Substantial improvement with (strange) dietary adjustments

Husband of

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@Wonkmonk a few questions if you don’t mind

how long do you have to be on Your diet to see benefits?

how significant are the benefits, ie how bad are your symptoms with the diet vs without?

can you provide at least one example of breakfast, lunch and dinner?

Can you drink coffee?

many thanks.
 

xploit316

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@Wonkmonk Going outside of diet, are you a big "stress" or "anxiety" person? I ask cause I have been diagonised high functioning autistic with severe anxiety (of public speaking). Though I cant connect the dots precisely, I have a strong feeling that mental problems play a big part in digestive issues.
 

Wishful

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Is that an angle to look at if there is an excess of collagen in the body and so we feel bad when we eat anything that increases it?
I don't think so. I'm unaware of having any collagen problems. Proline is used in a vast number of reactions in the body, and it could be an indirect effect which opens up even more possibilities, so I'm not spending too much time trying to guess why/how it's doing what it's doing. The proline-CLA link hasn't turned up any good possibilities yet. It could be something like CLAs making slightly different cell membranes which transport less proline, and now the membranes are blocking or passing something else at abnormal rates. Maybe if I find one or more other factors that affect my response to proline I'll figure it out.
 

Wonkmonk

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@Wonkmonk a few questions if you don’t mind
Hi, Husband, thanks so much for your comment. Happy to answer (this is only my own experience, of course, and much of this is preliminary because I am still in the process of figuring things out):

How long do you have to be on Your diet to see benefits?

Almost immediately. It starts after maybe 24 hours and very significant benefits appear after 3-4 days. Full benefits after maybe 10 days.

How significant are the benefits, ie how bad are your symptoms with the diet vs without?

The benefits are absolutely amazing. If I eat the foods listed above, I go to very severe within a week or two. Almost completely bedridden, almost constantly in pain, terrible brain fog, headaches, chest discomfort, difficulty breathing, itchy rash on my lower legs, tingling sensations, unable to do anything. On the diet, I it goes to borderline moderate/severe. Pain almost gone, most other symptoms totally or almost gone, can leave bed for several hours and even go on a walk for a few miles.

Can you provide at least one example of breakfast, lunch and dinner?

I can, but I have to say I haven't figured out everything yet and I am still unsure about many foods. The downside is that this is not very tasty :(.

A breakfast that definitely works well is a very thoroughly cooked plain oat porridge (4 ounces (~100g) of fine steelcut oats plus 26 ounces (~700ml) of nitrate-free mineral water cooked at 85+ degrees Celsius for at least 20 minutes, it has to be completely soft, no "crunch" or uncooked starches) plus 2 (~50g) ounces of plain walnuts (thoroughly chewed).

I use this to bring down my symptoms quickly if something went wrong, but it's of course not a long-term solution to always eat it because it's deficient in many nutrients. I would at least need supplements.

I think I could add some grapes or berries, too, but I'm not sure yet. I'm just in the process of figuring out if any type of salad would work, perhaps in a small quantity.

Lunch: Thoroughly cooked whole barley grains (shredded would perhaps be better). 4 ounces (~100g) cooked for 1.5 hours in 20 ounces (550ml) of nitrate-free mineral water (covered with lid to lose no water). 4 ounces (100g) of brown flat lentils (the ones that cook quickly), cooked for 1 hour in 18 ounces (500ml) of nitrate-free mineral water (covered). Plus, again an ounce (30g) of walnuts. I have never felt a negative reaction to salt, so adding salt should be ok, though I try to minimize salt consumption in general.

Again, this is monotonous and nutrient deficient, but it brings down my symptoms quickly. I think it should be possible to add limited amounts of other foods, but I haven't figured that out yet.

Dinner: I am not entirely sure about tomato sauce yet, but 6 ounces (150g) of whole grain wheat, spelt or emmer spaghetti with 7 ounces (200g) of plain tomato passata with 1 clove of minced garlic sauteed in 1 teaspoon of grapeseed oil, no other seasoning. Spaghetti must be completely soft and cooked, not al dente.

Can you drink coffee?

I think I can't. I reacted negatively to coffee and cocoa. I think it's the caffeine because cocoa also contains caffeine and related compounds. I never tried de-caffeinated coffee. It might work. But I have to test this again because I seem to react to some foods only if I eat one of the bad foods. For example, I always put potatos on the red list, BUT: if I get everything else right, I seem to be able to tolerate peeled, very thoroughly cooked potatos, even in higher amounts.

I hope this helps. Thanks for engaging.
 

Wonkmonk

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@Wonkmonk Going outside of diet, are you a big "stress" or "anxiety" person? I ask cause I have been diagonised high functioning autistic with severe anxiety (of public speaking). Though I cant connect the dots precisely, I have a strong feeling that mental problems play a big part in digestive issues.
That's a great question, actually. I never had any mental health issue except minor mood swings that I think are normal, and never coped with anxiety, BUT: In the past I sometimes doubted that foods are really a cause of my symptoms, so I had times when I said "screw it, I eat what I want", and when I eat a lot of bad foods (especially cabbage family foods like kale, sauerkraut), I did get anxious and depressed. That completely resolved once I removed all cabbage foods from my diet. There is definitely a connection with mental health, one way or the other.
 

