The ultimate poll about CFS/ME diet

[Owl42]

Hi guys, I've been splitting my brains appart in the diet topic since I came to the forum, for I've experienced great recovery from quitting some foods and a lot of symptoms from taking others.

So, seeing how my researching went into a LOT of different and contradictory diets I'm looking for your experience.

I want to see how most of you are responding to these diets (and others if you have tried them) and try to find wich one would be better for me.

If you feel like posting and not just voting, you could tell us your experiences which eat diet, if it was positive or negative, what are your main symptoms or the ones you felt were relieved the most by those diets, and the time you spent on them. Add all the ino you want but make it easy for the others to get the most info the easier way. For example.

I tried:
-Histamine elimination: Good to great results
Tried it for 2 years
It relieved me from head aches, some crashings and facial flushing
It didn't help my sleep dissorders, some pain and mental fog

(here you add the details and your experience on the diet, any comments or tips)

-Vegan diet: Neutral to bad results
Tried it for 2 months
It made my digestions easy and lost some weight
It didn't help with fatigue and I was lacking energy, some cognition went better (less "wired") and some went worse (awful memory and concentration)

Details: I kept the elimination of most non-tolerated high histamine foods and experienced better results when adding chicken to the vegan diet.

I hope you like this thread and some of you find it as helpful as I think it would be for me I wish to read your experiences.

 

[helen1]

@Owl42

Thanks for the poll, good topic!

I voted but feel the choices are too black-and-white since 'worked great' is ambiguous.

For example, yes the Paleo diet works great for me but only for hypoglycemia and weight control.

Same with low oxalate diet, yes reduced my oxalate levels and gout recurrence so 'worked great' but only for that issue.

None improved my main ME symptoms.

Maybe add more categories to have it more accurately reflect people's realities.

 

[MeSci]

My diet, supplements and summary of results are in my profile, but I'll copy them here. I haven't voted as I'm not sure if I can say that the effects are 'great' when I still have the fatigue!

DIET AND SUPPLEMENTS

I am a long-term vegan.

Leaky-gut diet

I cut out gluten, and also oats and buckwheat due to a possible reaction to them, and generally reduced grains and sugar.

Supplements:

Sodium bicarbonate
L-glutamine
Alpha-lipoic acid
Acetyl-l-carnitine
Omega-3
Bone minerals

Periodic short courses of grapefruit seed extract (GSE) when bowels have got loose again - it's an antibiotic that I use which fixes the gut although I am not exactly sure whether it's because it preferentially kills the bad gut flora or whether it reduces them overall, enabling the diet to create the right balance again.

..........................................
IMPROVEMENTS

• Weight has normalised (was overweight)
• Much less nausea and abdominal pain, appetite more stable
• Reduced tension and anxiety
• Better sleep
• Stronger muscles
• Improved balance and coordination
• Clearer sinuses
• Dermatitis on palms now rare
• Less dental pain
• Bones feel stronger, no further fractures
  

 

[msf]

FODMAP worked great for me - I went from mostly feeling ill to mostly feeling tired. I think I will try to combine it with Paleo/GAPS though, since I still have a leaky gut.

 

[Snowdrop]

You might want to consider the information on diet from this article: http://www.bbc.com/news/magazine-35193414

The title suggests it's about weight gain but it goes beyond that and has other health implications.

 

[Rick Sanchez]

I have tried almost every single healthy diet under the sun, almost always including large amounts of coconut oil, sadly nothing has helped.

Honestly, I probably wouldn't be able to tell the difference between eating Macdonalds and oats all day as opposed to a completely natural diet consisting of loads of vegetables and other good stuff.

I definitely recommend eating healthy, which I still do, but honestly... Eating healthy in my own experience has been extremely overrated if one doesn't have weight issues. I really wish the reward for a healthy lifestyle was greater, though sadly this hasn't been the case from personal experience. (It should be said that I am from Scandinavia, where living healthy is basically a religion, so I have different standards than most regarding what constitutes healthy / unhealthy)

 

[Snowdrop]

I have tried almost every single healthy diet under the sun, almost always including large amounts of coconut oil, sadly nothing has helped.

Honestly, I probably wouldn't be able to tell the difference between eating Macdonalds and oats all day as opposed to a completely natural diet consisting of loads of vegetables and other good stuff.

That's somewhat the point of the article I linked to. It turns out that we are all individual in our response to the foods we eat because of our unique microbiome. What works for one does not necessarily work for another. Your particular biome must be pretty undiscriminating.

 

[bsw]

The options in your poll seem a little binary. I noticed slight improvements when I went paleo and then some more improvements when I went ketogenic, but they weren't enough to really push me into health. That being said I am definitely grateful for the benefits they gave me and they definitely outweigh the inconvenience. But they weren't 'great'.

 

[Kati]

i did not answer your poll because my answer is none of the above. i eat what I want to eat. Period.

What if diet has nothing at all to do about it? Just a thought. i know many here are not ready to accept this earth shattering eventuality.

