arrow35 Comments
  1. Issie
    Aug 30 - 11:56 am

    Diet is probably the key to us regaining our health. It’s the one thing we have complete control over —yet, it’s the one thing people refuse to change. No changes = NO CHANGE.

    If one is sensitive to something even a small amount is like eating poison. Would you take even one drop of poison into your mouth and not expect bad consequences? When a person has a sensitivity to something this is how your body reacts to it.

    My doc feels that many people are reacting to the arginine in wheat bread. It’s an interesting thought and I’ve found that high arginine foods seem to bother me. He feels that this helps to feed and make happy a protozoa and co-infection spread by mosquitoes and ticks that is similar to malaria and associated with Lyme disease – that I was found positive for.

    My husband is not a true celiac but strongly reacts to gluten and has Crohn’s of the esophagus. A very small amount of wheat and he has reflux and inflammation of his esophagus and a cough. He has to take allergy meds for this if he gets exposed to it. This does help him, he has to use both an H1 and H2 for this.

    I’m looking forward to reading your future articles. Job well done. I’m on board with you here. I think DIET is the key to our regaining our health.

    Issie

    • Cort Johnson
      Aug 30 - 4:44 pm

      Check this out from the New York times (http://www.nytimes.com/2013/08/01/booming/answers-about-rheumatoid-arthritis-part-3.html?pagewanted=all)

      . I caught a video on celiac disease. I had all the symptoms and then some. I changed my diet: no wheat or gluten. Within three days my joint pain was at least half what it was. No swollen hands and fingers, back pain was gone and neck pain too. I have a ruptured disc in my neck, but no more sleeping on heating pads to reduce the spasms in my neck and low back, for a few restful hours of sleep. No more antidepressants, no more pain pills. Three weeks now, and I feel like I’m getting my life back. I’ve been saying, I feel like 18 again, but I don’t look it at 56 years old. I want to tell everyone, gefore drugs, change your diet and cut out all wheat and gluten. The drugs are a deadly Band-Aid and if I only knew I would have never taken the drugs. Best of Luck, Barry W. — Bear8357, America

      The Doctors response was interesting….She kind of mildly pans it – pointing out where it doesn’t work, how expensive it is (why is it more expensive???), how difficult it is, how it doesn’t work for everyone…and then refers to classical celiac; she obviously has just sketched the surface. She does tie it with autoimmune disorders….In the end you feel kind of deflated :) instead of inspired by this persons experience. Hey, if it only happens in 5% of patients – that’s still 5%

      In my experience many try eliminating various foods or supplementing with others, but this doesn’t always seem work in the long term. It is difficult and expensive to be on a gluten-free diet. I have great respect for those who can maintain it. Of note, people with celiac disease ( who truly cannot tolerate gluten) can have joint symptoms, so this may explain the response to this approach in a few. Also both R.A. and celiac disease are autoimmune diseases and can occur together. If you have abnormal bowel habits, weight loss, unexplained low bone density you should ask your doctor if you have celiac disease. It occurs in 1 percent of the population, mostly in those of northern European descent. R.A. also is present in about 1 percent of the population.

      • Issie
        Aug 30 - 8:25 pm

        OHHHHHH, this could get me on a rant. What????? I’m using Dr. McDougall, Forks over Knives and Engine 2 diets as my vegan lifestyle choice. This is what has helped me in the last 7 months get onto the road to recovery. These diets advocate a low-fat, whole food, vegan lifestyle. There are scientific reasons for this choice. People who decide to go this route, don’t just wake up one day and decide I’m going to stop eating any animal products and eat no oil or processed foods —just because. We have to educate ourselves as to why this may be a healthier choice and then how to do it for it to be a healthy lifestyle choice. Anyone who is a vegan and knows about nutrition and vitamins – realizes that we need to take B12 and maybe iron and iodine. These are the three things my doc keeps monitored – along with Vit D.

