Substantial improvement with (strange) dietary adjustments

Wonkmonk

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homogeneous means I cannot eat any high sulphur/thiol foods. I am about to start treating this myself. But cabbages, cruciferous, definetly nothing in onions family. Very bad pain to head and body.
Have you tried them isolated? I can tolerate onions in an onion-only soup with adequate distance to other meals (no meal-mixing in the stomach), but they seem to cause trouble in stews or spaghetti etc.

I suspect that onions are a great substrate for fermentation, so when eaten with protein, choline etc., the bacteria can produce more harmful stuff, but when I eat only onions, the nutrients the bacteria would need aren't present, so no or few symptoms. Same with cauliflower. Sadly, for some reason, it doesn't work with kale.
 

Dysfunkion

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So I just had a reaction some days ago that I cant decipher. I wanted to see how I'd react to something Indian spiced. I know it was the turmeric in the curry powder as I had the dish before normally not with the curry powder and it doesn't do this. Minutes into consuming it I became more and more fatigued and foggy. My nervous system kind of freaked out with my skin sensation in certain areas of my body. And I got knocked back a bit, still mild but it was a bit of a blow. Now I since that have the inflamed back of neck where it meets the head, behind forehead, and eye pressure thing. Was very sleepy too all day and a bit dizzy at times. Today its a bit better but I still feel a bit blunted and less environmentally reactive. Looks like I'm staying away from turmeric anything now.

Edit 3/28 -Today though I have really started to rebound out of the turmeric reaction and my anxiety is through the roof today with the opposite of the flushing problem I had yesterday and now I'm freezing and over stimulated. Have a feeling the serotonin receptor had something to do with this crazy roller coaster. I woke up this morning like a race car. Obviously some receptor whiplash occurs when I use the stuff but specifically I can only play a educated guessing game.
 
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Wonkmonk

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I know it was the turmeric in the curry powder as I had the dish before normally not with the curry powder and it doesn't do this.
I have noticed a negative reaction to turmeric as well. Given how quickly your symptoms appeared, curcumin could be the culprit, which reaches peak concentrations after 1.5 hours, so effects could start within minutes.

https://www.tandfonline.com/doi/full/10.1080/07315724.2017.1358118

It's poorly absorbed though so that would be a caveat. Did you have black pepper in the same meal? It strongly improves bioavailability.

Further tests you could do, if you want to explore this further, is to try a curcumin supplement and see if the same effects appear.
 

Wonkmonk

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I think I should avoid raw mushrooms. I ate them a few times recently, alone or with other starchy foods or fried in a very small amount of oil and it appears they cause symptoms, but only (or much more strongly) when eaten raw. I can eat quite a lot cooked/fried mushrooms.

It was mainly cremini and button mushrooms, so agaritine could be a possible cause.
 

Wonkmonk

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I once developed a theory that is of course completely unproven that compounds that can induce apoptosis in cells where something went wrong (immortalized cell lines, cancer cells, virally infected cells) cause symptoms. The idea is that there is a chronic nonproductive intracellular infection (Dr. Lerner's theory) in which a virus produces viral fragments intracellularly.

When the cells go into apoptosis, the viral fragments are released and cause inflation and can in turn infect other cells. It might also be the virus itself, not just the fragments as Dr. Lerner hypothesized (if I understand him correctly).

So several factors might be at play, compounds that help/induce the virus to replicate intracellularly and compounds that cause apoptosis in infected cells, which causes inflammation and may be the way in which an infection could spread from cell to cell.
 

Wonkmonk

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I once developed a theory that is of course completely unproven that compounds that can induce apoptosis in cells where something went wrong (immortalized cell lines, cancer cells, virally infected cells) cause symptoms. The idea is that there is a chronic nonproductive intracellular infection (Dr. Lerner's theory) in which a virus produces viral fragments intracellularly.
Another theory that I had is that compounds like curcumin or agaritine (or compounds in other spices) could be antibiotic and kill off the bacteria that produce the harmful compounds in the gut which then release bacterial endotoxins (or more of the harmful products themselves) as in a Jarish-Herxheimer-Reaction.
 

Dysfunkion

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I have noticed a negative reaction to turmeric as well. Given how quickly your symptoms appeared, curcumin could be the culprit, which reaches peak concentrations after 1.5 hours, so effects could start within minutes.

https://www.tandfonline.com/doi/full/10.1080/07315724.2017.1358118

It's poorly absorbed though so that would be a caveat. Did you have black pepper in the same meal? It strongly improves bioavailability.

Further tests you could do, if you want to explore this further, is to try a curcumin supplement and see if the same effects appear.

