EVERYONE NEEDS TO READ THIS. Great improvement by diet change

[knackers323]

After almost 25 wasted years of CFS I have found something that if is not a complete cure, it is an enormous improvement.
Words cannot describe the difference in how I feel.

many will probably read this and dismiss it, just as I didmultiple times over the years.

How i wish I could have those decisions back.

It seems overwhelmingly difficult to do at the beginning, but in fact it is extremely easy, especially once you start seeing results.

There may be moments when you will feel bad and want some comfort food but don’t give in, I made this mistake many times over the years and didn’t stay the course.

It is unlikely to help everyone but I am extremely confident that for those that give it a proper go, it will drastically change the lives of more people than those it won’t.

It’s the FOODS I’ve been eating that have been causing the problems.

I eat mainly vegetables and fruit.
Small amounts of meat.

no dairy or wheat. I think gluten is the problem as I’ve now introduced gluten free bread and it seems to be ok.

I also keep anything premade, that has preservatives, colourings, chemicals, sugar, etc. to a minimum.

I began to see a difference after two weeks and it keeps getting better with time .

I would urge others to gove it at least a six month trial.

I had zero stomach symptoms.

I know of at least eight others who have seen the same results

I think the cause is due to inflammation, the immune system and possibly the makeup of gut bacteria

I always thought that there was no way foods could make me feel as terrible as I did, especially foods I had always previously eaten without issue.


I WAS WRONG

And it has cost me everything.

Don’t waste another day before giving it a proper trial.

Any questions please ask

 

[gbells]

I'm a big proponent of a low inflammation diet. Recently it really helped my obese diebetic mother who is in CCU with covid-19 at day 12. I knew she would have a rough time when she told me she was having trouble breathing at day 3 and reminded her about the importance of a low inflammation diet to help keep lung inflammation down as much as possible. She had a really rough time on day 10 and 11 (confusion from depression, difficulty breathing and low O2 saturation-she thought she was going to die and called me to say goodbye) but she's finally over the hump on day 12 with oxygen saturation at 95% on high flow oxygen and the nurse says she's the healthiest person in the ward. I'm proud of her for sticking with the diet. She ate mostly cottage cheese and yogurt in the CCU. I told her to avoid red meat/sugar/vegetable oils, gmo foods (glyfosate-commercial grains and commercial meats), and to eat fish/hemp oil, fish, yogurt, veges, leafy greens, beans and her vitamin D3 intake was good. Doctors are crazy for not telling more people to do this. I figured it out by comparing covid death rates for Asian fish and vegetable diets vs. western diets. Western death rate is 2x higher so it was obvious that the diet was helping reduce lung inflammation by lowering cytokine resonse. Here's some good info from a dietician on it. https://www.precisionnutrition.com/...42120-AllContacts-OptimizeImmunityInfographic

 

[knackers323]

What effect has the diet had on your cfs symptoms @gbells

 

[Judee]

The problem is that many of us have been doing this for years. I have been eliminating any food that caused any problems for me until my diet is very sparse. We eat very plain and natural. We eat organic when we can.

It hasn't changed my ME/CFS. Yes, eating those things can make me worse but oddly enough avoiding them has not made me any better. It has only eliminated symptoms like sinus infections and some migraines--things like that.

I'm glad this worked for you though and some might get some relief especially if they have not tried to do so before this.

 

[knackers323]

@Judee yes unfortunately it won’t work for everyone, but id bet there would be more than a few on this site that it would make a significant difference for

the diet that works for me, won’t necessarily be exactly the same as the one that works for others.

I didn’t notice that food made me feel worse. I just felt terrible all the time.
So it may be possible that you are still eating something that is contributing to your cfs symptoms.

I think dairy and gluten are probably the two most common problems

Have you tried not eating these things for an extended period?

what do you eat?

 

[Judee]

We don't eat cow's milk dairy and have not for years. We did find at one point that we could add limited goat and sheep products back in without issues but still have to limit our consumption of those. That's been for about 12 years maybe. We stopped gluten about 4 years ago before I had to give up my job. It was a last ditch effort to try to be able to keep working but other than losing weight, I didn't get any better unfortunately.

I edited my post because the last line sounded so negative. Sorry about that.

We eat a lot of rice, chicken, some beef and pork (all without antibiotics). Some legumes. Some fruits and vegetables. Some herbs. That's pretty much about it. My mom has some of the other grains like gluten free oats and buckwheat but I don't like the flavors as much. We have corn allergy but do okay if we only consume it very occasionally but it has to be organic. Some nuts are okay. Eggs are a no-no so far, even the duck eggs, though we may try them again at some point. (Actually every food group just about has something we cannot eat.)