        But, for someone to need empirical evidence and peer reviewed journals – is ridiculous. For one thing – lots of the papers are slanted to convey the opinion of the writer and even though it is peer reviewed – that opinion doesn’t lose translation if the basic idea can be supported with science. But, if you have a bunch of people saying something is making a difference and it continues to over time. My ears are going to perk up. If it has helped them, then maybe it will help me. If it’s a placebo effect —yayyyy! If it gets the results you want. Then don’t question where the gift came from. Lots of things will not get the money/grants behind them to show empirical evidence. But, if you have people reversing heart disease, arthritis, CFS, MS, cancer with something —even though it may not have the millions of dollars of research behind it to make the pharmaceutical company money —-then take note.

        The vegan lifestyle has lowered my grocery bill. It is a cheaper lifestyle. And I buy mostly organic. So, that’s no excuse to use. I’ve gone to the Farmer’s Market and taken $30.00 and bought enough veggies and beans to last me for 2 weeks. How much cheaper can you get? And I am gluten free too.

        Ha!Ha! Told you I could go into a rant about this. Better stop before I get a book going on this. :)

        Issie

  2. Brenda Elliott
    Aug 30 - 1:04 pm

    Getting off gluten and dairy and most sugar I am feeling remarkably better in these past ten weeks or so. My cognitive abilities have been returning to an almost acceptable level. I am sixty now and have to recognize I have lost some major brainpower in a decade of having minimal usage of it.

    I also went through menopause during some of that time and that also affects our brainpower. I have more energy and wake up more refreshed now than I have in years. I was sleeping 10-12 hours a night, now six or seven hours does the trick. My psychiatric nurse practitioner took me off of the gluten saying she could blame half or better of my symptoms on the gluten and dairy and she was right.

    Not as much drainage of the sinuses now that I am off dairy. I drink almond or lactose free milk. I miss some of the pastas and breads but it’s worth staying away from.

    I highly advise every single person who has any of these diseases to try the gluten free diet and those with chronic sinusitis to toss out the dairy goods. Sugar seems to affect my muscles and I get headaches too. I usually use Stevia now, on everything.

    • Cort Johnson
      Aug 30 - 4:34 pm

      Congratulations Brenda, getting off dairy and gluten products can be difficult. I noticed that lots of bread etc. made me feel foggy and tired and cause my joints to ache. Now I’m now removing all gluten from my diet.

      Niki’s statement that even small amounts of gluten can be problematic kind of woke me up. Congratulations on feeling better :)

  3. Cort Johnson
    Aug 30 - 4:49 pm

    That doctor must not have read this incredible story of a young boy with juvenile rheumatoid arthritis who recovered completely – but only after getting off of gluten for a full SIX WEEKS! This is what kind of keeps me up at night….

    Dr. Klimas also said you have to be on a diet for 6 weeks to tell if it’s working. Except for the macrobiotic diet I tried early on (in which I did feel much better at first (hmmmm) but then started losing weight like mad)) I’ve never been on a diet for six weeks in my life. Some wheat always crept in there…

    Anyway, check out this story..From a cripple really, to healthy – it’s amazing.

    http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=all

    • Issie
      Aug 30 - 8:42 pm

      Beautiful story. Makes your heart glad that these parents didn’t stop until they found an answer for their child that made sense. Now, he may have a life.

      There is one girl who has POTS on one of the forums that I’m on, that had ataxia (unsteady gait and walk – that required assistance). It took almost a year of being gluten free and this resolved for her. She tells everyone to get off gluten – because many of her neurological problems got better.

      Issie

  4. Janelle
    Aug 30 - 7:35 pm

    I think this is a great topic to bring up particularly to doctors. There is a huge rate of misdiagnosis and this seems to be something a lot of people don’t get tested for. My understanding is that they have new gene tests now which can help especially when the biopsy or antibody tests are indecisive, but no matter how good the test is, it won’t do any good unless someone orders it. :)
    http://celiacdisease.about.com/od/diagnosingceliacdisease/a/Celiac-Blood-Tests.htm

    BTW, I micromanage my diet and this helps control certain symptoms, but I am still severely ill and disabled.

    I am confused about total villous atrophy being required to diagnose Celiac because it looks to me like a Marsh score of 1 could be used to support this diagnosis (as well as other diagnoses). (total atrophy looks like a Marsh score of 4).
    http://celiacdisease.about.com/od/diagnosingceliacdisease/ss/MarshScore_3.htm
    Maybe this is a requirement unique to NHS? (Though I could think of a US HMO that I wouldn’t be surprised to find doing something similar.)

