First time in remission with ketogenic diet

Certainly, the more food restrictions one has, the more chances for nutrient deficiencies.

But again my point is regardless of what we eat, we are still sick.

 

But to give a contrasting perspective on the ketogenic diet and intermittent fasting - the fact that doesn’t improve symptoms as strongly as in the beginning shouldn’t be a reason for dismissing it or not trying to further understand the clues it might be giving on ME pathology.

The long-term anecdotal evidence of the ketogenic diet and intermittent fasting in an ME subgroup shows that it’s effects are better than really any of the other empirical treatments proposed on ME forums. In fact, I would go out on a limb and say virtually none of the other empirical treatments ever proposed in the ME community really work significantly in the long term, while this diet continues to.

Of all the hundreds of protocols, if not more, that people have touted here or on PR saying that it significantly helped, if you look at those same treatments and forum users long-term they usually aren’t doing them anymore and are trying other protocols. Maybe only a handful of other protocols I’ve seen actually continues to work long-term, and I believe these other protocols only help with certain subgroups of symptoms, not the global improvement that everyone on keto / intermittent fasting has been saying.

 

One could be as lucky as I was, noticing difference already the second day, and without the fasting.
I have struggled a lot with constipation though.
But I’ve gone from severe to moderate/mild. Only weeks into it.
I got a tip with this article
https://www.ncbi.nlm.nih.gov/pubmed/26315446

 

This. I also finds it very difficult to adhere to a proper ketogenic diet with all this fat, and limited proteins. In fact, too difficult. However, there’s seems to be some more possibilities, for example the modified Atkins diet, which do not restrict proteins and calories the same way. But this, you do know already. But have you considered or tried MCT oil to improve ketosis? Seems to me that that is a possibility to get in deeper ketosis.

edit; and thank you for very useful and informative posts and thread.

 

MCT oil gives me (and many people) diarrhea.

Atkins doesn’t work for ketosis because if you eat more than adequate protein you fall out of ketosis. Protein causes glucose levels to rise due to gluconeogenesis in liver.

There really isn’t a workaround to stay in therapeutic ketosis without eating a great deal of fat and making very sure you keep carbs down to minimum and only adequate protein no more.

 

That’s in fact good news to me.

However I am reluctant to mess with MCT oil without measuring GKI, and I am reluctant to buy that because the strips are quite expensive.

Another way to improve ketosis is to do intermediate fasting, however I don’t feel good on it so that’s out, for me at the moment.

I didn’t do a very proper introduction, and seem to have good effect (perhaps not optimal, I don’t know yet) even not restricting proteins and/or calories. (As you report to have good effect even without the deep ketosis). But I really am strict with carbs, less that 6g per day.

However I have to deal with side effect before confirming or testing any more. Constiopation I seem to be on top of now, but the sleep is disturbed by restless legs. I hoped to decrease sleep medication on the diet, but now I am actually increasing it. I have tried magnesium, oil and tablets. And be taking baking soda in between of meals if lower pH in the blood was causing it. No help. Now I will try supplement of iron.

 

Way too low. What I meant by very strict is 25g per day. Long-term you can even go up to 30g. Remember your brain is going to use approx 60g of glucose per day, and your liver is going to have to make it via gluconeogenesis, so 25-30g will keep you in ketosis if, as I've said, you eat adequate protein and no more and most importantly the rest 75-80% in fats and getting the total calories you should be eating.

The last part I found the hardest, eating enough fats on a daily basis to get to the total calories I should eat. I've found that if I only eat 25-30g carbs, adequate protein, and the rest in fats but not enough to meet my total calorie needs (so a somewhat caloric restriction + ketogenic) that my body stays in only mild or moderate ketosis. The helps symptoms significantly, but not nearly as well as I've found when in therapeutic ketosis.

As stated, my big worry is that the scientific evidence on fats is conflicting. Lot's of papers have shown that all fats, even the touted healthy ones like olive oil, oils from fish, etc. cause significant endothelial dysfunction which leads to cardiovascular disease. Of course saturated fats are even worse, and many people following ketogenic diets eat a ton of animal and dairy fats to meet that 75-80%. So I worry that having to eat so much fat on a daily basis is going help with one problem and cause another.

 

@leokitten I understand what you say. That is good cautions. However in my case I feel that the me/cfs is worse than all the fat, at least for now. I was on a downward spiraling with high and augmenting blood pressure, now at least the BP is stable. And also the heart palpitations are improving. So for me, now, the choice is clear. With all the other benefits as well. The weight is also healthier.

About the glucose/protein, yes our metabolism creates glucose out of proteins, so maybe that’s how the brain gets it’s needed glucose, and the excessive proteins go there. (Just guessing).
I find it easier to control the carbs, than everything else (I.e. proteins and calories, I guess I am way above the recommendation on both) and I seem to do great on this kind of Modified Atkins Diet. But I am a newbie, in half a year, or a year, I will have more to say.

 

Seems that I need to be diary-free, to keep up the good improvement. (I was that for the first week(s) because I hadnt yet learnt the carbs of diary products)
Also I have tried milkfree diet before, with no difference, even at reintroducing after three months. So kind of surprising. I wouldn’t have tried it without a dietician MD (I crept to the cross and had an appointment) solid recommendation.

Eventually I will make my own thread, when I am stable and have figured things out. But also, this thread is full of valuable experiences, so it gives meening to write here too.

 

Sorry to flood the thread with messages, but I got another (expert)tip to try vitamin c,e and Q10.
Thats for those that are helped by ketogenic diet. It may not help, but for me, those supplements make sleep better.

 

My emphasis :

I wasn't aware of any ketogenic diet which restricted proteins to any major extent.

