separate medical conditions apart from ME/CFS–BUT can be comorbid–i.e., occurring @ the same time.

        Having experienced gluten-sensitivity (NCGS)–and feeling awful with that—and then being well and feeling good after going completely gluten-free — AND then a few years later contracting ME/CFS—I can tell you that eating gluten made me feel very unwell—BUT–ME/CFS — no comparison—far worse and life-restricting/debilitating !!

        IT sucks and sure would be nice to find the answers and get our collective lives back.

        By the way—as a person with diagnosed ME/CFS, I agreed to be a research participant in a medical study investigating ‘Complex Chronic Diseases’ (Canada)—have had the testing—it will be a while before the results are out. You are right–ME/CFS is a complex chronic disease–another reason why I mentioned the other medical conditions—body ‘down’—easy for the nasty ‘whatever’ to walk in and/or resurface–and let ME/CFS ‘attack’—darn thing is—it does NOT go away–nor do we ever wake up feeling refreshed and ready ‘to go’ for the day.

        The only good thing about getting ME/CFS in ‘this day’ is that there is now so much attention given–after the XMRV ‘stuff’–they KNOW it is a ‘biological’ disease–that there is much research going on world-wide. It is so important to get answers–not only for the collective ‘us’—BUT for our offspring–as there is deemed to be a genetic component–and this seems to be the case in our family. The medical people want answers because more and more people are being diagnosed with this horrid ridiculous disease!

        Never give up–who knows what might be around the next corner :)

    • Niki Gratrix
      Sep 09 - 6:52 pm

      Hi Ess – yes seconding Cort’s comment there about thanking you for sharing your experience.

      I have to agree that what we’re finding is that a percentage of CFS/ME patients will need to go gluten-free, but it is not enough – it is an absolute necessary for that group – but it’s not always going to be enough on its own for complete recovery. If people with confirmed CD still develop osteoporosis and show nutrient deficiencies and leaky gut even after 20 years on a gluten-free diet – it confirms more intervention is required, just being gluten-free alone wont fix it all.

      Healing any leaky gut and identifying any other sources of gut inflammation (parasites, use of antibiotics etc) is going to be top priority – and something I will be covering in a new set of articles.

      But I also think for some there may have been a level of damage done to the immune system, fats, proteins and mitochondria already which may need regenerative medicine approaches for some (e.g. stem cell), and of course there are a whole range of chemicals in the environment which have the same autoimmune impact as gluten (to be covered in an even later article), electromagnetic stress may be a new factor and psychological and social and cultural aspects – so I agree again with Cort. This aint simple!

  4. Cort Johnson
    Sep 09 - 6:25 pm

    To get a positive note in here (!) someone with a success story just commented on the last gluten piece

    “I suffer from CFS. It started long ago when I was 12 yrs old after I got mono. The fatigue just never left. I am now 34 & the fatigue is much, much worse. Over the last 8 yrs a lot of random symptoms have gotten much worse & through my extensive healing, a few have gotten better. In regards to this article, completely cutting gluten out wiped COMPLETELY wiped out all of my joint pain!

    I highly suggest for anyone who suffers from any health issues to do an elimination diet & slowly reintroduce foods to see if you notice a difference w/ any of your symptoms. Or you have the opition to get a blood test done to test your IgG antibodies to certain foods.

    I started eating gluten again thinking I needed some in “my system” to get an accurate test. The way I felt the next day was enough confirmation!

    The test was $560… A lot of money when I had the answer I needed on my own.”

    • Carole
      Sep 10 - 10:58 am

      I realize this may not be completely on subject- but I am on a Gluten free diet. I am Gluten Sensitive not Celiac. It has helped but I find anything fried also
      upsets the applecart.
      One point I want to make is- I do Animal Rescue. We get dogs that are very abused and sick. I have found that a Grain free diet (Pricey) gets all of them back to normal quicker than a reg dog food with wheat or corn. Actually have had ear infections cleared up with just a diet change. Vets are way ahead of the Md’s in a lot of nutrition focus. This may not seem important to you who eat what you want. However, Even a bowl of oatmeal can set me off for a week. Gluten causes us to have more Mucous!!!!!!!

      San Diego #1

  5. Cecelia
    Sep 09 - 6:28 pm

    I enjoyed reading italass’s comments and have similar views. Gluten sensitivity seems to be the new one-size-fits-all “explanation”. We have been through this before with Lyme, B-vitamin deficiencies, toxic poisonings, dental poisoning, etc, There are indeed some who have these issues and who benefit from the recommended protocols, but others of us, who have labored for years trying to revamp our diets and lives with each new fad diagnosis, find that we still have ME/CFS. I avoid all these diagnostic crazes now, especially the ones for which there always seem to be “no accurate tests”, or the only ones which are accurate are obscure and expensive and you could never talk your local doctor into ordering them. A diagnosis you can’t be sure you have but which explains supposedly every symptom, with expensive or arcane treatments that run to extremes such as throwing out all your food, or moving out of your house, etc., now seem suspect to me, just on the basis of the pitch. Structurally they do now seem to me like a leap into quackery and the placebo effect for the sake of maintaining hope. Yes, some have these particular ailments, and hope is important for everyone, but these one-size-fits-all diagnoses and cures can make people a lot more hopeless when they don’t pan out. They function like temporary highs, “A diagnosis! A treatment!!, however expensive they are in terms of time, money, energy, effort and sacrifice– in fact, the more extreme and arcane the better, it seems, for attracting new adherents–but the hangover or crash later on when they fail is never mentioned.

