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Do your ME symptoms improve when you exclude wheat/gluten?

Discussion in 'Lifestyle Management' started by hellytheelephant, Sep 22, 2016.

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Do yourME symptoms improve when you exclude wheat/gluten from your diet?

  1. I never eat wheat/gluten for other reasons

    10.0%
  2. Yes, it makes a huge difference- I try to avoid

    25.8%
  3. Yes, I notice some improvement in some symptoms

    19.2%
  4. No- wheat/gluten intolerance does not affect me

    33.3%
  5. I have not noticed either way

    11.7%
  1. hellytheelephant

    hellytheelephant Senior Member

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    Hi
    My reason for posting this is that I am exploring a connection between my wheat/gluten intake and the worsening of some symptoms. It is hard to know what affects what as each day is a variable mix of dietary intake, activity,stress,weather, hormones etc...

    I have 2 friends with ME and one with Fibro- all are on gluten free diets!

    It is not the easiest diet to follow ( I am already on quite a few restrictions as I have quite a few allergies/intolerances), so I would appreciate your experiences/comments.

    many thanks:heart:
     
    belize44 likes this.
  2. sarah darwins

    sarah darwins I told you I was ill

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    Big difference for me. When I went gluten-free I lost more than 20 pounds which returned me to a 'healthy' body weight and I had a major improvement from borderline severe to quite moderate. Been gluten-free ever since (about 7 years, I think). If I eat even a tiny amount of gluten now I get dizzy and nauseous, even with an accidental ingestion, which would seem to rule out nocebo effects. I tested negative for celiac but seem to be acutely intolerant.

    It's not so hard to follow a GF diet, especially now that all supermarkets carry GF ranges that are getting better all the time. I do occasionally wish I could eat wheat (I should probably stop watching Bake-Off!) but mostly don't miss it.
     
  3. AndyPR

    AndyPR Senior Member

    I followed a gluten-free diet as much as possible for approx 10 years due to the digestive 'reaction' I would get to gluten, bloating and very rapid transit is perhaps the best description I can give, this reaction disappeared once I cut gluten out of my diet. During that time though I had yet to have my ME diagnosis so I would find it hard to honestly say if it positively impacted on the ME (looking back I had the classic ME symptoms but a combination of ignorance, dismissal by GP and "I'm only tired, I just need to get fitter etc etc" attitude meant I was trying hard to ignore symptoms rather than track effects). I eventually found though that I could tolerate gluten again and I now make no attempts to avoid it.

    So, I guess I'm somewhat of a null result, yes, I've been gluten free but I can't say for definite that it helped with the ME, although that is certainly possible.
     
    hellytheelephant likes this.
  4. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I'm the same. I followed GF for a few months, it stopped the bloating for me which was getting really bad every day, it helped the migraines a little bit but didnt do much for the ME.

    It cost a fortune buying GF things and I hated every GF product on the market so it was a grim few months for me.

    I'm back on gluten now, the bloating has stopped for now. When it starts again i'll do another 3 month break again i think. Not looking forward to it :aghhh:
     
    hellytheelephant likes this.
  5. charles shepherd

    charles shepherd Senior Member

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  6. Effi

    Effi Senior Member

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    My symptoms improved when I went on a grainfree/sugarfree diet (also free of grainlike seeds, e.g. quinoa or buckwheat). I can eat small quantities of both sugar and grains without payback though, so it's more a question of my body's inability to handle glucose than gluten.
     
    hellytheelephant likes this.
  7. ukxmrv

    ukxmrv Senior Member

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    I tried a gluten free / dairy free diet for a year early on. Made no difference to my ME or other symptoms.

    When I first developed ME (acute viral onset) I did got from being able to eat a wide variety of food to being unable to eat some of them within the first few years. Had my first anaphyatic shock attack (prawns) early on. Other things began to cause stomach problems out of the blue.
     
  8. AndyPandy

    AndyPandy Making the most of it

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    Excluding gluten helps me with IBS, generalised pain, fatigue, mood and cognitive function. Same goes for dairy, sugar, soy, chocolate and alcohol.

    When my gut is bad my ME symptoms are worse.

    I didn't have any problems with these foods before ME.
     
    hellytheelephant likes this.
  9. hellytheelephant

    hellytheelephant Senior Member

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    Thanks for such speedy responses. I have a hiatus hernia so i already avoid the things that irritate my system - it's a big list incl dairy, sugar, fruit juice, citrus, chilli, garlic, onions, caffeine etc.

    @Hell...Hath...No...Fury.. I have no intention of using commercially made substitutes as I seem to react badly to most processed food...and it is SO expensive. I have been making my own oat soda bread with psillium which is really yummy.

    I had cut right back on wheat but have somewhat fallen off the wagon, and now have v depleted energy,PEM, bad skin, blocked sinus, sore throat and tight chest ...so not stomach probs- hence my poll question.
     
  10. hellytheelephant

    hellytheelephant Senior Member

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    @AndyPandy that is so interesting 'cos my allergies/intolerances are much worse now ME has flared up again.
    @sarah darwins - the BBC is thoughtfully removing temptation away from us by putting B.O on Channel 4! I was hoping they were going to do another 'free from' week as they did last year.
     
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  11. shannah

    shannah Senior Member

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    With me, it's the reverse. It's not so much that they improve as it is that they don't worsen. Eating grains intensifies/worsens symptoms.

    Here's some recent interesting research that could explain it.

