Substantial improvement with (strange) dietary adjustments

Wonkmonk

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I have problems with rice too. If I eat it for a few meals I start getting really exhausted and sleepy the following day to the point that I have to take a nap soon after breakfast. I usually don't nap very often. It's something particular to rice that goes beyond it's nutrient composition because Im fine with bread and other grains
Hey there...this is very interesting. I have a very similar experience. I suspect the arsenic in rice is responsible, because I'm also not doing very well with apples in larger quantities which also contain some arsenic.

When I eat rice several days in a row, I get a general worsening of symptoms as well as an akne-type rash on my head, neck and torso. It disappears upon stopping the rice. Rice is out of my diet with very few exceptions (e.g., mushroom risotto every once in a while...too tempting ;))

I can generally eat other grains, but there seem to be problems with large amounts of whole grains, so I switched to white bread, which brought some improvement.

Thanks so much for sharing this. Please continue to share your thoughts and experiences. :thumbsup:
 

Wonkmonk

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@Wonkmonk Do you drink Coke or Pepsi? My digestion and mood seem to get better substantially even with a 100ml serving taken once in the morning with breakfast and lasts the entire day. Only issue is that if I exceed this amount than falling asleep early at night can be an issue.

On white rice, do you strain your rice properly with water to remove excess starch before cooking it? Also after cooking make sure to strain the rice to remove the starchy water.
Thank you for the suggestion. I have found that caffeine containing beverages make me worse. I tried chocolate milk, green tea, black tea, coffee, matcha tea. All worsened my symptoms, so I would suspect Coke or Pepsi would be no different. I might try it at some point though.

I am not sure why removing starchy water from the rice should make a difference, because whatever the preparation method is, there would still be plenty of starch left in the rice after rinsing.

Discarding the cooking water could reduce the arsenic content though...I might try this. Though it feels just not eating rice at all or with few exceptions only is maybe the safer choice. I don't really need rice. I can do with pasta, bread other grains etc.
 

Wonkmonk

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@Wonkmonk, I recommend the book...
Hey there, thank you for the suggestion. I have looked into this theory in detail and I found that lectins are most likely not to blame, e.g., tomatos are said to be high in lectins, but don't appear to be causing a lot of problems, neither raw, nor cooked. Raw rolled oat also contain lectins and don't cause much trouble. Likewise, I can eat peanut butter in isolation (no other foods added) with few symptoms, and they, too, are a high-lectin food.

Conversely, low lectin foods like spinach reliably cause a strong worsening of symptoms.

I looked into the lectin hypothesis in much detail for several months and concluded that my symptoms do not appear to be caused by lectins.
 

Wonkmonk

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There appear to be interaction effects beyond foods. For instance, right now in pollen season, it appears I can no longer tolerate cooked cauliflower with a pinch of ground mustard seeds for sulforaphane conversion. Same with kale. I get very strong symptoms now even from a single meal.

I will try if the mustard seed is the problem, i.e., without conversion of organosulfur precoursor compounds there might not be the same problem.

I also get worse when I have a viral infection, irrespective of what I eat, even if the virus is just present, i.e., my parents who I live with sick, but I still free of symptoms.

My theory is that I have some sort of virally triggered full-body migraines. Migraine headaches can be triggered by pollen, foods, infections and other trigger events. There is a theory that some migrains are triggered by viral reactivation of persisting virusses, e.g., herpes simplex 1.

My hypothesis is that I have a similar thing, but not just in the head, but in the entire body, so symptoms pop up everywhere when the triggers activate the virus.

It would be consistent with this theory that more and more organs and areas of the body were affected over time (heart, head, back, kidneys, tongue/mouth/gums, lungs etc.). I think the virus jumped from place to place and infected more and more parts of the body with recurrent reactivations. Therefore, my condition got worse and worse over time and symptoms appeared in more and more places.

Anyone else made that experience?
 
