Substantial improvement with (strange) dietary adjustments

[Wonkmonk]

I think the problem with potatos is that they contain some oxalate (peeled potatos aren't that high actually) and they are also relatively high in lysine for a plant food (containing up to 0.2g per 100g baked potato). Since I eat the potatos plain, with nothing else, I have to eat over 2 pounds to get about 800-900 calories, which is a typical meal size for me. That's 2 grams of lysine, which is more than in 100g of lentils for instance. the potatos have carbs and fiber and If consumed as fries, there is also some fat in the mix.

So that's all ingredients there for a worsening of symptoms.

oxalate + protein (esp. lysine) + carbs/fiber + fat

and

choline + protein (esp. lysine) + carbs/fiber + fat

are both very problematic. Oxalate is much worse though because it seems to accumulate over time and cause symptoms for decades, whereas the choline symptoms tend to disappear after a few days.

 

[xploit316]

@Wonkmonk Thanks for the update. I need to start limiting my carb intake like you. Starch, especially of any roasted variety seems to be my latest gut trigger.

 

[Wishful]

Starch, especially of any roasted variety seems to be my latest gut trigger.

Our microbiome can change significantly and abruptly, without any obvious cause. I abruptly became intolerant of fermentable fibre, for no reason I could identify. The probiotics I tried recently does seem to have fixed the problem (I'm still testing other foods). Given that human microbiomes have maybe 1000 strains, it was amazing luck that a 14-strain capsule had the right strain for me.

Lesson learned: if you develop a sudden intolerance that you think is related to microbiome activity, probiotics might be worth trying. If a commercial product doesn't do the trick, some food with live bacteria (and/or fungi) might be worth trying, or just eating random (non-toxic) live vegetation without washing it first. Maybe sprinkle some rich garden soil on your meal. Eat some live bugs (they've got complex microbiomes too). I suppose FMTs are the best way to restore the less common strains.

 

[xploit316]

The probiotics I tried recently does seem to have fixed the problem (I'm still testing other foods)

Which probiotics did you take?

 

[Wishful]

Which probiotics did you take?

Jamieson. It says 10 billion active cells, and has 14 strains. It was the highest number of strains at the local Walmart, so I chose that. I was wondering whether refrigerated probiotics had greater variety of strains, but a check online didn't make them seem any better.

I'm presently not taking it, since I want to see whether it has fully solved the problem, or whether I need to keep taking it. So far, so good.

Funny bit: the label says: "Store between 15C and 25C", but then says "Refrigerate (which means storing at 4C) for maximum potency and freshness". I guess label writers really have no idea what they're writing.

 

[Wonkmonk]

Hey y'all, thanks for the comments and sorry for responding late. I have been trying a lot of things and haven't logged in for a while, but here is another update.

 

[Wonkmonk]

I need to start limiting my carb intake like you. Starch, especially of any roasted variety seems to be my latest gut trigger.

I have also found out that it is absolutely essential to limit both overall carb intake, but also individual meal size especially when it comes to carbs. I have found that I can tolerate only about 100g of carbs per meal (starch and sugar, not sure to what extent fiber counts). So 150g of dry pasta, 200-250g of dried legumes and 2 pounds of fruit per meal is the upper limit. This appears to be really important.

I have to look into the "roasted" aspect, that may also play a role, especially since I found out cooked potatos seem to be better tolerated than baked fries. Generally, plain freshly cooked nonprocessed foods seem to be best for me.

 

[Wonkmonk]

if you develop a sudden intolerance that you think is related to microbiome activity, probiotics might be worth trying.

Tried them, no effect in my case. But so glad to hear they helped you!

 

[Wonkmonk]

In the past weeks, I have found out the following:

1. Omega 3 intake must be limited (for some weird reason because they are actually very healthy). Foods that are not known to contain a lot of Omega 3 can still have substantial amounts when consumed regularly. 100g of cheese has about 0.4 grams of Omega 3, and it might be higher when it's from grass-fed cheese. 100g of fresh kale also has almost 0.4 grams of Omega 3. Avocado has just 0.125g of Omega 3 per 100g, but in 2 large avocados that still amounts to 0.3g or 0.4g. All according to the USDA on this website: https://fdc.nal.usda.gov/fdc-app.html. So all these foods must be limited.

2. Same like 1. but with oxalic acid. We're all talking about spinach, chard, beet greens and star fruit, but chickpeas or white beans also have substantial amounts when consumed in larger quantities.

3. Chickpeas (and possibly pasta and potatos) seem to be better tolerated when cooked in copious amounts of water and the cooking water is discarded (possibly flushes out oxalates)

4, Choline must be avoided in connection with protein (especially animal protein and possibly especially lysine) and fat.

