Officially diagnosed with non-epileptic GLUT1 deficiency syndrome and need help

#1

I’ve recently been diagnosed with non-epileptic GLUT1 deficiency syndrome. It’s basically a genetic disease in which the nervous system needs sufficient ketones to function normally.

I’ve tried a high fat diet with sufficient calories but always failed in the long run because my nervous system wasn’t receiving sufficient ketones. So I would consume some carbs and suffer non-epileptic seizures.

Can you guys share your extended fasting ketone level charts?

After how many days do ketone levels drop?

In my situation. Is it advisable to eat every other day?

(Tim Cee) #2

Welcome👋. I’ve no ideas to help your case, but hang in there. I’m rooting for you.

(Bob M) #3

This is a difficult question, because what we measure is only the ketones that are “in transit” or not used. They don’t necessarily measure what’s available.

How long were your runs?

Have you tried a PKD (paleo keto diet, very high fat)?

Have you tried exogenous ketones or MCT oils/powders? MCT oils work to increase ketones, though I seem to remember different varieties (eg, C8) might be better at this. I’m not sure. Also, these might cause some people digestive issues. For instance, I can only take C8 with any frequency, otherwise I get digestive problems. But I’ve also given up quite easily - take MCT oil, get a problem, give up. It might be that one can overcome these obstacles.

(GINA ) #4

Wow. I don’t have much advice, except exogenous ketones are readily available these days. I wonder if they would help.