    NEW YORK, NY (July 26, 2016)—A new study may explain why people who do not have celiac disease or wheat allergy nevertheless experience a variety of gastrointestinal and extra-intestinal symptoms after ingesting wheat and related cereals. The findings suggest that these individuals have a weakened intestinal barrier, which leads to a body-wide inflammatory immune response.

    Findings from the study, which was led by researchers from Columbia University Medical Center (CUMC), were reported in the journal Gut.

    http://newsroom.cumc.columbia.edu/b...d-biological-explanation-wheat-sensitivity-2/

    The actual paper is

    Intestinal cell damage and systemic immune activation in individuals reporting sensitivity to wheat in the absence of celiac disease.”

    http://gut.bmj.com/content/early/2016/07/21/gutjnl-2016-311964.full
     
  12. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    I have not found that excluding gluten specifically makes a significant difference to my symptoms. However, several of my close female relatives (one of whom was diagnosed with FM shortly before the onset of my illness and another almost certainly has genuine gluten sensitivity of some sort) swear by it.
     
    hellytheelephant likes this.
  13. TigerLilea

    TigerLilea Senior Member

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    I have tried several elimination diets, gone dairy free three times, gluten free twice, wheat free, sugar free, dairy/gluten/sugar free at the same time, low carb, modified paleo, etc. etc. etc. At least for me, my diet has absolutely nothing to do with my CFS/ME symptoms.
     
  14. shannah

    shannah Senior Member

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    Maybe it all depends on whether you have leaky gut.

    I get increased inflammation from eating anything at all - some stronger reactions than others.

    About the only things I can eat that cause minimal reactions are chicken and green grapes.
     
    hellytheelephant likes this.
  15. PennyIA

    PennyIA Senior Member

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    I fought trying a gluten free diet for over two years. I was so sure I didn't eat that much gluten and certainly didn't experience any differences (I thought).

    I ended up (for other reasons) on a liquid diet for around 8 weeks. Knowing this going in, and knowing that I *ought* to at least try going gluten free, and how easy it was to avoid gluten while on a liquid diet, I tried it.

    8 weeks with no gluten and I didn't think I had any differences
    I ate ONE King Hawaiian roll, just one.
    Twenty minutes later my leg cramped up and I was wondering why it was getting worse.
    Only then did I connect the dots that I hadn't even noticed that it wasn't cramping up as much as it had been.

    DETERMINED to not have to go gluten free and that it was just a fluke, I went gluten free for two more weeks.
    Ate one roll, just one.
    And darned if my leg cramp didn't come up again within 20 minutes.

    SIGH

    I'm stubborn, and am mostly gluten free now. Occasionally, I will sneak a tiny bit of gluten in. Most of the time, if it's a very small nibble, I don't have any repercussions. But, if it's more than a small nibble it causes joint & muscle pain and can get really severe.

    I still have aches and pains without the gluten. But they are far worse with gluten and very predictable, the severity increases with the size of the 'dose'.

    I still miss my king hawaiian rolls. But, I have found a decent baker who does AMAZING gluten free/dairy free baking. Now if only I could find saltines, I miss those as well.
     
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  16. msf

    msf Senior Member

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    KDM now tests zonulin levels (marker of intestinal permeability) in some of his patients. These have been shown to increase with gluten intake in coeliacs, but also in some IBS patients too.
     
    MeSci, hellytheelephant and PennyIA like this.
  17. Aurator

    Aurator Senior Member

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    I can't really answer the poll as it stands.
    I had a few problems with my digestion before I got ME and these continued after I got it. I then cut gluten out of my diet. This improved the digestive problems, but did nothing at all to alleviate the more debilitating symptoms such as sore throat, PEM, dizziness et al.
     
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  18. brenda

    brenda Senior Member

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    It made quite a difference when l went on a gluten free diet. Felt better however, gluten free products are not health foods being highly refined. It was not till l quit them, and also dairy that real progress was made.

    Going fully autoimmune aip, which means also quitting all grains seeds legumes and nightshades, has been miraculous. It was not until the whole protocol was done that symptoms really began to cease so l have leaky gut. Now my body makes a big fuss if l eat something it does not like which is the best part of the diet and it has not been too hard to do.

    I began to eat things like plantains, tigernut flour and cassava flour from which you can make a tasty bread.

    Eventually, l included environmental controls like blue light blocking at night sun bathing and grounding to get my life back.
     
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  19. alex3619

    alex3619 Senior Member

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    I get no improvement in my ME symptoms from giving up wheat. However some symptoms, possibly not ME related, do improve. The most notable one is I get fewer breathing problems. On wheat my lungs can seize much like an asthma attack. Recently I discovered this also happened with corn, but not as badly. Is this a grain problem? Is it something about the agricultural or manufacturing processes, such as the use of glyphosate? I don't know the cause, but as corn is not a high gluten food there might be some other reasons why this happens.
     
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  20. ahmo

    ahmo Senior Member

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    Within 2 days of eliminating gluten, the horrific anxiety and autonomic over-activity that had made life unbearable, reduced by 50%. Within 2 weeks the tissue holdings in my hands and shoulders disappeared. I will never go near gluten or gluten cross-reactive foods. It was only after going gluten and dairy free, GAPS diet, that I began onto a path of healing.


    http://www.thepaleomom.com/2013/03/...re-eating-gluten-even-after-giving-it-up.html

    http://blog.primohealthcoach.com/blog/bid/79586/18-Gluten-Cross-Reactive-Foods
     
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