5. Mushrooms contain consideral amounts of choline in larger quantities. They are not a "free food" I can eat large quantities of. Same with nutritional yeast.

6. Strange, but it looks like after a choline and protein/fat-rich meal, fruit must be avoided even when meal mixing in the stomach can be avoided (10 hours between meals). So no fruit after legumes or mushrooms.

7. Beer (0%, alcohol free) contains a good amount of choline. Two 8 ounce glasses of beer can have up to 50 mg of choline. It must not be consumed with fat and/or protein sources. It may be allowed together with fruit and legumes in the absence of fat.

8. Onions and cabbage-family foods are to be avoided, but maybe they can be eaten when cooking/preparation methods do not result in the forming of the pungent compounds or these are removed. E.g., rinsing sliced onions, boiling them shortly and discarding the cooking water seems to help, but I'm not 100% sure of that so far.

9. I am no longer convinced alpha galactoidase enzymes actually help, but I have to look into that.

10. Using very low fat yoghurt and cheese did NOT help much. I suspect the harmful compounds might be formed before the fat is removed.

 

[Wishful]

Omega 3 intake must be limited (for some weird reason because they are actually very healthy).

They're healthy when everything else is working right. They're just building blocks, so if what they're used to build isn't being built right, or if they are built right and whatever they are supposed to interact with is working wrong, then building more of them isn't helpful. All the "it's good for you" claims are based on the assumption that everything else is working correctly. With ME, that assumption is not necessarily valid.

 

[Wonkmonk]

They're healthy when everything else is working right. ... All the "it's good for you" claims are based on the assumption that everything else is working correctly.

Exactly, that's the point.

I am now avoiding all high-Omega 3 foods and also large amounts of foods that contain some Omega 3 but in higher quantities it adds up. For instance, olive oil contains about 1% Omega 3, which is still 0.1g for about a tablespoon (10g), so a few table spoons here and there and that easily adds up to 0,5-0,7g which is significant. I replaced it with sunflower oil, which contains hardly any Omega 3. I think I get the Omega 3 I need to avoid deficiency from the foods I normally eat, e.g., wheat pasta, chickpeas, mushrooms etc. all have a small amoung of Omega 3, which is likely enough to avoid deficiency.

 

[Wonkmonk]

So things that I currently try to limit or avoid and see how it goes:
- Carb overload (100g max per meal, fiber not included)
- Choline
- Omega 3
- Oxalic acid
- Allium and brassica family vegetables (onion and cabbage), can possibly wash off harmful compounds.
- Hot spices, esp. pepper, chili, ginger
- Kurkuma and cinnamon (possibly because of high oxalic acid content)
- Sources of arsenic (mainly rice, apples, grapes, mushrooms, but I think only in the US)

I just read here that Indian produce can have high levels of arsenic. That may be why I sometimes get the impression that mango causes problems, which often comes from India. So I should avoid mango as well.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9146532/

 

[Wonkmonk]

Hello and Happy New Year to everyone!

The past year was the first year in which I systematically followed the dietary approach after I had suspected for many years that dietary factors play a huge role in my case, but thought it was all too weird to make sense and therefore never followed the approach before.

In the past year, I have seen massive, unprecedented and I would say almost unimaginable improvements. I went from close to very severe (almost no activity, 1-2 hours a day out of bed, almost constant strong pain/discomfort) to moderate-to-severe (out of bed up to half the day, resumed activities like shopping, some hiking and driving a car, pain and discomfort down to minor-to-moderate most of the time),

What is more, at the beginning of last year, it felt like everything was invariably deteriorating over time and my health decline was unstoppable. Then, with the dietary approach, the decline has been stopped and to some extent even reversed.

I do not currently know if the gains will be sustainable and can be maintained if the dietary approach is maintained, but it feels like they can. It does not feel like I will start to worsen again suddenly unless I change my diet again (though there is no way of being certain).

So far, the improvements after each dietary adjustment always plateaued at some point, meaning I improved a bit and then - while maintaining the new adjusted diet - the improvement stopped and I stayed on the better level, but didn't get any better even while continuing the diet.

The key questions right now are:
*Is the best that is achievable a new, better plateau or can I at some point reach a point where I get just a bit better over time (just like I worsened continually over time without the dietary approach?
*Assuming the best I can achieve is a plateauing improvement, how far can the improvements go? Will I at some point be able to live in my own household again (living with mom currently) or work a part-time job?

 

[Wonkmonk]

I also want to take occasion to share my latest updates on the diet.

