• 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 register, simply click the Register button at the top right.

Substantial improvement with (strange) dietary adjustments

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I suppose you could test that by taking the chemicals (nitrates or whatever) sublingually, bypassing the microbiome.

I did this with nitrates.

(1) Nitrate containing foods in combination with protein and fat (spinach lasagna): Massive symptoms for 3 days.
(2) Slow-release nitrate pill Isosorbide Dinitrate (normally used to lower blood pressure): Massive symptoms for 3 days.
(3) Nitroglycerin spray (sprayed into the mouth): NO symptoms (other than headaches as known side effect of the drug).

Something is definitely happening in the gut.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
Experimenting with food is fun isn't it. I have recently added Glutamate and Choline to the list of aminos that are giving me neurological symptoms (Depression, Anger, Cognitive delays). High vitamin C or anything sweet after dinner is sureshot insomnia.

Recently added small amounts of fructose fruit back after avoiding it for many years. Too soon to start a victory parade with a new thread, but fructose is seeming to help with my hypoglycemia symptoms.

To a Happy and Healthy 2023!


Hi Exploit, a Happy New Year to you (and anyone also) if it's not too late :)

Is that choline from supplements or also from foods (legumes, cauliflower, eggs, oyster mushrooms etc.)? A problem with this is that choline is an essential nutrient. You can't cut it out completely. I have the same problem with fat. I would want to leave it out completely, but linoleic acid and alpha linolenic acid are essential and must be consumed regularly. I'm trying to do this with tahin, peanut butter and greens.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I tested two things last week.

(1) Green tea with erythritol as a sweetener. It did not work. I deteriorated for 2 days. I am now avoiding all caffeine, also cocoa.

(2) Peanut butter on wholegrain bread with a bit of erythritol (I would use honey or hacked dates, but can't because of the fructose). That worked reasonably well. BUT: When I ate just a handful of wild rose hips with it, it caused symptoms the same day and evening/night. That's supposedly because all baddies were present. Monounsaturated fat and some lysine from the peanuts (lysine is actually not too high), some sugar and acid from the rose hips.

Even minor amounts of fruit can turn a meal containing lysine and fat that may be tolerated into one that cannot be tolerated.
 

xploit316

Senior Member
Messages
142
Hi Exploit, a Happy New Year to you (and anyone also) if it's not too late :)

Is that choline from supplements or also from foods (legumes, cauliflower, eggs, oyster mushrooms etc.)? A problem with this is that choline is an essential nutrient. You can't cut it out completely. I have the same problem with fat. I would want to leave it out completely, but linoleic acid and alpha linolenic acid are essential and must be consumed regularly. I'm trying to do this with tahin, peanut butter and greens.

@Wonkmonk Yes Choline from any food gives me severe bloating and cognitive issues. Not sure if its my liver since Choline is a methylating agent. That aside, I have narrowed down my issues to Fiber, excess fluids (Even Cant do pressure cooked meals anymore, gives me histamine type issues), sex (cognitive issues) and sugar (crashes my adrenals). 2 things that seem to help recently with cognitive issues are Manganese and fructose, but too soon to claim victory since the effects for us dont last very long.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
excess fluids (Even Cant do pressure cooked meals anymore, gives me histamine type issues)

It may be the case that pressure cooking liberates compounds that are harmful to you from the foods you cook and those then get better absorbed or absorbed more quickly in higher quantities. In a pressure cooker, it's not just the air that gets compressed. The foods and the water get, too. That's why lots of foods turn to mush in a pressure cooker.

That's generally seen as a positive of pressure cooking for nutrition as nutrients become more bioavailable. But maybe it's exactly the wrong thing for you. Wondering if it could make a difference which foods are pressure cooked or if it concerns all pressure cooked foods.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I think I now have an idea why kale isn't good in a no-fat spaghetti meal, but spinch is better. If I eat kale spaghetti a few times in a row, symptoms are worsening.

I think that's because of the calcium. 100g of kale can contain over 200mg of calcium with high bioavailability whereas spinach only contains 100-150mg and, more importantly, with very poor bioavailability (oxalates!).

By my calculatons my fat-free kale spaghetti (200g of wholegrain spaghetti, 200g of kale, a few tbsp tomato puree, garlic, pinch of ground mustard seeds separately for glucosinolates) together with the cooking water and some water for drinking can come close to 700mg of calcium in a single meal (~750 calories).

