Diet, sugar and wheat in CFS

[hgiertler]

G'day all fellow CFS sufferers,

I'd like to ask for your opinion about diet in CFS.

Quite a number of health care pros and natural therapists have advised me to stick to a healthy diet that does NOT include sugar and sometimes even wheat.
Include plenty of fluids, green vegetables, whole grains etc some fish, lean meat... You know what I mean!

I was told sugar feeds the bad bugs. This is also advertised on quite a few online resources: Dr. Myhill, Prof. Garth Nicolson.

Now here comes the problem: With my balanced diet I would normally have an amount of sweets a day. Say 60-100g (Equivalent of one Mars bar) (Cake, Chocolate, muffin, ice cream you name it) I don't have refined sugar in drinks though.

If I cut out all refined sugar I notice having less energy after a few days and if I cut out wheat (Pizza, White bread, pasta etc) I go flat as. I can't do my normal routine of 10hrs work a week or even domestic chores. I have kept this up for a week or two on two occasions but had to give up because I am not on disability payments and have to do some work during the week.

I don't crave so much for sweets. I just find my energy levels dropping within a few days. I don't see this as a sugar high which would occur within minutes/hours I think.

Here's my question:
1) What is your experience with cutting out sweets (refined sugar)?
2) What do you think about my explanation that sugar is easily digested and easy energy so as a weak person I don't have to spend as much energy on digestion. (Not saying to have lots of it - Balanced!)
3) Can I expect a turnaround if I hang in without the sugar and wheat after a couple of weeks? Any experiences? (I just can't give up my job for a diet if there's no evidence that it'll at least return me to the same energy level)

Thanks for reading and I am looking forward to your responses
Henrik
(Male, 37, Melbourne, 8 yrs CFS w sudden infectious onset)
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P.S.:
Here's some more thoughts but I wanted to finish the essentials to keep it short:
One of the dilemma might be that if I cut out wheat I obviously have to eat more of the other stuff. This means more vegetable shopping and more cooking equals more hard work equals exhaustion. This is part of this problem. I am told to rest. If I opt for washing, cutting and cooking vegetables plus cleaning up versus eating Pizza then I can't see how I am resting. Unless I have a maid or carer who does all that for me. But I don't. I like to do some healthy cooking and some Pizza takeaway. What do you reckon?

I'd love to know what they feed patients with weak immune systems in hospitals. If I have serious pneumonia will I be fed wholemeal rye sandwiches with greens and sprouts or white toast with honey and apple sauce?

Another point is that my health care providers and those online resources mentionned above don't address this issue. My Naturopath says I am on a sugar high. I disagree. One permanent sugar high!

You can even buy refined sugar tablets for physical performance. Goes straight to your blood. (DextroEnergen is a German brand) Do you see the contradiction? I am screaming inside that this is not addressed.

I obviously don't mean to suggest that diet alone can fix CFS. But therapists who advise to go on the diet suggest that it is a fundamental building block of their treatment plan. In other words if you don't do the diet why bother with the rest. I'd like to do their treatments but can't do the diet...

[Chronicfatiguetreatments]

hi hgiertler,

I go to a dr. that made me go on an almost zero carb diet. With only organic food, and tons of supplements. I was on it very strictly for a whole year. It made absolutely no difference for me.

But,I met a mom and daughter in her office, that were 100% recovered from CFS using that diet and supplements.

Right now i try to eat well, no fast food, or too much sugar. But i still eat some some sugary things and it doesnt really affect me.

[kissaragi]

[quote="Chronicfatiguetreatments"]hi hgiertler,

I go to a dr. that made me go on an almost zero carb diet. With only organic food, and tons of supplements. I was on it very strictly for a whole year. It made absolutely no difference for me.

But,I met a mom and daughter in her office, that were 100% recovered from CFS using that diet and supplements.

Right now i try to eat well, no fast food, or too much sugar. But i still eat some some sugary things and it doesnt really affect me.[/quote]

Im exactly the same, although i only tried the diet for a month. Its one of the first things dr myhill does when you see her.

