First time in remission with ketogenic diet

[ryan31337]

@ryan31337 Yes unfortunately I have officially dx mild gastroparesis, protein and fat make it far worse but I get less heart pounding, carbs are the exact opposite, catch-22.

Interesting about the sleepiness after meals. When I was first ill I would get this and fall asleep after every meal but since getting worse this has completely gone away. Maybe that is a sign that some kind of dumping is going on.

Sorry, sounds like you are stuck between a rock and a hard place. I see these issues a lot on the hypermobility/EDS forums, some severe patients respond quite well to Octreotide, others have to go down the route of feeding lines etc.

The somnolence became the biggest issue for me. I'd have an hour or 2 of being able to just about function after eating (if you ignore the sweats, pounding heart, bloating & diarrhoea), but then the late dumping phase would hit and I'd get blurry eyesight, complete loss of concentration and no ability to tolerate noise/stimuli. I'd go lay down for 30 minutes, nap/pass out and wake up feeling OK. Until an endo realised it was reactive hypoglycemia I just thought my 'ME' had gotten way worse. They even had me in for a multiple sleep latency test to investigate narcolepsy because I was out like a light 3x times a day....no one else had even thought to consider my diet (beyond the useless fasting glucose test).

This is a really fantastic presentation on the subject if you haven't seen it before:

Ryan

 

[leokitten]

Hi all - I've added a #6 to the OP about baking soda.

 

[leokitten]

Dear @Janet Dafoe (Rose49),

Based on the research your spouse Dr. Davis and you have been doing, along with other labs, which discovered that it's likely PDH function in ME/CFS is severely inhibited there are quite a few of us that have had huge improvements and remissions on a fully ketogenic diet. Though we haven't yet heard many stories of severe or very severe patients using this diet, possibly due to communication difficulties. I want to thank you for all the work you've been doing, those findings have definitely given us clues to try and turn this disease around.

Have you thought of the possibility of introducing a nutritionally complete ketogenic enteral feed for your son? E.g. https://myketocal.com/ and tube feeding directions https://myketocal.com/directions.aspx. It's seems to be commonly done for pediatric epilepsy patients.

 

[bertiedog]

n my case, and unrecognised in many others I'm sure, there was also a more straight-forward physiological benefit from the keto diet: its impact on GI dysmotility. My glucose control had gradually become more and more dysregulated as my illness progressed, despite not having diabetes, and GI symptoms of rapid gastric emptying were becoming a big problem. This is something increasingly well recognised in POTS/hypermobile patients. The keto diet removes the insulin/glucose spiking problem caused by dumping and the high fat slows digestion. I would not be surprised if many of us have these problems developing as a result of small fibre neuropathy.

I have a very similar experience and I am keeping to 45 - 50 g net carbs and notice a good improvement in more consistent energy and better sleep. I find it isn't good for me to go the full 12-13 hours without food from 6 pm as I wake up with nasty migraines so I take a tiny bit of a Sorghum no sugar cracker (only about 2g net carbs if that plus lots of butter and some cheddar cheese) at 10 pm and actually my fasting blood sugars are better doing this. I am one of the weird people whose blood sugar actually ROSE on strict Keto. Apparently in some people it causes a sort of insulin resistance because of all the fat. I really didn't cheat in any way and was really annoyed to see the fasting blood sugar up from a usual 4.7 to 5.2 or 5.3. It was almost impossible for me to get it back to 5.5 in the day even if I hadn't eaten for 5 hours.

Glad that others are doing a lot better on Keto style diet I would definitely recommend giving it a trial but always being aware that we are all different and for some people 20 grams net carbs just isn't going to be doable.

Pam

 

[leokitten]

I just went outside, by myself, for the first time in over two weeks. I now have far reduced, or close to zero, photosensitivity and eye pain from light. I've always had this symptom with ME and it would cause PEM if I were out far too long. I would constantly squint from being oversensitized by the light (even cloudy days), and I would constantly have this horrible pain in the orbs of my eyes, very similar to having a hangover. It was like my eyes and brain just couldn't process all that light information properly anymore and they were making it known to me.