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I can generally eat other grains, but there seem to be problems with large amounts of whole grains, so I switched to white bread, which brought some improvement.
@Wonkmonk This is interesting, after your oxalate suggestions I started having white bread since it is a good calcium source whilst low in oxalates. At first I could tolerate a few slices per day without ill effects but now I seem to be very sensitive to it and had unpleasant symptoms after just eating 1 slice recently (stuffy nose, waking up in night dehydrated, overstimulated mentally etc). On the other hand, I can eat 10 slices of a seeded loaf in a day without issue and the breads are even made by the same brand. Have you had the experience before of tolerating a high calcium food well but then developing an intolerance to it? Because that has been my experience with many of the calcium sources I have tried.

I was also wondering if you have had your parathyroid hormone levels measured? I was considering taking a test, partly because of the abnormal symptoms following calcium intake but mostly due to the fact I can't even invest 200iu of vitamin d without negative symptoms
 

Wonkmonk

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Have you had the experience before of tolerating a high calcium food well but then developing an intolerance to it?
Calcium is something that has been confusing me for a while. My symptoms regarding calcium supplements and foods fluctuate widely and it seems to me that it depends strongly on what else I am eating, so there is probably a synergistic effect or calcium only causes symptoms when other factors are present.

For instance, All high-calcium foods and supplements caused strong symptoms when I had a high-oxalate diet. Once I stopped most oxalates, calcium and vitamin d was much less of a problem but I still feel I can't go very high with both. So there is probably more to it and I don't understand it yet.

My feeling is that the effect of calcium is someonw contingent on other factors and it's very complicated to figure this out. I am still testing this.
I was also wondering if you have had your parathyroid hormone levels measured?
Yes, I did on several occasions in I think 2014-2018 and I had hyperparathyroidism for a while, but then it was in the norm again. But the hyperparathyroidism (elevated PTH) wasn't very pronounced, so the doctor said nothing needed to be done. I think it was always between 60 and 100, which is slightly elevated according to the reference range.

Interestingly, it sometimes didn't come down much even with high vitamin d and calcium supplementation. But I stopped that because it worsened my other symptoms.

At some point, I stopped asking for doctors to measure PTH, because it always came back in the high norm or slightly elevated and I had no idea what to do about it.


It's strange that you report a sensitivity to even one slice of white bread. I can still tolerate my homemade white pita reasonably well with vegan butter, avocado guacamole (still testing this) and Gouda/Brie cheese. That all works quite well.
 

Wonkmonk

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The latest thing that grabbed my attention is choline.

I can tolerate white bread and cheese relatively well, but when I take a choline supplement with it (250mg citicolin), I get relatively strong symptoms. So Choline + fat or Choline + lysine/protein or Choline + fat + protein/Lysine could be problematic.

The supplement isn't as bad when I take it with a fruit-only breakfast. I will check if I can take it on an empty stomach with 2 hours distance to the first meal. I suspect it's a microbiome thing, maybe TMAO or something and that it needed additional components (fat, protein, lysine ...) for the nocuous reaction to happen.

I am also reacting negatively to plant sources of choline under certain conditons.

Cauliflower (high in Choline) plus white bread: ok

Cauliflower + potatos for breakfast: ok

Cauliflower + potatos for lunch when breakfast was fruit: Not ok

Lentils (high in Choline) for breakfast: ok

Lentils for lunch when breakfast was fruit: not ok

High Choline foods several times in a row: not ok

I suspect that the Choline gets converted to something harmful in the microbiome and that when I have fruit for breakfast, the fructose and fiber causes bacteria to thrive and they can metabolize the Choline that comes in at lunch better.

When I eat high-Choline foods several times in a row, maybe the choline-digesting bacteria multiply better or the nocuous end product accumulates in the body over several meal and crosses a harmful threshold that leads to symptoms.

I'm not entirely sure yet, but Choline is probably a thing.
 