It may have had some black pepper in it, I'm not sure (it was some singapore mei fun, had all the normal mei fun from the places before with no weird reaction). Other spicy peppers I don't react to, even in a meal the week before something had a bunch of black pepper itself and that didn't do anything to me but I also don't normally cook with black pepper. I use a couple good pinches of sichuan to spice things up a little. There is no way based on how I reacted to that that I'd be trying a curcumin supplement though because if that goes south one more time with a reaction like I had that could be treading in dangerous territory and I can't risk a crash that bad. I'm just going to avoid anything with curry powder in the future.

I've bounced back alright but I still have that stupid inflammarion feeling in my head still in that typical "back of neck connecting to skull" area wrapping around the forehead and top of head to a degree. This flare hasn't flared that bad ear though, just this and some gut issues. I wonder if this is because it caused something to irritate my vagus nerve badly and the area reacted with dysregulating something electrical in the brain as it feels migraine like.

Another theory that I had is that compounds like curcumin or agaritine (or compounds in other spices) could be antibiotic and kill off the bacteria that produce the harmful compounds in the gut which then release bacterial endotoxins (or more of the harmful products themselves) as in a Jarish-Herxheimer-Reaction.

Yup this has also been my line of thinking in the possibilities too, I know it has something to do with my guts and when it hit them it was like dropping a bomb on that colony. I will say that I have a weirdly despite the annoying symptoms with extra fluctuating fatigue waves clearer head and even senses right now. My guts though as I type this? Absolute warzone. lol I went out last night with a family member and I got an extra loaded veggies burrito and had some popcorn at the movies too, probably didn't help the situation but after consuming that stuff nothing went wrong in particular anyways save for my guts here being a bit more angry.
 

Wonkmonk

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There is no way based on how I reacted to that that I'd be trying a curcumin supplement though because if that goes south one more time with a reaction like I had that could be treading in dangerous territory and I can't risk a crash that bad. I'm just going to avoid anything with curry powder in the future.
Yes, better not to risk it and just avoid it. :thumbsup:

My guts though as I type this? Absolute warzone. lol I went out last night with a family member and I got an extra loaded veggies burrito and had some popcorn at the movies too, probably didn't help the situation but after consuming that stuff nothing went wrong in particular anyways save for my guts here being a bit more angry.
You seem to usually have meals with lots of ingredients. Have you thought about going on a simpler diet for a few weeks to see if that helps you rule out a few things or better identify culprits? It was a major problem for me when figuring this out that I could tell I am reacting badly to a meal, but it wasn't possible to say what it was in the meal that caused it because the meal had so many ingredients.
 

Wonkmonk

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I am now very certain that my food intolerances aren't triggered by a single compound or class of compounds like other usual suspects (celiac disease, histamine intolerance, food allergies etc.).

I think it's a whole host of compounds and foods that trigger different processes that are harmful and that I all must avoid. That makes it very difficult, apart from the whole host of other factors I seem to have to pay attention to (meal mixing, meal splitting, nutrient overload, meal timing, meal temperature, pre-fermentation etc.).

It's kind of ridiculous, but on the other hand, it "worked" so far. Week 6 in an own apartment now, no help whatsoever from anyone.
 

Dysfunkion

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Yes, better not to risk it and just avoid it. :thumbsup:


You seem to usually have meals with lots of ingredients. Have you thought about going on a simpler diet for a few weeks to see if that helps you rule out a few things or better identify culprits? It was a major problem for me when figuring this out that I could tell I am reacting badly to a meal, but it wasn't possible to say what it was in the meal that caused it because the meal had so many ingredients.

Yeah I'm gonna be fasting largely for a couple days here and then having more divided up, simpler food for a while since this whole turmeric/curcumin incident really threw everything off the rails in a way nothing else has in many months. I need to let my guts empty out here and hit a bit of a reset button.
 

Wonkmonk

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What I will try as soon as I get home (still living in the apartment alone without a large kitchen for baking) is to try a no-fermentation bread dough. I tried a yeastless version with baking powder, but it was difficult to handle and didn't taste good. I think I can make one with yeast, but have to slow down the bacteria (baker's yeast doesn't seem to be a problem).

So the plan is:
*Freeze the flour to make the bacteria go dormant
*Use lots of yeast
*Make a poolish-like yeast starter prefermented at high temp to have the highest possible yeast activity
*Keep fermentation time of the dough as low as possible

I suspect that I can make a dough that doesn't ferment for more than 1 hour before it goes in the oven, and if the bacteria are dormant due to the pre-freezing of the flour, I should have almost exclusively yeast-based fermentation.

