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Lack of chatter about the Ketogenic Diet

Discussion in 'General Treatment' started by bsw, Aug 18, 2015.

  1. Plum

    Plum Senior Member

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    @justy I know in the last year or 2 Dr. M has been a strong advocate of the ketogenic diet. Her FB group was discussing it a lot for a while. At the time only a couple of people/patients were saying that had benefit from it.
     
  2. SOC

    SOC

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    Many PWME have high levels of chronic inflammation and need to avoid inflammatory foods. A significant portion of acceptable foods in the ketogenic diet are inflammatory (nuts, dairy, large amounts of meat, many vegetable oils). Trying to maintain a ketogenic diet while also limiting inflammatory foods would leave very little on the acceptable foods list.

    It's great that the ketogenic diet is beneficial for some, but it is not likely to be the right diet for a lot of PWME, which is why you don't hear a lot of chatter about it in ME circles.
     
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  3. Hip

    Hip Senior Member

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    This issue might easily be mitigated by taking prebiotics (food for friendly bacteria) with your ketogenic diet. A prebiotic like inulin is low calorie: inulin contains around 1.2 kilocalories per gram, which is pretty low, since ordinary carbs contain around 4 kilocalories per gram.1

    The average Western diet has 2 to 4 grams of prebiotics daily. The recommended daily dose of prebiotics is around six grams, which would equate to 7 kilocalories. 7 kilocalories of carbohydrates is pretty negligible, given the total daily food intake of energy is around 2,000 kilocalories.

    This combination of ketogenic diet + prebiotics might conceivably lead to a very healthy gut, because the prebiotics generally only feed the good bacteria, so the bad bacteria will be starved off because there will be very few carbs or sugars for them to eat in the ketogenic diet.



    In ME/CFS terms, that is a very good improvement in health: the bed-bound state is severe ME/CFS, and being able to work part or full time is mild ME/CFS.

    So it appears that the ketogenic diet shifted you from severe ME/CFS to mild ME/CFS. That is a two-category improvement. Good by anybody's standards.

    Are you still following this ketogenic diet after 16 years? Have you ever taken a break from it, going back to a normal diet for a while? If so, did your more severe ME/CFS symptoms begin to return during this break?



    In my experience with 2 month long juice fasts, I found it was the transition period, from your normal diet to the juice fast, where all the problems of feeling worse occur. I was getting headaches, mood swings, irritability, etc during the transition period into the juice fast, a period that I found lasts around 2 weeks, until your body adapts to the new diet. But after 2 weeks, once you adapt, everything is fine.

    Later I realized that you could avoid all the problems of the 2-week transition period if you did not abruptly change your diet, but gradually changed to the new diet over two weeks.

    So I imagine the same may be true of ketogenic diets: if you gradually transition into this ketogenic diet over a 2-week period, you may not go through a period of feeling worse.
     
  4. Art Vandelay

    Art Vandelay Senior Member

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    @Hip I'm still on the diet. Initially I was diagnosed with insulin resistance, so a low carb diet was sold to me as a way of stabilising my blood glucose levels. I found quite early on that restricting carbs beyond what was recommended made me feel even better. In fact, any hint of a carb except for green vegetables would see my old symptoms return pretty quickly so I have had few incentives to change the diet too much.

    I have had some setbacks and many relapses over the years, which I attribute to following some very bad advice from doctors about exercising and pushing myself. Also, my blood glucose and insulin levels were still unsatisfactory, so I ended taking metformin (which has allowed me to relax the diet a little without many consequences).

    These days, I'm working from home around 15 hours a week so I would say that the diet improved me to a point, after which, I plateaued. (Although the overall effect is a little hard to quantify because I'm suffering some substantial side-effects from using the Marshall Protocol for suspected Lyme.)
     
  5. Hip

    Hip Senior Member

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    So do you think it would be correct to say that the significant improvements in your health may have come from treating two underlying conditions that you have, ME/CFS and also insulin resistance, using the ketogenic diet?

    That is to say, you may have killed two birds with one stone, and this could explain why you had such large leap in health from a ketogenic diet.



