Substantial improvement with (strange) dietary adjustments

[Dysfunkion]

So that would also point to the problem being in the microbiome, right?


I had that idea as well and I also found keeping everthing refrigerated (or even frozen) until right before mixing/cooking also helps. In theory, that should slow fermentation further. Apart from that, I cook everthing fresh and try not to let anything sit on the kitchen counter or even in the fridge. Even when something is placed in the fridge, it takes many hours until it actually reaches refrigeration temperatures and even when it has reached them, that doesn't seem to be enough because overnight ferment of bread dough in the fridge causes very bad symptoms when the bread is eaten. So whatever is produced is produced even at low temps.

Freezing seems to be a safe method though. No food has so far felt worse after I froze it (even long periods at -20 C. That also suggests whatever happens is a bacterial reaction and not some sort of chemical reaction that would also occur in the absence of bacterial activity over time.


I have thought about bowel passage time as well, but found no reliable way to speed it up except metoclopramide which has too many side effects and shouldn't be taken long term. Any tips for natural remedies would be highly appreciated. Faster passage, less fermentation.


I have noticed that for many foods, symptom flares last 3-4 days, which is about the time until they leave the body plus maybe some additional time for the harmful compounds to be degraded or flushed out of the system after the last parts have been absorbed.


Excellent idea. This would be sort of an elimination diet. I tried it, but the problem was, for that approach to work, one has to find one or two foods that cause no symptoms and the add additional ones to see what happens. That's my problem, so far I cannot find anything that causes no symptoms. Just less symptoms. I am never symptom free.

Even the famous potato-rice diet, which brings me to this:

Rice is really a mystery. In theory, it should be excellent for me, because it is low protein, low choline, low fat, no fructose, but it seems to consistently cause symptoms. I suspect arsenic as the cause. Basmati seems to be better and that would make sense because it has less arsenic. Maybe arsenic harms the bacteria and causes sort of a Herxheimer reaction. Some heavy metals are known to have antibacterial activity.


When I first read about your experience with turmeric, I also thought about a Herxheimer reaction because turmeric is also known to be anti-microbial. One could try other ginger-family spices to see if maybe the same happens and if so, avoid the entire group (also includes cardamom).


I had this idea from Jordan Peterson:

I don't eat many sulfites as well and I tried various types of vinegars and never found them to make me much worse. I just wanted to point out that the theory is out there.

I have no idea how to quote in parts so I'll just divide this up myself in the most simple way possible.

I already do that, if I make food I make it right then and there. Sometimes I may put the rice in the pot beforehand but that's dry and room temp all the time sealed up anyways. I could try freezing absolutely everything beforehand and see what happens (or what doesn't for that matter).

I thuis far haven't found anything that doesn't seem to do anything at all, I joke that food s are like drugs to me. I always had this issue all through my life, if I ate lot of food at once I could feel almost like I was drunk. It may be that my immune system was always primed to react to something going on in the microbiome with a very common bacteria that can't be eliminated. It could also be that what is produced I have a genetic vulnerability to not processing well and as I aged this got worse causing more extreme reactions to common items.

It might be the arsenic in this rice I'm not reacting to as I react best to it. I know from my accidental enriched pasta experience that the enriched component appears to behave differently depending on what the enriched food was. I initially thought with normal enriched rice this was the problem but upon eating a large amount of only plain enriched pasta the result wasn't even remotely the same. Jasmine rice has less of this problem and basmati even less than that. I'll see soon here in the coming days when I really put this rice to the test in different ways what might be going on. I clearly react more when I add just about anything to it which isn't surprising even if it's plain veggies but the keeping everything as dry as possible cooked and then eating them together might get interesting.

 

[Wonkmonk]

I have no idea how to quote in parts

You can just mark the text and then click reply.

 

[Wonkmonk]

I could try freezing absolutely everything beforehand and see what happens (or what doesn't for that matter).

Could be worthwhile, but I don't think it's necessary for rice because it gets to >60 C very quickly when bacteria start to die.

Jasmine rice has less of this problem and basmati even less than that.

