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THE DIET for ME/CFS?

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

  1. Lissyleigh

    Lissyleigh

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    I tried Dr Myhill's diet but suffered terrible gastritis from all the meat. I also found that I can't tolerate too much oil - so oily fish and cooking oils were a massive problem. It just shows that no one diet is going to be right for everyone, even with the same illness.
     
  2. Aerowallah

    Aerowallah

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    You might try bitters containing gentian for better fat digestion. I've been low fat for so long that I wasn't fat adapted for the shift in my diet from fewer carbs to more fats...
     
  3. Carl

    Carl Senior Member

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    For many years I found that not altering the foods I ate left me symptom free. With me I had to stick to eating the same foods at the same time because my digestive system was so hyper permeable. My body's immune system seemed to adapt to this.

    I could walk many miles without issue. If I ate something different ie changed the food and challenged my immune system I was left exhausted. It took some getting back into the pattern.

    Since then I discovered high dose Vitamin B12 ie methylcobalamin up regulates the T suppressor cells which helps a great deal and allows me to be less strick with the foods providing I do not add new foods. This WAS documented on wikipedia until someone edited it out. I am glad that I saw it before that happened. BTW B12 works for IgE antibody reactions primarily so is good for people who react mainly with IgE. I had a skin prick test against many different substances including foods and I reacted with a positive result to everything that I had been eating.

    All this means I get virtually no muscle or joint pain any few other symptoms. My mood isn't brilliant but that is about the most significant thing I experience. Adding new foods still hits me hard leaving me very tired and exhausted. I do not do that too often.

    CFS is about hyper permeability of the digestive system and the bodies reaction to absorbed undigested food molecules. This has worked for me for a very long time.
     
    Last edited: Feb 24, 2017
  4. Basilico

    Basilico Florida

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    While I think that Myhill has a lot of good information, I think this diet recommendation is garbage. Everyone feels differently and reacts differently to foods.
    1) Many people on this board react strongly to dairy and gluten. I, myself was on a strict gluten/dairy/soy free diet for about 7 years and it never made me feel better. Now that I've reintroduced dairy and gluten back, I don't feel any different. Other people get severe reactions from small amounts of gluten or dairy or corn or whatever.

    2) Soy is garbage and can not even be digested by the human GI system. Traditional cultures have no history of eating much soy (Asian cultures use only small amounts, and only fermented, which drastically increases digestibility)

    3) Salami and bacon are extremely high in nitrates (natural nitrates are not better) and considering that many CFS 'experts' believe there is a disregulation in the Nitric Oxide/peroxynitrite cycle, consuming nitrates COULD be a bad idea.

    4) Salads (and raw vegetables) can be ok in small amounts. For me, eating large salads were a major IBS-C trigger. My system does not handle raw insoluble fiber well at all. However, I do extremely well with soluble fiber.

    5) Nuts, seeds, beans, whole grains: have high levels of anti nutrients like phytic acid that bind to nutrients which prevents them from being bioavailable. Traditional cultures spent a lot of time preparing these foods to eliminate the anti nutrients (by soaking or fermenting) to make them digestible. Plus, nuts that are not in their shells are likely already oxidized by the time you buy them and also contain a ton of nasty chemicals (California passed a law a few years ago that all "raw" almonds have to be fumigated with propylene oxide gas (which is a racing fuel). This chemical is a known carcinogen that is banned in the EU, Mexico, and Canada.

    6) Fish, while containing a lot of good things, also contain a lot of bad things (namely heavy metals and who know what kind of pollutants). Plus, much of our modern fish is farmed nowadays and pumped full of antibiotics and hormones and farmed in extremely polluted waters. Not sure eating lots of fish is a great idea.

    I myself have tried EVERY kind of eating regiment under the sun (and I do mean everything from no/low carb paleo to high carb Ray Peat) and I never experienced any improvement. This is not to say that other people won't feel better following some of these recommendations, but ultimately everyone needs to figure out what they should eat and what they shouldn't. Just because someone else can't tolerate corn or cucumbers doesn't mean I should avoid them. However, just because I can't tolerate lots of salads doesn't mean someone should avoid them if they have no problem with raw veggies.


    I could keep going on, but I'll get off the soapbox now. The point is, some people may do well on this diet, but probably just as many people won't. I believe that healthy eating is critical for good health, but there is clearly no one right way to eat for CFS. If a healthy diet makes a big difference, then you probably didn't have CFS.
     
    Last edited: Feb 25, 2017
    Kenshin likes this.
  5. Lissyleigh

    Lissyleigh

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    It's kind of frustrating as I find a healthy diet stops me from getting worse (which especially happens if I consume my main problem foods) so i need to maintain it, but so far I haven't seen any major improvement. Not getting worse is a definite bonus though.

    I know someone with m.s whose diet has helped her remain in remission so I have to gently challenge the notion that experiencing improvement via diet means not having cfs/m.e or any other immunological/neurological condition. It just depends on ones own make up and what may have contributed to the development of disease.
     
