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gluten intolerance and ME/CFS

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Cort, Oct 5, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    FIghting Fatigue often has great posts and is another good one - on gluten intolerance and ME/CFS.

    http://www.fightingfatigue.org/?p=7429

    Related posts:
  2. Jody

    Jody Senior Member

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    Yup!

    I am stuck with eating them when we have to rely on the food bank at times and I invariably notice the difference in many ways. And I always am better when I can get the heck off the stuff again.

    Something else, some people with acute sensitivity to gluten have powerful cravings for the stuff. The more you crave it, ... perhaps the more sensitive you are to it?

    Fortunately, the longer you can stay away from it, the more the cravings will fade. I find that if I'd had a few days of bread or rolls or whatever, even when I don't have to eat it anymore ... I want it. It takes a few days for the craving to disappear again.

    My motto -- Don't feed the Candida. :D
  3. Victoria

    Victoria Senior Member

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    Jody,

    all I can say on this subject is that from July - Sept 2005 (3 months) I was 100% grain & dairy free (& I mean literally 100%) & I was 100% well (FM or no FM).

    At that time, I felt the best that I have been all my life (that I can remember).

    Agan early this year, I was almost 100% grain/dairy free & once again, I was nearly 100% well. The reduction in pain/fatigue is really significant.

    I can't seem to last more than 3 months though. It's almost like a 3 month toxin cleansing of my whole body and once I finish that 3 month fast, my body wants to eat badly again. I think I mentioned a craving for chocolate biscuits at work in recent months. Last night, I found my old Vega allergy testing results from back in about 1989 I think it was. Chocolate recorded the highest result for being allergic/sensitive. It even recorded higher than wheat.

    I believe when we crave sugar or grains or whatever, then it's possibly a sign that we shouldn't eat that food.

    (whereas when toddlers crave a certain food - and members with children will relate to this - then that toddler probably needs a boost of that vitamin/mineral).

    Wish I could eat this way permanently. Wish I could do alot of things permanently.

    So despite the 2004 colonoscopy showing no trace of villi damage due to cealiac disease, I KNOW I am sensitive to grains. Was it Tony? (in Melbourne) who said a couple of months ago, that one could still be allergic to grains & not have the villi damage in the digestive tract?

    I believe many of us (including healthy) people are becoming sensitive to different foods because of the chemicals (on our crops) & the hormones/antibiotics (they feed our animals). Many years ago (like about 36 yrs ago I think) I read an article in one of our major newspapers about the fact that many people don't realise that have these sensitivities because they have been eating that way since birth.

    It's only when you switch to all fresh, organic food that you realise how different you feel.

    Victoria
  4. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Hi Vicki,

    I think what I said was some of us have a level of gluten intolerance that isn't coeliac. Prof De Meirleir has been reported as saying 45% of ME/CFS patients have the fructose malabsorption problem where wheat is a main culprit. (I'm one of 'em.)
    Good point about eating a certain way for a life time...I think I've had this fructose problem, though without causing so much havoc, for a very long time, maybe my whole life.
    I've basically been wheat free for over 3 years and am better for it. Time for you to get back on the wagon?...cheers...:)
  5. Jody

    Jody Senior Member

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    Vicki, Tony,

    Sounds like those of us with this sensitivity would be far better off to stay on the wagon. :)
  6. Tony

    Tony Still working on it all..

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    Melbourne, Australia
    Yeah...I've got a lifetime pass now...:)
  7. Jody

    Jody Senior Member

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    Tony,

    Sounds like it's workin' for ya so far. :)
  8. shrewsbury

    shrewsbury member

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    This was in the Consults Blog of the nyTimes on Dec 21 09.

    I thought it might be of interest as many of us have celiac or some degree of gluten intolerance.

    Other recent articles were:

    Ask the Experts:Celiac disease

    Gluten-free for the holidays, and beyond

  9. margib

    margib Senior Member

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    Well, I'm weighing in by announcing I'm a Raw Foodie. I had been gluten - free almost 2 years (other than a 3 - month hiatus) without positive results. Had problems rotating foods. I know it might be considered a no-no here, but people, I'm full (as in, not hungry all the time!), fewer crashes, both mornings & afternoons. I used to be a Caveman Diet follower: I enjoyed very rare steak until I found I still had very, very low ferritin. Something's fundamentally wrong with my digestion, & I'm righting it, dammit, with superfoods my body has not seen the likes of before (and therefore, using, I assume, instead of sending leukocytes to): seaweed, maca, coconut (that's thanks to you, Miss Jody). Good luck, everyone. I also recently bought some special holy triple-blessed ginger kraut from the raw foodies (who were SOOO nice, even though I wore my patent-leather Danskos & carried a lovely leather purse). Peace,
  10. brenda

    brenda Senior Member

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    I have been wheat free for a few months, then decided to go gluten free two weeks ago and cut out dairy too 100% for both. It was the result of reading Why do I STILL have Thyroid Symptoms - when my lab tests are normal? Datis Kharrazian DHSc DC MS.

    He says that in some cases, the immune system mistakes the gluten molecule for thyroid molecules and so attacks and eventually destroys the thyroid - which is Hashimoto's Thyroiditis, which I have. I wonder if the process goes on with other organs etc and is the cause of all auto-immune conditions and is indded a problem for people with any chronic condition. He advises his patients to give up gluten for life and dairy too and he is having success.

    It has not been too hard but the gluten free products in the shops are expensive and not that tasty so I am eating only a little of the bread products. I am used to reading labels so that part is ok.

    I have seen a considerable improvement in these two weeks. My bowels are working much better, my energy levels have gone up and I am no longer needing to sleep through the day - in fact I am staying out of bed mostly. I have noticed that I am now sweating underarm and my breast tenderness has gone. I am actually a lot better.

    The big test will come in three weeks time when I plan to go away for a week and will have to exist on snacks mainly of nuts, seeds bananas and meat.

    I have tried gluten free before but because I am not celiac, which showed in the test for it, I did not think it had to be 100% but it seems to make a huge difference.

    It is taking some adjusting to to know I can never eat these products again - no more shop pizza :( but if it will stop the destruction of my thyroid then it is worth it and if it improves fatigue and general health for anyone then I am sure that it is worth a trial to see.
  11. talkingfox

    talkingfox Senior Member

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    I've been gluten free for 5 years now. My ND diagnosed me with Celiac but didn't do tests. Now I'm not so sure if I've got celiac or if it's just a sensitivity issue from the CFS. I went into almost complete remission for 2 years when I quit gluten. I've subsequently nixed casein as well, much to the benefit of my mental state.

    Regardless of the DX, the difference for me has been huge. Even the teensiest traces of gluten make me sick as a dog, so regardless of why, well, I'm just not eating the stuff.

    I've also quit buying most available GF breads and such, mostly because they taste nasty, IMO. When I have a good day I generally make up a few loaves of my own and freeze them.

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