 

[daisybell]

I also haven't answered because I haven't tried any specific diets. I eat healthily, but don't follow any particular diet. I don't think it makes any difference for me.

 

[roller]

i feel best when i eat everday noodles.
i often think, i should not eat the spaghetti anymore, but other shapes (spirales etc.) are not so good.

 

[Owl42]

I think it would get a little messy to have a "worked moderately" option for every diet, even more now I can't change the order of the options (maybe a moderator could?).

Let's just use the "great" not in a ME/CFS symptoms standard but thinking about the health problems those diets are intended to help or rate them from what they have actually accomplished in us.

I'll add a "Feeling like not using a diet is the best for me" option.

 

[CCC]

We ended up with paleo + oats + a2 milk + nothing artificial. In other words, meat and three veg for lunch and dinner, porridge for breakfast. It worked in the sense that it made nothing worse.

 

[lansbergen]

i did not answer your poll because my answer is none of the above. i eat what I want to eat. Period.

Me too and add to that: whenever I want to eat.

 

[Gingergrrl]

I had to do the eliminate histamine from my diet if I wanted to live, I didn't have a choice!

 

[JohnCB]

I take it the assumption behind this poll is that changing diet could, or should, modify ME symptoms to some extent. I have not attempted in any significant way to do this. However I do diet in a general sense. I also have type 2 diabetes and it is known that dietary choices do have an effect on this part of my illness, so I do modify my diet in recommended ways.

During the time I have had ME I have also dieted for weight control. I haven't used any diet with a fancy name or celebrity endorsement. Basically I ate less. I checked the calorie values and I reduced my calorie count. I also reduced fat content as that is a way of reducing calorie content (although I needed to be careful that I didn't swap fatty foods for ones with higher sugar). Calorie counting has been highly successful, as I weigh a lot less and I do feel better for being smaller. That is also measurably better for my blood sugar control: I could see that improve as my weight decreased. Although I haven't been actively calorie counting in recent years, (the two big diets were about 15 to 20 years ago) my weight has become stable at a lower level than it used to be. I have regained some weight since I stopped active dieting but I am still about 30 pounds less than my peak weight. Partly I have learnt to eat less fat and sugar and more recently I have been looking more at the levels of salt that I eat.

So I tried calorie counting over many years and I had great results and I would recommend it to anyone overweight or looking for improved blood sugar. It probably also helps ME indirectly as I am lugging less weight around and I feel better about myself for it too.

 

[Kati]

I take it the assumption behind this poll is that changing diet could, or should, modify ME symptoms to some extent. I have not attempted in any significant way to do this. However I do diet in a general sense. I also have type 2 diabetes and it is known that dietary choices do have an effect on this part of my illness, so I do modify my diet in recommended ways.

During the time I have had ME I have also dieted for weight control. I haven't used any diet with a fancy name or celebrity endorsement. Basically I ate less. I checked the calorie values and I reduced my calorie count. I also reduced fat content as that is a way of reducing calorie content (although I needed to be careful that I didn't swap fatty foods for ones with higher sugar). Calorie counting has been highly successful, as I weigh a lot less and I do feel better for being smaller. That is also measurably better for my blood sugar control: I could see that improve as my weight decreased. Although I haven't been actively calorie counting in recent years, (the two big diets were about 15 to 20 years ago) my weight has become stable at a lower level than it used to be. I have regained some weight since I stopped active dieting but I am still about 30 pounds less than my peak weight. Partly I have learnt to eat less fat and sugar and more recently I have been looking more at the levels of salt that I eat.

So I tried calorie counting over many years and I had great results and I would recommend it to anyone overweight or looking for improved blood sugar. It probably also helps ME indirectly as I am lugging less weight around and I feel better about myself for it too.

What @JohnCB said. Bravo!

 

[NilaJones]

I am working on an elimination diet, and it has helped immensely.

The things I react to don't fit any 'named' diet that I am aware of -- some histamine foods, all grains, etc. Some reactions are only pain and inflammation, others include fatigue too.

 

[MeSci]

So I tried calorie counting over many years and I had great results and I would recommend it to anyone overweight or looking for improved blood sugar. It probably also helps ME indirectly as I am lugging less weight around and I feel better about myself for it too.

That shows how much people vary in what works re weight loss. I counted calories from adolescence and through early adulthood, but it didn't work as I was always hungry (which is also not a good way to feel). I had to reduce carbs to lose weight without constant hunger.

 

[JohnCB]

That shows how much people vary in what works re weight loss. I counted calories from adolescence and through early adulthood, but it didn't work as I was always hungry (which is also not a good way to feel). I had to reduce carbs to lose weight without constant hunger.

Yes, I felt hungry. Of course I did. I didn't expect to lose a pound or half a pound each week without feeling hungry. The appetite system is quite fussy about telling you you're not getting enough food. That's the most difficult part of weight loss. The next most difficult thing was not to go on a binge once I decided I had lost enough weight. I knew the only way I would lose weight was by eating less than my body required to maintain a steady weight. Seeing my blood sugar measurements improve was a great motivator and so was seeing that I was actually getting weight off.