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ME/CFS: In Free Fall Through the Looking Glass
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Diet / Carbs / Blood Sugar + Energy from food

Discussion in 'General Symptoms' started by kristianshaw, Apr 13, 2014.

  1. kristianshaw

    kristianshaw

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    Hi guys,

    Ive had ME for 10 years now, becoming very severe over the last 3 years. A thing that I've always wondered about but never paid as much attention to as I maybe should have is diet. For me personally, one of the main problems I seem to face is that when I eat - I never seem to get energy from my food.

    I wake up in the morning and eat breakfast and feel as if the energy/nutrients pass straight through me. This is the same for every meal. This has only seemed to appear for me in the last few years since things took a turn for the worst.

    I consistently crave sugar and carbs all day long, in fact the only times I ever feel like I get any energy from my food is when I seriously overdo it with junkfood and carbs - ie. 5000+ calories a day. I noticed this while on holiday a couple of years back, that I seem to have the need to eat insane amounts of food (mostly bad carbs) to get some sort of energy (the difference is very noticeable). Obviously, I cannot live like that full time as I ended up putting on 3 stone of weight over a 4 month period.

    I have a lot of trouble dieting to lose weight, as when I eat the normal calorie recommendations of 2000-2500, I dont get any energy at all- so can you imagine how bad I get when restricting calories? (Restricting calories is the only way I manage to lose weight, as I can't exercise any more than 25minutes very slow walking).

    Anyway I guess the point of this post is to see if anyone else seems to face these issues? I've been reading a lot about Reactive hypoglycemia in CFS/ME and recently have been trying to do a low-carb diet over the last few weeks but holy hell I am so insanely weak I Can't even stand or think straight, my body seems to cry out for bad carbs.

    I'm eating really healthy and attempting to get my energy from proteins and good fats but nothing seems to be happening energy wise and I'm feeling extremely ill. On the very odd occasion I have to get something done, I've had to resort to eating a couple of packets of crisps and a few of my dads diabetes dextrose tablets and i get a bit of a kick of energy, much much more than i get from eating well.

    I read recently some information about some ME sufferers having a metabolic inflexibility, where they cannot process energy from fats correctly (ketosis) - could this be an issue? How do i break through this? Everytime i've had my blood sugars done both fasting and non-fasting, and also after meals they've been within normal ranges.

    Can any one give me any advice or pass any thoughts on whats happening here? It's almost become my worst symptom.

    Thanks so much in advance.

    Kristian
    Last edited by a moderator: Apr 13, 2014
  2. lnester7

    lnester7 Seven

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    I face the same thing is a INSANE amount of need to eat sweets. I do not do too bad on junk food but I need Carbs and sugar to keep going, I try to avoid this by resting instead and treating the crazy "I need to binge eating" as a crash, I succeed sometimes but others I do not.

    If I consume a redbulll energy drink (I KNOW!) the need goes away. So is my last resort. I also have some trick snacks

    Nuts and Cramberry.
    Hot cocoa w coffee and one slice of bread and turkey.

    So I give into the carb but try to do little and pair with protein.
  3. A.B.

    A.B. Senior Member

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    Hello,

    I'm familiar with what you're describing (but I'm the skinny type despite constant hunger). To see if my experience applies to you, try the following diet:

    The goal is to stabilize blood sugar. This is done by eating small meals every 2-3 hours. These meals should consist of foods that are digested at differing speeds. Some meat, some fat, some unprocessed carbs, and some fruit is a good example. Right before going to bed, eat some nuts.

    Sweet beverages, and any meals consisting mainly of food with high glycemic index (google it) must be strictly avoided. A lot of junk food is designed to give a quick injection of glucose, so it should be avoided. You can eat small amounts of sweet foods, as long as you combine them with other things that are digested more slowly.

    You might be saying: but I don't have hypoglycemia, my tests are normal. So are mine, as long as they're taken in the morning. Later during the day, blood sugar can become unstable, especially when less than ideal meals and physical or mental exertion is involved. I've had a glucose curve in the morning and everything was normal. Frustrated, I repeated it in the afternoon, and dropped to 46 mg/dL glucose.

    I found that a low carb diet makes things worse, and I believe it is contrary to what the body actually needs in this situation. The diet described above means less work for the body, whereas a low carb diet means more work.

    With the above strategy, my well being has improved noticably. As I got better, I was able to relax the diet to something less restrictive, but under particular circumstances I still need to go back to it because it doesn't cure the underlying problem. My overall symptoms still follow a relapsing-remitting pattern and the diet supports the body somewhat during relapses. The question is whether and to what degree my experience applies to you.

    Have you ever had a brain MRI done?
    Last edited: Apr 13, 2014
  4. kristianshaw

    kristianshaw

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    Thanks for the info AB - thats pretty much the kind of diet I'm doing at the moment. Struggling though.

    I had a brain MRI last August and everything seemed normal - why do you ask?

    Thanks
  5. A.B.

    A.B. Senior Member

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    I have empty sella syndrome, and a doctor has speculated that it might be related to these particular symptoms, so I was curious if you had it as well.

    PS: I would not describe this diet as "low carb". A considerable portion of energy comes still from carbs. It's not about avoiding carbs, it's about avoiding carbs with high glycemic index, especially in larger quantities and on their own. If you're trying to get your energy mainly from protein and fat, then you're just going to burden your body more, at least if our problem is similar. I have also never struggled or suffered with it, but suffered on a low carb, high protein diet.

    Carbs are not created equal. For example, plain white baguette has a glycemic index of 95, whereas brown rice has a glycemic index of 50. Pure glucose is at 100.

    http://www.health.harvard.edu/newsweek/Glycemic_index_and_glycemic_load_for_100_foods.htm
    Last edited: Apr 13, 2014
    justy likes this.
  6. kristianshaw

    kristianshaw

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    ok thanks for the info AB, I'll have a restructure of the diet stuff around the lower GI foods.

    Just out of interest, do you have any idea how this issue may have occured? I didnt use to have these problems. Do you think its all highly related to blood sugar fluctuations?

    THanks again
  7. A.B.

    A.B. Senior Member

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    I have no idea, but there is a tendency in the family to occasionally have mild reactive hypoglycemia (my mother and grandfather have it), and CFS is associated with mild endocrine dysregulation, so there appear to be two factors affecting the same system negatively.
  8. rwac

    rwac Senior Member

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    I suspect you are not storing adequate glycogen in your liver. A low metabolism and hypothyroid may be the cause of that. I've had decent success with consuming most of my carbs as fruit and rice/potato. If you're gaining weight, perhaps you should reduce the fat in your diet, and especially PUFAs.

    Have you heard of Ray Peat or Matt Stone?

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