Before this diet and remission if I went outside, even if I rested for weeks, I would always have this symptom.

 

[leokitten]

I have a very similar experience and I am keeping to 45 - 50 g net carbs and notice a good improvement in more consistent energy and better sleep. I find it isn't good for me to go the full 12-13 hours without food from 6 pm as I wake up with nasty migraines so I take a tiny bit of a Sorghum no sugar cracker (only about 2g net carbs if that plus lots of butter and some cheddar cheese) at 10 pm and actually my fasting blood sugars are better doing this. I am one of the weird people whose blood sugar actually ROSE on strict Keto. Apparently in some people it causes a sort of insulin resistance because of all the fat. I really didn't cheat in any way and was really annoyed to see the fasting blood sugar up from a usual 4.7 to 5.2 or 5.3. It was almost impossible for me to get it back to 5.5 in the day even if I hadn't eaten for 5 hours.

Glad that others are doing a lot better on Keto style diet I would definitely recommend giving it a trial but always being aware that we are all different and for some people 20 grams net carbs just isn't going to be doable.

How long did you do strict ketogenic? Were you consuming any artificial sweeteners?

 

[Runner5]

I will fall asleep 20 minutes after meals. The issue seems to be grains particularly whole grains. Ruled out blood pressure drop and hypoglycemia. It seems that I'm just sensitive to some grains.

I went on a specialized Vegan diet and have done pretty well. Because of my bad stomach and sores in my GI there are a lot of foods I don't digest well. I don't digest fat or protein very well at all. I suspect I get more protein now that I'm Vegan then did before because I just wasn't digesting my food and my stomach and GI kept bleeding etc.

I eat tiny meals through the day that are easily digested and have fiber so I stay full.

it's pretty restricted though. Sometimes I just want to go have some fish and chips (I live beside the ocean - we have really good seafood.)

 

[Runner5]

I'll leave this right here....

https://www.thepaleomom.com/adverse-reactions-to-ketogenic-diets-caution-advised/

 

[leokitten]

@Runner5 I apologize, but I don't think it's a good source of information getting risks of ketogenic diet from Paleo Mom, who's biased incentive is to sell her books and products on the Paleo diet. It's only in her best interest to slam other popular diets. Paleo also has a laundry list of adverse reactions and warnings long term, but I don't see nee a wisp from her about that.

 

[Ema]

I just went outside, by myself, for the first time in over two weeks. I now have far reduced, or close to zero, photosensitivity and eye pain from light. I've always had this symptom with ME and it would cause PEM if I were out far too long. I would constantly squint from being oversensitized by the light (even cloudy days), and I would constantly have this horrible pain in the orbs of my eyes, very similar to having a hangover. It was like my eyes and brain just couldn't process all that light information properly anymore and they were making it known to me.

Before this diet and remission if I went outside, even if I rested for weeks, I would always have this symptom.

A ketogenic diet improves conversion of glutamate to GABA which may account for the reduced sensitivity. I have experienced this as well and it's amazing. I'm able to be in noisy, bright places now and it's no problem unless I have super-overdone it.

 

[Runner5]

@leokitten - I guess that's a good point, in my mind Keto and Paleo are closely related.

 

[bertiedog]

How long did you do strict ketogenic? Were you consuming any artificial sweeteners?

I was doing Keto type diet (probably around 40g net carbs and high fat) for about 2 months. Have started it again 3 weeks ago and experiencing a tendency towards slightly higher blood sugars again. I should add that I have adrenal insufficiency and am reliant on 6 mg Prednisolone daily. Tried cutting back a bit on my steroid but my health very quickly suffered so that isn't an option for me.

I am 70 now so don't know if this makes things harder and I suffered from severe reactive hypoglycaemia over 25 years ago but didn't know what it was then. I have often thought that it was a factor in me developing ME because of the stress it put on my body. It used to be so severe when out walking my dogs I would become almost drunk and I would be in a state of absolute panic and yet my legs were dead. It was horrific and I am sure this partly contributed to my adrenals being unable to produce sufficient cortisol/aldosterone.