*It currently looks like I have been wrong all along about oleic/monounsaturated fatty acids. It appears (at least so far) that I can tolerate high-oleic refined sunflower oil. The problem with oil in general seems to be only Omega-3 fatty acids, but that seems to accumulate, so sources that contain little like olive oil or avocado oil cause problems over time. Sunflower oil contains very little Omega 3 and it seems like I can tolerate it, even mixed with high-protein foods.
*I have to restrict lysine. I thought for a while that maybe that's not important, but it turns out it is. I also can't go too low. It appears like a balance must be found. I currently try to achieve that balance by eating occasional hummus or falafel fried in high-oleic sunflower oil.
*Nightshades must be avoided or limited (tomatos). I experimented with ratatouille (peppers, eggplant, tomatos) and it caused strong symptoms. Potatos/fries must be limited or avoided.
*Meal size is important, esp. the amount of carbs, but when I am fasting or getting into a prolonged calorie deficit, I am also worsening, so I must maintain my weight at a BMI of about 22.
*I am not yet sure about plant-based meat substitutes like Seitan or pea/soy protein burgers etc. I have to check them again. The lysine content in the legume-based foods is important though.

A huge challenge has been that I can only find very few foods that cause no or little symptoms and even while limiting myself to these foods, I can only achieve a plateauing improvement so far. The foods that I think are relatively unproblematic are:
*Some types of fruit, plain, entire meal nothing else and 6 hours to next meal (blueberries, blackberries, cherries, pineapple)
*White spaghetti (150g max per meal) with 1-2 fresh pureed tomatos and 2 tbsp of high-oleic refined sunflower oil
*White spaghetti (150g) with mixed mushrooms fried in a low amount of high-oleic sunflower oil.
*Occasional hummus or falafel with bread.

That's not enough foods for a nutritionally adequate and sustainable diet (and only leads to a plateau improvement), therefore I feel like I have to try new things all the time, but whenever I do so, it usually makes me worse.

I do not know how far I can get with this approach or if it will be sustainable at all or if I will relapse regardless of diet at some point, but I can not stress strongly enough that the benefits I have achieved with the approach are enormous.

 

[Wonkmonk]

Maybe just a quick recap what my rules are currently (knowing they will almost certainly change substantially again going forward):

*Avoid all animal products, maybe with the exception of occasional cheese
*Avoid all high-arsenic foods (esp. rice, but also apples, pears, grapes and in the US cremini/button/portobello mushrooms)
*Avoid foods high in oxalic acid (spinach, beet greens, rhubarb, chard, but also whole grains, quinoa, poppy seeds, sesame)
*Have a moderate intake of lysine (1.5-2.0 grams per day is probably ok)
*It's probably best to avoid all nightshades except a low amount of fresh or pureed tomatos occasionally
*Consume fruit in isolation, entire meal must be fruit only. Best fruit appear to be berries.
*Avoid all high-Omega 3 foods (hempseeds, linseeds, chia seeds, walnuts and their oils), but also moderately high foods like rapeseed oil. Limit low-omega 3 foods like olive oil and avocado. Use very low Omega 3 oils for cooking (high-oleic sunflower oil seems to be very good)
*Avoid all leafy greens
*Avoid allium (onions, spring onions, garlic) and brassica (cabbage family) foods.
*Let at least 5-6 hours elapse in between meals to avoid meal mixing in the stomach
*Limit carbs intake to 100g per meal (about 2 pounds of fruit, 150g of pasta, 200g of most legumes in one meal)
*Don't allow a prolonged calorie deficit, keep BMI around 22.

I also want to stress again that all these things are completely worthless if thyroxine replacement isn't managed to keep TSH in a narrow band of 0.4-0.9, which in my case is a daily dose of 162.5 micrograms in the morning on an empty stomach with a 1 hour delay to the first meal of the day. If TSH leaves this narrow band even minimally, no improvement can be made.

It's also important to note that getting one thing wrong makes any improvement impossible, so for instance, following all the rules, but consuming too much lysine will lead to no gains or even worsening.

It also appears that some foods appear to be harmful only when another of the rules isn't followed. For instance, while I was on a high-lysine diet this fall, fruit (isolated in the morning) definitely caused symptoms. Now that I have reduced lysine again, fruit in the morning at 9 o'clock (entire meal, no other foods until 3pm) appears to be unproblematic again.

This maybe illustrates how complicated all of this is. I am 100% convinced that what I have is a specific medical condition and while it is certainly very rate, I am sure that a large number of people have the same thing, but they never find out because selecting the right foods is so complicated.
\
It took me 7 years from the first suspicion that foods maybe responsible to the insight that this is definitely the case.

 

[Wishful]

A very complex dietary nightmare. It's not as simple as rice = good, wheat = bad or some such thing. It can be food A at time X = safe, and food B = safe if eaten at least 17 hrs after food C ... if the day is cloudy and the phone doesn't ring and <something you haven't noticed yet> it's been at least 8 days since you last ate food D. I think the best we can do is to keep trying different things in different combinations, and pay close attention to any changes.