    I came across a study (can't find it now) in which I think either caloric restriction or restricted carbohydrates in conjunction with metformin was used to create a ketogenic effect. Apparently metformin stimulates the production of ketones.

    I also read that by consuming a medium-chain triglycerides (MCT) oil such as coconut oil in place of some of the long-chain triglycerides (LCT) that most dietary fats are made of, you can also relax the strictness of your ketogenic diet a bit, because MCTs are more readily converted to ketones than LCTs.

    I wonder whether eating desiccated coconut might be a good way to get MCT oil, since desiccated coconut is rich in coconut oil (but also a small amount of carbohydrates). I believe 90% of the calories in desiccated coconut come from its fat content, and only 10% from the carbohydrate content.



    I tried the MP for a couple of months, several years ago, to see what effects it might have on my ME/CFS. After a month on the MP, I started to get the light sensitivity reaction, and had to wear sunglasses on sunny days, but that was no big deal. Unfortunately I just stopped the MP after two months, so I don't know what would have happened if I had stuck to it for a longer time. I think you have be on it for a few years to see benefits.

    How long have you being on the Marshall Protocol?
     
    Last edited: Aug 21, 2015
  6. ahmo

    ahmo Senior Member

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    Very interesting re coconut oil. I've just put it back into my diet, substituting for some of my beef fat intake.

    Re coconut, beware that dried fruits tend to be treated with sulfites. I had to get rid of a big bag of coconut I bought to make coconut milk, when it turned out my body was reacting to it.
     
  7. Hip

    Hip Senior Member

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    Yes, I have noticed that some suppliers of desiccated coconut use sulfite as a preservative, whereas other suppliers don't use any preservative. So you can get a preservative-free version.
     
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  8. Art Vandelay

    Art Vandelay Senior Member

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    Hi @Hip, thank you for the information, all this is very interesting. I haven't tried coconut as yet and will have to do some more research.

    To respond to your questions, my theory is that my improvement after starting the diet was due to a few factors:

    - I believe that my ME/CFS has a bacterial cause (or component at least), so going low-carb helped reduce the amount of glucose that the bacteria had to feed on. From my experience, this is a fairly common approach for patients on the Marshall Protocol and some Lyme treatment protocols.

    - I've read a few articles linking insulin levels to inflammation. My diet did reduce my insulin levels and I certainly feel less inflamed when I eat fewer carbs. This is another interesting take on carbs and inflammation.

    - I am unsure of the mechanism, but I am sure that my insulin resistance is related to or somehow caused by my ME/CFS. I wasn't insulin resistant until after I caught EBV and came down with ME/CFS and, indeed, the doctor that diagnosed me with insulin resistance said it was a very common condition among his ME/CFS patients. The diet alone (and exercise) didn't eliminate my insulin resistance but it did improve. I really should have it checked again but I find the test very unpleasant (usually a 2 hour glucose tolerance test with matching insulin levels).


    It's interesting to hear that you tried the MP after a few months and that you started to experience light sensitivity. Did you get any benefits from the MP? I find that the Olmesartan/Benicar is beneficial for most of my symptoms, particularly inflammation, insomnia, brain fog and PEM. That said, Herxing can temporarily negate a lot of these improvements.

    As you say, they are finding that many patients need to be on the MP for a long time. The length of time it takes seems to depend upon how long you've been ill, gender (men seem to improve quicker than woman) and age (younger people recover more quickly). I've now been on it (with a few breaks) for around 7 years and have seen pretty significant, but slow, improvement. It is definitely not a quick fix: I spoke to a guy who had CFS/Lyme who is now completely recovered after 11 years on the MP.
     
  9. alicec

    alicec Senior Member

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    If only it were that easy! As many of us found on the Resistant Starch thread, concentrated prebiotic sources are just not tolerable in anything but tiny amounts. I can eat any amount of inulin rich vegetables (and I do) but 1/4 tsp of inulin/FOS causes problems. In any case and despite what the manufacturers of inulin supplements would like to convince us, inulin feeds just some of the gut flora. To have a healthy gut a wide range of prebiotics are needed and a ketogenic diet omits some very important categories of flora food.