[Chronicfatiguetreatments]

a zero carb diet is not easy. I had a freak out towards the end and ate an entire bag of butterfingers

[cfs_since_1998]

The 60g-100g of sugar is a HUGE amount to eat at one sitting. I had a large bag of ginger snap cookies on my desk and that amount is the equivilant of almost the entire bag, 30-50 cookies. Are you sure you're not on a sugar high?

I do have sweets once in awhile, maybe a couple of times a week. I can't say that I feel better when avoid sugar but I definitely feel worse when I eat it in a large enough amount. I get a sore throat and start to feel even more tired than usual. I think the key is portion control, I might have half a slice of cake or one cookie in a day, and only a few days per week, and that seems okay. A whole slice seems like too much. I don't drink anything but water so that helps too.

Whats interesting is that the longer I go without sugar, the less I crave it. Most people are actually addicted to sugar. I've gone several weeks without eating anything sweet, but as soon as I do have one single sweet, I'm addicted all over again and it takes me forever to get off of it.

I have pizza usually once a week. I just try to get healthier vegetable toppings, e.g. peppers and onions or whatever. Like they say it's important to have balanced diet. When I cook for myself I try to have a protein, a starch, and a vegetable and that seems to help. I do agree with you about the energy it takes cooking for yourself. Even though I love to cook, often I am just too tired.

I am not sure about your idea of eating simple sugars because they're easy to digest. It's true but this also causes your blood sugar to spike, and the spike in your blood sugar causes stress, and causes you to secrete adrenaline, etc. Since people with CFS already have adrenal fatigue this is not a good idea. Maybe if you ate it extremely slowly it would work? I don't know.

When choosing what to eat try to keep in mind what Hippocrates used to say, "Let thy food be thy medicine and thy medicine be thy food."

[hgiertler]

Thanks Guys for your replies so far. I really appreciate it and from the length of my post you can tell it was kinda important to me.

When I mentionned the 60-100g I think I was somewhat off-course.
I meant the equivalent of a Mars bar which tends to be 60g these days.
Now in there would be maybe 20-40% sugar. So this is 20g of sugar in one sitting.
Cravings going away as you stay off sugar I have that too. And once you go back on the cravings are back. Same here.

I do eat a fair bit of sweet fruits though. Watermelon, grapes, apples and I have fruit cravings. Love the juices. They call me the fruit bat ) Now that's sugar too, I admit.

Cheers
Henrik

[billoddie]

You sound very similar to me. Loved my fruit...lived on it. was a vegetarian as well. Since eliminating as much sugar as possible (including most fruit) and eating more protein (chicken unfortunately), I am definately doing better. Every week or two, i get irristable sugar cravings (lollies), and just have to have them. Pay a huge price for the next 24hrs...horrible.

[KimberlyC]

This kinda sums up my current delima. I've been considering cutting out all simple sugars from my diet to see if there is any improvement on how I'm feeling. The problem is a small burst of sugar seems to keep me going long enough to get something done... and I always have more I want to get done than I can ever accomplish.

So when I want to finish the dishes for example and am starting to feel wiped out, I'll have a bit of peanut butter (the sugary kind) or a small handful of dark chocolate chips and I usually feel a lot better in the short run. I seem to get low blood sugar though, and this would be a huge factor in sugar making me feel better. Problem is since I've put on weight and because of other factors, I'm getting to be high risk for type 2 diabetes.

I know that refined sugars are really unhealthy. I typically don't eat much candy or cookies or cake, etc, but my candy of choice is plain dark chocolate which isn't as bad as most. I avoid sugary drinks, but I do drink a lot of diet soda. The caffeine also seems to help me get through the tough parts of the day. I also know that that isn't healthy and I want to make the difficult change. Whenever I do eat something particularly sweet or accidentally get a regular soda when I asked for diet, I feel very strange almost immediately and get a really bad sugar crash within an hour or so.