I still drink organic black coffee because when I eliminated it for six weeks a few years back, my memory problems got so much worse. Now I go into a room once or twice a day and wonder why I did but then it was like 10x per day so I had to add it back in.

I also drink Zevia cola because it does something for the ME/CFS. I wish it gave me energy but it doesn't. However, what it does help a bit with is allowing my mind to veto my body when it doesn't have the energy to do something essential like getting my mom to the doctor.

I will say that since I have been trying to get some of my suspected infection load down my food allergies for once seem to be improving but just in when I occassionally eat something like the corn, I don't seem to react at all to it.

That's the wonderful thing about elimination diets. I hardly ever have to blow my nose. It's completely clear almost all the time now but there are some things we haven't been able to eat in years. I miss pizza so much.

Edit: Yes, I do agree with you. If someone is not eliminating a lot of those trigger foods, they will only be adding to their misery. I think the same goes with chemicals like fragrance and cleaners.

 

[Hip]

It’s the FOODS I’ve been eating that have been causing the problems.

I eat mainly vegetables and fruit.
Small amounts of meat.

no dairy or wheat. I think gluten is the problem as I’ve now introduced gluten free bread and it seems to be ok.

I did not fully understand from your post what dietary changes you made. Are you saying you went gluten-free, and then got dramatically better?

If so, you might want to look into whether you have celiac disease rather than ME/CFS. There have been patients who were misdiagnosed with ME/CFS for decades, and only later realized it was celiac, and then got much better after removing gluten from their diet. Celiac is treated simply by stopping gluten.

Celiac disease is one the important diseases that ought to be tested for and ruled out biy your doctor before a diagnosis of ME/CFS is given.


Celiac disease is an autoimmune reaction triggered by gluten, and this reaction damages the small intestine causing nutrient malabsorption. Once you stop gluten, the damage starts to repair.

Note though that you do not have to have celiac in order to benefit from a gluten-free diet: gluten sensitive people without celiac disease will also feel better going gluten-free.

 

[Treeman]

@knackers323 could you communicate what you eat as part of your new diet and some typical daily meals? Thanks

 

[knackers323]

@Hip

yes I now feel much better after cutting out gluten, dairy and sticking as close as possible to eating only vegetables, fruit and small amounts of meat.

my meals are repetitive and difficult to stick to at the beginning but it doesn’t really bother me eating this way now.

Meals consist of
Red cabbage
Hommus
Onion
Cucumber
Celery
Sweet potato
Strawberry
Apple
Spinach
Watermelon
Banana
Cauliflower
Broccoli
Capsicum
Etc.
basically all vegetables and fruits

A few times per week fish, chicken, lamb

Recently added gluten free bread and going to try adding some non dairy based milks

About 85% of what I eat now is vegetables


After adhering to the diet for a few months I now occasionally eat something not on the list and I notice it’s negative effect on how I feel

 

[Hip]

yes I now feel much better after cutting out gluten, dairy and sticking as close as possible to eating only vegetables, fruit and small amounts of meat.

You might want to try a normal diet, but excluding only gluten. It's possible all the benefits you gained just arise from going gluten free.

 

[Alvin2]

Didn't help me.

 

[Wishful]

Judee's response fits me too: I've learned to avoid certain foods that can make my ME worse, but no diet has actually reduced my ME baseline.

 

[Tammy]

Dairy and gluten affect me as well. I will get more all over pain and inflammation. More heavy and sluggish. Brain fog.

 

[BrightCandle]

Intolerances to the common problem foods (lactate, gluten, soya) seem really common in cfs patients. Avoiding them seems to help with some of gi issues that people have but it doesn't usually do much for the rest of me/cfs that I have seen so far. A fodmap diet is a good place to start on eliminating a lot of problems and then once stabilised you can add from there but its mostly about comfort and bloating usually and not a lot else. I seem to have become lactose intolerant alongside gluten and soya since me/cfs started and cabbage is a big problem. But eliminating them just helped with the bloating and pain not the constipation or anything else me/cfs.

 

[gbells]

What effect has the diet had on your cfs symptoms @gbells

Well for the conditions I have I'm in decent health. The regimen I'm following weakens DNA repair so if I had a careless diet I could get cancer. But I never got any improvement with the ME related to diet and I don't think any diet can do that because ME isn't due to anything diet related.