  5. tatt
    Aug 31 - 6:08 am

    I’d encourage everyone to try a gluten free diet. I suffered from fatigue, sometimes brain fog, depression, dizzy spells for years. When I went gluten free I had enough energy for trips to the gym and was gradually improving my fitness levels. The brain fog and dizzy spells vanished. However excess exercise caused a very severe relapse and I was more ill than before, I could barely get out of bed. So it certainly isn’t the entire answer for me but it gave me my life back for several years and might have been permanent but for my crappy gps advice.

    I have since improved thanks to vitamin D and N-acetyl-csteine and went back onto gluten for a month for a coeliac blood test, should have been 6 weeks really. My test was negative. During that time the symptoms didn’t recur but as I fear it may have been causing inflammation that would eventually cause damage I am again gluten free. It is more expensive and it’s tricky to eat prepared to food unless you are used to reading labels. I find travelling very difficult.

    When gluten is unavoidable I take Peptizyde enzymes (Brits can get them here http://www.mandimart.co.uk/afp-peptizyde-original-90-capsules-112-p.asp) to reduce the damage. There are other enzymes but these are available in the UK.

    Of all the interventions I have tried this was one of the best. I know others have gained nothing from it but everyone should first have the coeliac blood test, then give it a try for a month.

    • cort
      Aug 31 - 9:06 am

      Thanks Tatt, I think alot of people fit into your category – staying away from gluten helps and is not the answer but they’re very grateful for that 5 or 10 or 20% increase is wellness.

      Some doctors liken ME/CFS to leaking lifeboat; I can’t imagine with all the food and other sensitivities that gluten sensitivity isn’t one of the leaks in many peoples lifeboats.

      I don’t find being gluten free difficult at all at home; during travel – you’re right – its a real bear :)

      • Niki Gratrix
        Aug 31 - 10:01 am

        Hi Tatt, and others who have pointed out they went gluten free and got some improvement, and to others who may have gone gluten free and not improved at all, there’s some very important information coming up in part 2 of this series of articles about the fact that it is known many diagnosed cases of Celiac don’t improve on a gluten-free diet. It’s likely due to ongoing unhealed leaky gut and a self-perpetuating cascade of inflammation which has been triggered and which must be halted, so being gluten free is necessary – but probably not enough for significant improvement in some. Watch this space for part 2 and 3 where we’ll cover this.
        Best
        Niki

      • tatt
        Sep 20 - 1:38 am

        been away on holiday or I would have commented before – for me gluten free was not 5-10% improvement but more like 50% within a month and 90% over time. I thought I’d completely solved my problems and just needed to recover from the deconditioning. Sadly it wasn’t true but you see why I’m keen for people to at least try. And it doesn’t have to be too socially limiting as a standard meat and potato meal is fine if you don’t add gravy. In Britain there are even a few places where you can get gluten free pizzas and more restaurants include GF options all the time. I do encourage the trend by posting on the Facebook pages of places that don’t.

  6. Valerie
    Aug 31 - 8:56 am

    Hi everyone,

    I have had ME/CFS since 1990, but was not diagnosed with silent celiac disease until 2005. 15 years of unfound autoimmunity.

    I believe my celiac disease was triggered during the birth of my child. If genetically susceptible, it can be triggered by anything at any time. It could have also been triggered during a gut flu I had prior.

    Anyway, it was not found early enough and then I caught the flu which turned into ME. I believe that my gut was damaged at that point already by celiac disease, allowing the infection to invade gut to brain very easily (I have enterovirus diagnosed by Chia). Unfortunately the gluten and dairy free diet has not helped many symptoms at all and the healing is as silent as the active illness was even 7 years later.

    Everyone missed the diagnosis (and I had some good docs) because I did not have typical gut or deficiency symptoms so that is where the silent came in. My two sisters were also then diagnosed celiac. They both are in excellent health (unlike me) with no GI symptoms. So we are a family with silent active celiac disease. Weirdly, none of us feel better off the gluten and I am the only one due to ME to do the diet as strictly as required. My gut biopsy showed pretty healed within two years but not M.E. I was very disappointed.