    Setting that aside, I wonder how much of the benefit is simply due to improved diet - ie removing processed food, concentrated sugars, damaged fats etc and eating real food, including more vegetables.

    Finally are we really talking about ketogenic diets here (which as I understand are really high in fat to induce ketosis) or low carb paleo which may or may not induce some ketosis.
     
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  10. WoolPippi

    WoolPippi Senior Member

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    Then for some people it must not be necessary to have the gut flora that thrives on carbohydrates. A lot of people do well on ketogenic diet without the need for probiotics or vitamins. (Ketonic foods don't require additional vitamins for digestion, in contrast to foods like vegetables, fruits and starches)

    Lots of people come to ketonic diet after years of healthy dieting. The gain in energy is still enormous and the levelling of brain chemistry proven.
    I agree processed foods and the things you name are a burden to the body and should not be eaten.

    May you have a preconception that eating (more) vegetables is healthy? This may just be the prevailing assumption everybody makes in this time and age but not be necessarily true.

    There are pros of course (vegs feed gut flora; grind off the villi of the intestines; export waste to the exit; create loose stools; are a delight to eat; look pleasing to the eye; fill) but these may not outrun the cons (vegs take sooooo much energy to digest; gut pain; reduced motility; gas; stinky stools; raises blood sugar (by being sweet or by being bulky); messes up the acidity of the stomach if combined with other foods).

    Here we are talking about both, indeed. A true ketonic diet makes the body cells switch onto ketones for energy instead of carbs. It's the mitochondria that change modus.
    It should be a mild ketosis. You can feel the switch usually with a bit of a head ache and the need to drink more water.

    On a true ketonic diet you can eat as much as you like, 5000 kilocalories if you want. Your body only takes what it needs and the rest is expelled (through pee and breathe and sweat).
    A ketonic diet is not meant to lose weight or gain weight, one will merely gravitate towards a healthy weight.

    The thing is, on a ketonic diet, food becomes just a daily "chore". Like brushing your teeth is or putting on clothes. There's no hunger in our days. No hunger! ever! imagine that. No weakness, no longing, no cravings. We just are, constant, the whole day long. With energy and focus to spare for other things than food and diet.

    But also not the ecstatic delight of eating such as induced by eating peanut butter or cream pastry or pizza will give. The desire to want to dig your teeth in? That's gone.
    Not that we eat bland food (it's fried chicken and steak and cream and custard and chocolate and a bit of salad and eggs) it's just that eating is not so much of an event anymore.
    Which is why nobody but extreme athletes will eat those 5000 kilocalories. There's no hunger or dropping blood sugar incentive. And why people on it don't mention it much, it's just a daily thing we do, not a big thing.
     
  11. WoolPippi

    WoolPippi Senior Member

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    I sometimes am on true Ketonic diet but sometimes am not and eat veggies and even sweet things.

    On Ketonic you are in different pace, mentally. A little slower than modern life awards. It's like you're running on diesel: steady and trustworthy. But sometimes I want to feel like the child of this times and want to run with the caffeinated, sugared-up crowd. Go go gasoline baby! You don't want to be on ketones.

    And I really like vegetables and sometimes crave them. My liver likes them better, I sometimes think. Then I eat them. Well cooked (celery, zucchini or a few leafs of raw salad). hmm!

    I know that, in mixing veggies with a ketonic eating style, I put my blood lipid levels at risk.
    By eating sweet things or anything bigger than my fist I endanger my insulin levels. If I do this I make sure the sugar is used straight away by either muscle or brain.

    Then my system tires. Or gets wired. Or my gut hurts. Then I revert to eating gelatine rich foods, without veggies. Because gelatine/broth is the easiest food to digest and the most nutrient dense. Then I'm back at keto, steadily going through the day.

    edited to add: I'm not well versed on Paleo but if there's nuts or raw foods involved, I'm strongly against that. My body doesn't like those one bit, way too much energy needed for digestion.
    I think everybody should find out about their body and on what it thrives.
     
