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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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How many more times can I be wrong? Now it's gluten and dairy.

Discussion in 'Lifestyle Management' started by SOC, Apr 21, 2014.

  1. taniaaust1

    taniaaust1

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    I personally dont like shop brought almond milk anywhere near as much as homemade almond milk which is much richer. The shop brought one seems watered down, the store brought one is also full of sugar. I love to make my own almond milk using xylitol (which is natural and not a sugar) as the sweetener
     
    Last edited: Apr 23, 2014
    SickOfSickness and Valentijn like this.
  2. taniaaust1

    taniaaust1

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    Brenda.. didnt I see on you post on that thread asking who has had ME/CFS for over 20 years and you said you have. Ask yourself why you are still sick then? Is it truely due to your diet?? If so why havent you fixed yourself? If your theory is correct this must mean you are eatting "junk" (how you put it) or this theory is just wrong.
    ............

    I myself was a health freak when I got sick (not health freak in a bad kind of way). I went to a yoga class, also a tai-chi class and also did a dance class every week (so exercised 3 days at least per week, I also liked to walk places). I didnt eat "junk" foods, I even actually sprouted my own sprouts and grew my own organic vegetables etc. I even baked my own bread at times, made my own cheese and made my own yogurt and drank Kambochi (not sure if I have the name right but that fermented health drink). Whenever I got sick I used natural medicine.

    I would of had to have been within that top 5% of the population who was living a truely healthy lifestyle.. I also avoided bad chemicals in my own home and made my own skin creams.. that was before I even had MCS). I was fit and VERY HEALTHY (except for memory issues since a teen due to severe EBV and I also had PCOS and of cause had Aspergers back then too).

    Well health freak me, I then got ME/CFS and ended up declining to being bedbound within a year thou I was doing EVERYTHING healthy (except didnt know I should of been confining myself in bed when I first got this illness). This illness doesnt give a crap about a person eatting right and doing all the "healthy" things.

    My sister who has this illness.. she was also a health freak where as my two sisters who eat a lot of junk food (they are at least weekly at Mc Donalds.. they are healthy and havent developed this illness.

    Nowdays due to this illness and my insulin issues, Im on what many would view to be an overly excessive diet as this illness has caused foods which are healthy for most to actually make me sicker eg I need to stay away from bananas, corn and so many other things!

    Are you aware that one study showed that around 50% of those who had ME/CFS had issues with fructose. So many of us have issues with dairy, gluten or other things. What is healthy to you may not be healthy for another with this eg I not long ago had a terrible reaction (mouth swelled) to what I think may of been a plum.. I did breach my diet that meal and did eat some other stuff not so healthy but I think my allergic reaction to which I nearly had to ring an ambulance was to the plum! I have food intollerences to some nuts too eg cashews, peanuts.

    I also have the CBS mutation and have been getting reactions to sulphur foods. I think that was why I recently got stomach pains with brocolli on a couple of occassions (and this is also making me not feel so great when I eat eggs either). Cause of my insulin issues my specialists have told me to only eat a small piece of low carb fruit per day and I cant eat rice and grains. Your "healthy" diet would probably be quite harmful to me.

    Its not nice that you are blaming people on being sick or needing meds for not "eatting healthy". If I ate at your place with you what you eat... I'd probably get quite sick to the point that I could end up in hospital. I didnt have any issues with foods before this illness!
     
    Last edited: Apr 23, 2014
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  3. brenda

    brenda Senior Member

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    @taniaaust1

    I have only been on a strictly healthy diet for maybe 10 years but still a healthy diet before that. The most important thing I did was to come off 12 medications and save my life 15 years ago when I first got it about how damaging meds are. I have tried many supplements over the last 15 years only to find I have Lyme which would explain why no better success, but for me, to still be alive after so much by way of toxin assaults from such an early age added to the stress of having Aspergers which you know means a lot of abuse and bullying, is evidence of the diet working plus the fact that I am not on any meds at all. For most others they would have regained their health. Without it I would have died. I nearly did after I contracted Lyme.

    More recently I have found out about MTHFR which diet alone cannot fix. Now I feel I have all the tools ready in my box including my rife device so this time I can really change things. It's a tall order at my age but I won't give up nor accept that I cannot improve a great deal from what I am at present.
     
    Last edited: Apr 23, 2014
  4. taniaaust1

    taniaaust1

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    I guess no one here would disagree with you that "unnecessary" meds are dangerous.. but saying that is different to telling people that they just have to eat healthy to be fixed of ME/CFS symptoms. As you yourself have found out with the MTHFR (one copy of each Ive heard is almost as bad as having two double copies of one so I hope you treat that correctly), diet alone, even what is viewed "healthiest" diet doesnt solve that. I think nearly all of us do have diet issues whether genetic or other issues with them (leaky bowel? allowing inflammatory reactions etc).
     
