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How successful are diets for cfs?

Discussion in 'General ME/CFS Discussion' started by knackers323, Nov 16, 2013.

  1. knackers323

    knackers323 Senior Member

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    I've been looking into diets like paleo, raw food, gaps, scd as there is a lot of talk about food intolerance, leaky gut and dysbiosis being big factors if not the cause of cfs.

    I was wondering if anyone knows of anyone that these diets have seriously helped?

    I have heard of people getting improvements in one or two symptoms, but I'm talking about major improvements, mainly in regard to fatigue.

    I am changing from the raw paleo to the gaps diet but I wonder just how likely it will be any help.

    It is very hard to strictly deny yourself of the one thing that you are still able to get some pleasure out of.
    xchocoholic and aimossy like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    I dont think its at all the case of something like try paleo just cause you have CFS thou I know some ME/CFS specialists like to think along that line and recommend it to all their CFS patients.

    I think what is actually important diet wise is to work out what food sensitivities you have (if you have them), fructose intollerence, lactose or diary intollerence (dairy at one point was just giving me headaches), gluten intollerance or celiac disease etc.. not being as well after artificial sweeteners is a big one I think many of us have. I found that while I had foods I was eatting that I was sensitive too, not only did I then have more symptoms due to that but also it seemed to make MCS worst too.

    It took me a long while to figure out I had food sensitivities going on.. and then even longer to work out what foods exactly I was reacting too (thou a few were easy to work out.. with others I needed a certain amount of a food for me to react so wasnt so obvious).

    Anyway.. undetected food sensitivies can have one feeling overall a bit worst (for some, much worst).

    I see one specialist who has given talks on CFS and food issues at times and he's even had CFS patients come to him in wheelchair he's helped. He found that many CFS people who had some issue around food, actually have hyperinsulinemia (abnormal insulin levels. A 2hr Glucose tollerance test with the insulin included is needed to pick this up). Hyperinsulinemia he calls the pandoras box of illnesses as it can cause so many different symptoms (something most doctors seem to be unaware of). Most foods can cause insulin spiking.

    I know for myself when Im having an abnormal insulin spike with my hyperinsulinemia.. it seems to affect my immune symptom as one of the symptoms of me breaching the diet for my insulin is a sore throat. I also wake up feeling tired in the morning (which I dont usually do otherwise unless I overdo activity.. with insulin testing we found my insulin is still abnormally high the next morning).

    I was on meds for GERD (I dont get that at all now to the special diet Im on for my insulin isssues)... ontop of that, foods triggering off high insulin in me also gave me massive mood swings and turned my PMS into PMDD (one of the most common symptoms thou of insulin issues is bloating which of cause many of us have). Too high insulin also gives me nausea. I think it was affecting my over all health a bit more too. All the above symptoms from this (probably more which I didnt connect. Some who had a CFS diagnoses didnt have CFS after all but actually just had insulin issues which are fixable with diet!!).

    So yes, Im going to say special diets certainly help if you find what issues you have and then do your diet accordingly. Foods can be making your ME/CFS worst.

    Ive recently started to feel not as well when eatting eggs, it was mild so I wondered if I was imagining it or not.. or are the eggs really doing something not good to me? it felt like they werent good. So I ended up (and due to a deficiency I also had) suspecting a certain gene polymorphism going on. I then had a 23andME test done which ended up confirming it (causes issues with sulphurs so hence the issue Im now having with eggs. Its best for people with this to avoid them.. I should avoid things such as broccolli due to that too).

    Tailor your diet to suit you!! Dont go thinking that just cause a food is normally "healthy" that it is for you, that's a big mistake when those with ME/CFS have so many different food issues. Raw food diets can be a problem for those with absorption issues, many raw foods can also cause issues for those who have insulin issues (eg raw corn and bananas and even fruits are problems for those who have high insulin).

    I personally think its very important for us to be eatting as many different foods as we can and not the same ones all the time, due to our high risk of developing food sensitivies (excluding those of cause we know we have isseus too).
    Last edited: Nov 16, 2013
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  3. xchocoholic

    xchocoholic Senior Member

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    Imho, Dr Cordain explains why the paleo or Hunter gatherer type diet is important for our bodies. Dr Wahls went one step further tho and emphasized the importance of fruits and veggies. Leaky guts may lead to oxalate regulation problems too and from what I saw neither address this.

