• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lack of chatter about the Ketogenic Diet

Hip

Senior Member
Messages
17,824
Watch out for uric acid mobilization and high purine foods! Coconut oil and products caused this to me back in 2014

I just Googled this, and I read that coconut oil is a remedy for gout (which involves high levels of uric acid), so I would not have thought coconut oil could cause uric acids problems.

But having a lot of meat in the diet can certainly increase uric acid levels, due to the purines in meat which are broken down into uric acid.

This article lists the meats and fish that are high in purines: they include liver and kidney
 

Gondwanaland

Senior Member
Messages
5,092
I just Googled this, and I read that coconut oil is a remedy for gout (which involves high levels of uric acid), so I would not have thought coconut oil could cause uric acids problems.
Getting the uric acid out causes a lot of problems - I had symptoms of metabolic acidosis due to the huge volumes being mobilized.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
This discussion is very intriguing - looks like what the researchers are finding supports some of the anecdotal reports...

I went to Ben Lynch's SHEI conference last year, where Alessandro Ferretti spoke about ketogenic diets and there was a lot of dialogue between the many doctors in attendance on the nuances of ketogenic diets.

Best of all, they fed us ketogenic meals for entire event!! And Ferretti's photos of ketogenic meals were quite helpful... basically a variety of non starchy vegetables, happy animal protein and oil on the side. Pretty simple. They also pointed out that casein in dairy blocks methylation, so dairy products may be counterproductive for us.

I'm now implementing it finally, on my doctor's instruction, and it is helping with my brain fog.

Based on Fluge and Mella's findings and my own lab results, getting a good amount of protein is critical... I weigh 150 and 90-95g a day seems to be the right amount.

I'm also using C8 oil, NOT MCT or coconut oil, as well as flax seed, avocado, olive, and walnut oil. I'm finding I'm not as hungry for big meals, but when I eat, it's organic vegetables and happy fish, meat, or eggs with the fats.

Also, to help with ketosis, I started using keto esters, and found that putting them in water, along with Seeking Health creatine, d-ribose, and BCAAs, and drinking it before and during my limited exercise, that I didn't collapse as easily and PEM was reduced, and I was thinking more clearly.

Obviously, we're all different, but as some if the other posters have mentioned, if it's not helping, there may be individual pathway issues. My experience has been that if you unblock something, then you find the next bottleneck...

I've also been following work with ketogenic diets in the cancer world, and seems like this is an exciting area....no concrete answers, but promising developments for all of us...
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
C8 oil apparently is an MCT oil:

Forms of MCT oil:
Caproic acid (C6)
Caprylic acid (C8)
Capric acid (C10)
Lauric acid (C12)

Source: Medium-chain triglyceride

I read that MCT oil can be a mixture of one or more of these 4 oils.

Yes, MCT typically is a mixture.

My doctor wanted me to switch from MCT to C8, caprylic acid, as it is the fastest to metabolize, resulting in a quicker rise in blood ketone levels and mental focus than plain MCT oil.

I've tried both Bulletproof Brain Octane and MiCkey T brands, and they seem to be about the same.
 
Messages
79
Location
Seattle
Yes, I tried MCT oil a couple of years ago. I became wired and had some neuropathy.
But ! I may be of a small minority, because may folks do well with it.
I have wild sensitivities right now, can't tolerate even coconut products, or salicylates.
The only fats I can tolerate are animal ones, and, I tolerate them very well.

i also have been doing ketogenic diet and although initially i had good results, over time i became increasingly sick and lo and behold, i finally discovered that i have salicylate sensitivity. all that friggin MCT and coconut oil was killing me. it totally explains why olive oil would give me asthma. i have now switched to tallow and lard for most of my fats and all is well on keto.
 

Crux

Senior Member
Messages
1,441
Location
USA
i also have been doing ketogenic diet and although initially i had good results, over time i became increasingly sick and lo and behold, i finally discovered that i have salicylate sensitivity. all that friggin MCT and coconut oil was killing me. it totally explains why olive oil would give me asthma. i have now switched to tallow and lard for most of my fats and all is well on keto.

I've read that salicylates increase iron absorption and decrease copper, both not good in my case.
I've also read that low copper and high iron are often found in asthma.

Meanwhile, I'm very happy with keto ,even with the dietary restrictions - used to them.

Neuropathy is improving, ( confined to feet, and only when I eat too many fermented foods,which increase iron absorption.)

