1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

Diet and improvement

Discussion in 'General Treatment' started by knackers323, Oct 27, 2013.

  1. knackers323

    knackers323 Senior Member

    Messages:
    619
    Likes:
    105
    I have heard of some people saying diet makes a big difference to how they feel. I have even heard some say that diet has cured them.

    The diets are usually paleo based. No dairy, sugar, grains, preservatives or addatives and little if any fruit.

    Basically it's meat and vegetables. Raw veggies are usually preferred.

    Just wondering if anyone has tried this, if so how long does it take to see improvement and do the benefits compound the longer you stick to it?

    I ask as I have done this diet fairly strictly and felt immediate improvement. So much so that after only two weeks I thought if it continued at that rate I would be cured soon.

    However as usual it so far has not continued in this fashion.

    Anyone have any experience ?
  2. tinek

    tinek

    Messages:
    17
    Likes:
    4
    NYC suburbs - Bergen co
    I started Paleo two months ago and I see significant improvement too. I tried just gluten free and low sugar before and it is significantly better. They recomend doing strict paleo for 30 days to see improvement, and then you can relax it a little bit.
    I follow the guidelines from the "Practical paleo" book, great book has both the why and how and also applications for various medical conditions. I eat a lot of eggs and meat, cooked vegetables, no grains or sugars, no dairy except butter and heavy crem for cofee :)
    I have much more energy on this, the headaches and dizziness are gone, anxiety is gone (that could be from the L-glutamine I'm taking). I still have the muscle ache... but I'm not srict on the food recomendations (I do eat at a cafeteria or eat out and you can't control everything this way)

    From my research Paleo is the go to diet if you have any digestive issues and would fit great with the leaky gut/ gut inflamation theories behind CFS.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,830
    Likes:
    3,888
    australia (brisbane)
    i think they can helps with more stable blood sugar which helps with energy. Those who have been cured by diet probably had gluten intolerance which paleo and low carb diets are usually low in or maybe some other type of food allergy. So probably didnt have cfs/me but some type of food intolerance??
    maryb likes this.
  4. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    504
    Murcia, Spain
    The benefits for me are almost inmediate and not spectacular at all. No gluten, no dairy makes me wake up every night one or two times (usually two). While eating it I can wake up from 3 to 6 times per night. I do not feel much better but is obvious gluten and dairy make my body function worse. Paleo is the diet for us, but watch out for weight loss... it also needs more effort in cooking and buying and it bores the hell out of me.
    xchocoholic likes this.
  5. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,395
    Likes:
    998
    Florida
    It took a year of being gf before my ataxia vanished so I cringe when I hear people
    saying they didn't stick with it. Dr Hadjivassilou who discovered gluten ataxia tells his patients it will take one year minimum for their damage to heal.
    I've met others who say theirs vanished in
    3 months but I trust this doctor's experience.

    My biggest improvements have been from avoiding gluten, dairy, corn, soy and chemicals. I have unique reactions to each. As in dairy gives me shiners but I can't feel or see anything else. Soy milk causes phlegm in my throat within minutes. etc etc.

    I found that I don't have the inflammation
    on the paleo diet that I do if I eat non paleo.

    btw paleo is the same as hunter gatherer and caveman. Dr Cordain explains this.

    tc ... x
    SickOfSickness and Beyond like this.
  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    504
    Murcia, Spain
    Corn and soy are gut destroyers too. The problem with me and many others is food addiction. I seem to be addicted to bread and dairy. All my life I stuffed myself with white bread, pasteurized milk. Now I love spelt or rye bread and organic goat soft cheese, I try to lie to myself eating these when I am some months into paleo, that´s when the addiction really kicks in. But we have to stay strong. It is our fate to have "autistic" guts and eating these things is not worth it in the long term.
    SickOfSickness and xchocoholic like this.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,395
    Likes:
    998
    Florida
    It's really hard to fight the addiction when
    we're surrounded by advertisement and restaurants serving these foods. I found myself buying udi's gf pizza several times in a row because of all the pizza commercials on tv.

    And we've got all those memories of
    how good they taste. Creating new habits
    isn't easy.
    Beyond likes this.
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    504
    Murcia, Spain
    Oh yeah, just yesterday in the middle of the night with gut pains from poppy seeds I had a strange and intense flashback of how crispy roasted pizzas on an Italian restaurant taste like. I could feel the flavour in my mouth. We lost so much with this disease, but life is still worth living, all in all.
    xchocoholic likes this.
  9. knackers323

    knackers323 Senior Member

    Messages:
    619
    Likes:
    105
    When you guys eat like this. How long before the cravings kick in?
    I'm going through this now. I tend to do really well for about three weeks and then have a few days where I just gorge on all things I'm trying to avoid.

    This happen to you too?

    I've heard people say these cravings are things like candida or parasites/bacteria and we need to fight through them to kill it off.

    Or is it just a natural craving/desire to eat nice things?

    Is there any definitive test or way to test for candida overgrowth?

    Also does anyone ever get any negative "herx" like effects from following a diet like this?

    Thanks
    Last edited: Nov 4, 2013
    Beyond likes this.
  10. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    504
    Murcia, Spain
    I am quite positive is candida IF you have an strange, compulsive urge for sweets. And I am talking about fruit too. I cannot go without fruit more than a few days.

    I had these binge-crysis at the start, one year ago. If you persevere they will go away. Usually my binges occurred at night, because insomnia makes me need gratification/distraction. I don´t think the binges happen just because of the pathogens, is also because of a lifetime of eating things that make us feel better.