Diet has helped me a lot to lessen depression by eating proteins with carbs and my energy recovery is a bit faster (15%) by having healthy gut bacteria and eating enough leafy greens and vegetables (generating butyrate and Vit K2). Low inflammation diet is also important for covid-19 because it lessens covid severity by buffering some inflammation. This is why asian countries who eat fish and vegetable diets (S. Koria, Japan, Thailand) have half the death rate vs western countries.

The reason why I don't think diet helps ME is because many people have chronic viruses which disabled ATP (energy) generation in the Citric Acid cycle (mitochrondria). Food doesn't fix this but supplements (nicotinamide riboside and d-ribose together) can palliate boosting energy by about 50% by recycling ATP and NAD. Dr. Tietelbaum deserves credit for the d-ribose discovery and various other ME patients (myself included) have tested the nicotinamide riboside. That is what I recommend for palliative energy boosting.

 

[gregh286]

Good stuff @knackers323
I can change my severity too also with diet.
In a nutshell the more alkaline and pure the diet the better.
I don't take gluten either.
Good to hear about your positive progress

 

[vision blue]

For some people, they indeed react very badly to gluten and it's cousin, some proteins in dairy. And for those, it can have devestating effects to health, even if one does not officially have celiac. Super glad it (avoidance) is working for you!

Please don't infer that this was everyone's route to CFS. I doubt it is even in the top 5.

 

[gregh286]

For some people, they indeed react very badly to gluten and it's cousin, some proteins in dairy. And for those, it can have devestating effects to health, even if one does not officially have celiac. Super glad it (avoidance) is working for you!

Please don't infer that this was everyone's route to CFS. I doubt it is even in the top 5.

For slow non viral onsetters like me and likely knackers might be a big enough group.

 

[YippeeKi YOW !!]

Yes, eating those things can make me worse but oddly enough avoiding them has not made me any better. It has only eliminated symptoms like sinus infections and some migraines--things like that

Judee's response fits me too: I've learned to avoid certain foods that can make my ME worse, but no diet has actually reduced my ME baseline.

A fodmap diet is a good place to start on eliminating a lot of problems and then once stabilised you can add from there but its mostly about comfort and bloating usually and not a lot else.

I'm with all the above.

For a while, when I was at my worst, my diet was abysmal. Not just because of my condition and inability to market, cook, etc, but because I'd suddenly developed so many reactions to multiple foods that I'd tolerated well before, that there was just about nothing left that I could eat without endless issues.

The way back for me started with, as @gbells noted, dietary supplementation, carefully researched and tagged to the most intolerable symptoms at that time.

Since then. my diet has improved, and while I'm miles better then when I was suicidally struggling thru The Troubles, food has not been a significant ME game-changer. Neither have supps so far, tho they've done far more than anything else I've tried.

In fairness, both have helped and I;m grateful to be out of the darkest part of this nightmare.

But what constitutes a perfect diet for Subject A could well be toxic to the point of actively poisonous for Subject B, so each of us is left, yet again, with the conundrum of finding what works for us.

And yes, a better diet is a definite positive, particularly if you can isolate foods that cause or aggravate inflammation.

@knackers323 .... if it sured your ME, tho, it might be worth a trial of @Hip's suggestion to give a shot to trying a totally gluten-free det, on the possibility that what you;r dealing with is celiac disease/gluten intolerance

This is sucg a pissy little crappy little vicious little bummer of an illness, with part of its .... charm .... being the number of hoops we have to jump thru, voer and over again, in multiple different arenas, in an effort to find some relief, if not the Holy Grail of complete remission.

We are not amused ...

But .... tis the season to be jolly.

Bah, humbug .....

 

[YippeeKi YOW !!]

Here's some good info from a dietician on it. https://www.precisionnutrition.com/...42120-AllContacts-OptimizeImmunityInfographic

Neat link, and brief and informative. Good reminder. Thanks for posting this for us ....

Recently it really helped my obese diebetic mother who is in CCU with covid-19 at day 12.

I had no idea you were going thru the dual hells of dealing with COVID, and worse, dealing with severe COVID in your mother.

I'm relieved that the current news is so much more positive, and sending you and you mom a boat load of ....

many people have chronic viruses which disabled ATP (energy) generation in the Citric Acid cycle (mitochrondria). Food doesn't fix this but supplements (nicotinamide riboside and d-ribose together) can palliate boosting energy by about 50% by recycling ATP and NAD.

The Krebs Cycle is murderously complex ad hard to decipher effectively, yielding different results for different people. I tdefinitely agree with you that supps are probably the best, maybe the only, way to go, and would be inclined to trial them one at a time, building on them gradually .... you know, for the usual reasons ....