Also worth keeping in mind that arsenic levels can vary substantially across different brands and origins. I think in the United States, rice from Arkansas has a lot more than rice from California.

https://nutritionfacts.org/blog/which-brands-and-sources-of-rice-have-the-least-arsenic/

Also some countries are worse than others, e.g., parts of India or Bangladesh are heavily polluted while rice from Italy (e.g. Arborio) is said to have lower arsenic levels.

I found that I react to the organic store brand of a low-cost supermarket (Aldi) MUCH more than to a branded non-organic rice from the same supermarket. Country of origin is not given for both brands, but the difference in reaction is huge.

 

[xploit316]

Rice is really a mystery. In theory, it should be excellent for me, because it is low protein, low choline, low fat, no fructose, but it seems to consistently cause symptoms. I suspect arsenic as the cause. Basmati seems to be better and that would make sense because it has less arsenic. Maybe arsenic harms the bacteria and causes sort of a Herxheimer reaction. Some heavy metals are known to have antibacterial activity.

Have you tried Parboiled rice? I have tried basically all types of Rice - Basmati white(Long/medium/short grain), Jasmine, Brown, Red, Wild rice, Egyptian Calrose you name it, but every time I ate I got symptoms from each. Different Cooking and cooling/reheating methods also didn't help. Parboiled rice (Thai version only with no fortification) is the only type that gives me no issues with any quantity. I cant do Indian (maybe arsenic) neither the fortified US parboiled rice variety.

 

[Wonkmonk]

Have you tried Parboiled rice? I have tried basically all types of Rice - Basmati white(Long/medium/short grain), Jasmine, Brown, Red, Wild rice, Egyptian Calrose you name it, but every time I ate I got symptoms from each. Different Cooking and cooling/reheating methods also didn't help. Parboiled rice (Thai version only with no fortification) is the only type that gives me no issues with any quantity.

Interesting that you made similar experiences. Yes, the brands I reacted most strongly to were all parboiled rice.

I can do without rice easily, but it's so strange because I have no explanation for it. On paper it should be one of the best foods for me, but it appears to be one of the worst.

 

[Wishful]

So that would also point to the problem being in the microbiome, right?

It certainly seems likely that the microbiome was involved with the intolerance. That intolerance made my ME symptoms worse, but the baseline symptoms remain, so my ME doesn't seem to be due to microbiome problems. I think it likely that many PWME are suffering from worse symptoms than necessary due to microbiome issues.

Rice is really a mystery. In theory, it should be excellent for me, because it is low protein, low choline, low fat, no fructose, but it seems to consistently cause symptoms.

It's not that simple. My recent intolerance was to something in plant embryos. Hormone? Enzyme? Something else? Whatever it was was in white flour (most? of the embryo removed) and rice noodles and a bunch of other things you wouldn't think of embryo chemicals to be in. It must have only been trace amounts that caused my symptoms, so at that level, foods have a much wider range of potential triggers. The triggers might even be such things as herbicides and pesticides, or in organic produce it could be chemicals left by pests or pesticides produced by the plants. It might take a lot more detective work to figure out what your triggering foods have in common.

When I first read about your experience with turmeric

I'm another with intolerance to turmeric, ginger, and probably others in that family. I don't even have guesses about the mechanism involved. I will have to retest them after my recent change in microbiome. I'm retesting coffee right now. Was it a chemical in coffee and chocolate, or just the embryo chemicals?

 

[Wishful]

Yes, the brands I reacted most strongly to were all parboiled rice.

I retested dormant leaf buds (supposed to contain abscisic acid), but this time I roasted them first, because it occurred to me that chemical reactions occur when plant parts change moisture or heat/light levels, or are crushed (garlic), or other factors. I still didn't respond, but aren't completely sure that the roasting/soaking didn't cause whatever reaction removes abscisic acid. FWIW, balsam poplar buds taste unpleasant, though not horrible. The resin gives a burning sensation. The things I do for science ...

Parboiling could cause some plant cells to do some chemical reactions. Have you tried simply grinding some rice and swallowing that without cooking, just to compare the symptoms that result? Of course, grinding and wetting with saliva might cause a chemical reaction too.