Because of this and getting more informed I originally changed my diet to lower carb in 2001 so no sugar etc since then and never any added sweetness. I lost 24 lbs doing this as well as my thyroid and adrenals were treated and I have ended up slim and weight 9 stone 3 lbs.

I don't like the taste of sweet things at all whereas I used to be addicted to the taste and was the original carb junky but mainly it was things like wholemeal bread with the odd homemade cake thrown in and an occasional reward of a chocolate bar! I never crave anything sweet but I am drawn to a small amount of salted peanuts as a snack after walking. Partly this could be because I need extra salt but I think it is also to do with the fact I love them. However these days after a walk when I am feeling weak and bad aching legs (POTS) I try and have some coconut oil and no more than 1/2 ounce of peanuts. Definitely I have had more consistent energy overall and I don't feel so empty at the end of doing physical stuff but it is definitely still there, the batteries still do run out.

Pam

 

[outdamnspot]

Keto has been instrumental in prolonging my life (I'm still declining, so hard to speak in absolutes beyond the current moment). Two years, I was getting constant blood sugar crashes and having to eat a full meal every two hours to feel full; my brain completely shut down and I couldn't comprehend or follow a simple TV show. My first week on Keto was amazing and I went swimming for the first time in a few years; after that I crashed. It's never quite conferred the same physical benefits, but I definitely believe there is some effect on cognition/cognitive regeneration .. I can't concentrate on much along the line of reading or TV, but have completed hours and hours of a personal art project since I got very sick, which I attribute to Keto; my memory (which has always been good) is also a lot sharper than my 'healthy' friends.

One huge regret I have: I was in treatment for depression and ADHD prior to getting very sick. My entire life I've had some kind of issue with glutamate (I believe?) whereby mild increases in stimulation would offer trigger some kind of feedback loop and my brain would shut down with brain fog. I tried stimulants and they didn't work for this reason, and tried to add something like a benzo just gave me paradoxical agitation On Keto, I can handle a lot more stimulation .. I don't get foggy from using my phone all day, and I can drink coffee for the first time in my life. I really, really wish I had tried pairing a Keto diet with stimulants when I was in treatment ... I may have actually been able to tolerate them .. but alas, hindsight is 20/20 obviously.

 

[Murph]

This is quite inspiring to me. Food is my last great stumbling block. What I eat seems to be very important to how I feel. If I let my blood sugar drop things get quite bad. But perhaps I just need to push through that and let myself get to ketosis.

Certainly Ive felt better in the past from cutting out carbs. At the moment I feel reliant on them but maybe that's just a cycle of addictive blood sugar spikes, idk.

My big challenge is I can't tolerate dairy or eggs, and avocado is expensive where I live! Can a man live on Canola oil alone!?

 

[lafarfelue]

This has been a great thread. Really glad keto's helped you so much @leokitten !

I've done keto a couple of times in the past (before I got properly sick with ME/CFS and POTS, and also before I became intolerant of eggs, cheese and dairy ) though only used it to bulk up and trim down fat for sports related things. Never stuck with it because it's quite extreme for someone who's kinda lazy with food like I am (or rather, was)

I just downloaded the app that OP linked to and I started looking through the information. There's a lot of really great basic info in there for anyone wanting to try it out. There's even a list of contraindications which I thought very interesting and something I've not looked into before. Attaching a screen shot here so that you can see it without downloading the app Probably worth a look for all of us with our various systemic health issues

*edit - sorry the image is so big, I tried to fix it but wow that is past my current cognitive abilities at the moment!*

 

[brenda]

I deeply regret getting drawn into low carbing. I hope I can recover from the damage it caused me, to my gall bladder, liver, pancreas and insulin sensitivity. I have heard quite a few others say they were made worse by keto/very low carb. I think it messed up my gut biome as well due to low fibre.

I did well for a few months but later began to deteriorate and had sugar cravings, weight gain and worse cognitive functioning.

I am now plant based whole food, no salt sugar or oils and doing well. No cravings and I have been able to give up cocao even 100% chocolate.

