First time in remission with ketogenic diet

Are there people with other conditions (such as epilepsy) who have stayed keto in the long-term and for whom there is safety data?

 

not sure if this has been posted; Dr Myhill on Ketogenic diet

https://www.youtube.com/watch?v=ZIJ8JG7HvQM

 

Not so far - I've only tried one.

This is the one I tried : https://www.dietdoctor.com/recipes/low-carb-chocolate-mousse

My husband said it looked like a dog turd. The texture was grainy and unpleasant. It ended up being almost as solid as a rock and I didn't think my spoons were strong enough. It went in the bin.

I know what the source of the problem was, but don't know how I could correct it. The form of coconut I had was wrong for the recipe. I bought a tin of coconut milk, and put it in the fridge as suggested in the recipe. It didn't separate into coconut water and coconut cream as stated in the recipe, it just stayed completely liquid. I also had some coconut cream in the cupboard. It was far too solid to make a dessert with. I tried mixing the liquid stuff from the tin and the solid coconut cream into a facsimile of what the recipe wanted, but it never looked like something I could turn into a dessert.

Result : total failure.

 

In the video, Sarah Myhill says that keto is basically the way that people evolved to eat (with a bit of face-stuffing of carbs in the summer/autumn to lay down fat stores for later).

But if we're so well-adapted to it, why all the need for monitoring? (Edit: That is, monitoring our own biology.)

 

For anyone who has eaten a high carb diet all or most of their lives, with lots of added sugar and fake/unnatural fats added to the processed food they eat, when does their body get a chance to learn what normal eating and normal hunger feels like? Since many people are so out of touch with what is "healthy", monitoring may be needed until the body re-learns what it should feel like.

 

This seems the wrong way round, somehow - if we're eating things in the right proportions, won't the rest take care of itself? That is, isn't it input we should be monitoring (and regulating), not output?

 

Sorry, I obviously got the wrong end of the stick. I assumed you were referring to input.

 

For sure long-term. The hugely significant symptom improvements have been a life saver for me so far, nothing else has ever worked at all for me. While I’m still not the person I was before I got ME, and I do have a few small symptom blips, I think I can avoid crashing again and have now bought myself some time to have some sort of life.

I am also mixing keto with intermittent fasting (IF), and have done my first 48-hr IF a few days ago.

@Sasha maybe in future these treatments might cause some positive reset and that would be wonderful, but if they don’t thats still fine with me, the work and sacrifice doing keto and IF require is definitely worth the benefits.

 

My bad! I've edited my post accordingly.

 

DietDoctor is good, although I found different keto sites to give differing and often conflicting advice.

I would read and compare multiple. ruledme.com is very good one of my top choices and perfectketo.com is pretty good.

 

Thanks, @leokitten.

The reason I ask is that @Sid reported (in the other place) that many people do well with keto at first but then get worse and can end up a lot worse than at the beginning.

Having done a lot of googling, I'm wondering if the people who don't do well in the long-term were trying keto in the days before the important role of the microbiome was known and maybe were focusing on the macros (protein, carbs, fat) but not on the plant fibres, etc., necessary to feed the microbiome.

I'm tempted by keto but also scared of it, because there seems to be such a big range of outcomes for people.

 

I don’t know where she got those reports because I haven’t found them on any forum. And you have to take everything with a grain of salt, if there were a couple people who did you have no idea what their health situation was ME or otherwise, and you have no idea what kind of keto they were doing, healthy or not. There is so much we don’t know about the people behind the avatars here on forums. People don’t usually divulge all their health info and problems.

 

Why not just try a low carb diet to begin with - try 100g carbs per day and see how you get on with it, possibly reducing to 50g after a few weeks. Add natural, healthy fats and oils and some protein to replace the missing calories. I have read that the average American or British diet has over 200g of carbs in per day (although I'm saying that from memory, so I could be wrong). To go into ketosis you would need to eat only 20g - 25g carbs per day, which might be a step too far if it worries you.

 

I could be totally misunderstanding your question but here goes... we need to monitor because the food environment around us is not the food environment we and our ancestors evolved in for millions of years. Food is everywhere and it's so easy to no pay attention, there are carbs snuck into everything if you aren't careful, and you can easily eat 100g carbs in a day thinking you've eaten low-carb. Certain people also need to monitor because they have developed insulin resistance, prediabetes, or worse and have to work very hard with a ketogenic diet to get their metabolism back under control.

 

Thanks, that does answer my question!

 

I found @Sid's post on PR here https://forums.phoenixrising.me/ind...t-the-ketogenic-diet.39359/page-9#post-813383. For those interested the entire thread is also interesting.

She reported her own experiences along with references to anecdotal reports on other non-ME diet sites and research on ME and ketogenic diets. What I would say in response is, if you feel worried about following a ketogenic long-term, then alternate in more carbs at certain times, take some "breaks" sort of where you aren't eating crazy carbs but more than 20-25 grams to support gut bacteria and prevent any potential allergies. Experiment with macros so that you don't eat enough to make ME symptoms come back.

The first thing one must experiment with is whether doing the diet full-on actually brings about a significant improvement in symptoms.

@Sasha I can't stress this enough, in my case (and others) eating regular amounts of carbs in an otherwise healthy diet seems to drive most of my constant, debilitating symptoms of ME and it was definitely one of the main contributors over these years making me go from mild to moderate severity. I don't know why this is the case I wish I did.

 

Thanks, @leokitten - good points.

A bit of random googling has found a few long-term keto people doing great here on Reddit.

 

The only kinds of desserts I've made are like @Trish mentioned, nice and simple with whole food ingredients. I would try to avoid any sugar substitutes, stevia, erythritol, etc. as much as possible, keto or otherwise. They are proven to trick your body into thinking you are eating sugar and promote insulin resistance since your body pushes out more insulin into the bloodstream when it thinks you are eating sugar.

You don't need to eat 99% chocolate to be on keto. My goto, no work dessert is Madecasse Madegascar Heirloom Cocoa 92% Pure Dark Chocolate https://madecasse.com/product/92-dark-chocolate/. Tastes like heaven to me, 1/2 the entire bar has only 6g net carbs (5g fiber!) 20g fat, 5g protein.

 

I don't think I agree with Dr Myhill (and others) historical references about diet tho.
It depends on which part of the world you are talking about; eg she does mention bananas a lot, well they are available all year in the countries where they are grown (ie there is no 'season').
As are, generally speaking, potatoes.

I'm not knocking the keto diet per se, just dont think the historical 'this is how man used to eat' rationale necessarily follows (I don't think people used to have easy access to almond milk,coconut cream and avocados etc(?)).

I think there is a big difference in doing the diet to purely lose weight (if you need to) and doing it to improve health if you are ill. How this all ties in with ME I haven't the faintest.

 

I know it's really hard to decide what to do, given all the + and - anecdotal and scientific evidence. As I mentioned in my reply to @Nathalie Wright, we have ME and it's a really horrible, life destroying disease. There is no solid scientific evidence for any treatment. It's all trial and error, and with trial and error comes risk. There will always be a risk for us to do any intervention, and on the flip side there is also a risk for doing nothing too.

Like i mentioned in my previous reply, maybe experiment with combining keto, IF, and also some stretches of including higher carbs with healthy vegetables etc.