    Gluten free labelling of foods is also interesting. One has to remember there is a tolerance of about 20 ppm on foods even if labelled gluten free and many times there is more than that in there. It is tough to keep cross-contamination away even in my home, (my husband eats gluten); never mind in packaged foods or at restaurants. It is socially isolating which is not what an ME person needs. ie: No one has invited us for dinner because of it except my parents. Everyone is afraid to cook for me.

    There are gene studies available that you can order to see if you are a candidate for it, and also a self-blood test from a pharmacy.

    It turns out about half of my ME/CFS friends have celiac or severe sensitivity to gluten/ some dairy and the other half have been diagnosed with Lyme. These are things that must be ruled out first thing and are now both in the ME/CFS Primer along with all the other conditions which must be checked.

    Lastly never do a gluten-free diet until you find out by at least blood work if you have celiac disease or it will not be found once you heal and people find it very hard to stay on the diet if there is no noticeable improvement and no positive celiac test.

    There are tax breaks on the extra costs of gluten free food in Canada and many other advantages in the medical world to know if you have it. Also all other first degree relatives should be tested once one family member is found.

    Sorry for the length on this but it has been quite a learning curve for me and my family, and I feel very strongly that there is a strong association between ME and Celiac and that they may even have common genetics for some of us. (I have been trying to get researchers to look at this)

    I was positive on two different blood tests for celiac disease and the villi after biopsy was an absolute mess. Here I had been trying to heal ME/CFS for 15 years with full-on active celiac disease. I strongly suggest people ask for the blood work. It is very sensitive as long as the IG A IGM and IG G antibodies are at good levels. Those need to be tested as well to make sure that you have enough antibodies to react. They can change the test to an antibody type that you do have acting.

    • Cort Johnson
      Aug 31 - 9:13 am

      Thanks Valerie – your story shows what a convoluted situation Celiac and NCGS is. It was really eye-opening for me to learn that you don’t need to have gut symptoms to have celiac or NCGS..

      Did I get this right? You don’t feel better on a gluten free diet but your gut villi are better; so your gut has healed which is good – but it hasn’t really improved your symptoms; ie something else is going on.

      Is that right?

      • Valerie
        Aug 31 - 11:50 am

        That is exactly right, Cort. The GI specialist who I begged to run the celiac test (who laughed at my request I might add due to my CFS history), did it hesitantly. In the end, he was wrong.

        It was sad because I just finished elaborate CFS testing and treatment with an independently paid Canadian medical doctor/alternative expert costing about $10,000 that year. It was when I did not improve from that including IVs, supplements, diet changes, acupuncture, etc. that I went to the GI specialist as a last resort and just asked for the celiac test (I have no idea why I came up with that).

        It was devastating to see all the excellent docs and research I had done did not include that as something I should have pursued long ago.

        I was really hoping I would heal up nicely after that, but I did not.

        Before knowing, while on small amounts of gluten, I did not have gluten symptoms that I knew and ate out in restaurants regularly(probably did neurologically react but didn’t know because of the CFS). But now, seven years later, if I make a small mistake and ingest gluten, within four hours I am projectile vomiting as if the body has been poisoned. So weird. Even the GI doctor could not guarantee improvement because I had been ill with ME for so long with a very neurological case.

        There is the immune and infection properties that remain unaddressed now with ME/CFS along with all the stuff we don’t know.

        I will add that I had experts assert anorexia as well as that I just wasn’t eating because I was thin before the celiac diagnosis. Noone tested me for celiac at that time. I ate like a horse and very healthily my whole life, growing up on a grain farm (ironic). My parents are not active celiac but I have a DQ2 gene from each of them so I have two ( not good luck and a serious form) which means I have passed at least one to my daughter. She is sensitive but not celiac at age 24.

        I have learned that gluten these days has a huge percentage more gluten per grain than when my parents were young raising us. They are now 85 and healthy. Food modification is triggering celiacs due to increased gluten volume in the foods.

        People have to remember that herbs, powders, oriental extracts, and supplements can be riddled with gluten containing fillers, excepients, and preservatives. Some are not labelled. So much fun…. I hope this info helps someone.

        I write about it a lot in my upcoming book about ME/CFS including my experience and the stories of others. Good topic and easy to test for. Everyone, do it.