  12. Hip

    Hip Senior Member

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    I was not previously aware of a link between insulin resistance and chronic fatigue syndrome, but this study found an association between ME/CFS metabolic syndrome.

    Metabolic syndrome (which is also called insulin resistance syndrome) consists of elevated fasting plasma glucose (hyperglycemia), abdominal obesity, elevated blood pressure, high serum triglycerides, and low high-density lipoprotein (HDL) levels.

    I wonder if ME/CFS patients should be routinely checked for insulin resistance, especially those with abdominal obesity (like myself). Though when I last checked with a home blood glucose meter, my morning fasting levels were well below 100 mg/dL, usually around 80 to 90 mg/dL when I first get out of bed.


    I came across this article on how one might use a blood glucose meter in a simple home test to check for insulin resistance (though it's author Chris Kresser is a bit of an alternative health apologist). He explains the oral glucose tolerance test here:
    I am presuming you may be able to do this test yourself at home, simply with 75 grams of glucose and a blood sugar meter.



    I would like to try the MP again for longer periods, but I find it hard to motivate myself (and pay for the drugs) if I have to think in terms of say 5 years before I reach significant improvements (which may or may not manifest). And even if you do get better over such a long period, there is always the issue of wondering whether you may just have got better naturally.

    If you take a medication that leads to improvements in your ME/CFS symptoms quite quickly (say over weeks or months), and if those improvements also disappear again within weeks or months of stopping that medication, then you can feel quite confident it was the medication that was responsible for the improvements. But when the improvements take place over half a decade, unfortunately it can be harder to link the improvements to the medication.

    Another discouraging factor is that I have not seen that many reports of improvements in ME/CFS using the MP. Although I did come across two ME/CFS recovery stories on the inflammation therapy website (inflammation therapy appears to be an offshoot of the Marshall Protocol, but is basically pretty much the same thing).

    I did get the impression that even after just two months on the MP, my anhedonia symptoms appeared to improve. So that is motivation to try it again.



    It is intriguing that quite a few ME/CFS patients (48% according to this poll) cannot tolerate prebiotic supplements. This requires some careful thought to try to figure out why this occurs in some patients. This phenomenon might provide some clues as to the nature of ME/CFS, or at least as to the nature of the gut problems often experienced in ME/CFS.

    I wonder though if those prebiotic-sensitive patients also have a problem with foods high in prebiotics, such as the following foods:
    Are you sensitive to any of these foods?



    Do you have any good references for the inability of inulin to feed all the friendly bacteria in the gut?

    In any case, I don't see why in a ketogenic diet you can't eat a wide range of prebiotics, such as some of the foods listed above that don't have a high carbohydrate content.
     
    Last edited: Aug 21, 2015
  13. A.B.

    A.B. Senior Member

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    What ketogenic diet feels like for me. Low energy and vitality, aching body, prone to pessimism, anxiety and nightmares, feeling of starvation. Similar to states that precede an episode of hypoglycemia. Clearly physiologically stressed. Also a bad taste in the mouth (presumably the acetone produced by ketosis).

    I'm one of those people with insulin sensitivity. My blood glucose was below 45 mg/dL during a 3 hour glucose tolerance test.
     
  14. girlinthesnow

    girlinthesnow Senior Member

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    A pure ketogenic diet gave me chronic constipation.
     
  15. Art Vandelay

    Art Vandelay Senior Member

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    @Hip thanks very much for your reply and those links. My doctor at the time screened all his new CFS patients for insulin resistance or metabolic syndrome as a matter of course. He apparently got the idea from this specialist (who I also saw a year later). He is quite brilliant and eccentric (but I don't agree with his ideas on exercise).

    Both these doctors agree that the current method of testing for insulin resistance and, indeed, diabetes is flawed because it doesn't take insulin levels into account. For example, my blood glucose results during the glucose tolerance test would be categorised as 'normal'. However, my corresponding insulin levels were many orders of magnitude higher than normal. As they explained it, my body was having to produce enormous amounts of insulin just to keep my glucose levels 'normal'. This is an early warning sign of insulin resistance and diabetes but is not even considered or tested by almost all medical professionals.