Wonkmonk

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Interestingly, I just found this on salicylate intolerance (didn't know that even existed).

https://www.healthline.com/nutrition/salicylate-sensitivity#TOC_TITLE_HDR_4

Several of the foods I think I am intolerant to do contain salicylates (e.g., berries). Some of the symptoms mentioned here are also present.
Symptoms include
  • Stuffy nose
  • Sinus infection and inflammation
  • Nasal and sinus polyps
  • Asthma
  • Diarrhea
  • Gas
  • Abdominal pain
  • Gut inflammation (colitis)
  • Hives
  • Tissue swelling

It's fascinating, I have pretty much all of this when I eat larger amounts of cabbage-family foods (organosulphur compounds?), sour berries (salicylates?), sweet potatos (Beta carotin?). This fits 100% (plus pain, extreme weakness, heart palpitations, chest discomfort, flu-like symptoms). This all reverts back to my basic CFS level (moderate-severe) when I stop eating these foods. Tried several times, always reproduced the exact same effect.

I should maybe try to overcook the cabbage and see if it's bad, too, as someone in an earlier comment suggested that some compounds that may be responsible get destroyed by cooking.
 

Wonkmonk

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Could CFS, for some people including me, be mainly an undiscovered food intolerance. Or at least exacerbated massively by intolerance to some foods?

It's definitely not as simple as cutting out one type of food like for celiac disease. I also react to meat and even pure lysine powder in higher concentrations. It must be more complex than that, but food definitely plays a huge role in my case.
 

Wishful

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Could CFS, for some people including me, be mainly an undiscovered food intolerance.
No, I've had very drastic diet changes, and none of them changed my baseline ME symptoms. Cornstarch and water isn't completely free of nutrients, but it's pretty close, and that diet didn't stop my ME. The problem seems to be that many foods can make the ME symptoms more severe, but avoiding them doesn't lower your baseline severity.
 

hapl808

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Could CFS, for some people including me, be mainly an undiscovered food intolerance. Or at least exacerbated massively by intolerance to some foods?
I think it could be for some people. As I've said before, we have no idea if we're all dealing with the same illness or etiology, or if there are 50 distinct disorders.

Mine seems connected to foods a bit, but it doesn't usually make huge differences unless I eat something like MSG which gives me a full PEM crash. Yet even a multi-day fast makes my symptoms 'better', but maybe a 5%-10% improvement on Hummingbird (I think that's the scale I'm thinking of) as opposed to a jump from severe to moderate or something.

It's frustrating because it feels like we're in the dark and not sure if we're pulling levers or pushing buttons and if any of the instruments are connected to anything or not.
 

Wishful

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It's frustrating because it feels like we're in the dark and not sure if we're pulling levers or pushing buttons and if any of the instruments are connected to anything or not.
I like that analogy. :) It's so exciting when our groping around actually makes something happen. Then we discover that it's just lever #5129 and we don't have the manual explaining what the levers actually connect to. :grumpy: Then we try pulling #5129 again and find that it no longer works. :( Yah, that's ME all right.
 

Wonkmonk

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I suspect organic acids in general to contribute to my sympoms (not just salicylic acid), and it seems it's like a bucket that's filling up and that causes symptoms once it overflows. I can eat blueberries with breakfast for a day or two, but after that, even small additional amounts immediately make me worse.

People who suffere from histamine intolerance have reported that as well. They can tolerate a small amount of histamines, but once that tolerance is exhaustet, they get worse very quickly.
 

Wishful

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I can eat blueberries with breakfast for a day or two, but after that, even small additional amounts immediately make me worse.
There might also be a biological delay involved. A chemical might make cells grow abnormally, but it won't have an effect until enough cells have gone through the replacement process.
 

Wonkmonk

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There might also be a biological delay involved. A chemical might make cells grow abnormally, but it won't have an effect until enough cells have gone through the replacement process.
That's definitely a possibility. I thought that it might be microbiome-mediated, i.e., somthing happens in the microbiome, bacteria make compounds that don't do me good etc. I found that most adverse effects subside after about 3-4 days, which is about the time food stays in the colon.
 

Wonkmonk

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Here are a few things I tried. Nothing of this is definitive, my assessments have changed so often in the past. But this is what I currently think:

*Potatos (starchy Russet- or Yukon Gold-type, peeled) are ok, even in large amounts (1-2 pounds a day), if steamed (could also be boiled, but steaming preserves more nutrients) at 95 degrees Celsius until they are VERY soft and easily fall apart (like for mashed potatos). That calls into question whether nightshades as a family have to be avoided at all. I'll try a Ratatouille this weekend which contains lots of nightshades (peppers, aubergines, tomatos).