    I doubt most severe pwcs can follow any diet exactly tho because of our limitations.
    Between brain fog, OI, fatigue and limited income I can't keep up if I want to do anything else.

    Grains and legumes are bad for my hyperinsulemia. Eating meat several times a day helps regulate this. Digestive enzymes help but not enough. Without proper breakdown of meats and fats blood glucose is hard to regulate.

    tc .. x
  4. knackers323

    knackers323 Senior Member

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    I agree but the problem is knowing if a food or diet is helping or hindering. Just because we don't get immediate noticeable improvement or symptoms, does not tell us if we are on the right track or not.
    xchocoholic likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    True. Dr Hadjivassilou, gluten ataxia researcher, tells his patients that it's going to take a year to see an improvement in their ataxia. It took me exactly one year post gf diet to start walking normally. My ocular ataxia, heavy legs and arms cleared up soon afterwards.

    I actually produce antibodies to egg whites but don't feel anything at all if I eat these. I get phlegm in my throat within a few minutes of eating soy except when it's in chocolate. Dairy causes shiners as well as Paget's flare. The list goes on and on.

    It's so weird how our bodies create certain symptoms from certain foods. I wonder if that's genetic since celiac disease is. Well except when villi damage is from other causes, like nsaids.

    It's going to be harder for pwcs to find these with our limitations. It's taken me years to be confident in my reactions. Most of my reactions are the same as they were when I started the elimination diet back in 2005. But I'm a celiac who still had significant damage 17 months post gf diet.

    g nite. x
  6. Beyond

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

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    Knackers ideally we would be getting testing regularly for food intolerances and allergies, and cycling our diet according to the results (you develop sensivities to foods you regularly eat when you have leaky gut etc).

    I wonder if something can minimize the immune/histamine response to foods, given that me for example I cannot test my food sensivities and I am 100% sure I eat foods that I am intolerant too (eggs for example, but I cannot ditch them). Maybe quercetin?

    http://onlinelibrary.wiley.com/doi/...sCustomisedMessage=&userIsAuthenticated=false
  7. ukxmrv

    ukxmrv Senior Member

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    Diet has been the one of the least successful treatment I've tried for ME symptoms. Tried so many and for long periods. Gluten free and dairy free for over a year was one of the first. Anti-candida, low allergen, vegetarian, macrobiotic, juicing and much more. Most of these made me feel worse.

    In the my first year of having ME I developed allergies to things that I had tolerated. However cutting these out of my diet didn't improve my overall symptoms.

    I've learned a lot about what works best for my body but overall no improvements that have been worth the effort of the restricted diets I've tried.

    We are all different and I know patients who have made great improvements and discovered that foods are their main problem.
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  8. madietodd

    madietodd Senior Member

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    I'm having some amazing results after a month on Wahls' diet. I'm completely off the couch, I go out every day if I want to, and I'm cooking a lot. My brain fog is gone and my memory has improved.

    I think food sensitivity is much more complicated than we know. I think there are lots of pathways that can be working poorly. Am I allergic to legumes because I feel better when I avoid them? Or is that part of a problem with carbs? Or with some specific chemical in legumes? I have no way of knowing.

    I'm on her strictest form of the diet, and was surprised when I got a big boost from deciding 2 weeks ago to stop eating eggs. I've had scratch-testing, and didn't react to any foods.
    Hanna likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You already know my views and experience on this so I won't bore you with it again
    here, just to say that I would expect fatigue to be one of the last symptoms to go if
    the theory of leaky gut leading to autoimmunity is correct.

    Improvement in other symptoms could be due to removal of allergens and foods that are
    not tolerated, and/or improved nutritional status due to absorbing nutrients better
    from a healthier gut.