Sleep is better, ( not perfect - yet.)

Energy is increased, and there is rarely any pain.

I attribute this, in part, to the keto diet, but , lowering iron has also been a large factor.
 

helperofearth123

Senior Member
Messages
202
I've been on a ketogenic diet for one week now, having spent one more week before that transitioning. I feel worse, I can't do my usual 30min walk anymore. I've got the keto blood test strips and everything and have been averaging a keytone level of around 2-3. (can't remember what the unit is). I was planning on trying it for a solid 2 weeks but am thinking about giving up on it.

I've been using MCTs and already take a lot of salt on my food due to POTS.
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I think the ketogenic diet is really hard on the liver with all the fat content. The adrenals get stressed big time because they are working overtime due to lack of glucose from the good carbs. Actually the liver needs the glucose also. In the short term a person may feel better due to the adrenaline the adrenals are pumping out because of carb shortage. In the long run this diet could cause blood sugar problems, taxed adrenals, and a heavy burdened liver.
 
Last edited:

ryan31337

Senior Member
Messages
664
Location
South East, England
4 months into Keto diet here and it has absolutely changed my life, turning around the steady relapse of symptoms that started 2 years ago. From mostly housebound, with 1 or 2 hours of quiet seated daily activity in me before becoming a brain dead and massively orthostatically intolerant zombie. To now being able to function at a steady pace all day without sleeps, go places, apply myself physically/cognitively etc. Only major issue is PEM if I overdo it and mast cell type reactions to certain things, though my baseline/tolerance to these is steadily increasing still...

I found the diet gave a very immediate (within days) improvement in cognition/sleepiness/migraine, despite some physical weakness & headache associated with a week of initiation keto flu. In my case reactive hypoglycemia symptoms were very significant before the diet and by removing these it improved my QOL many times over.

From then onward I have just gotten stronger and stronger. At the risk of jumping to conclusions and oversimplifying, I do feel as if the diet has removed a significant roadblock in energy production and is allowing my body to repair & perform more normally. The only objective evidence I have for this so far are much improved LFTs (bilirubin and ALT approaching normal for the first time in years) & activity tracking. I would be very interested to repeat CPET and autonomic testing to see how much they have improved too (atrocious results before).

The diet itself is actually quite satisfying and isn't that difficult to do, especially if like many of us you are already fairly restricted in what you can eat. I have kept my carb count around 30g, as I get a lot of fat from mildly carby nuts (intolerant to dairy/lactose, a major source of fat), but still remain reliably in ketosis. On occasion when I have seemingly dropped out of ketosis for a day I have had return of general fatigue/cognitive slowdown and significant post-prandial reactive hypos, complete with exaggerated orthostasis problems, as before.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Can anyone recommend a good book on the why/how of ketogenic diets, that would be suitable for a person with zippo knowledge of biology?

On Amazon I can see a lot of keto weight-loss books written by people who don't appear to be scientists or doctors, and I'd be reluctant to trust the info.
 
Messages
2,158
Can anyone recommend a good book on the why/how of ketogenic diets, that would be suitable for a person with zippo knowledge of biology?

On Amazon I can see a lot of keto weight-loss books written by people who don't appear to be scientists or doctors, and I'd be reluctant to trust the info.

Me too please, and the last thing I need is a weight loss diet, as I'm already underweight. And I'm prone to constipation, particularly from eating eggs and meat, so if it cuts out fibre and adds more meat, I'm a non-starter. Oh, and I've been off dairy for years because of gut problems, so whey is a non-starter too! On the other hand, I'd try anything if it works!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Me too please, and the last thing I need is a weight loss diet, as I'm already underweight. And I'm prone to constipation, particularly from eating eggs and meat, so if it cuts out fibre and adds more meat, I'm a non-starter. Oh, and I've been off dairy for years because of gut problems, so whey is a non-starter too! On the other hand, I'd try anything if it works!

I've also got a lot of dietary restrictions (due to migraines) so will also struggle, I think! :)

On the constipation side, I already take potato starch (resistant starch, which isn't digestible by the body but by our gut bugs) and psyllium powder, which I did to try to help my microbiome, but they seem to be good for the digestion generally (though we all vary tremendously - not everyone gets on well with them, as the enormous thread on resistant starch indicates - I'd recommend reading some of the key posts if you're considering it, to get a sense of risks as well as benefits). I think they'd be allowed on a keto diet.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I've been on a ketogenic diet for one week now, having spent one more week before that transitioning. I feel worse, I can't do my usual 30min walk anymore. I've got the keto blood test strips and everything and have been averaging a keytone level of around 2-3. (can't remember what the unit is). I was planning on trying it for a solid 2 weeks but am thinking about giving up on it.