    MeSci likes this.
  6. bearVSshark

    bearVSshark

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    For me I think of my ME/CFS as having fatigue/muscle pain as the primary issue with numerous 'sub-issues' surrounding it, and I figured if I can reduce these sub-issues it will make living with the main things a bit easier.

    By changing my diet, I've been able to deal with a lot of my food intolerance/IBS/low blood sugar problems. Before changing my diet I would go through massive highs and lows in terms of blood sugar, which meant highs and lows in terms of energy. I'd be bloated and nauseous all the time and would frequently get headaches. This was all when my diet consisted primarily of carbs.

    I read some research saying that some people with ME struggle to take energy out of carbs, hence the symptoms mentioned. By switching to a high protein, low carb, low sugar diet (essentially a less restrictive Paleo diet - I still eat oats), I feel sick less, I no longer feel nauseaus, my headaches have reduced and I have more constant energy.

    This has also been helped by eating 6 smaller meals a day, instead of 3 large ones, again reducing blood sugar spikes. I've also massively gut down on gluten (no need to be 100% gf) which has again helped with bloating, sickness.

    I'm also starting to reduce my dairy intake to see if it has an effect on eczema/rosacea (also, the more I think about the concept of the dairy industry, the more it seems weird!).
     
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  7. Lucy1996

    Lucy1996

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    I’m sorry this point doesn’t exactly fit to this thread but I figured it’s a decent place to ask!

    Is there any benefits in cutting out sugar??? To reduce chronic infections (sinus) and given my EBV and shingles cause of my CFS & I’ve heard anecdotal stories.

    It would be so difficult to give sugar up (alcohol is already given up what other joys are there) but at the same time I would do anything for improvements...
     
    Last edited: Feb 1, 2018
  8. bearVSshark

    bearVSshark

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    Processed sugar is bad for anyone, regardless of their health, so cutting it out of your diet (or at least reducing it) can't hurt!

    Personally, I'd say cutting out as much sugar (both refined and as carbs) as I can (I still drink alcohol, eat the occasional cake etc) has helped because it's one less stress my body has to worry about, especially when it comes to blood sugar crashes as that was always a trigger for a full-on crash for me.
     
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  9. Lucy1996

    Lucy1996

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    Yeah!!! I think it’s definitely something for me to work on these next few months.
    I find breakfast a difficult one .... cereals too sugary, toast too carby. Do you have any suggestions ? :)
     
  10. Kenshin

    Kenshin Senior Member

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    Switching from sugar to honey or maple syrup is pretty sweet, I know, its still sugar, but at least it comes with extra goodness. Some of us actually rely on simple sugars since our digestive system is too broken down to deal with heavy carbs, and maple syrup is packed with nutrients like manganese.

    I also do not get major improvement from diet change, but do better without bread or heavy carbs, I stick to rice because the other grains stick to me!

    I wonder if dairy is so bad really, it's crazy how much its been demonised.
    I don't find dairy problematic.
    Butter in particular is very healthy, and it goes with almost anything.

    Pretty much all the "problem" foods for me have one thing in common - They come from plants.
    I avoid nuts, wholegrain, fibrous fruits and vegetables, though most non starchy cooked veg is pretty ok.
     
    Lucy1996 likes this.
  11. Timaca

    Timaca Senior Member

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    I eat a hot rice cereal that I one chopped date, some diced fruit (such as apples, pears, mangos or even all three) and some mashed beans to (for protein) before cooking. I really enjoy it!

    I don't eat any sugar or any junk food. I don't miss it. Your taste buds will adjust. I take great pleasure from eating fruits now. They are so very sweet!

    Good luck!
     
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  12. bearVSshark

    bearVSshark

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    I found breakfast difficult too. I do eat cereal, usually Mesa Sunrise which doesn't have too much sugar. But mostly midweek I make overnight oats - so mix oats with milk (I use coconut milk) and some Cinamon and leave overnight. Then add in some seeds/banana/raw honey etc. Good slow release energy and you don't need to add too much sugar to get that sweetness.

    And then weekends it's eggs and avocado, that classic millenial dish
     
    Lucy1996 likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Instead of sugar I use xylitol - it's a natural substitute and tastes the same as far as I can make out. Alternatively there is erythritol - also natural, I think. Xylitol is toxic to dogs - seems to be OK for cats but I keep it away from them just in case.

    There is lots about xylitol, and a bit about erythritol, on this site - just do a search using the box on the top right.

    I'm surprised at the things @Kenshin avoids - they are the things that I eat!
     
    Lucy1996 likes this.
  14. Lucy1996

    Lucy1996

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    Thanks for all your advice xx

    Today I made a banana smoothie with overnight oats! I think this is the start of something good! I know it’s not sugar free but I felt my energy was somewhat more than normal.
     

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