Wonkmonk

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For those who are interested, here is a list of Choline contents of foods from the USDA:

https://www.ars.usda.gov/ARSUserFiles/80400525/data/choline/choln02.pdf
Meat, fish and eggs are generally highest, so maybe that's because my lacto-vegetarian approach (I grudgingly reintroduced cheese and milk to my formerly all-vegan diet) has had some positive effects.

I also found that many foods I am struggling with at least under certain circumstances (see post before) are in fact high in Choline (whole grains, eggs, navy beans, quinoa etc.).
 

Wonkmonk

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I have not noticed having any severe problems with cremini and shiitake mushrooms, but king oyster mushrooms (pleurotus eryngii) definitely make me worse. It might be due to the higher choline content.

One extremely strange effect that I noticed is that I get hypothyroid symptoms when I eat king oyster mushrooms fried in sunflower oil, but not when fried in grapeseed oil. Whatever it is that happens when king oyster mushrooms are cooked in sunflower oil, it seems to mess up my thyroid replacement therapy. When I up the dose, it gets better, so it appears the blood levels do actually fall and it's not just some other effect mimicking a hypothyroid state.

I haven't tried if that happens with creminis or shiitakes only, too. I'll probably just get rid of sunflower oil and go back to grapeseed oil.
 

Wonkmonk

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I am more and more suspecting that choline plays a role in symptom worsening for some foods and that the problem is in the microbiome, possibly trimethylamine or TMAO production or something similar.

I will now try to limit choline intake with food and instead take a citicolin supplement on an empty stomach with several hours to the next meal.

Citicoline is almost fully absorbed, but absorption is slow. When I take it with food, especially foods containing fat and protein, it appears to worsen my symptoms. That effect appears to be less when I take it with fruit only, so I hope that on an empty stomach it might be even better tolerated.
 

Wonkmonk

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I have made two observations:

(1) Very strange: I can eat mushrooms (even a large quantity) fried in a little fat with pasta and nutritional yeast, no other ingredient (it tastes better than it sounds), but only once. If I eat it a few times in a row, I get hypothyroid symptoms. This lasts for several days and is probably dose dependent (more mushrooms = longer effect). These do not appear to be just symptoms mimicking hypothyroidism, but it appears to be actual hypothyroidism, because the symptoms completely resolve if I up my thyroxin dose. When the meals are 48 hours apart, that does not appear to be happening.

I suspect that something is going on in the microbiome in which certain bacteria thrive on mushrooms and/or make something of the mushrooms, but they need a few meals in a row to multiply properly. Something similar has been demonstrated with egg consumption and TMAO. Vegans produce zero TMAO when fed a one-time meal of eggs, but when they start eating eggs regularly, TMAO becomes detectable in their blood stream, because the bacteria making it start to thrive or adapt to the presence of animal-derived choline, it's precursor.

(2) The negative effect of omega-3 fatty acids that I talked about earlier in another post appears to be a meal mixing effect of some sort, not a stand alone effect. I tried this with a provocation test with 50g of flax seed oil on an empty stomach (don't ask me how I did this), which contains 25g or alpha-linolenic acid (Omega 3) - which is a very high dose, the daily recommendation is 3g according to some sources. This should have caused hyperthyroid symptoms, but didn't.

If I eat even small quantities of Omega-3s with meals, I immediately get strong symptoms. So I suspect it's not the Omega 3 per se, but the symptoms only appear if Omega 3 and other factors (likely protein and a carbohydrate substrate) are present.
 

Wonkmonk

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Have a few observations:

1. The hypothyroid symptoms appear when I eat larger amounts of mushrooms, but only when I eat them in the morning. I suspect they interfere with my thyroxine replacement therapy. I can eat mushrooms in the evening with no apparent negative effects.

2. I can eat both choline in large amounts if isolated and distant to the next meal. Choline works both as soy lecithin and citicoline. When I eat it with a meal, there is a deterioration, which suggests that choline is only a problem when combined with other nutrients, I suspect protein and a carbohydrate substrate.

