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Low carb/ketogenic diet for ME: rationale, evidence, experiences?

Discussion in 'Lifestyle Management' started by Sasha, Nov 20, 2012.

  1. Sasha

    Sasha Fine, thank you

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    Just read this very interesting article posted by merylg:

    http://forums.phoenixrising.me/inde...-used-to-treat-diverse-neuro-disorders.20523/

    Lately, I seem to be seeing low-carb diets for ME being mentioned all over the place and I have the impression I've somehow been missing this for years.

    There are many diets that are sort of incidentally low-carb such as the Wahls diet that some of us have tried.

    Just wondering, is there any research on low-carb diets specifically in ME? Does it seem like a promising treatment? What experiences have people had?
  2. xchocoholic

    xchocoholic Senior Member

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    Hi sasha,

    I tried this about 5 years ago for a couple of months when I was still eating legumes and grains
    before going paleo. I felt better initially but after a couple of weeks started feeling weak all
    the time. I checked my blood glucose regularly and it never went over 67.

    A freind got worried about me and insisted I eat some fruit. Evidently I was looking pale too.
    A few minutes after eating a pear, I felt great. I've never tried this since. By using the blood
    glucose monitor I realized that I feel best if my glucose is at least 80.

    I think it was Dr Myhill that said her pwcs couldn't handle a low carb diet but felt better on a paleo
    diet. Paleo and Wahls aren't low carb. Just no grains or legumes.

    She also says her pwcs have chronic hypoglycemia. I have hyperinsulinemia dx via gtt + insulin which causes my hypoglycemia.

    Tc .. X
    Sasha likes this.
  3. Sasha

    Sasha Fine, thank you

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    That's interesting, X. You certainly gave it a good test and got some good info out of that.

    I used to get hypoglaecemic between meals until I switched to a diet higher in animal protein (had to give up legumes as a source of protein) and a bit lower in carbs. There seems to be disagreement as to what's a low-carb diet. I think the Wahls diet is relatively low carb (berries are v. low carb and she stresses those as the fruits to go for, if memory serves) but maybe not enough for ketosis. I'm not sure if ketosis would be a key factor in low-carb diets helping PWME.
  4. nanonug

    nanonug Senior Member

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    Is that due to insulin resistance? Do you take metformin?
  5. xchocoholic

    xchocoholic Senior Member

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    I didn't realize dr wahls recommended low carb fruits or veggies. I understand not going crazy on high carbs fruits or veggies
    but I'm finding I need carbs. I drop weight quickly if I don't keep my calories up. It's probably because I'm a celiac.

    I concluded after tgat experiment that my body can't handle ketosis. I get petite mals throughout the day and need the glucose to stop these. An orange or oj actually work better than anything I've tried.

    I'm not sure how these seizures are connected to my oi
    but I get these with my pots episodes that happen anytime I'm upright too long so I still have to lay down. The mc meds helped my oi but not enough. At least not yet. I didn't expect 23 years of oi
    symptoms to disappear tho.

    Hi nano,

    I can't remember the details of my glucose testing. Other than it never got over 140 during that test. I "think"
    my dr and I decided against meds or else there aren't any for low blood sugar. I'm using diet to control it.

    I've actually been experimenting with eating more carbs since Jan 2012. But I can't attribute any gains or losses
    to doing this. I still feel it if I've had too much at one time but not as dramatically. I was getting nauseas. I've quadrupled my carbs intake throughout the day. I didn't get any candida flares, kow, but it hasn't improved my energy level either.

    Tc .. X
  6. madietodd

    madietodd Senior Member

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    I did really well on a super-low carb diet, but then I discovered my cholesterol was alarmingly high. So just remember to get your bloodwork done regularly!
    Sasha likes this.
  7. Sasha

    Sasha Fine, thank you

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    I could well have got this wrong, since I'm going from memory. I don't recall her talking about low carbs but emphasising berries (which happen to be low carb). Fruit & veg have low carbohydrate density according to this on Wikipedia:

    http://en.wikipedia.org/wiki/Low-carbohydrate_diet#Vegetables_and_fruits

    If memory serves, she recommended a certain (large) number of portions of differently coloured fruit & veg and only then could you have potatoes and grains (again, fuzzy memory on this).
  8. xchocoholic

    xchocoholic Senior Member

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    I'd been paleo for about 4 years because I discovered I didn't feel well on legumes or grains.
    When I saw her plan it helped me realize that I'd been too focused on eating plenty of meat
    so she opened my eyes to the importance of eating more veggies. Not that I can eat 9 cups but
    I'm sure some people can.

