First time in remission with ketogenic diet

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.

 

@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.

 

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

 

How r u doing @leokitten? Curious to try this

 

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

 

Me too - also magnesium.

 

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.

 

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.

 

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

 

& @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?

 

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.

 

@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.

 

@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.

 

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.

 

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!

 

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.