*Blueberries are not ok in larger amounts (maybe 3-6 ounces/100-200g every other day). They may be ok in lower amounts. Boiling the berries for 15 minutes (until they turn to mush) *might* make them a bit better, but doesn't make them completely ok.

*Red berries (e.g., strawberries) and sour berries (black currants, red currents, raspberries, blackberries) have to be avoided.

*7 ounces (200g) of dried legumes (beans, lentils) on the same day are probably already too much in terms of lysine.

I will try to check apples (Golden delicious with low acid), very long-cooked green beans with tomato sauce, ratatouille and chanterell mushrooms in the next two weeks.
 

Wonkmonk

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I tried a delicious ratatouille (tomatos, eggplant, zucchini, red bell peppers) with mashed potatos and fried chanterelles yesterday (all vegan with soy-based cream).

I had some more symptoms this night, but I tend to assume that nightshades as a family do NOT cause the symptoms.

I think the chanterelles are problematic. I will avoid them henceforth (maybe try once again, but I'm fairly certain). I will try button mushrooms next.

I was thinking that maybe LECTINS could be problematic. Therefore I will try a pressure-cooked Ratatouille (more lectins degrade during pressure cooking) and a Ratatouille without bell peppers since their lectins seem to be more heat stable whereas they seem to readily degrade for eggplant and zucchini.
 

Wonkmonk

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My takeaways from the weekend:

*There seem to be foods that cause symptoms when I first eat them. Chanterelles appear to be in that category. I haven't eaten any for months and got symptoms immediately (within 2-3 hours of consumption).

*And then there seem to be foods that cause symptoms only after 3-4 meals in a short timeframe, like thoroughly cooked green beans. When I first ate a pound late last week, I thought "wow, I can eat those", but I ate two more pounds the next day and that caused symptoms.

*I tolerated the Ratatouille better than expected, but it caused some problems. I suspect the bell peppers and will check those again.

*For now, I put thoroughly cooked potatos (very soft, falling apart) on the green list that can be eaten frequently in high amounts.
 

Wonkmonk

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I have tested a few things, and I have a new hypothesis: It may not always be the food itself, but a combination of foods (or nutritional factors in the foods) that cause the problems.

It seems like it helps a lot to separate the following:

1. Sugars, esp. fructose (fruit)
2. High protein foods, esp. high in lysine (legumes)
3. Fat, esp. in the form of pressed oils and with high oleic acid (monounsturated) content
4. Nitrate rich foods, e.g. spinach
5. Organic acids (mainly from fruit)

In the tests last week, I found that I can eat substantial amounts of spinach if cooked with low oil content and eaten with cooked barley only (total ingredients of the meal: 300g of spinach, 1 tsp grape seed oil, 1 clove of garlic, 1 tbsp of vegan butter (very low monounsaturated), 6 oz of almond milk, 100g of dried barley kernels).

So this meal is:

1. Sugars: None.
2. Protein: Low / Lysine: Very low.
3. Fat: Low / Monounsaturated: Very low.
4. Nitrates: HIGH (from spinach).
5. Organic acids: None.

It felt like I can tolerate that quite well.

My suspicion is that the problems are caused by some kind of fermentation product that gets produced in the microbiome from nitrates, but only if other factors are present.

It could possibly be something like nitrosamines or something like that, which get produced when nitrate/nitrite rich foods are eaten with protein rich foods. I've see studies that say that production is higher if the meal contains a high fat content and if ascorbic acid is present.

I suspect that the spinach (or nitrate) alone doesn't cause many problems because for some reasons, a compound like nitrosamines causes the problems and doesn't get produced in high quantities if spinach is consumed without the other co-factors.

But that's just speculation. I will do more tests after my mom brings new groceries next week. Especially, I will check if I can tolerate plain fruit (high in acid and sugars, but low in everything else), i.e., a meal that's fruit only and nothing else (or maybe some nuts for fat-soluble nutrients).
 

Wonkmonk

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Oh, and if you're new to this thread and you think "This guy is nuts," I have no hard feelings. I would think exactly the same if someone else wrote this, but the benefits I derive from these strange dietary adjustment is very clear and very reliably reproducable.
 

Wishful

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Combinations definitely complicate figuring out what's causing an effect. Different foods trigger different amounts of enzyme production, acid and bile production, etc. That can alter what fatty and amino acids become available at which point in the digestive tract, which can in turn affect how cell membranes are built, how fast cells reproduce, and whatever else.

You might come up with a theory of why a combination works, and it will fit with several food combinations ... and not work with another that you'd predicted would work because it's actually not the right theory. It basically comes down to experimenting to find what does work for you. I consider my theories for which foods I should tolerate or avoid to just be helpful guides for what to try next, which I hope provide at least a slightly better probability of being correct than pure random choice.