    Yeah there are scientific tests for intestinal pathogens. But is easier to look at your symptoms. A coated tongue is a good indicator, as so is skin problems, addicted to carbs, dandruff, smelly feet (the list is endless).
    xchocoholic and SickOfSickness like this.
  11. knackers323

    knackers323 Senior Member

    Messages:
    619
    Likes:
    105
    Hi Beyond thanks for your reply.

    How long into the diet did your cravings begin and disappear?

    I don't really crave sweets so much. sometimes it could be but its more things like bread or a packet of chips or something like that, just things I'm trying to avoid that I see everyone else eating. But unless you are eating only plain meat and vegetables you are eating lots of sugar. It is in absolutely everything.

    What would bad skin (excema), dandruff and smelly feet indicate? I have had all three my whole life. Thanks
  12. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    504
    Murcia, Spain
    They mean...candida! Dandruff and eczema are the same by the way. And I was addicted all my life to bread and all the "nice" things. Still am. And to chips. Just two weeks ago I was eating Spelt Bread trying to fool myself. But gluten is a nono for leaky gut, period. And I eat chips when I visit my grandma. Is my reward for going there lol!

    I know what you mean, I also THOUGHT I wasn´t addicted to sweets. But then I tried skipping fruit for some days. I went bonkers and ending eating like an addicted.

    The cravings never dissapear completely because of a lifetime eating shit and also a society that encourages eating these things, but when you are say half a year in the diet and you have read about what gluten, casein and stuff do to an inflammed gut then you are motivated and can go on. And even with a semi-paleo diet there are still nice things to eat. I never was able to do full paleo.

    Look, I haven´t felt much improvement from this healthy dieting. But is the foundation of any other protocol. Diet does not cure candida and certainty does not cure CFS. One thing that happened is that since doing this diet the eczema in the sides of my nose has been smaller, almost no itchy, and normally has not flakes. If I eat honey for example I wake up with lots of "dandruff" in the nose.
    Last edited: Nov 4, 2013
    xchocoholic likes this.
  13. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,495
    Likes:
    6,828
    Amersfoort, Netherlands
    Another possibility is that you're craving food because you can't burn fat. A couple small studies have shown that after exertion ME/CFS patients have up-regulation of a gene which suppresses lipolysis. In healthy people, fat can be burned between meals, and the lack of that happening might trigger the hunger. It would be especially bad overnight, when going 12 or so hours without eating.
    maryb and Beyond like this.
  14. madietodd

    madietodd Senior Member

    Messages:
    2,383
    Likes:
    1,535
    East Coast, USA
    Paleo doesn't restrict fruit, and doesn't prefer raw. I've been eating a paleo diet that emphasizes micro-nutrients (Wahls) and have been eating more fruit than before.

    It's too early to talk about benefits, but I haven't had any cravings.
    xchocoholic likes this.
  15. knackers323

    knackers323 Senior Member

    Messages:
    619
    Likes:
    105
    Is the smelly feet and eczema a sure sign I have a candida problem? They cannot be caused by anything else?

    I have had tests for candida and was told it wasn't a problem
  16. Daffodil

    Daffodil Senior Member

    Messages:
    2,616
    Likes:
    620
    why are corn and soy bad? there wont be anything left to eat!
  17. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    504
    Murcia, Spain
    They could be caused by something else... maybe, but my research of years points to candida/yeast. In whatever case, at least the skin disorder is 100% caused by imbalances in gut flora and/or leaky gut.
  18. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,792
    Likes:
    892
    US
    Beyond likes this.
  19. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,792
    Likes:
    892
    US
    I haven't noticed much benefit yet. I have been off gluten 3 months but have only been off dairy and corn for 1 month. I have been off peanuts and soy for longer.

    I know dairy, peanuts, and soy give me a reaction in well under an hour, and corn most likely too, so that part has disappeared, but honestly the reactions felt worth it. (How much I enjoyed eating them meant I was okay with feeling a little worse for minutes or hours.)

    Why I am eliminating them is in hopes of having greater benefit after a while.

    I have also cut down on nightshades for years but should try to go without for longer than I have.

    I am trying to follow Dr. Wahl's version, which is sort of like Paleo plus more fruit and making sure you get variety of vegetables. I am wondering if I'm having some bad reaction to increased oxalates because of adding more vegetables.

    I do eat some gluten-free grains but only 1-2 ounces most days with the occasional extra cup. A lot of gluten-free people are still eating cups of grains every day.

    I am not 100% but I will rarely have preservatives and food coloring, and I avoid the common worst sweeteners (agave, date sugar, sugar, corn syrup).

    One important point is, we are not just eliminating foods (being left with meat, fruit, and vegetables) but we are adding nutritious foods like seaweed, algae, fermented vegetables, wild caught fish and shellfish, flax or fish oil, pastured eggs, and grass fed meat.

    Edited to add: Also be wary of rice. It is gluten free in nature but many brands add gluten to it (and I don't believe they have to label it that way, so you have to check more carefully).

    Also many people develop bad reactions to some or all grains, even the non gluten ones. If they avoid that grain for a while, they may stop having the bad reaction. However, grains likely having mold contamination issues is one reason to avoid them as much as possible.
    xchocoholic likes this.
  20. Daffodil

    Daffodil Senior Member

    Messages:
    2,616
    Likes:
    620
    i heard eggs aren't too good for autoimmune conditions....in my food tolerance testing, it says i cannot have eggs.

See more popular forum discussions.

Share This Page