 

[Dysfunkion]

Ate the plain basmati boiled rice a couple hours ago, this is very interesting. With the rice alone literally nothing else on it I do get a reaction at almost any amount consumed so there really doesn't seem to be anything I can consume that doesn't generate a reaction. As I was eating it I'd feel the same flu like feeling bubble up but this would simmer down easier without anything added to it and no matter how much I would eat anyways it wouldn't hit the same peak as with anything else in the rice. I get very stimulated in a strange way in the background though despite the fatigue strangely and I get a lot more flushy in the face when getting any stimulation at all after consuming the rice. Any of the theories so far can be true with this one. The reaction isn't general carb specific. I know for a fact having consumed a large bowl of corn before this doesn't happen with that in fact even a large bowl of popcorn butter and all didn't do this over last weekend. This isn't the same reaction as the plate of enriched plain pasta and isn't triggered by bread either. Adding salt to the food doesn't seem to do anything to influence it. But as I was typing this I was getting my breakfast for tomorrow morning ready and ate some of the peanut butter on it's own and the cinnamon. Normally this would do nothing to me if I had a little snack as I was making it like I do every time but on top of the rice consumed before this kindles the reaction and perpetuates it! So now I have a feeling adding anything to the rice will make this worse but we'll see if the more dry the better soon.

So I think someone's theory that bad bugs are getting something from it and then using nutrients from other food to perpetuate what is happening is most likely to me.

My next test would this on the separated ingredients added in to the dry cooked rice instead of cooked together in the same pan which gets much more wet like I said which would be caulflower and broccoli. Then I'm going to need to have cauliflower and broccoli on their own apart from all other food. Then a big bowl of plain cooked peas on their own. So this is going to take a while.

In other news I did up my dose of vitamin C today to 2 grams. I started taking another gram later in the day apart from my first in the morning. I feel better and more calm doing this but without any losses in functionality so it must be doing something good. A way I can tie this into the food test is having the second dose as the reaction to the food at its worst with what I know is able to trigger it badly is happening. Like this food reactions this all begins as soon as it hits the digestive system which is a common theme with me.

The flavor of this most problematic reaction with neuro symptoms is - a bit flu like (has a little nasal drip too), flushy/feverish that gets worse in response to any stimuli, an energetic anxiety yet a heavy dazed out of it feeling, and a cognitive lethargy. The more I think and do the worse it gets. This response will pour into the next day and the stronger the load, the worse it gets too. This could be a multi day response that can


---

update 3/08 - So I recently in the past couple days started using 4 grams of vitamin C divided up throughout the day and I feel much better on this. In general my everything is better and yesterdays second high dose launched the gut problem from the tumeric/curcumin reaction and what was left of the other issues from that and blasted them away for some reason. Of course as you'd expect the second it hit my belly.

I later got a bunch of take out of fried shrimp, fries, and some onion rings because I'm too stressed out from my job to not to sometimes and I needed more coping fuel for my life. Anyways the reaction from this junk wasn't anything like the reaction to even plain rice though of course plain rice in some ways is preferrable as all the fried junk is more brain fog and lethargy inducing. So i had an idea since I wanted to push to 5 grams of vitamin C anyways. I took another gram a couple hours after getting a bit sick of being sick in my delicious food coma. Not entirely to my surprise it worked!...Not entirely but it did something. I regained sensory and mental clarity. I was still quite fatigued and my guts weren't too happy but by the morning I felt much better than I would have if I didn't take the extra gram.

what I'm wondering is how this will effect the rice specific reaction. Tonight I'm trying the separate cooked more dry plate of rice and veggies with cauliflower and broccoli. I expect it to be worse with the vegetables based on what happened even after a snack much later that evening last time but I don't know how much worse this will be. Maybe I'll even be in for a surprise (I hope not, that would make this even more of a head scratcher). I'm going to be pushing to 5 grams consistently every day anyways so I'm just stacking the extra gram on later.