There are quite a few people I read on Twitter who have moved from

1) Low Carb, High Fat (maximum 100g carbs per day, but preferably less) to

2) Keto ( maximum 20g carbs per day) to

3) Carnivore.

I'm still attempting stage 1, although I still go off the rails occasionally with sugar eating. The only thing I'm really sure of in connection with protein is that eating more of it is helping to reduce pain for me, and I've been able to reduce my painkiller intake to some extent. I also feel a lot less hungry when I eat more protein than I have done most of my life.

I also don't feel well if I limit my carbs extremely strictly - I just feel exhausted. But this finding appears to be quite common in people who are hypothyroid like me. The belief amongst this group of people is that carbs are necessary for some hypothyroid people in order for them to be able to convert T4 to T3 adequately. I have no idea what the biology is behind this. The amount of carbs doesn't have to be huge but it does need to be more than is allowed by a keto diet.

 

My body, and I assume others, has a tendency to turn any 'excess' protein into sugars, very, very rapidly.

 

I don't measure my blood sugar, so I wouldn't know what is happening to that. I'm not diabetic (yet).

 

@Arnie Pye
I guess that depends on which way one hear of ketogenic diet. I wonder if the term is not very specific. I heard about it getting a tip to try the ketogenic diet that works on children with epilepsy, and described in this book, that I bought.
In this ketogenic diet, one has to eat four times as much fat, to the sum of carbs and proteins. And the proteins are limited a number of grams that is less than body weight in kilos.
So it is a strict ketogenic diet, that is (very) difficult to adhere to. Therefore they also mention Atkins as a possibility, that may work also. One just have to try if it works.
I guess it is a bit like the carnivore diet, that too is restricting carbs really strict.
I try out what works for me, soon I’ll try to loosen up the carbs and see my body’s reaction on that.

 

Spamming the thread again, sorry.

But now I’ve read the thread on the other forum, and checked further, and I will not risk my long term health by not taking care of the gut flora, that means that I will eat more veggies, with fiber and food for the gut flora. This also means more carbs, up to 20-25 a day.
That is out of the limits of the ketogenic diet described in the book, and also the carnivore diet.

But it is within “the modified Atkins diet”. First I thought that “modified Atkins” meant the Atkins after 2000, then it was allowed 20g carbs a day in the induction phase, before 2000, it was only 8-9g carbs a day. I speculate that the change may be because of the possible gut flora damage due to almost elimination of veggies.
But after reading more in the book, I see that they mean by modified Atkins, that is Atkins with more fat and less protein, to make it more similar to ketogenic diet. They do not use numbers, only encouraging, and emphasizes that more fat may increase results. And not too much protein!
So that is what I am aiming to follow.
This brings me in the same place as @leokitten, with 25g carbs mostly from low-carb veggies, limited protein (that was not so difficult, after all), and as much (healthy) fat as I can. And settle for that improvement.
I probably will have more improvement on carnivore or strict ketonenic (as I’ve tried with great result, that is, I think it was more like carnivore) but won’t do it because of the possible longterm damage to the gut flora.
And I will be using MCT oil to enhance ketosis.

About the advice to try vitamin c,e and Q10, for those that improves by ketogenic diets, it may be worth trying, the guy that gave that tips is the author of this book, not a nobody. And it helps my sleep.

The book on ketogenic diet that I bought, it prescribes a prosentage of fat of 80%, but that’s in grams. In energygiving calories, that equals more than 90%.
The book prescribes to start with the total calories per day, and calculate the number of carbs and fat out of that number, and what you should have in proteins. For children, it comes out with some carbs to eat. But for me, all the protein + carbs was already used by the needed proteins, leaving none carbs for me to eat. Impossible.
But also, they say that when children on the ketogenic diet grow up, they often are transferred to the modified Atkins diet.

 

Glad you’re eating more veges. Seems to be a fundamental of all good food advice.

Focusing on macro-nutrients (protein, carb, fat, fibre) can lead to forgetting that good nutrition means as much variety of vegetable matter as you can reasonably manage.
Because so much of, say, dark leafy greens is none of those (low fat unless added, not very concentrated protein, low carb, some fibre, but lots of water, vitamins and minerals plus other stuff we’ll probably keep finding is important as research continues - antioxidants and phytonutrients etc etc). So adding veges often doesn’t seem to affect those macro numbers much but it affects your diet and meals a lot.

But no-one (who’s educated in nutrition and health) will tell you that leafy greens aren’t an important part of ideal nutrition.

NB Not everyone can and should shoot for ideal nutrition (due to their circumstances, current gut health or condition etc etc) but if you can, good for you.

Oh, and if you find that increasing your veges and especially greens is difficult for your gut: introduce slowly, try cooked versions for a while first, and don’t worry about it too much (it’s your long term habits that matter not your daily targets).

 

A good overview.

 

Bah. I have no idea why I am back to where I was before the diet changes. I am pleased if I am able one day to go out with the garbage now. I thought it was an infection, but that should be ok by now.

 

Not sure this is working for me......

 

I have gone off the ketogenic diet for now. It stopped working. However it seems to have done good for me, but the energy increase was no longer there.

But I have read more on PDH defiencency. Seems that the treatments for that is the ketogenic diet, DCA or large amounts of thiamine. One report that at a boy with genetic defiency was treated with KD and B1, with good results. So adding B1 might be good. I will try that.

@leokitten have you tried to add B1 to the ketogenic diet? It should be at least 400mg a day from what I read.

Edit; Added this link
https://translate.google.com/transl...0/klinisk-oversikt/pyruvatdehydrogenasemangel