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First time in remission with ketogenic diet

Discussion in 'Alternative Therapies' started by leokitten, Jul 25, 2018.

  1. Nathalie Wright

    Nathalie Wright Established Member (Voting Rights)

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    I've been giving this a go since Wednesday - getting the keto headache which I read is normal, but still not v pleasant. Planning on sticking with it for a month to see if there are benefits for me.
     
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  2. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    @Nathalie Wright You can help yourself with keto flu by increasing your salt intake and your water intake.

    Source : https://www.dietdoctor.com/low-carb/keto/flu-side-effects

    I'm a member of the above website. I'm not sure if non-members will be able to read the link.
     
  3. Nathalie Wright

    Nathalie Wright Established Member (Voting Rights)

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    I'm finding drinking enough water is key (a lot more than usual). thanks for pointing that out!
     
  4. Marky

    Marky Senior Member (Voting Rights)

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    How r u doing @leokitten? Curious to try this:)
     
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I needed electrolytes too. Especially potassium. I got awful cramps otherwise (exacerbated by anything anticholinergic).
     
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  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Me too - also magnesium.
     
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  7. leokitten

    leokitten Senior Member (Voting Rights)

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    Hi @Marky - I’m doing very well, although I had a crash from Sunday night to Thursday morning after two weeks of a remission-like state as a result of the ketogenic diet. I’ve written more details about it in posts in this thread. The crash was a bit different from all my other crashes.

    Since then, I bounced back with the diet and still have the same benefits, it makes me feel like I’m in remission, although I’m more cautious now not to push myself as hard as before so that I don’t crash. The list of symptoms that have completely gone away or significantly reduced on the diet continue to be gone.
     
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  8. Trish

    Trish Moderator Staff Member

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    I have been reading an article about SIBO (small intestine bacterial overgrowth), and its symptoms of abdominal bloating and brain fog.
    See this thread.

    I have also read in the past about people (who don't want to use the usual antibiotics for SIBO) treating SIBO with keto diets to starve out the small intestine bacteria which feed on the carbs in the diet.

    Putting two and two together and probably making five, I wonder how many of the people with ME who find their brain fog and gut symptoms clear on a keto diet who attribute this to ketosis may in fact be seeing those improvements not as a result of ketosis but as a result of the SIBO bacteria dying off. Similarly with fasting.

    Any thoughts?

    Edit to add: I've just googled SIBO symptoms:
    Further edit: I'm not in any way suggesting SIBO is the whole story with keto diets and ME, but wondering if it could be a contributing factor to the symptom change experienced by some people on keto diets.
     
    Last edited: Aug 8, 2018
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  9. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Quite possible. I had most of those symptoms except diarrhoea prior to going gluten free. I think mental clarity has improved again since starting fasting/keto but that’s hard to measure.
     
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  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I still get IBS-type symptoms on keto. But it's slightly different to before.
     
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  11. Nathalie Wright

    Nathalie Wright Established Member (Voting Rights)

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    & @Arnie Pye ive been looking into this - do you take supplements for them? Would a multivitamin that includes them both be enough do you think?
     
  12. Hutan

    Hutan Moderator Staff Member

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    I was thinking about getting enough potassium a few days ago and looked at the multivitamin I have in my cupboard. It has virtually no potassium. Something like 2 mg when the daily requirement is more than 4000 mg - something like that. Googling, I see that probably most multivitamins don't have much potassium because of the risk of toxicity.

    I've been trying the keto diet for about a week now, fairly strictly. I got my meter yesterday. I had keto numbers over 1 both yesterday and today so that's a moderate amount of ketosis and should be enough to give me an idea of whether it makes a difference.

    I'm finding it fairly easy to follow the diet - I like butter, I like avocado, fats, so it's not too much of a hardship. I'm using a myfitnesspal app to log my food - it is user friendly.

    I'm finding the diet does make me feel satiated. A fried egg and spinach in the morning seems to prevent me thinking about food again for quite a while.

    In order to eat enough fibre without grains, I am probably eating more healthily than I normally would. Lots of celery, lots of Brussel sprouts, lots of broccoli. I am losing weight, which is good.

    But, I don't know if I feel hugely better. Maybe I do. I think I have had more energy, but also I think I have just upped my activity level and so still feel rubbish at times. There have been times when I notice I can see clearly, which seems to go with having more energy, and doesn't usually happen very often. I need to get a more scientific about evaluating the difference.

    3 hours ago I had a magnificent apple turnover after a week of nothing sweet. It's part of my usual fortnightly order of food.... I am now really uncomfortable.