    • Cort Johnson
      Sep 10 - 10:22 am

      I would never dream that anything would be a ‘one-size fits all solution’ for this disorder. Our history – with one person doing well on something which has not affect on somebody else – suggests that’s just not possible.

      I think the unfortunate truth is that if you have ME/CFS you have to spend the time and money (if you have it) to go through alot of different trials and hope that something works out – knowing very well that nothing may (!).

      The goal here is not to find the one-size fits all solution but to provide a broad range of treatment possibilities that fit for some people. Nothing is going to work for everyone but for those who get benefits the search is probably worth it.

      I wish it was less frustrating and easier (and less expensive) :)

      • Christian Godbout
        Sep 10 - 4:51 pm


      • Cecelia
        Sep 12 - 6:29 pm

        You put it into perspective very well, Cort. Some people out in the world, however, come on very strong these days for a gluten-free diet, and I have developed an allergic reaction to this pitch. What would help me the most, probably, is a whole lot of fasting, but I don’t want to do this either, for obvious reasons. Yet fasting seems to help my body put itself into better order–

  6. Pendergast
    Sep 09 - 8:53 pm

    Through Google Translator :

    In the end the solution will be eating nothing directly. I think that instead of thinking in countless foods that harm us and cause the diseases or modulate them, the more I am inclined to think is that the disease itself, with all viruses , parasites , bacteria and inmune issues causes the food problems.

    I’m not saying that diet is not important or have influence on the CFS and others but It dont have the relevance that arises I mean.

    It is impossible for a sick person to do all these tests and have some kind of guarantee to start a complex and strict diet .

    I was diagnosed with CD based only on Marsh 1, but after testing deeper, diagnosis was discarded ( The marsh 1 never appeared in subsequent biopsies). But if I am guided by the article, I can’t be sure of anything!

    I did a GFD for 6 months and did not notice much. Genetic testing and antibody negatives too .

    Finally thank you , Cort, for the web. I learn a lot .

    A big hug from Spain

  7. Anne
    Sep 09 - 8:58 pm

    In contrast to a few other comments I just wanted to say how much I appreciate the focus on the digestive system. I have been following Ken’s recommendations and they definitely been helpful. I have been gluten-free for three years and that step greatly reduced my bloating and GERD within a week. Almost everyone I know with ME/CFS has some digestive problems, whether IBS/GERD/IBD or gut pain so I don’t think focusing on the gut is a distraction. There is a ton of evidence that there is a large change in intestinal permeability and gut bacteria in most auto-immune diseases, CFS, and autism and reason to believe that are contributing to some (and potentially all) symptoms in this seemingly diverse set of illnesses. I know most of our experts think our gut problems are downstream, but I suspect they hint toward the root of the disease.

    Going gluten and dairy-free hasn’t healed anyone I know, but almost always reduces symptoms. When I am careful about diet my POTS is greatly lessened and I feel much less light-headed. Unfortunately healing the gut is not easy since there are still a lot of unknowns, but it’s worth aiming for.

  8. Jan
    Sep 10 - 10:40 am

    Thanks Cort for this series – I appreciate the information on digestive issues! It finally occurred to me that years (decades) of stress, probably including that heavy exercise done prior to the onset of CFS/ME, had logically left my gut dysfunctional. With a recent worsening of IBS symptoms, my primary care provider (a PA) recommended a specific digestive aid. In this first month of use my digestive functioning has improved to the most “normal” it’s been in years. I still have CFS symptoms of course and don’t expect a cure with this approach. I find that improving any symptoms helps the whole to some degree.

    Fifteen years ago I used the elimination diet for gluten and had that “aha” experience of realizing my joint pain was gone. Budget and convenience made sticking with gluten-free eating difficult and I resumed my old eating habits. Ten years ago I got testing confirmation of gluten sensitivity and went gluten free for several years. The same derailment of budget and convenience happened again.

    This series has reminded me of the potential benefits of an improved diet and has motivated me to transition back to gluten (and dairy) free eating. I’ve learned in the 20+ years of CFS/ME symptoms to fix what I can and enjoy the benefits that come. (I use the same approach with chiropractic care: it doesn’t “cure” CFS/ME but fixes what’s fixable!) Thanks again Cort and Niki!