I've been using MCTs and already take a lot of salt on my food due to POTS.

Have you heard about "keto flu"?:

http://www.diabetes.co.uk/keto/
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Can anyone recommend a good book on the why/how of ketogenic diets, that would be suitable for a person with zippo knowledge of biology?
Have replied to your other thread with recommendation from my Endo, more details there. New Atkins For a New You - https://www.amazon.co.uk/New-Atkins-You-Ultimate-Shedding/dp/0091935571

I'm prone to constipation, particularly from eating eggs and meat, so if it cuts out fibre and adds more meat, I'm a non-starter. Oh, and I've been off dairy for years because of gut problems, so whey is a non-starter too! On the other hand, I'd try anything if it works!
I won't lie it made me pretty constipated to start with. That's gone now, unsure if it was a temporary thing or if starting other meds (cetirizine & montelukast) counteracted it.

Its not a high protein diet, you should only eat a normal amount of meat with meals. The calories should come from oils, cream, butter etc. It is a pain when you can't tolerate dairy (been GF & DF 10 years myself), so I eat plenty of oils, avocado, coconut cream & nuts instead. I am a bit of a sucker for the 'bacon-trap' though and need to watch this as my cholesterol is now high (not normally an issue if done properly).

As @Sasha mentioned, psyllium often features in keto recipes, I also use almond flour too. I eat plenty of greens and aubergines daily for the fibre.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I wonder how I'm going to manage with the fats. My migraines are triggered by tyramine, so I have to avoid nuts and avocado and bacon, etc., and I found a couple of years ago that I've got big problems with coconut oil (sulphites?).

It's interesting that the diet improved your migraines, @ryan31337. Presumably you hadn't previously identified tyramine as a trigger for your migraines (I assume they aren't for everyone)?
 

ryan31337

Senior Member
Messages
664
Location
South East, England
I've also got a lot of dietary restrictions (due to migraines) so will also struggle, I think! :)
Thought it might be helpful to give you my daily food diary. It is by no means an ideal keto diet, I am GF/DF & struggle with high histamine + FODMAPs...but it does show you can still do it!

I eat this every day...it must sounds boring to most of you but it has really cut down on my numerous food reactions - pretty much every day was spent with stomach pain, cramps, sporadic diarrhoea etc. before.

Breakfast:
3x eggs scrambled with 1x tbsp DF butter, splash unsweetened almond milk, salt & pepper
3x rashers bacon
Handful of red/yellow bell pepper

Morning snack:
2x tbsp peanut butter (low sugar)

Lunch:
Salad of lettuce, broccoli, french beans, sugar snap peas, 1/2 avocado.
3x Chicken thighs, or 3x sausages or other similar fatty protein
1x tbsp mayonnaise

Afternoon snack:
Handful of macadamia nuts

Dinner:
1/2 courgette spiralized, 1/2 large aubergine roasted with 2x tbsp olive oil, salt & pepper.
Fatty protein like lamb, steak, rack of ribs, pork belly etc.
1/2 Coyo coconut cream yoghurt + a few raspberries/blackberries
 
Last edited:

ryan31337

Senior Member
Messages
664
Location
South East, England
I wonder how I'm going to manage with the fats. My migraines are triggered by tyramine, so I have to avoid nuts and avocado and bacon, etc., and I found a couple of years ago that I've got big problems with coconut oil (sulphites?).

It's interesting that the diet improved your migraines, @ryan31337. Presumably you hadn't previously identified tyramine as a trigger for your migraines (I assume they aren't for everyone)?
That does make it a bit trickier! I wonder if you could make it work for just a few weeks by having tons of olive oil or something like that? Totally unappealing I know but might be worth it for the experiment...if it works perhaps a dietitian can identify a better way. Its amazing how little bother food restrictions become you when you can identify a big difference to overall health (my experience anyway).

No, it seems migraine for me were likely due to fluctuating blood sugars. Looking back the time of onset (early morning and when skipping meals/physically active) all point towards this, not to mention I have only had 1x in 4x months since starting the diet, compared to 3x per week before.