    I definitely understand your point of view on the MP. I have continued on it because I believe that it is making me better. Before I started the MP, my health was actually declining and I feel that it has reversed that trend. Moreover, each time I have stopped the protocol, my symptoms have worsened and I no longer feel like I'm making any progress.

    I generally don't strongly advocate for the MP on here because I have heard that it doesn't work for everyone and, in my experience, the Herxing that it trigger can be an extremely awful. My first few years on the protocol were a nightmare (although that may be partly because I was prescribed a dose of olmesartan that was way too low). Moreover, the side-effects (eg, light sensitivity) and length of time mean that it is a big commitment.
     
  16. Hip

    Hip Senior Member

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    That really is very eye-opening: the idea that blood glucose might be normal, but because of insulin receptor insensitivity (insulin resistance), insulin levels become very high, just in order to compensate for the insensitivity, and keep blood glucose at normal levels.

    I always assumed a blood glucose test would uncover any insulin resistance, but from what you are saying, this may not necessarily be the case.

    I found this book by Dr Byron Hyde in which he says:
     
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  17. perchance dreamer

    perchance dreamer Senior Member

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    Jicama is also a food that contains inulin. However, I wasn't able to find how much it has by weight.

    I eat it almost every day and also eat a lot of other food that contains prebiotics. I'm sure jicama is not available everywhere, though.

    When they are in season, I also eat Jerusalem artichokes although they make me a little, er, gassy.
     
  18. alicec

    alicec Senior Member

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    Apart from chicory root, which I never see in the market, and Jerusalem artichokes, the only vegetable with a taste I really dislike, I can eat all of the listed foods with impunity.

    This is a list of fructan containing food - it is not only purified inulin/FOS that caused me problems. All of the concentrated prebiotics I tried needed to be treated with great caution.

    Tiny amounts appear to be beneficial so maybe it is simply a concentration effect. Food is not a problem for me and I always eat a lot of vegetables.

    Here is one looking at effects on some of the major butyrate producers in the gut as well as some Bifidobacteria and here and here are two looking just at Bifidobacteria.

    You will see in all of them that the laboratory creation scFOS is pretty good at stimulating all of the species studied and indeed there are small amounts of the shorter chain fructans in some foods. Predominantly though it is the longer chain inulins in food and these can be fermented by a smaller range of species. Interestingly the last paper shows that laboratory cleavage of the longer polymers mimics what the inulin fermenters do in vivo.

    However in a short-hand kind of way I was really alluding to the explosion of new information about the gut microbiota which has become available as a result of DNA sequencing and which has rendered most of the studies on prebiotics inadequate at best. The culture based techniques used in the earlier studies gave a completely distorted and greatly oversimplified picture, evidenced for example in part of the definition for a prebiotic - viz that it stimulates growth of Bifidobacteria and Lactobacilli - as if these were the only important gut species. Some still cling to this outdated notion in their analysis of prebiotics.

    There are so many species that we know little about yet and it certainly seems unwise to me to rely on a single or small range of prebiotics and assume that they will feed all, when prebiotic studies are so limited.

    Well I don't either though I wonder how many actually do. Still in my n=1 experience that is not nearly enough to stimulate the gut flora. With before and after uBiome analysis I have proved to my own satisfaction at least that addition of modest amounts of resistant starch at each meal (a prebiotic completely omitted by a ketogenic diet) makes a huge difference.
     
  19. alicec

    alicec Senior Member

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    Since that almost all of the gut flora this is a bit like saying that it is ok to replace a rainforest with a few monocultures. Personally I'm trying to encourage as much diversity as possible.
     
  20. WoolPippi

    WoolPippi Senior Member

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    I've got no explanation but some people do thrive on ketonic diets (which is not a no-carb diet btw). Scientific knowledge about the gut (flora) is still sparce, who knows in which quantity it needs what.

    Flooding a rain forest with processed milk and roasted grains doesn't sound very sustainable either. Not fair to ants. (i.e. please don't use false straw man techniques.)
     

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