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Need help/advice with symptoms

Discussion in 'General ME/CFS Discussion' started by Snowdrop, Oct 16, 2013.

  1. Snowdrop

    Snowdrop Senior Member

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    Hi X

    I was quite surprised at how easy it was to go without gluten (I mean from a food selection POV).
    That was my reason for not trying it sooner. The GF bread we like is even made locally.
    If you don't mind my asking: what are the improvements you are aware of that people have experienced gluten-free?
    regards,
    snowdrop
    xchocoholic likes this.
  2. xchocoholic

    xchocoholic Senior Member

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    rats. i long lost my post. quickly, theglutenfile will
    give you this info. a gluten summit is going to take
    place in November that has all the best
    people I know of. Googling gluten summit
    will retrieve that info.

    My list of improvements is long. Ataxia, white lesion
    on brain, right foot drop, improved myoclonus, narcolespsy,
    floor rolling under feet when standing, etc etc.

    hth. x

    ps. local bread are great but beware of the gluten
    cross contamination. Paleo diet is best for avoiding
    all cc but a real pita for a pwc, esp in a small town
    with only 1 health food store.
  3. Snowdrop

    Snowdrop Senior Member

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    It seems that the symptoms you refer to most are neurological in nature. I have many of this type of issue too so I hope I too find relief.
    Thanks for the response. And I am beginning to wonder about the issues of cross contamination. Slowly, slowly, that will have to be sorted too. I hear you on the Paleo we were mostly meat and veggie eaters dinner wise so hopefully a change will not be too much of a shock.
    healthy wishes sent your way,
    SD
    xchocoholic likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    A lot of my digestive problems cleared up too. I was
    too late for the toilet many times if you catch my drift.
    I'm still shocked when I think about my doctors suggestion
    for this. All I can think of is that he probably had
    stock in Imodium. : 0

    My endoscopy and colonoscopy post gfcfsfefcf + chemical
    free diet showed my previous diagnosises of hiatal
    hernia, gerd, gastroparesis, polyps, etc were gone.
    : ) I still have symptoms at times but nothing
    like I had prior to that diet. I was eating gf whole
    grains and legumes back then.
  5. Allyson

    Allyson *****

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    but because you are eating a lot of meat and fishand less grains you are ipso facto getting more protein an less fructose/gluten/lactose in your diet - it I not originally organic I thought..... though that is always a good idea IMO

    it is not just what a caveperson would eat - though based on that kind of diet - pre a high grain diet that was introduced post agriculture


    A
  6. Allyson

    Allyson *****

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    BTW gerd and gastroparesis and hernias are all very common in EDS - no sure about polyps but skin tags are so possible

    low FODMAPS allows some gluten though not too much- it is the fructose that is the issue

    A
  7. Allyson

    Allyson *****

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    lost my post I thin k again - but low FODMAPS des not just mean fruit - it I thte fructose to glucose ratio in foods so things like broccoli cauli watermelon apples and pears are high up on the avoid list while stone fruits and berries are usually fine
    A
  8. xchocoholic

    xchocoholic Senior Member

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    Back in the days when the "caveman" or "paleo"
    or "hunter gatherer" diets were first being recommended
    to me, the only foods allowed were meats, fruits and
    veggies. Aka what our bodies immediately recognize
    as sources of available nutrients.

    There are a couple of exceptions but to keep it
    simple it was described this way. If you can eat
    it raw, it was paleo. Dr Cordain was the expert at
    that time.

    I like simple easy to understand diets. And based on what
    I've seen those with chronic illnesses shouldn't be
    eating any gluten. There's a gluten summit coming
    up in November where the best of the best explain
    this.
  9. Snowdrop

    Snowdrop Senior Member

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    Just a progress report for those who offered their help and for those who might be considering gluten-free.

    I continue to feel better in terms of cognitive functioning. Clearer mind, more stamina.

    But I'm crawling out of a hole that felt like nearly brain dead so while the gains might not make me a rocket scientist they are small but significant. The down side to the GF state has been anxiety and mental buzzing. I start thinking about something and at night I can't turn my mind off.

    The anxiety is mild and comes and goes (mostly at night) and the mental buzzing I have found I can manage by (and here I realise my GF isn't quite true any more) eating a small amount of gluten food just before bed. It's not purist but it works for me and I'm not coeliac and have no ill effects from doing it.

    I may consider other changes as per suggestions but I am in the midst of packing as we are obliged to move our landlord has lost her job in the states and is moving back home ~ so now it would be really good to find some simple way of avoiding PEM ~ and don't we all wish that. ;)

    SD
  10. xchocoholic

    xchocoholic Senior Member

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    The enzyme dpp-iv may help you. I use either enzymedica
    or country life brands. Be sure whatever brand you get
    is gf.


    The results on this were still being debated the
    last time I looked but I know some people who swear
    by it. I think it lessened my reaction to gluten cc
    but there's no way of accurately measuring this.

    Theanine is good for anxiety. The capsules I bought
    were 100 mg. At one pointment I needed 1 every hour but
    at other times I had to split it down to 1/4 - 1/3.

    Good luck on your move. I'm going thru the same thing.

    btw gluten has been found to damage more than the
    digestive tract. I first found this on the web in 2005, but
    I'm not sure how long this has been known. theglutenfile
    is the best resource so far for this info. The gluten
    summit coming in Nov will be interesting too.

    tc ... x
  11. xchocoholic

    xchocoholic Senior Member

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    Fwiw even the fda recognizes the dangers that low levels
    of gluten can cause. Being a purist isn't unreasonable considering
    the scientific data accumulated on this. When the fda
    was researching the level of gluten they would allow food
    they did a great job of pulling together current
    research. This info was on their website under
    determining standards for gf. They mostly reported
    what the doctors involved in the gluten summit had
    found.

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