        • Cort Johnson
          Aug 31 - 5:17 pm

          It’s been awhile since I’ve seen an ME/CFS doctor but no one has ever suggested an Celiac test or the test Niki will refer to in the next blog, which looks for inflammation in the gut.

          With that vomiting after ingesting a little gluten – you’re definitely still Celiac… Niki will get into the permanence of the condition, as well, in the next blog.

          With the EDS, Sjogren’s Syndrome and now this Celiac stuff, this has been a month of learning for me. :)

          • Valerie
            Aug 31 - 6:07 pm

            Cort, I just wanted to enforce that celiac disease is mainstream medicine – unlike CFS or ME in North America. There is no excuse for ignorance in the medical profession for this. It is well known and well taught. Anybody with an immune illness of any kind should rule out celiac disease and doctors know this. The blood work is simple and advanced, and the biopsy, although golden standard, is not absolutely necessary if the blood work is obviously positive. This is so different than ME/CFS so I don’t understand why people are not tested and helped in this area early on. I was reading an article today called “Your Brain on Gluten” in the Spring 2013 publication of Allergic Living, and it speaks of almost identical symptoms and signs of ME/CFS such as brain white matter lesions and grey matter diminishing of the brain if undiagnosed and untreated. So similar and yet so separate.
            I have had a third cousin at age 5 diagnosed with celiac and she too is not recovering in a quick and normal fashion with gluten-free living. They are trying removal of all grains and other things. It is tough and creates so many problems for so many. Again, the biomarker is easy and affordable. And yes, it is a life-long condition…no cheating…ever….

  7. Iquitos
    Aug 31 - 9:32 am

    “it appears that most people with CD who have neurological symptoms don’t have gastrointestinal symptoms.”

    True for me. I didn’t have any gastrointestinal symptoms but the doc recommended I try gluten free anyway. To humor her I did and it didn’t make any difference that I could notice. Then I read a book about GRAIN INTOLERANCE and lactose intolerance: Breaking the Vicious Cycle

    (http://www.breakingtheviciouscycle.info/) It explains the Specific Carbohydratre Diet in a book by Elaine Gottschalk, biochemist and nutritionist. It also says these problems can cause autism. It has recipes. You can read excerpts from the book on Amazon.

    I stopped eating any grains and within a month my neurological symptoms were much better. I began to lose excess weight without dieting for that purpose and to have more energy.

    I don’t find that eating grain-free is any more expensive. I just eat a lot more vegetables, which are pretty cheap. Beets, carrots and lettuce are my daily staples now. I once tried to be a vegan — disastrous results. No energy at all. I’m carnivorous, probably genetically, but eat only eggs, cheese, poultry and fish. There are dozens of kinds of beans and hundreds of different ways to prepare them. Once you start eating them regularly, your body will produce the enzymes to digest them, but use Beano at first if you need to deal with gas.

    I still eat dairy, but only cheese and my homemade yogurt and kefir, fermented for at least 24 hours to convert ALL the lactose to protein. Commercial yogurts let some lactose remain because it makes the yogurt taste sweeter, something marketing tells them customers want.

    I stopped eating any sweets, sugars, etc long ago. I do think of them as poison. I see white sugar and I think of rat poison. In fact, most white foods are contraindicated for most people, if they have been refined at all.

    “Enriched” on the label of cereals and breads reminds me of a joke told by George Carlin:

    I’m waiting at the bus stop and a mugger takes my money but gives me back enough for bus fare. When I get home I say “Guess what, Mom! I’ve been enriched!”

    • Cort Johnson
      Aug 31 - 5:10 pm

      I didn’t know that 24 hour fermentation got rid of all lactose – that’s huge. I just started making soy yogurt but I would love to make kefir.

      I’ve toyed with removing all grains. Rice sometimes gives me instant lethargy. Sweets I’m going to have to keep working on…I know they’re no good for me.

      Thanks for the ideas…and the link.

  8. sian james
    Aug 31 - 3:16 pm

    Great article Niki, and those terrifying mortality figures will have me rethinking my attitude to the occasional ‘treat’ gluten and diary wise.