I am not going to debate with anyone but just wanted to put the opposite side of the debate on here for those who want to look further into it and not just jump on the bandwagen.

https://www.forksoverknives.com/the-film/#gs.Bnvvc5k

http://www.whatthehealthfilm.com/

and read Dr Greger: https://nutritionfacts.org/

You can find other doctors and advice on cooking on You Tube if you search for plant based whole food diets. There is also the China Study.

It is not hard to do if you keep it simple to start off. Just concentrating on beans, veggies, seeds, nuts and some whole grains if required in a Buddha bowl. Just opening a can of unsalted black beans and putting them on a salad with a sweet potato and vegan cashew mayo fills you up. (delicious)

I often just throw things together like last night I had chickpea pasta, broccoli, red peppers from a jar, with some chili. Smoothies are great. I am trying to get into more raw foods as I believe that those with the most advanced illnesses need more raw to recover. The food does it.

I was prediabetic yet I am eating loads of fruit now. My BP is down weight 20 lbs down and will have my BG checked soon when I attend the diabetic clinic hoping to borrow a 24 monitor as I think I may have T1D as well as the insulin resistance which is harder to fix but those on the diet get their insulin requirements right down and look great..

I no longer crash and have plenty more energy.

Brenda

 

[ChrisD]

It is not hard to do if you keep it simple to start off. Just concentrating on beans, veggies, seeds, nuts and some whole grains if required in a Buddha bowl. Just opening a can of unsalted black beans and putting them on a salad with a sweet potato and vegan cashew mayo fills you up. (delicious)

I often just throw things together like last night I had chickpea pasta, broccoli, red peppers from a jar, with some chili. Smoothies are great. I am trying to get into more raw foods as I believe that those with the most advanced illnesses need more raw to recover. The food does it.
Brenda

I think we are just all so different and that as has been identified, ME is probably a number of conditions under one umbrella name. I certainly cannot tolerate any of that food due to FODMAPs, histamine, nightshades etc. It all makes my condition so much worse and removing them entirely has been a game changer for me.

I would say to just be careful as a plant based diet is undeniably deficient in a lot of vital nutrients and while you may do well initially more due to the removal of processed foods, in the long term there can be issues with deficiencies of nutrients essential to brain function. But as they always say, its all about listening to your body, so if you keep doing well then stick to it.

 

[brenda]

I certainly cannot tolerate any of that food due to FODMAPs, histamine, nightshades etc. It all makes my condition so much worse and removing them entirely has been a game changer for me.

I thought that I could not eat certain foods (and still avoid nightshade) but once the animal fats and vegetable oils, sugar and salt were gone, my body could cope with them much better and is actively healing whereas before on low carb, after the first flush of healing, I stalled and then went downhill.

in the long term there can be issues with deficiencies of nutrients essential to brain function.

Agreed and is why I take b12, use a sun lamp in winter, and take algea r3. Everything else is in the food.

 

[Gondwanaland]

Attaching a screen shot here so that you can see it without

Thank you so much for that.

How would one get such a diagnosis? I might have one of those problems because I had 2 huge adrenal crashes - one in 2014 from using exclusively coconut oil for cooking and one in 2017 from adding 1 tsp of flaxseed oil to my supplementation*. Never had any problems from cooking with animal fat.

* I think coconut oil caused thyroid overstimulation and flaxseed oil caused thyroid hormone blockage.

 

[leokitten]

@leokitten - I guess that's a good point, in my mind Keto and Paleo are closely related.

Hi @Runner5, they are actually quite different. I do not know all the specifics of Paleo, but with Paleo you can eat as much carb, protein, and fat calories as you need and there isn't any set percentages of each. Paleo is more of a lifestyle than a diet and it centers around removing certain food groups, like no grains, breads, pastas, and dairy (aka the things Paleo people believe humans in the Paleolithic era didn't eat). But with Paleo you can gorge yourself on high carb vegetables and fruits, and you can eat tons of protein. Most people on Paleo are definitely not even close to being in ketosis.