That should result in a bread that shouldn't cause symptoms and still be pretty good.
 

Dysfunkion

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Interested on how you react to the special bread you're making there.

I have bounced out of the horrific reaction I had to the curry powder loaded take out which I will never be touching ever again. I have some on and off pressurized brain stem feelings but that's a bit better today and I'm also having a lot of nasal drip right now for some reason. Otherwise I actually feel better than I did before the reaction and the fluctuations it induced.

Another thing I noticed is that by chance not realizing it I have not had anything with green peas in it for a week now, this could have been a potential problem child in my diet keeping me feeling worse in more subtle ways. I have a couple small bags of green frozen peas so I could probably replace them with broccoli which I know I have no strange reaction to along with cauliflower and then sometimes make myself a bowl of only salted green peas and see how I react. Tonight I'll be dinner fasting again though and allowing my body to reset a bit more.
 

Wonkmonk

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Interested on how you react to the special bread you're making there.
I have established with a very high degree of certainty that long-fermented bread is one of the worst things I can have, especially with fat (cheese, peanut butter, nutella etc.). Symptoms last for 3-4 days and are very unpleasant. It cannot be any ingredient because I liberally eat everything (white wheat, salt and yeast flakes) in pasta without the same negative effect. That's why I am so convinced it's about fermentation and the microbiome.

I have bounced out of the horrific reaction I had to the curry powder loaded take out
So happy to hear you're doing better. If there is one good thing about my situation it seems to be that every crash after food seems to be self limiting and goes away on its own. I have never stayed permanently worse after one single bad meal. It's always repeat consumption that causes a long-term deterioration, but as I found out in the past 2 years, that also seems to be reversible given how strongly I improved on the new diet.

Looks like that's also the case for you. I heard terrible stories on this board and elsewhere about single foods or ingredients like oregano oil or sulphates which sent people into a months-long symptom flare. Luckily, that never happened to me. Also not with the loooooong list of medications I tried.

Another thing I noticed is that by chance not realizing it I have not had anything with green peas in it for a week now ... I could ... make myself a bowl of only salted green peas and see how I react.
I tested green peas recently, either alone (2 pounds in one meal) or with some white pasta, a bit of fresh tomato and salt (nothing else) and I could tolerate them very well.

If green peas cause symptoms for you, but other green veggies and other legumes do not, maybe spermidine could be the reason, which is uniquely abundant in green peas. It's also in dried soy beans in high amounts, so maybe worth checking if soy is also problematic.
 

Wonkmonk

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Speaking of medications: I am doing the dietary thing for now mainly, but one med I want to try again is Dr. Mason Brown's (Scottish physician) suggestion Nimodipine, which I think had positive effects when I once briefly tried it. Maybe together with the dietary approach, it will be more effective.

There appears to be a study about it, but I am not sure what its quality is:

https://www.actionforme.org.uk/asse...nts/2/6193/nimodipine use in me, jan 2014.pdf

Scotland lists it under "Interventions that may do more harm than good".

https://www.scot.nhs.uk/wp-content/uploads/2015/06/GPSQuick-Ref.pdf

I cannot say it has made me worse in any way though.
 

Wonkmonk

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Another dietary thing I want to try is fresh milk. I hate that I have to, because I actually want to be a vegan, but I have too few foods I can tolerate, I have to look for more things that I can eat.

Why milk? Because it's a bit of a mystery: Although it contains lots of protein, choline and sugar (lactose), fermented dairy products do not seem to cause a lot of symptoms (or any at all) although some of them like parmigiano have fermented for months. That's a stark contrast with a bread dough that makes all hell break loose after only 48 hours of fermentation.

If milk can ferment outside the body without causing symptoms, it may also ferment in the body without harmful effects and therefore be safe to eat.

I will try bananas first as a sweetener because they caused few symptoms together with porridge. If that doesn't work, I might use erythritol as an artificial sweetener, which is not metabolized at all by the microbiome. It might increase the thrombosis risk, but that's not something I worry about too much.
 

Wonkmonk

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(baker's yeast doesn't seem to be a problem).
Btw, here is how I found that out: I cooked porridge from dried grain flakes, which should not have pre-fermented and is then sterilized after cooking. I then added yeast to some of the porridge and let it ferment at high temps for several hours. It tasted like beer afterwards. It caused no symptoms.

Store-bought beer, which has fermented for weeks, also causes few if any symptoms. Same with yeast flakes.

I therefore conclude that yeast itself and yeast-based fermentation is safe in any form.
 