  9. [...] this up – see  you can read a the longer series of articles I wrote on Cort Johnson’s Chronic Fatigue Syndrome/ME advocacy blogsite. I also cover how this applies to Chronic Fatigue Syndrome/ ME in those series of [...]

  10. Annie
    Sep 01 - 6:39 pm

    What does HR stand for in your article above? Many thanks

    • Niki Gratrix
      Sep 01 - 6:55 pm

      Hi Annie

      Good question. It stands for Hazard Ratio for death. So people with Celiac have a 39% increased risk of death, those with gut inflammation have a 72% increased risk of death…

  11. Forebearance
    Sep 02 - 5:50 pm

    Thank you for the article! It makes me wonder about some things.

    I wonder how gluten sensitivity is related to sensitivity to biological neurotoxins.
    If you have an HLA-DQ 2, then you automatically have a mold-susceptible haplotype. There are only two haplotypes with the DQ2, as far as I can tell from what Dr. Shoemaker has published: the 7-2-53 and the 17-2-52a. Both make a person less able to detox mold toxins. How would those sensitivities interact?

    I wonder how gluten sensitivity is related to blood type. Dr. D’Adamo (I think) who invented that eat right for your type diet, says that only blood types A and AB can eat wheat. Blood types B and O are not supposed to eat it. In my family, there are four of us with a DQ2. The two people with blood type B have Celiac Disease and borderline Celiac Disease. The two people with blood type AB do not. (at least by the standard tests that have been done so far).

    I wish there were a branch of medici e that just studied inflammation, and the things that cause it. I wish someone would figure out how all these factors are related.

    • Niki Gratrix
      Sep 03 - 10:34 am

      Hi Forebearance

      Well I don’t think the two are necessarily directly linked (mould sensitivity and gluten sensitivity) however what is interesting is that gluten sensitivity is a type of immune mediated intolerance, where gluten can drive inflammation, eventually increasing the risk of autoimmunity, and it is not the old conventional understanding of “allergy” – which was IgE mediated. And interestingly mould and a whole range of chemical toxins can cause exactly the same immune response as gluten. So in the next post we will be talking about state-of-the-art testing for gluten sensitivity, and interestingly this same lab has brought out its latest test array for autoimmunity which includes testing for about 20 chemicals and mould…

      So chemicals and mould can have not just a toxicological effect on the body (i.e. being poisonous to humans) , but also an immunological effect. This will be covered in the next planned series of articles on this site.

      Who is susceptible to developing sensitivities to these things depends on genes and other environmental factors like processed food in general in the diet for example. So you mention the genes Shoemaker has stated which may possibly make some people more susceptible to mould intolerance – perhaps because they are not detoxing it properly. There could be similar polymorphisms in some people’s methylation cycle and CYP450 liver enzymes which means they don’t detox chemicals as well as others.

      We know there are genes which make people more susceptible to developing Celiac disease, in fact a recent study just showed over 50% of the population of Australia is susceptible to developing Celiac disease! This may seem to fit with the very common blood type 0 who should avoid wheat according to D’Adamo, but I think that is more to do with tolerance of lectins in foods – I haven’t studied the papers on which specific genes make people susceptible to CD but we will be covering it very likely in the next articles (probably part 3) and a planned “Gluten Alert” page on this site…So I guess, watch this space!

      By the way there are definitely branches of medicine studying inflammation and connecting all the dots – anyone working with a “systems biology” approach – which includes the Institute for Functional Medicine and also anyone involved with the science of psychoneuroimmunology (PNI) – there are many, it’s certainly my main approach and all my up-coming articles will be based on this kind of “complexity theory” approach.

      Hope this helps :-)

      • Forebearance
        Sep 03 - 4:30 pm

        Hi Niki,

        Thank you so much for your reply. I am really glad that you are one of the people who are interested in connecting the dots! And that we have you here.

        Have you ever read the work of Ritchie Shoemaker? If not, I would encourage you to take a look at it. It sounds like there is a lot of overlap between the effects of gluten and the things he has figured out about the immune system. He describes a condition he calls Chronic Inflammatory Response Syndrome.