    But I suspect that the fatigability is due to autoantibodies affecting our ability to
    produce chemical energy (ATP) the healthy (aerobic) way. If the
    leaky-gut/autoimmunity theory is correct, it may take a long time for autoantibodies
    to stop being produced after the gut is healed. Think of vaccines as an analogy -
    people need boosters for some vaccines as the antibodies gradually stop being
    produced. If you heal the gut, so that the triggers for autoimmunity stop appearing
    in the gut wall and/or the bloodstream, the production system for autoantibodies will
    no longer be triggered, and they will only continue being produced as long as the
    downstream production process continues, which hopefully is not self-sustaining.

    @Jonathan Edwards explained autoantibody production in a lot of fascinating detail in this message in the thread about rituximab

    and this one.

    (That's not to say he is a fan of leaky-gut theory!)
  10. Beyond

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

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    Thing is, what´s good of avoiding some food sensivities if within the leaky gut scenario you develop new ones from the foods you use to substitute the offending ones? I think the best is getting tests for IgG sensivities from time to time,do the leaky gut diet and take supplements to heal the gut lining and lower inflammation.

    Plus, while having very low cortisol (adrenal fatigue) and other hormonal imbalances (thyroid, estrogen) intestinal inflammation and function WILL NOT heal completely. In fact, these imbalances are either a cause or a consequence of leaky gut, depending of the case.
  11. madietodd

    madietodd Senior Member

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    Are there reliable food allergy tests out there? I've had gliadin sensitivity tested 3 different ways in the past year, and one was high, one was only a little above normal, and one was in the middle of the normal range. Saliva, antibody, and stool, but I don't remember which gave which result.

    I can buy some comprehensive blood testing from direct labs and such, but I don't really trust it. Have there been good studies?
  12. Beyond

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

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    That inconsistency sucks. In all the studies I´ve seen they use IgE and IgG antibodies in blood though. I have had also very different lab results in urine, saliva and blood.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Anti-gliadin antibodies tend to decrease and ultimately disappear when people go gluten-free. Could this explain it? There's some info about this here.
  14. madietodd

    madietodd Senior Member

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    I've been gluten free for a very long time.
  15. Dainty

    Dainty Senior Member

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    Avoiding foods that my body doesn't like and listening to my cravings has been a key factor in my healing process. This basically shakes out to a rudimentary form of muscle testing.

    Even if there's a food I have a long history of tolerating, if I don't feel like eating it I've learned to go the extreme of even allowing food to go bad rather than "just finish it up" because one meal where it's not right for my body has major consequences. My body is pretty smart about what it wants, and I've learned my life is a lot more simplified if I just give it what it's asking for and don't force anything upon it.

    As I've been experiencing dramatic improvement this past year my diet has naturally branched out from the 3-5 foods it was at for so many years prior, and before that it was often down to one food or even no foods as I was forced to rely on nutritional IVs because any food caused life-threatening reactions. I've never intentionally tried to expand or limit my diet; I'll go through phases of trying new things when my body is ready for it and will retreat to old standbys when, for whatever reason, my body can only physically handle those.

    I don't need to understand it, I just need to follow the rules and no one gets hurt. lol
  16. knackers323

    knackers323 Senior Member

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    See if I have any cravings, it is for the things I know are no good. So I can't relie on them.
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  17. Dainty

    Dainty Senior Member

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    How do you know they're no good?
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm not the person you asked, but I think it's fairly well-established that sweet foods are often craved, and that they are bad for us if the sweetener is sugar or one of several other artificial sweeteners.

    I have had to resist such cravings, especially when I initially went low-carb, and it has really paid off - and it gets easier as you get used to the new diet. I still get occasional starch cravings (usually when feeling low, or unwell due to PEM), but resist them as much as possible. I've been doing this for over a year now, and it really works well for me.

    Don't forget that cravings are the main reason that addictions are so hard to kick. I've been there too...

    It's a case of listening more to the body than to the brain, although with physical addiction you can't trust your body either.
  19. knackers323

    knackers323 Senior Member

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    That's correct. The things I occasionally crave are the things I know I have to avoid in the first place. Anything from a piece of toast to ice cream to pasta.

    What do you mean when you say it has really paid off? Thanks
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    See this page/thread.

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