Wishful

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My intolerance of plant embryos is gone! Thank you Walmart for selling intestinal flushing out treatments in the form of contaminated BBQ chicken.
 

Dysfunkion

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I have established with a very high degree of certainty that long-fermented bread is one of the worst things I can have, especially with fat (cheese, peanut butter, nutella etc.). Symptoms last for 3-4 days and are very unpleasant. It cannot be any ingredient because I liberally eat everything (white wheat, salt and yeast flakes) in pasta without the same negative effect. That's why I am so convinced it's about fermentation and the microbiome.


So happy to hear you're doing better. If there is one good thing about my situation it seems to be that every crash after food seems to be self limiting and goes away on its own. I have never stayed permanently worse after one single bad meal. It's always repeat consumption that causes a long-term deterioration, but as I found out in the past 2 years, that also seems to be reversible given how strongly I improved on the new diet.

Looks like that's also the case for you. I heard terrible stories on this board and elsewhere about single foods or ingredients like oregano oil or sulphates which sent people into a months-long symptom flare. Luckily, that never happened to me. Also not with the loooooong list of medications I tried.


I tested green peas recently, either alone (2 pounds in one meal) or with some white pasta, a bit of fresh tomato and salt (nothing else) and I could tolerate them very well.

If green peas cause symptoms for you, but other green veggies and other legumes do not, maybe spermidine could be the reason, which is uniquely abundant in green peas. It's also in dried soy beans in high amounts, so maybe worth checking if soy is also problematic.

On fermentation what I'm also experimenting with next on that front is instead of mixing ingredients together which tends to get more wet, I'm going to take ingredients and keep them separate. I'm also suspecting due to my low gut motility that things are sticking around for a long time and fermenting causing very bad things to happen. It might even be happened with the turmeric where some of it got stuck in the mix and then the microbiome is reacting over and over again to it till all of it is completely evacuated. I may be stuck in a gut fermentation byproduct loop right now. Just a bit bloated right now, a bit of that ache and brain fog where the neck meets the skull but it's more annoying than crippling like it was in that 1-3 day window of the reaction. I'm gonna be laying low eating more minimally for a while and focusing on reducing fermentation to try to pull myself out faster. If the more dry and separated method of cooking/eating leaves my guts and brain more intact I may be on to something there.

Edit - Ok I have a plan here now. Tomorrow I'm going to have just cooked dry basmati rice and see what my body/guts react like to that. Then I will do the same another day but add cauliflower. Another day I will do the same and add broccoli. And then another green peas. This is a sort of skeleton plan in dissecting this, it's subject to change. I did pass a lot of gas before and that greatly modulates my symptoms so I know there is also a trapped gas element here. My current theory is that when the microbiome was exposed to curry powder a specific type of bacteria could have reacted by suddenly creating a mass amount of waste products and gases that may have a strange non-typical composition to them that is able to induce other reactions in the colony and the nervous system.

It's rare I eat anything super processed so I don't think I have much on the front of run in's with sulphates and even when I do eat out most things I eat are fresh cooked. I never use oregano so I don't know how I react to that. Recently had some food with cilantro in it and I was fine with that if that says anything.

On the peas I'll find out soon enough, I don't appear to have any issues with soy alone though soy products like tofu and soy sauce are problematic for me in larger amounts. I don't eat tofu anymore but I'll occasionally have a small amount of soy sauce if I eat out. I never at home though eat anything else that has soy in it though. I could get a bag of edamame, eat that alone and see if it does the same thing as green peas alone after I try that.
 
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Wonkmonk

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My intolerance of plant embryos is gone! Thank you Walmart for selling intestinal flushing out treatments in the form of contaminated BBQ chicken.
So that would also point to the problem being in the microbiome, right?

On fermentation what I'm also experimenting with next on that front is instead of mixing ingredients together which tends to get more wet, I'm going to take ingredients and keep them separate.
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'm also suspecting due to my low gut motility
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.

It might even be happened with the turmeric where some of it got stuck in the mix and then the microbiome is reacting over and over again to it till all of it is completely evacuated.
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.

Edit - Ok I have a plan here now. Tomorrow I'm going to have just cooked dry basmati rice and see what my body/guts react like to that. Then I will do the same another day but add cauliflower. Another day I will do the same and add broccoli. And then another green peas.
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:
Tomorrow I'm going to have just cooked dry basmati rice and see what my body/guts react like to that.
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.

My current theory is that when the microbiome was exposed to curry powder a specific type of bacteria could have reacted by suddenly creating a mass amount of waste products and gases that may have a strange non-typical composition to them that is able to induce other reactions in the colony and the nervous system.
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).

sulphates
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.
 
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