    I like her overall diet plan because it excluded common food intolerances, grains and legumes,
    and included so many of the nutritional foods
    I've seen recommended over the years. Like sea veggies and bone broths. Probiotics like kefir.

    I'll never eat liver tho. Bleh !

    And I liked her story. : ) Esp her TED video. Tc .. X
    Sasha likes this.
  9. Sasha

    Sasha Fine, thank you

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    I'm with you on the liver thing, X.
  10. aprilk1869

    aprilk1869 Senior Member

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    I've been reading Dr Jack Kruse's blog for the last couple of weeks and he talks a lot about ketogenic diets and also Cold Thermogenesis (CT). Here are a few things I remember him talking about:-

    • The transition to low carb should be done slowly. There was someone on the forum who was having problems and then felt better when she ate some carbs. Jack told her that going "cold turkey" wasn't recommended.
    • Hypoglycemia indicates leptin resistance in the liver. Basically you need leptin for glucagon to work (and therefore gluconeogenesis). He says it's important to train the liver to do gluconeogenesis instead of relying on a constant supply of food.
    • CT increases ACTH which in turn is needed to convert cholesterol into pregnenolone.
    • Starches should really only be eaten in the summer.
    • CT increases brown fat and decreases white fat. It encourages you to produce uncoupling proteins which create heat energy rather than ATP. Apparently this is much more effective and is something that many athletes are doing to improve performance.
    • Many people on the forum have been having great success in controlling Fasting Blood Glucose (FBG) using a combination of diet and CT.
    • He uses CT on patients undergoing surgery and find they recover much faster with less pain.
    • If you develop Raynaud's (fingers/toes go numb/burning) then it indicates you need more omega 3.
    Here are a couple of links to get started:-

    http://www.jackkruse.com/easy-start-guide/
    http://www.jackkruse.com/brain-gut-6-epi-paleo-rx/
    Sasha likes this.
  11. globalpilot

    globalpilot Senior Member

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    That\s very interesting. I'll have to get out my blood glucose. I find the lower carb the better for me. Fruit especially gives me bloat/burping. I am sure I have yeast overgrowth in my small intestine and that's why very low carb is best for me.
  12. Sparrow

    Sparrow Senior Member

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    I was extremely low carb (basically no sugar, grains, or fruits) for a large number of months last year. I didn't notice any improvement for me personally. I seem to do better with a regular supply of small quantities of carbs. Maybe my liver is just really stubborn. ;)
    Sasha likes this.
  13. ukxmrv

    ukxmrv Senior Member

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    I did best on the old Atkins style diet but notice that different types of food suit me best at different times of the day. When I was trying the Atkins it was the first time that I lost weight due to a dietry change (after years of calorie counting and other diets) but this stablised and it went no further.

    Could not cope with protein at breakfast though as I have terrible nausea, vomiting and shaking until about 11am. Eating much at all or a cooked breakfast makes this problem much worse. What I did was eat the carbohydrates that suited me in the morning and then concentrated on the protein after that.

    Diet is an area that I have probably put in the most work with the least return of symptom improvements. I've done so much and had so little success. My cholesterol is very low.
    merylg and Sasha like this.
  14. xchocoholic

    xchocoholic Senior Member

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    I was determined to follow dr wahls diet at first so I tried various ways of cooking this. No matter how
    I tried covering up the flavor I still hated eating it. I love liverwurst tho so I may try to make my own
    someday.

    I keep coming back to the concept that we're products of this planet and what we need to survive is here. I'm a pbs and discovery channel fan.
    So only foods that can be eaten without processing is what we should eat. While keeping in mind our food
    intolerances. Gmos and toxins have changed
    some of this so we have to be wary of those. We canaries need our own planet .. Lol ..

    Btw, I saw someone here said that their cholesteral was high. After being on the paleo diet for a couple of years, mine was frame worthy according to my doc. I follow Cordain's paleo instructions as much as possible. My gallbladder
    was removed so I have to limit my fat intake or I get sick. If I'm not mistaken, most paleos say this.

