• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Diet and improvement

knackers323

Senior Member
Messages
1,625
I have heard of some people saying diet makes a big difference to how they feel. I have even heard some say that diet has cured them.

The diets are usually paleo based. No dairy, sugar, grains, preservatives or addatives and little if any fruit.

Basically it's meat and vegetables. Raw veggies are usually preferred.

Just wondering if anyone has tried this, if so how long does it take to see improvement and do the benefits compound the longer you stick to it?

I ask as I have done this diet fairly strictly and felt immediate improvement. So much so that after only two weeks I thought if it continued at that rate I would be cured soon.

However as usual it so far has not continued in this fashion.

Anyone have any experience ?
 
Messages
18
Location
NYC suburbs - Bergen co
I started Paleo two months ago and I see significant improvement too. I tried just gluten free and low sugar before and it is significantly better. They recomend doing strict paleo for 30 days to see improvement, and then you can relax it a little bit.
I follow the guidelines from the "Practical paleo" book, great book has both the why and how and also applications for various medical conditions. I eat a lot of eggs and meat, cooked vegetables, no grains or sugars, no dairy except butter and heavy crem for cofee :)
I have much more energy on this, the headaches and dizziness are gone, anxiety is gone (that could be from the L-glutamine I'm taking). I still have the muscle ache... but I'm not srict on the food recomendations (I do eat at a cafeteria or eat out and you can't control everything this way)

From my research Paleo is the go to diet if you have any digestive issues and would fit great with the leaky gut/ gut inflamation theories behind CFS.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
i think they can helps with more stable blood sugar which helps with energy. Those who have been cured by diet probably had gluten intolerance which paleo and low carb diets are usually low in or maybe some other type of food allergy. So probably didnt have cfs/me but some type of food intolerance??
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
The benefits for me are almost inmediate and not spectacular at all. No gluten, no dairy makes me wake up every night one or two times (usually two). While eating it I can wake up from 3 to 6 times per night. I do not feel much better but is obvious gluten and dairy make my body function worse. Paleo is the diet for us, but watch out for weight loss... it also needs more effort in cooking and buying and it bores the hell out of me.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
It took a year of being gf before my ataxia vanished so I cringe when I hear people
saying they didn't stick with it. Dr Hadjivassilou who discovered gluten ataxia tells his patients it will take one year minimum for their damage to heal.
I've met others who say theirs vanished in
3 months but I trust this doctor's experience.

My biggest improvements have been from avoiding gluten, dairy, corn, soy and chemicals. I have unique reactions to each. As in dairy gives me shiners but I can't feel or see anything else. Soy milk causes phlegm in my throat within minutes. etc etc.

I found that I don't have the inflammation
on the paleo diet that I do if I eat non paleo.

btw paleo is the same as hunter gatherer and caveman. Dr Cordain explains this.

tc ... x
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Corn and soy are gut destroyers too. The problem with me and many others is food addiction. I seem to be addicted to bread and dairy. All my life I stuffed myself with white bread, pasteurized milk. Now I love spelt or rye bread and organic goat soft cheese, I try to lie to myself eating these when I am some months into paleo, that´s when the addiction really kicks in. But we have to stay strong. It is our fate to have "autistic" guts and eating these things is not worth it in the long term.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
It's really hard to fight the addiction when
we're surrounded by advertisement and restaurants serving these foods. I found myself buying udi's gf pizza several times in a row because of all the pizza commercials on tv.

And we've got all those memories of
how good they taste. Creating new habits
isn't easy.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Oh yeah, just yesterday in the middle of the night with gut pains from poppy seeds I had a strange and intense flashback of how crispy roasted pizzas on an Italian restaurant taste like. I could feel the flavour in my mouth. We lost so much with this disease, but life is still worth living, all in all.
 

knackers323

Senior Member
Messages
1,625
When you guys eat like this. How long before the cravings kick in?
I'm going through this now. I tend to do really well for about three weeks and then have a few days where I just gorge on all things I'm trying to avoid.

This happen to you too?

I've heard people say these cravings are things like candida or parasites/bacteria and we need to fight through them to kill it off.

Or is it just a natural craving/desire to eat nice things?

Is there any definitive test or way to test for candida overgrowth?

Also does anyone ever get any negative "herx" like effects from following a diet like this?

Thanks
 
Last edited:

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
I am quite positive is candida IF you have an strange, compulsive urge for sweets. And I am talking about fruit too. I cannot go without fruit more than a few days.

I had these binge-crysis at the start, one year ago. If you persevere they will go away. Usually my binges occurred at night, because insomnia makes me need gratification/distraction. I don´t think the binges happen just because of the pathogens, is also because of a lifetime of eating things that make us feel better.

Yeah there are scientific tests for intestinal pathogens. But is easier to look at your symptoms. A coated tongue is a good indicator, as so is skin problems, addicted to carbs, dandruff, smelly feet (the list is endless).
 

knackers323

Senior Member
Messages
1,625
I am quite positive is candida IF you have an strange, compulsive urge for sweets. And I am talking about fruit too. I cannot go without fruit more than a few days.

I had these binge-crysis at the start, one year ago. If you persevere they will go away. Usually my binges occurred at night, because insomnia makes me need gratification/distraction. I don´t think the binges happen just because of the pathogens, is also because of a lifetime of eating things that make us feel better.

Yeah there are scientific tests for intestinal pathogens. But is easier to look at your symptoms. A coated tongue is a good indicator, as so is skin problems, addicted to carbs, dandruff, smelly feet (the list is endless).

Hi Beyond thanks for your reply.

How long into the diet did your cravings begin and disappear?