I cook the spaghetti relatively long so most phytates may be destroyed and several absorption enhancers are present (organosulfur compounds from garlic and kale/mustard, fructose and acid in the tomato puree).

So that's a biiiiig load of highly bioavailable calcium and I think that's the problem.

This again illustrates a huge problem with finding out what's allowed and what is not: One mistake can ruin all the progress. If one factor is off, the entire meal feels as if it cannot be tolerated.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
For comparison, 700mg of calcium is in about 20 ounces of milk (600ml) and the bioavailability in kale is similar to milk. You can really get big loads of calcium with kale.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
Just seen this recent video of Mikhaila Peterson who has been on an all-beef and -lamb diet for 5 years now and greatly improved. She says she can now tolerate some honey.


She doesn't have CFS/ME, but other unknown conditions, but I find it so interesting that she also improved so much with a very strange dietary approach.

Of course, my approach (vegan, high carb, very low fat) is the diametral opposite of hers, so I'm not endorsing or promoting her apprach in any way. But it seems 100% right for her though.

I just find the parallel so interesting that someone can improve from a debilitating condition by making weird dietary adjustments that no one would think are connected to the illness.
 

Wayne

Senior Member
Messages
4,267
Location
Ashland, Oregon
I just find the parallel so interesting that someone can improve from a debilitating condition by making weird dietary adjustments that no one would think are connected to the illness.

I once read a testimonial by a man who tried literally every kind of diet conceivable to try to improve his CFS. He (of course) at one point tried an all raw diet, and eschewed cooked foods entirely. To his bewilderment, his condition slowly worsened.

He then went the opposite direction (based on Chinese yin/yang principles), and ate only cooked foods, eschewing raw foods entirely. To his utter amazement, he completely recovered his health. I suspect this would almost sound like heresy for some of the people who do well on all raw food diets.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I suspect this would almost sound like heresy for some of the people who do well on all raw food diets.

It would, but I think that's the thing...for some people who improve with diet, their approach defies conventional wisdom.

Just seen this recent video of Mikhaila Peterson...

Love the last segment where she details how long it took her to find out what she had to do and how she did not improve that much until she got everything right. Same here...if I make just one mistake, just one wrong food maybe once a day or even every 2 or 3 days, there is no or only very liffle improvement. Everything has to be right, and I think I haven't even figured out what "everything" is so I am probably still making mistakes without knowing it. Maybe that's why I am not improving as much as I would want to.

Could I go into complete remission if I continue to learn and refine the diet? I think it's not impossible given how much I improved with what I figured out so far. But it's definitely still a very long way to go. I don't think a complete remission is realistic any time soon. My (very ambitious) goal is to be able to live in my own apartment again (move out of my mom's house) and maybe do some part time work. That would be amazing.
 

xploit316

Senior Member
Messages
142
I have noticed Grilled, Roasted, pressure cooked/steamed Chicken gives me issues (mainly Histamine, Bloating, brain fog) but deep fried chicken a little bloating and nothing else. Same with vegetables deep fried potato chips, cauliflower no issues but eating them boiled, pressure cooked or roasted same issues as above. How is it that the apparently "worst" form of cooking method gives me no problems.
 
Messages
33
I think I now have an idea why kale isn't good in a no-fat spaghetti meal, but spinch is better. If I eat kale spaghetti a few times in a row, symptoms are worsening.

I think that's because of the calcium. 100g of kale can contain over 200mg of calcium with high bioavailability whereas spinach only contains 100-150mg and, more importantly, with very poor bioavailability (oxalates!).

By my calculatons my fat-free kale spaghetti (200g of wholegrain spaghetti, 200g of kale, a few tbsp tomato puree, garlic, pinch of ground mustard seeds separately for glucosinolates) together with the cooking water and some water for drinking can come close to 700mg of calcium in a single meal (~750 calories).

I cook the spaghetti relatively long so most phytates may be destroyed and several absorption enhancers are present (organosulfur compounds from garlic and kale/mustard, fructose and acid in the tomato puree).

So that's a biiiiig load of highly bioavailable calcium and I think that's the problem.