Current vitamin C dosing schedule is - 2 grams in the morning when I wake up - 2 grams 2:30-3 PM - 1 gram possibly 8-9 PM *may change

edit 3/08 8 PM - So today was day 3 of the high dose 4 grams of vitamin C, next dose was taken 3:30 PM. Under these new vitamin C conditions on day 3 when I eat the rice and the veggies almost nothing happens but a simple vague sense of fatigue and a bit more of a inflamed brain feeling. No extreme tanking of energy from the rice and veggies together dry cooked under this new condition. I wonder what what happens with the worst of the previous food combinations reactions under this new condition or an old favorite with the cauliflower, bean sprouts, peas, and cooked salmon in one pan? I'm stumped though, with this new swing I'm gonna have to go dark here and keep trialing random things to see if I can feel my way around some more for useful observations.

edit 3/09 morning - I feel somewhat fatigued and heavy but ok. The more dry cooked rice and vegetables are certainly much harder for me to digest so I won't be doing that all the time and just finding a limitation on my intake that gives me just enough food energy for days ahead but minimizes symptoms. My guts are currently a war zone so I'm gonna be fasting for a couple days here. Though for some reason I think due to wetness making broccoli and cauliflower in the pan mixed with the rice is the worst reaction, even more so than cauliflower/bean sprouts,/green peas.

Like I said with the new vitamin C conditions I need to retry everything now and go back to the drawing board. It just sucks to have so many food sensitivities limiting what you can consume otherwise I wouldn't be stuck with the most plain rice spiced up in the most plain way with some sea salt and a couple pinches of sichuan pepper with a limited selection of vegetables. I mean as you can see though I can eat more but any more than the bare minimum ingredient wise makes me feel like crap. I'm completely intolerant of land and bird meat besides seafood so that is even completely off the menu. I may just a day a week add some spinach to the sad reduced plate of what I can consume without my brain and body turning to mush entirely. to get some greens in. Eating anything else is just risk/reward assessment based these days. Even plain potato and sweet potato give me symptoms in some ways though are even worse.

 

[Wonkmonk]

Have you tried simply grinding some rice and swallowing that without cooking, just to compare the symptoms that result?

It's a great idea. I could also try rice flakes or rice waffles though I will put that on the backburner for now because I have some other things I want to test (see next post) and every single test always takes 5 days because I have to wait until it has left the body before I can make the next test.

 

[Wonkmonk]

I am currently experimenting with plain fresh milk, which in theory should be terrible (lots of protein/lysine, choline, fat, lactose as a carb substrate), but surprisingly is tolerated very well even with bananas as a sweetener, which would add another substrate (fiber, fructose) for fermentation. Something really is going on with milk.

I also tried a Middle Eastern dip which I usually make with soy yoghurt. The recipe is as follows:
*Plain normal fat (3.5-4.0%) yoghurt (soy yoghurt or cows milk yoghurt)
*per 100g of yoghurt 1 tablespoon of tahin paste (preferably white)
*per 500g of yoghurt 1-2 crushed cloves of garlic and the juice of 1-2 lemons (consistency should not be too thick, less than that of plain yoghurt)
*Salt to taste (I use 1 teaspoon per 400g of yoghurt)
--> just mix together with a spoon, no other utensils needed. Serve with pita bread or good-quality wholegrain bread.

I highly recommend this recipe for everyone who can tolerate the ingredients. It's super healthy, especially the vegan version. I personally cannot taste a difference between the vegan and dairy version.

But back to the original topic: This recipe should be terrible because it has loads of protein, choline, fat calcium and oxalic acid (tahin is very high) in it. But surprisingly it was not. Symptomwise, it felt better than hummus, which is much lower in calcium and oxalic acid.

On the other hand, spinach lasanga (which also contains lots of protein, choline, fat, calcium and oxalic acid) was absolutely terrible. The only difference is one uses cheese (whey and liquids discarded), whereas the other use full dairy products (milk, joghurt where nothing is discarded).

So there appears to be something going on with non-cheese dairy products, especially milk. I will explore that further in the coming weeks.

 

[Wishful]

Something really is going on with milk.

It could be feeding a beneficial strain, hindering a bad strain, or contain helpful phagocytes, or the hormones could help, and there are probably many other explanations. Not a simple few-variables system.

BTW, for me coffee is still evil. I'm not going to retest chocolate, because it's unlikely to be tolerated if coffee isn't. That kills my nice theory that it was the embryo chemicals from the coffee/cocoa beans.

 

[Wonkmonk]

It could be feeding a beneficial strain, hindering a bad strain, or contain helpful phagocytes, or the hormones could help, and there are probably many other explanations. Not a simple few-variables system.

Yes, all of this is possible. Or the bacteria can't use the milk protein very well. Casein, for instance, is a very special protein. Or something that is in the milk is causing something in the body that counteracts the negative effects of whatever the bacteria produce. Or something in the milk is antiviral (an antibody?) and suppresses the virus I think is responsible for all of this inside the body.