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  5. brenda

    brenda Senior Member

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    @tania

    My point is that I have found that the symptoms of ME do not need meds if they are mainly controlled by diet including products to heal the gut etc. That does not mean that they are not still there and as you say, other things are needed like methyl supplements which I still cant take without unbearable low mood. They can be tolerated if the body is not being bombarded with junk food which includes gluten free products. Pain from Lyme is one exception but I cannot accept pain killers as a solution so suffer the pain.
     
    Last edited: Apr 23, 2014
  6. Valentijn

    Valentijn Activity Level: 3

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    I think I'll give this a try soon, since the one thing I dislike about commercial almond milk is that it's a bit thin. I'd love to have some really rich almond "creamer" for coffee too :D
     
  7. brenda

    brenda Senior Member

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    Did you know that most almonds in the world are supposed to be irradiated now? Have not checked it out yet though.
     
    Last edited: Apr 23, 2014
  8. Valentijn

    Valentijn Activity Level: 3

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    I realized I could do it with almond flour, which I have a bunch of, so made a batch with 1 cup flour and 2 cups water, plus a pinch of salt, about a tablespoon or less of maple syrup, and a teaspoon of vanilla extract.

    Delicious! The straining is a bit difficult, but I think I can buy almond butter to make the milk-making even easier.
     
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  9. madietodd

    madietodd Senior Member

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    I strain almond milk through a few layers of cheesecloth, in a strainer. If you make the squares big enough, it's easy to twist up into a ball and squeeze all the milk out. I add a tiny bit of vanilla and a few drops of stevia.

    At the library today I found a recipe for gf pizza in the current issue of Cook's Illustrated Magazine. Their recipes tend to be excellent and thoroughly tested, so there's an idea for anybody who misses pizza.
     
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  10. xchocoholic

    xchocoholic Senior Member

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    xo baking company has yummy grain free mixes.

    A freind told me about Edwards & son purple rice and sesame crackers. Vitacost has them.

    Fwiw, I favor a whole foods approach also but gave it up after 5 years last year. I have constant OI and buying and preparing fresh food was taking up all my energy. I'm happier eating a few processed foods and avoiding OI more. :)

    Most of my 100 or so "cfs" symptoms are under control via diet, supplements, meds and lifestyle changes but I still have too many diagnosises stopping me from being functional.

    After seeing positive results from diet changes in 2005-6, accepting that my body wasn't going to heal via diet, etc was an important reality check for me.

    Finances stopped me from trying all the supplements my doctor prescribed but I seriously doubt the amount of organ damage or autoimmune diseases I have can be reversed.

    Tc ... x
     
    Last edited: Apr 24, 2014
  11. xchocoholic

    xchocoholic Senior Member

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    Note to self ... avoid gluten cross contamination. Lol. I'm awake tonight probably from gluten cc. I've been getting away with eating more gf processed foods until tonight. New foods include Annie's organic ketchup and salad dressing. Bummer ... tc .. x

    ps. I didn't take enzymedica glutenease with Annie's tonight. I've noticed and heard others say that dpp-iv helps with gluten cc.

    Trial and error ...
     
    SOC likes this.
  12. xchocoholic

    xchocoholic Senior Member

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    Hmmm. I'm back. Late night insomnia posts aren't my best idea. lol.

    I'm sure I'm right about the gluten cc because complete and total insomnia and myoclonus are my known reactions.

    But wrong about Annie's alone causing my insomnia last night. I stopped taking melatonin and 5htp at bedtime a few days ago and haven't slept well since. I was only taking approximately . 3 mg mel and 10 mg 5htp but apparently that's enough now. Lesson learned. :) At least until my po cfs brain forgets it. lol.

    tc .. x
     
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  13. vamah

    vamah Senior Member

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    Just by the way, I mafe pizza last night with a Pamelas brand pizza crust mix and it was not bad at all. I had tried a recipe I found on the internet before, using gluten free flour and this was much better.
     
    SOC likes this.
  14. mi12

    mi12

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    Coming late to the discussion, thought I'd chime in.

    One thing to consider is a paleo style of eating (there are many variations thereof). Avocados, salsa and chicken; bananas and almond/pb butter; tuna with asparagus and olive oil; smoothies with berries and coconut or rice-milk. These are the kinds of foods I eat, bit hard on the budget but more than make up for it in well-being.

    Too bad you don't have a Trader Joe's nearby, their gf english muffins are pretty good....
     

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