    P.S.: Niki, can you include a glossary and/or phrases to accompany acronyms in upcoming articles? If so I’d be grateful as either would allow me to absorb the information easier :)

    • Cort Johnson
      Sep 10 - 10:44 am

      Thanks Jan for sharing your experience. Glad to hear you got some help out of altering your diet.

  9. Cheryl
    Sep 10 - 7:30 pm

    I have had GI issues since I was 10 years old. I have had ME for 10 years and tested positive to multiple viruses in my RNA. My GI issues seem to be climbing a severity ladder as the number of co-morbidities that I have increase. I have had phone consults with Dr. Chia and he has tested GI biopsies I have had done and found sevral strands of echoviruses in them. A year ago I took myself off of gluten and “dabbled” in that realm. The longer I went without gluten the less my gi symptoms were. Now I rarely eat anything out because it hurts so bad when I am accidentally exposed to gluten. My next step is going to a Celiac Specialist. We have a center in Chicago that runs all the right tests but my appt is not til December. I have no doubt in my mind that some subsets of us have co-related gi issues. Dr. Montoya has said that they have seen some ME patients cured from a gluten free diet. This really is important info that many are not aware of, IMHO. Thanks Cort.

  10. Renee
    Sep 11 - 9:48 pm

    Thank you very much for this series on gluten sensitivity. I am very much looking forward to the next article.
    I was curious if Niki is also a proponent for those with autoimmune issues to cut out nightshades, seeds and nuts from the diet too? Will this be addressed in the next article?

    Thank you again.

    • Niki Gratrix
      Sep 12 - 7:31 pm

      Hi Renee

      Thanks for you question – which is actually slightly complicated! Even with people with autoimmune diseases I wouldn’t automatically just eliminate gluten, I’d test for CD and NCGS, leaky gut and gut inflammation, then asses if gluten should be avoided long-term based on test results and the results from clinical intervention to heal the gut lining and so on.

      Now an issue is, if you have gut inflammation and leaky gut – this could have been caused by using antibiotics, a genuine gluten sensitivity, or a parasite for example, the result can be increased sensitivity to many foods because of undigested particles getting through a leaky gut lining. If you have gut inflammation, you may also be more vulnerable to foods high in lectins (which are high in the nightshade family for example).

      So it’s tricky, you want your gut to be 100% healed, any genuine food, drug or bug which is going to cause permanent long term gut inflammation would need cut out. Then you might be fine on nuts/seeds/the nightshade family!

      Everyone is so different and for some, they may well have a genetic propensity to permanently react to the nightshade or some nuts and seeds the same as gluten, if that were the case you’d just keep having chronic leaky gut and inflammation until you removed these foods while on a gut healing program!

      I’m going into gut healing in much more depth in the next series of articles after part III.

      It’s also tricky with CFS because we don’t want to encourage fanaticism about food and increased stress and worry either! Eek:-)

  11. tatt
    Sep 20 - 1:17 am

    I am one of the people who encourages everyone to try a gluten free diet. It has not cured my fatigue problems but it did give me a normal life for quite a few years before excessive exercise provoked a relapse. I am now recovering again. A coeliac blood test is not expensive, a gluten free diet is difficult at first but becomes easier in time (except when travelling).

    I’m only too aware that it isn’t the whole answer. My suspicion is that it reduces inflammation and/or improves the immune system. A months trial should tell you if it helps – not much for a possible massive improvement in health, even if it doesn’t last forever. For me brain fog was the first thing to go, then I became able to do more physically.

    As for the person who had problems with mucus – can I recommend N-acetyl-cysteine and that you consider putting a block of wood under the head of your bed to raise the head about 6 inches. You may want to start with 4 and then increase as it feels peculiar at first. Night-time reflux (often missed by doctors) provokes sinus problems for me, NAC thins mucus. One or both may help.

    Personally I suspect the gut is at the root of my problems and I’m trying different probiotics. So far the best I’ve found is actually a prebiotic (see below) but some of the research found through ME sites means I’ll try others.

    For those unable to face GF these are what I use when travelling In the UK you can get them here

  12. Suzy
    Nov 26 - 1:44 am

    Hi. I was diagnosed with M.E. 6 years ago and have become bedbound these last 3 years. I took a leap back into the medical arena for answers and thanks to prof Mathias in London was diagnosed with PoTs and sucessfully treated. A year on an mri scan with pituitary contrast revealed that I had lost more than %75 of this crucial gland and explained my almost non existant hormonal output which was also causing secondary Addisons Disease. So i’m hoping that the hydrochortisone will show some improvement in the long term. It was then discovered that I was running high levels of histamine and after further testing by a dr Senerviratne was found to be allergic to gluten and dairy etc. So I am on a very strict diet eliminating all foods high in histamine, those that cause cells to release stored histamine and gluten free, dairy free. Sounds hard but I really only had to tweak what I was already doing. This area is really about mast cell activation disorder and is maybe slightly more comprehensive? Have you Niki/John come accross this? I am only just starting treatment so it’ll be quite sometime before i’ll see any improvement.

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