I don't really crave sweets so much. sometimes it could be but its more things like bread or a packet of chips or something like that, just things I'm trying to avoid that I see everyone else eating. But unless you are eating only plain meat and vegetables you are eating lots of sugar. It is in absolutely everything.

What would bad skin (excema), dandruff and smelly feet indicate? I have had all three my whole life. Thanks
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
They mean...candida! Dandruff and eczema are the same by the way. And I was addicted all my life to bread and all the "nice" things. Still am. And to chips. Just two weeks ago I was eating Spelt Bread trying to fool myself. But gluten is a nono for leaky gut, period. And I eat chips when I visit my grandma. Is my reward for going there lol!

I know what you mean, I also THOUGHT I wasn´t addicted to sweets. But then I tried skipping fruit for some days. I went bonkers and ending eating like an addicted.

The cravings never dissapear completely because of a lifetime eating shit and also a society that encourages eating these things, but when you are say half a year in the diet and you have read about what gluten, casein and stuff do to an inflammed gut then you are motivated and can go on. And even with a semi-paleo diet there are still nice things to eat. I never was able to do full paleo.

Look, I haven´t felt much improvement from this healthy dieting. But is the foundation of any other protocol. Diet does not cure candida and certainty does not cure CFS. One thing that happened is that since doing this diet the eczema in the sides of my nose has been smaller, almost no itchy, and normally has not flakes. If I eat honey for example I wake up with lots of "dandruff" in the nose.
 
Last edited:
Messages
15,786
I don't really crave sweets so much. sometimes it could be but its more things like bread or a packet of chips or something like that, just things I'm trying to avoid that I see everyone else eating. But unless you are eating only plain meat and vegetables you are eating lots of sugar. It is in absolutely everything.
Another possibility is that you're craving food because you can't burn fat. A couple small studies have shown that after exertion ME/CFS patients have up-regulation of a gene which suppresses lipolysis. In healthy people, fat can be burned between meals, and the lack of that happening might trigger the hunger. It would be especially bad overnight, when going 12 or so hours without eating.
 

maddietod

Senior Member
Messages
2,856
The diets are usually paleo based. No dairy, sugar, grains, preservatives or addatives and little if any fruit.

Basically it's meat and vegetables. Raw veggies are usually preferred.

Paleo doesn't restrict fruit, and doesn't prefer raw. I've been eating a paleo diet that emphasizes micro-nutrients (Wahls) and have been eating more fruit than before.

It's too early to talk about benefits, but I haven't had any cravings.
 

knackers323

Senior Member
Messages
1,625
They mean...candida! Dandruff and eczema are the same by the way. And I was addicted all my life to bread and all the "nice" things. Still am. And to chips. Just two weeks ago I was eating Spelt Bread trying to fool myself. But gluten is a nono for leaky gut, period. And I eat chips when I visit my grandma. Is my reward for going there lol!

I know what you mean, I also THOUGHT I wasn´t addicted to sweets. But then I tried skipping fruit for some days. I went bonkers and ending eating like an addicted.

The cravings never dissapear completely because of a lifetime eating shit and also a society that encourages eating these things, but when you are say half a year in the diet and you have read about what gluten, casein and stuff do to an inflammed gut then you are motivated and can go on. And even with a semi-paleo diet there are still nice things to eat. I never was able to do full paleo.

Look, I haven´t felt much improvement from this healthy dieting. But is the foundation of any other protocol. Diet does not cure candida and certainty does not cure CFS. One thing that happened is that since doing this diet the eczema in the sides of my nose has been smaller, almost no itchy, and normally has not flakes. If I eat honey for example I wake up with lots of "dandruff" in the nose.

Is the smelly feet and eczema a sure sign I have a candida problem? They cannot be caused by anything else?

I have had tests for candida and was told it wasn't a problem
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
They could be caused by something else... maybe, but my research of years points to candida/yeast. In whatever case, at least the skin disorder is 100% caused by imbalances in gut flora and/or leaky gut.
 
Messages
2,562
Location
US
I haven't noticed much benefit yet. I have been off gluten 3 months but have only been off dairy and corn for 1 month. I have been off peanuts and soy for longer.

I know dairy, peanuts, and soy give me a reaction in well under an hour, and corn most likely too, so that part has disappeared, but honestly the reactions felt worth it. (How much I enjoyed eating them meant I was okay with feeling a little worse for minutes or hours.)

Why I am eliminating them is in hopes of having greater benefit after a while.

I have also cut down on nightshades for years but should try to go without for longer than I have.

I am trying to follow Dr. Wahl's version, which is sort of like Paleo plus more fruit and making sure you get variety of vegetables. I am wondering if I'm having some bad reaction to increased oxalates because of adding more vegetables.

I do eat some gluten-free grains but only 1-2 ounces most days with the occasional extra cup. A lot of gluten-free people are still eating cups of grains every day.

I am not 100% but I will rarely have preservatives and food coloring, and I avoid the common worst sweeteners (agave, date sugar, sugar, corn syrup).

One important point is, we are not just eliminating foods (being left with meat, fruit, and vegetables) but we are adding nutritious foods like seaweed, algae, fermented vegetables, wild caught fish and shellfish, flax or fish oil, pastured eggs, and grass fed meat.

Edited to add: Also be wary of rice. It is gluten free in nature but many brands add gluten to it (and I don't believe they have to label it that way, so you have to check more carefully).

Also many people develop bad reactions to some or all grains, even the non gluten ones. If they avoid that grain for a while, they may stop having the bad reaction. However, grains likely having mold contamination issues is one reason to avoid them as much as possible.
 

Daffodil

Senior Member
Messages
5,873
i heard eggs aren't too good for autoimmune conditions....in my food tolerance testing, it says i cannot have eggs.