    It was your comment @Trish that prompted me to post. My gut is so unhappy now, it hurts when I breathe in. But does that mean that carbohydrates are bad for me? Or does it just mean that a whole flaky pastry apple turnover after a week of almost no carbohydrates is a major shock to my (or indeed anyone's) gut bacteria? I don't know.

    Anyway, it's early days for me and I've got quite a lot more experimenting to do.
     
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  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I take a Dioralyte sachet (rehydration salts) in a glass of water, or a supermarket own brand equivalent, before bed.

    I also add (roughly) a level teaspoon of this magnesium product to the rehydration salts :



    I am not a fan of multi-vitamins or multi-minerals and wouldn't take them.
     
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  14. leokitten

    leokitten Senior Member (Voting Rights)

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    @Hutan was your glucose also low enough? I found that’s if my glucose was not 4.5 mmol/L or below even if my ketones were ok that I wasn’t noticing improvement. That’s why measuring both is important and GKI calc too. For me i feel this diet works best on my ME symptoms and overall feeling when my GKI < 2

    I feel like with ME being as serious as it is if there is a glucose block to TCA cycle we need ketones high enough and glucose low enough (governed by the liver making just enough for glucose dependent tissue needs) such that our cells fully convert to using ketones as the primary fuel. Otherwise one might not feel better.
     
    Last edited: Aug 8, 2018
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  15. Hutan

    Hutan Moderator Staff Member

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    My glucose was around 4.7 mmol/L, giving a GKI of just over 4.

    So, it sounds as if I still have some tweaking to do to give the idea of ketosis a good trial.

    @nattieo, I think you were a dietician with some experience helping kids with epilepsy trial ketogenic diets? You might be interested in this thread.
     
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  16. leokitten

    leokitten Senior Member (Voting Rights)

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    @Trish very interesting, I don't have any SIBO symptoms but this theory is definitely plausible. Only during the first 2-3 years or so of my disease course did I have any ME-related GI sensitivities and issues, fortunately those slowly went away. I had IBS-like diarrhea, food sensitivities, and a gut that just felt like crap, but all that slowly just turned into constipation.

    The constipation got better and worse with exertion just like everything else. Basically either my involuntary nervous system or gut muscles would just stop working. It got so bad one time after too many days of overexertion and a crash that I spent two days in the most excruciating, mind bending pain I've had in my life before being rushed to the ER. They found out that it wasn't due constipation per say (nothing really backed up on CT scan) but that I had enteritis in my small intestine.

    Of course like all of us PWME have to deal with, I knew it was the ME was causing it. ER doctors said it must have been from some bug in food I ate (traveler's diarrhea/gastroenteritis) though they couldn't explain why I didn't have any diarrhea or vomiting which is what happens in that case.
     
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  17. leokitten

    leokitten Senior Member (Voting Rights)

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    You've made a great start. I don't want to give medical advice ;), I just found for myself that getting that GKI to 2 or less made me feel much better, felt like my body could make the energy to function again.

    You said you were eating quite a few vegetables. Your vegetable choices are really good (same stuff I'm eating!). Are you carefully counting your net carbs per day? I found to eat only 20-25 grams net carbs you can eat veggies every day but not a whole lot. If you are going over 25 net per day it could need reducing to get further into ketosis.

    In order to get fiber I use chia, flax, and pumpkin seeds. They have very few net carbs because they are mostly fiber.
     
    Last edited: Aug 8, 2018
  18. Hutan

    Hutan Moderator Staff Member

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    Yes, it's a tricky line to tread. I think, for me, there isn't a lot of risk in trying this diet for a few months. Even just getting back to a BMI in normal range will be a good health outcome for me. Obviously people need to do some reading before deciding it's ok for them.

    I'm tracking total carbs and fibre, and generally keeping the net carbs (TC - fibre) at the 20 to 25 gram mark. Yes, I've found I need to have some LSA (linseed, sunflower and almond meal) mixed into unsweetened yoghurt (with a few raspberries to make it something I want to eat) to get enough fibre without going over that target. I did get some psyllium husk and tried it mixed into a glass of water but I haven't repeated that yet (blurgh).
     
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  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Be aware that in the USA, labels show total carbs, but in the UK they already show net carbs! I was deducting my fibre twice, so wasn't getting into ketosis!
     
  20. leokitten

    leokitten Senior Member (Voting Rights)

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    FYI for everyone... why you shouldn’t do your glucose and ketone measurements first thing in the morning, before waking up your body raises your glucose to get you up out of bed and going. It’s called the “dawn phenomenon” and actually starts a few hours before you wake up. For that reason it’s best to do your blood measurements hours after breakfast, if you have any (which I don’t), and just before lunch or your first meal midday.
     

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