This again illustrates a huge problem with finding out what's allowed and what is not: One mistake can ruin all the progress. If one factor is off, the entire meal feels as if it cannot be tolerated.
What sorts of symptoms do you get from eating too much calcium? I'm asking because I have an issue with calcium too. If I eat more than 400-500mg per day (roughly) then I get an onset of negative symptoms like constipation, waking up really early in the morning feeling overstimulated and dehydrated, cognitive difficulties, etc. I also get debilitating symptoms within a few days if I don't eat enough calcium. I'm also interested if you have issues with vitamin d?
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
What sorts of symptoms do you get from eating too much calcium? I'm asking because I have an issue with calcium too. If I eat more than 400-500mg per day (roughly) then I get an onset of negative symptoms like constipation, waking up really early in the morning feeling overstimulated and dehydrated, cognitive difficulties, etc. I also get debilitating symptoms within a few days if I don't eat enough calcium. I'm also interested if you have issues with vitamin d?

Hi Aidan, that's so interesting, thanks for sharing your experiences. I also get symptoms both ways, i.e., too low calcium intake and too high intake. My sweet spot appears to be in the neighborhood for 800-900mg a day, and I mean total calcium intake from all sources including all foods, drinking water etc.

My main symptoms are:
*Muscle weakness
*Heart palpitations
*Dry and red eyes
*Brain fog and inability to concentrate
*Disturbed sleep including waking up too early
*Restlessness/general feeling of uneasiness
*Upset stomach (mild and not really sure about this, but definitely not constipation)

The symptoms are generally similar if I don't have enough calcium though red and dry eyes are usually absent and heart palpitations are stronger.

I am not sure yet if vitamin D really causes symptoms and if so, if they are caused by the vitamin or just by the higher calcium absorption. This summer, I had the impression that I can tolerate vitamin D from the sun much better than supplements. I tend to feel bad after high-dose supplements (20,000 iE capsule), but can't really say what the symptoms are. I think I get an upset stomach, so I think it may be connected to the oral route of administration. I can sunbathe which creates 10,000+ iE without having stomach problems, so I think the oral administration is a problem.

I am looking forward to hearing your thoughts. Please continue to share your ideas and experiences!
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
How is it that the apparently "worst" form of cooking method gives me no problems.

Maybe you are sensitive to a compound that degrades at temperatures above 120C/250F. Those would only be achieved by deep frying. Not sure if histamine and related compounds are heat sensitive though. But it might be something else...
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I think the oxalates in spinach could be a problem. I ate a lot of spinach in the past weeks because the bioavailability of the calcium is lower and I thought I am going over the limit. But maybe the oxalates aren't so good either. Will cut back and see if it helps.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
I have the hypothesis that oxalates are either harmful on their own or exacerbate the negative effects of too much calcium. @Aidan

Depending on the source, oxalate contents of foods appear to vary a lot. Like carrots are ranging from less than 50mg for half a cup cooked vs. 500mg for 100g fresh. Preparation methods also seem to matter, though I can't imagine it makes that much of a difference for carrots.

https://oxalate.org/

https://en.wikipedia.org/wiki/Oxalate#Occurrence_in_nature

I suspect that the main culprit in my case is spinach. I don't really eat much of the other high-oxalate foods. I'll cut out spinach from my diet for a while and see what happens. Normally, oxalate absorption can be greatly reduced by adding high-calcium foods to the meal, but this is obviously not an option.

I might have to re-check other foods again that were previously ruled out as they might be less of a problem if the diet isn't high in oxalates. There appear to be interaction effects between the foods, some only harmful if consumed either together in the same meal or when the diet in general includes certain other foods.

It's very complicated.
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
Huh?

1674582762594.png
 

Wonkmonk

Senior Member
Messages
1,003
Location
Germany
After eaing a pound of cooked spinach pasta (ingredients: spinach, wholegrain spaghetti, vegan butter, almond milk, grapeseed oil, garlic, salt), I am still having symptoms almost a week later,

I now think tjos os necaise of the oxalates. Oxalates accumulate in the body and take relatively long to flush out again so it's possible that symptoms last a week or longer. Normally, the flare up in symptoms from had foods lasts only a few days. But oxalates seem to have a longer lasting effect, which makes sense.

I think I now have an idea why kale isn't good in a no-fat spaghetti meal, but spinch is better. If I eat kale spaghetti a few times in a row, symptoms are worsening.

I think that's because of the calcium. 100g of kale can contain over 200mg of calcium with high bioavailability whereas spinach only contains 100-150mg and, more importantly, with very poor bioavailability (oxalates!).

This is probably for the first few meals only until the oxalates have accumulated in the body. Spinach is probably worse. Will try to cut out spinach and try kale only and see how much of it I can eat. So far it looks like I can eat kale spaghetti occasionally.