    Tc .. X
    Sasha likes this.
  15. xchocoholic

    xchocoholic Senior Member

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    Hi gp,

    I agree if all fruit is making you belch, it's probably from candida or bad bacteria or parasites. I had this symptom
    with h pylori, parasites and candida over the last 6 years.
    Have you tried taking strong probiotic or Jarrow s boulardi ? I'd start there but move on to getting evaluated and treating
    if that didn't help within a couple of weeks.

    I actually had a freind who had been extremely sick with a bad digestive bacteria. Was treated in the hospital even.
    But still complained of gas and bloating. One Biotech probiotic cured it. I use Metagenics or Blue Bonnet now but I had this
    one on hand at the time.

    I tried treating my h pylori this way but it didn't help at all. If anything the h pylori feasted
    on all the good bacteria. Lol.

    Tc .. X
  16. globalpilot

    globalpilot Senior Member

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    Thanks X but I'm far beyond getting started and am not getting anywhere. I've tried all treatments and all tests I can think of.

    I may have entrenched stubborn candida and I'm getting a camera pill test done within the next month. I need some fresh information. The pill test will also show any structural abnormalities.

    GP


  17. xchocoholic

    xchocoholic Senior Member

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    Hi gp,

    I hope they don't find anything serious. At least you're getting tested.

    I really wouldn't consider the things I mentioned as one time possibilities. I've been tested for h pylor and
    parasites for several years but just had my first positive test result last year. I think I got these in
    Sept of 2011. I could barely stand up or eat
    but I'm sure most people don't get that sick from these.

    Oh, I forgot to mention digestive enzymes. Stool tests can show if you need these. At this point, I need Creon a delayed release prescription digestive enzyme with meals. I tried all the otcs but they just weren't strong enough.

    Your answer made me wonder if the length of time on a
    healthy diet plays a role in this. It definitely would give our gi tracts time to heal. I couldn't digest
    anything but soft bland food for the first year after becoming a celiac. Some celiacs heal within weeks.

    And it took me forever to figure
    out most of my trigger foods so I still had inflamation.

    I almost forgot, based on my labs I had candida but my labs say it's gone now. I treated for years and wasn't doing
    anything special at that point. Maybe the h pylori or parasites ate it .. Lol.

    Tc .. X
  18. globalpilot

    globalpilot Senior Member

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    I agree X and I have tested for h pylori 3 times, I have cultured my stool several times, also done a rectal swab. It's impossible to convey in a short email how much testing I have done and the treatments I have been through. I've noticed that people assume either that 1) I'm just starting out and/or 2) I've only done what I've posted. I don't think the problem is that I haven't done enough testing, but rather, I haven't found the 'right thing' yet or tests don't exist for my condtion.. I record my test results in an excel spreadsheet and I"m up to 1500 lines. Thus the camera pill. If it's negative for yeast, I'll go from there.

    Digestive enzymes helped tremendously for a year and then quit. I have also taken Creon and it also does nothing at this point. My recent Metametrix did show a good output of elastase which points to sufficient pancreatic output. I suspect the enzymes helped by digesting the food faster than nromal speeding up absorption leaving less food for the microbes. Just a guess.

    The huge clue I do have and would urge others to investigate is my very low fecal secretory IgA. Metametrix GI effects measures this. Average in the literature is 120 and I was 10. Explains my food poisoning episode too.
    I am measuring it again as soon as the kit arrives to confirm it.

    GP




  19. xchocoholic

    xchocoholic Senior Member

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    Hi gp,

    Good luck with your test. Sorry to hear that you've tried so much without seeing any progress.

    I'm assuming you have a dr who's helping you since you took prescription Creon and had the Metametrix test. Sorry, I'm not up on the IgA count.

    This is the test that showed my elastace was low which meant some of my fats were low. I've had to play
    with the dosage. I'm on extended release 24000 3 times a day but I'm finding for now that I feel better taking 1/2 that at each meal and heavy snack. Taking a whole one just made me feel sick. Like you tho, I've done well with taking digestive enzymes but then it stopped. So we'll see.

    Tc .. X

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