 

[Rufous McKinney]

the problem with potatos

apologies for dropping in.

out of context- potatoes and other root vegetables were part of a diet I went on which FIXED and improved any number of issue tied to joints and digestion.

This diet was recommended to me by my chinese herbalist, to reduce wind. Wind is contributing to my IBS.

Also, many joint problem are wind.

So at the same time I ate lots of roasted root vegetables and lots of potatoes-things got better and many joint issues I was feeling, stopped.

I stopped eating salads mostly at the same time, and Bitter Greens are not allowed, so I was relieved to stop this BS about KALE is a food. NO it's not. Maybe for horses.

 

[Rufous McKinney]

Most of the time, my efforts to BLAME the FOOD, fall through.

I get hugely different results eating teh same EXACT THINGS.

I'd get acute gastroperesis events come on, as if I had food poisoning: dinner was the same food as the day before.

A supplement I"ve been taking, has transformed my ongoing digestive issues and some other ME issues.

I had turkey, a bunch of stuffing, some more stuffing, and a giant piece of nummy bread: and I experienced NO IBS digestive problems what so ever. Then I had pie.

 

[Wonkmonk]

apologies for dropping in.

out of context- potatoes and other root vegetables were part of a diet I went on which FIXED and improved any number of issue tied to joints and digestion.

Hey there, many thanks for the comment, I appreciate it.

I think my problem is mainly because (1) potatos are nightshades which it seems I really must avoid completely as a group with the exception of maybe a tomato here and there, and (2) because I ate too much of it and breached the 100g carbs limit. They are addictive and it's easy to overeat them especially in my preferred form as oven-baked low fat french fries. I love those so much, I will probably occasionally still eat them and just take the symptoms for the next 2-3 days.

Regarding other root vegetables, I have largely ruled them out because of their high oxalic acid content. Especially sweet potatos and beets are high in oxalates.

If you can eat potatos and they even make you better, you definitely don't have the same thing as I do or a very different variant of it.

So glad you found a diet that works for you! I'm still on the journey. Hopfully, 2024 will bring even more insights after the phenomenal success I had with diet adjustments in 2023.

 

[Wonkmonk]

Most of the time, my efforts to BLAME the FOOD, fall through.

I get hugely different results eating teh same EXACT THINGS.

Again, I think your case is very different than mine, so important to keep that in mind, but I personally have made the same observation. For many years, I couldn't link specific foods to symptom flares. It all seemed random and I could detect no pattern at all.

Today, I am certain this is because of the following:

*Some foods cause symptom flares that last for 2-3 days and are often intermittent, so a symptom flare could be triggered by a food I ate 3 days before, but I attributed it to a food I ate that day.

*Monodiets and strict elmination diets (i.e. only eating one or two foods for a few days or weeks and adding single new foods over time) seem to create symptoms as well. There is no one food I can eat all the time, i.e., no monodiet or very restrictive diet worked. That's makes it hard to find out which food caused the symptoms.

*Food isn't the only thing that causes symptom flares. Total calories, meal size, my thyroxine dose and physical activity levels are all confounding factors that can cause symptom flares that will then be attributed to the wrong food.

*Some effects seem to accumulate over time, i.e. for a week or so, it appears the food is perfectly find, but persistent symptoms start after a while. I suspect nightshades, lysine and oxalates cause symptoms only when a certain level has accumulated.

*Some foods/nutrients seem to cause symptoms when too much is eaten, but also when too little is consumed. Lysine is probably one example.

*Some foods only cause problems in connection with another food, e.g., I can tolerate high amounts of blueberries, but when my diet is also too high in lysine, fruit starts to cause symptoms as well.

*The timing of meals seems to matter, i.e., falafel with white bread seems to be quite ok, but when the meal before or after was or is fruit, there is a symptom flare.

*Getting just one thing wrong precludes any sustainable progress. If only one mistake is made, e.g., just eating nightshades, it looks like all other adjustments are worthless or almost worthless. That makes it very complicated because in order to see any sustained improvement, I had to get several of the points right by chance, and even then the benefits were transient, unstable and often not very pronounced.

*The number of acceptable foods/meals (as far as my understanding goes today) is so limited and monotonous that there is always a strong urge to include and test new foods and a strong temptation to eat forbidden foods just to get some variety and pleasure from eating while tolerating the symptoms/worsening.

*People I deal with constantly tell me in a suble or less subtle way that the whole approach is weird and sounds like nonsense.

This is why I thought there is no pattern and this can't be about diet for such a so long time. I suspected the link to certain foods as early as in 2015, but always rejected the hypothesis because the symptom flares could not be tied to specific foods.

OMG, where could I be today had I followed that suspicion consistently back then. I might not have worsened from the 2015 level at all. I might never have stopped working, at least part time.

If only I had known...