I'm not sure how much blood sugar fluctuations have to do with CFS, or how much mine actually fluctuate because I don't have very many opportunities to test it. I have never had a doctor seem concerned about my blood sugar, but I know for myself that sugar has great effect on how I feel... and it usually makes me feel better in small amounts. I also believe the theory that simple sugar makes us feel better because its easier to digest and goes straight to energy. But I'm not sure that's the best thing for us in the long run.

[granny on the go]

I've been fighting this thing since 1958. I can eat what I want if I take lots of supplements and go to bed for a couple of months.
But, if I want to stay up and working at a job, I have to leave the refined carbs off per Dr. Orian Truss and the The Missing Diagnosis.
I get much better if I don't have ANY wheat! I also have a tendency to grow yeast in my gut and will have problems if I don't watch my carb intake and take lots of probiotics.
Google gluten intolerance, especially if you have are of Irish or surrounding areas heritage.
Today I have been looking at R.E.D.D. and it sounds like a reason but I haven't found any answers on what to do to change my health.
I found this "When the 2'-5' Oligo-adenylate synthesase molecule binds with the 37kDa RNaseL molecule a newly activated, "rogue" enzyme is let loose. This linked, abnormal molecule is extraordinarily active, more than 6 times that of the linked, 80 kDa RNaseL. It resists proteolytic denaturation and has a deadly property --- it does not switch off! It therefore lasts longer in the body and plays havoc with protein synthesis, enzyme production and cellular function. This abnormal, "loose cannon" molecule is a rapidly cycling enzyme that consumes adenosine triphosphate [ATP], the molecule that supplies energy to the cell, by the bucket-full. Someone has called it a "black hole" for ATP. It is estimated that up to 70% of the cell's energy production is consumed by this abnormal up-regulation of the interferon pathway. It's little wonder that patients are "fatigued".
This article is dated 1999 and is rather lengthy but explains what happens pretty good. Now, I'm looking for an answer to how to turn off the reaction.

[ldg]

Bumping an old post rather than starting a new one. Just finished reading Potatoes not Prozac by Kathleen DesMaisons Ph.D. about sugar addiction. A lot of info can be found at her website http://www.radiantrecovery.com/index.html What she says makes sense and very relevant to CFS symptoms and my experiences and experiments. There are seven steps and you do one step at a time, there are Yahoo groups for support. So I will give it a go. I was doing some of the steps already but not eating enough protein and not always with a complex carb. The vitamins she recommends I am already taking and I am sure most of you are already. Vit C, B and Zinc. So there is nothing extra to buy and you have to eat anyway.

[grace]

Although I hate it, if I go on a diet that eliminates all gluten, dairy & refined sugar I do feel better...am on it now...

[neil25]

yeah ive cut out dairy, wheat and refined sugar. generally anything which is bad for me. I used to love any sweets i was a bit of a addict however as soon as i eat refined sugar i get serious pain in my neck and joints so i have to cut it out. I have also cut out meat from my diet i find that i get pain in my arms from it.

[dukey]

i try to avoid all refined sugars
I eat a tonne of saturated fat tho, yummy Every time you hear saturated fat is bad for you, feel sorry for those poor babies drinking that breast milk that is filled with it. I bet god didn't think about those poor babies cholesterol when he created breast milk.

/sarcasm

[ldg]

I don't think saturated fat is bad either, think of the Inuit's. I think these modern fats are bad - margarine etc because they are not natural. But of course everything in moderation.

[dukey]

you are a correct
manufactured fats are extremely bad for you

A Harvard Medical School study followed more than 85,000 women over an eight-year period. The researchers compared the diets of those who developed heart disease over that time with those who did not. They found that major dietary sources of trans- fats, such as margarine, were significantly associated with higher risks of coronary heart disease.

Source: The Lancet, March 1993, 341(8845):581-5

There's no risk of heart disease from eating butter, but that's not what the idiot box (the tv) leads people to believe.