BTW, for me coffee is still evil. I'm not going to retest chocolate, because it's unlikely to be tolerated if coffee isn't.

Borth out for me, too. Never worked. Also green tea. I suspect caffeine and theobromine (which is caffeine with a methyl group).

This recipe should be terrible because it has loads of protein, choline, fat calcium and oxalic acid (tahin is very high) in it. But surprisingly it was not. Symptomwise, it felt better than hummus, which is much lower in calcium and oxalic acid.

Unfortunately, it caused symptoms. They arrived with a delay compared to what I was expected and were less strong than I thought, but in the end, it did cause symptoms. I continue to operate on the assumption that oxalages and calcium in the same or subseqent meals is bad.

But here again, the full milk product (yoghurt in this case) had a positive effect compared to a soy based substitute.

 

[Wishful]

Borth out for me, too.

The coffee/chocolate intolerance is a bit non-standard for me, since they seem to take a day or more to accumulate to a level that causes symptoms, and then takes several days to wear off. Most of my other intolerances had symptoms showing up the next day, and clearing after a day. Seems to be dose-dependent too.

But here again, the full milk product (yoghurt in this case) had a positive effect

If you get inconsistent results with milk products, remember that it's a complex product, and varies with breed, feed, time since calving, etc. If the milk is mixed from different dairies, it might be more consistent, but it still might vary with season or other factors. Same problem with honey: what flowers were visited?

 

[Dysfunkion]

Milk products are very strange with me too, I tend to just stay away in general because I just can't reliably predict how I'll react. I've had different milk products and brands have completely different reactions to me. Some almost neutral, some extreme lethargy (especially lactose free one's for some reason), and some with a sharp increase of general brain fog and a bloated feeling. Then there has been times I ate out and had some ice cream with nothing much to show at all in terms of anything it did (of course this was also after eating a mixture of other foods too). the only thing I know for sure is that cheese is always varying degrees of a mental and digestive death sentence.

 

[Wonkmonk]

The coffee/chocolate intolerance is a bit non-standard for me, since they seem to take a day or more to accumulate to a level that causes symptoms, and then takes several days to wear off.

Interesting, because caffeine is thought to have left the bloodstream completely after 10 hours.

https://www.webmd.com/diet/how-long-caffeine-lasts
So it's probably caffeine itself, but an intracellular effect or a metabolite of caffeine or a secondary process triggered by caffeine (e.g., viral reactivation).

f you get inconsistent results with milk products, remember that it's a complex product, and varies with breed, feed, time since calving, etc.

Milk products are very strange with me too, I tend to just stay away in general because I just can't reliably predict how I'll react.

I am currently testing the hypothesis that this is due to meal mixing and varying ingredients of the same meal. Reactions to dairy products is very different depending mainly on the subsequent (it seems not so much the previous) meal.

banana milk --> spaghetti (only 1 fresh tomato and salt) = ok
banana milk --> plain white beans = bad
cow's milk yoghurt-tahin dip and bread --> very bad

I suspect that the same or the subsequent meals may not contain a lot of oxalate, otherwise it causes symptoms. Notably, banana milk, which appears to cause no symptoms at all, is almost oxalate free.

I am wondering if the calcium oxalate that forms from the dairy and oxalate might clog blood vessels even when it's only small amounts that are absorbed. In long covid patients, I have seen reports that some of them benefit when clotting agents are cleared from the blood stream. Might be a similar mechanism here.

 

[Wonkmonk]

I also tried a Middle Eastern dip which I usually make with soy yoghurt. The recipe is as follows:

Cheered too soon. There were strong symptoms with a delay of about 12-18 hours. The symptoms lasted for about 5 days.

I suspect the problem is the mix of a high-calcium (yoghurt) and a high-oxalate (tahin) food. I really think it's important to avoid that combination even and especially in subsequent (and maybe also previous meals).

I cannot think of any food I could tolerate that contained both a lot of calcium and a lot of oxalate. I haven't systematically tested subsequent and previous meals.