        • Niki Gratrix
          Sep 03 - 7:44 pm

          Hi – ah very interesting. I have read Desperation Medicine by Shoemaker and studied his early work in some detail – his work links with people like Dr Patricia Kane’s on lipid membranes, neurotoxins and fat metabolism in general, and I just had a look at his latest published papers online. I may go back on what I previously said about a link between gluten and mould sensitivity. This paper by his research group http://www.survivingmold.com/docs/Exposure_to_water_damaged_buildings_causes_a_readily_identifiable_chronic_inflammatory_response.PDF

          …seems to suggest that people exposed to mould in water damaged buildings develop gluten sensitivity – could this be a another cross-sensitivity risk with gluten! Thanks for the prompt – more research required…

  12. [...] might also be interested in Niki’s article, Celiac disease, gluten sensitivity and chronic fatigue syndrome: part 1 misdiagnosis and mortality on Cort Johnson’s Chronic Fatigue Syndrome/M.E. advocacy [...]

  13. [...] Is Danger Lurking in Your Cupboards? Check out Nutritionist Niki Gratrix on Gluten Sensiitvity, Celiac Disease and ME/CFS here [...]

  14. [...] Is Danger Lurking in Your Cupboards? Check out Nutritionist Niki Gratrix on Gluten Sensiitvity, Celiac Disease and ME/CFS here [...]

  15. Gina
    Sep 09 - 5:12 pm

    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 elimation 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.

    Cort, I heard of your site from Dr. Teiltelbaum’s Facebook page. I am currently a patient of his. I am curious… Have you tried IVIG? Also, are you familiar w/ Dr Beck & his micro current device? Great info! Thank you!

    • Cort Johnson
      Sep 09 - 6:16 pm

      Thanks Gina. Glad to hear you got relief from that. As I noted earlier something is definitely going with me with nightshade plants, joint pain and inflammation and probably wheat as well but only when I eat alot of it.

      We are an interesting group. Unfortunately, it seems we all have to try everything and see which ones work…..(sigh).

      I haven’t tried IVIG or Dr. Beck’s approach but thanks for reminding me of that. I meant to look into that.

      Thanks for relating your experience.

  16. Gina
    Sep 11 - 11:50 am

    Thanks for your reply cort. We sure are an interesting Grp :-)

    Curious… is your response to the nightshades immediate? I will surely look into this for myself too.

    I am Gfree, dairy free, sugar free & recently stopped eating meat (just to see if it helped). Also, I eat almost everything organic & very clean (no processed food). It isn’t easy!!! :-). But, desperate to feel better! I am towards the end of my protocol w/ D. T. Though a lot of things have improved, I still have a lot of fatigue & muscle pain. We are starting to focus on all of the active viruses. My high titters maxed out the blood test through my GP. Next week I will get my results to see where they actually are.

    So… I am hopeful that treating the viruses & boosting my immune system will be the final piece of my health puzzle. Have you checked your IGg antibodies to CMV, EBV, HHV-6, etc?

  17. Louise Cooper
    Nov 05 - 9:34 am

    Thanks for your article.

    I had ME/CFS 20 years ago and found cleaning up my diet – no wheat, no dairy, no caffeine, alcohol or sugar – helped me to recover the most of anything I did. Now sadly I have overdone it again and have been back with CFS for the last 18months.

    The first consultant I saw was a complete waste of time and told me that diet was irrelevant. Stupidly I followed his advice and didn’t get better. Now with two new consultants I have just tested positive for CD and for secondary hypothyroidism (I am on thyroxin) and had a vitamin D deficiency that was undiagnosed also. It seems finding the right doctor is the first battle!

    I have now not been eating wheat for a month however I feel the best when I cut out all grains completely. I have started on the paleo diet and have found it gives me the most amount of energy – it really makes a massive difference. Even my beloved porridge is out.

    My immunologist has put me on Vitamin B12 and a form of Vitamin E – Tocotrienol – that he says should help my cells repair from the damage done by wheat. I wait and see, although he has also suggested B12 injections.

    I have also been reading about the drug Rituximab and its ability to help those with chronic fatigue and auto immune disorders (I have two – CD and secondary hypothyroidism). What are your thoughts?

    Thanks again for a great article.

    • Cort Johnson
      Nov 05 - 10:10 am

      Congratulations on getting better and thanks for passing your experience on. :)

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