I had that very hypothesis as early as January 2023. (tagging @Aidan also explored this, in case they are still following)

I have the hypothesis that oxalates are either harmful on their own or exacerbate the negative effects of too much calcium. @Aidan

 

[Wonkmonk]

Of note, in other ME/CFS patients, oxalates seem to be *helpful* (or there is the hypothesis that they might be).

https://forums.phoenixrising.me/threads/re-norway-patent-for-me-cfs-treatment-using-oxalate.60406/

 

[xploit316]

@Wonkmonk Curious to know how you feel after having your meals...Energetic, Tired, Warm, Sleepy? I ask because one thing I discovered was any food that has a relaxing/sleep inducing effect always gives me some or all of my worst symptoms - scalp itch, hairloss, stiff neck, muscle fatigue, cracking joints etc. This relaxing/sleep inducing effect comes from certain foods, some of which are Dairy, wheat, root vegetables, Hummus, chicken with bones/skin on, all the high histamine foods. Medicines include all forms of Magnesium, any Antihistamines. I wonder if Hormones are in play here and whether some of us are 'intolerant' to some of the hormones our body makes when eating certain foods.

 

[Wonkmonk]

The main triggers of symptoms seem to be three things:

1. Pre-fermented foods, especially bread dough (notable exception: fermented dairy products), especially with fat in the same meal or a subsequent meal.

2. Meals (also subsequent) that are high in both calcium or oxalates.

3. Have meals like legumes and pasta/grains/bread as fat free as possible (also subsequent meal)

Minor triggers seem to be:
*Certain spices (e.g., ginger family, black pepper)
*Arsenic (mainly rice, but possibly also apples and grapes)
*Nightshades (probably glycoalkaloids)
*Minced meat (steak seems to be better or ok, maybe because it still contains defenses against spoilage/bacteria)
*Eggs (not 100% sure)

I can't currently think of any food or meal that doesn't contain any of these and causes symptoms. Sadly, these factors rule out a lot, if not most, of the foods that exist, but I think this list should be fairly complete.

My early assessment that fructose, lysine, calcium or choline on their own are triggers is now relatively conclusively ruled out. I can tolerate large amounts of fruit, beans/legumes, milk and cauliflower, which are high in fructose, lysine, calcium and choline if the above principles are respected, e.g., milk is not consumed with or followed by a high-oxalate food or beans aren't consumed with or followed by a food/meal with lots of fat.

Relatively safe meals seem to be (assuming the above stated meal-mixing rules are respected):
*Bananas only, possibly other low-oxalate fruit
*Banana milk (cow's milk with bananas pureed)
*Pasta with tomato (ingredients: white pasta, 1 fresh tomato and salt only)
*Legumes only (kidney/navy/pinto beans all seem to work, lentils and green peas as well)
*Bread with quickly fermented yeast-only dough (try to minimize bacterial fermentation, see post a while ago) and a low fat meat (not minced!) or blue mussles or cheese (high fat allowed)
*Homemade pizza with yeast-only fermentation dough (minimal bacterial fermentation)

The reason why pasta and kale is out might be that white pasta still contains a moderate amount of oxalates and kale is high in calcium. I normally do this one-pot, but will now try to cook the pasta in a copious amount of water which should get rid of most of the oxalates. If that helps, that would lend support to my theory.

 

[Wonkmonk]

Curious to know how you feel after having your meals...Energetic, Tired, Warm, Sleepy? ... This relaxing/sleep inducing effect comes from certain foods, some of which are Dairy, wheat, root vegetables, Hummus, chicken with bones/skin on, all the high histamine foods.

It's very interesting that you mention this. The effects vary based on the meals, but especially for the calcium-and-oxalate containing meals (also after meal mixing), they actually make me fall asleep 1-4 hours after the meal, which is very weird. It's really as if I had taken a sleeping pill. I get extremely tired and then I just fall asleep for about 30-90 minutes.

Warm? Yes, that, too, and that lasts for days, especially after bacterial-fermented doughs.

Energetic? Haha, no never. No food makes me ever feel good or better or like having more energy. It just gets worse from baseline, which is currently moderate CFS. With the wrong foods, I temporarily go from moderate to severe CFS (have to lie down, very tired, muscle and joint pain, angina pectoris-like symtoms, palpitations).

Nightshade glycoalkaloids seem to cause mainly heart-related symptoms, especially palpitations, pressure and some pain in the chest.