3. Same thing with plant-based Omega-3 (alpha linolenic acid). I can "eat" 50g of flaxseed oil plain - which has about 25g of ALA which is a massive dose with no symptoms. I did it for breakfast with no other foods until 6 hours later. I lterally held my nose and flushed it down with a lot of water. I did this on 2 or 3 days in a row. I downed an entire bottle of flaxseed oil over a week this way with no apparent symptoms. What's interesting: I tried 200g of hemp seed, which has about the same amount of ALA, but also lots of protein and some carbs in the form of fiber. That DID cause symptoms. Same conclusion as for the choline: It's only a problem when eaten with other foods, which I think is that bacteria make something harmful of it, but they need at least protein and a carbohydrate substrate to do it efficiently.

4. I am currently getting 1 hour of full body sunlight exposure every day (we have good weather these days). That should over time bump my vitamin D up to 50 ng/ml, which is the upper reference range. I hope that vitamin d will no longer be a problem when not taken orally and when the dietary rules are being followed.

5. I'm not entirely sure of this, but cooking with refined olive oil (as opposed to extra vergine) appears to not cause symptoms or at least cause less. I always suspected that suspended compounds in the extra vergine oil like oleuropein are problematic.

I am currently struggling with pollen season and I suspect that worsens my condition as well so it's currently unclear if and to what extent I can improve with the latest adjustments.
 

Wonkmonk

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I think mushrooms may be causing the hypothyroid effect even when consumed in the evening. The problem seems to be if they are consumed on consecutive days. I will limit it to 2 pounds of mushrooms every other day or every third day.

I am not sure if this effect only occurs during pollen season because I haven't noticed it before spring this year. I started introducing mushrooms in higher quantities in the second half of last year, so after pollen season. It may be the case that the problem only occurs during pollen season.
 

datadragon

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For oxalates - The liver enzyme AGT is responsible for converting glyoxylate, the precursor molecule to oxalates, into the much-needed amino acid glycine. AGT requires Vitamin B6 to function.
Thus the faster the AGT enzyme is functioning, the more rapidly our liver can convert glyoxylate into glycine, preventing the production of oxalates. And since AGT requires B6, we can see how a bit more active P5P B6 levels may be needed to increase the speed and function of AGT leading to fewer oxalate molecules being formed. high oxalates cause our body to lose Vitamin B6 as well as sulfate. https://www.beyondmthfr.com/side-high-oxalates-problems-sulfate-b6-gut-methylation/

Low vitamin B6 increases urine oxalate/kidney stone risk. hyperoxaluria has been successfully reduced with vitamin B6 (Murthy 1982; Nath 1990; Kim 2014; Mitwalli 1988; Massey 2003). Kidney stone risk was 34% lower in women who consumed the most vitamin B6 per day from diet/supplements compared with those who consumed the least in a 14-year study in 85 557 women, (Curhan 1999). B6 requires zinc, magnesium, and vitamin B2 to convert to the active P5P form. Blood levels may show high from non conversion, if so maybe look into a low dose of active P5P and those nutrients to convert it. Also, Supplementation with high concentrations of the pyridoxine form of Vitamin B6 competitively inhibits the active Pyridoxal 5' phosphate (P5P) form which actually leads to decreased vitamin B6 function rather than enhancing it https://www.sciencedirect.com/science/article/abs/pii/S0887233317301959?via=ihub

Cecal propionate and butyrate were significantly reduced in Low Vitamin B6 rats irrespective of sex. Host vitamin B6 deficiency but not excess significantly alters gut microbial composition and its metabolites. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7693528/

Oxalates can be tested with organic acids test. https://mosaicdx.com/test/organic-acids-test/

Foods especially high in oxalates are often foods thought to be otherwise healthy, including spinach, beets, chocolate, peanuts, wheat bran, tea, cashews, pecans, almonds, berries, and many others. People now frequently consume “green smoothies” in an effort to eat “clean” and get healthy, however, they may actually be sabotaging their health. The most common components of green smoothies are spinach, kale, Swiss chard, and arugula, all of which are loaded with oxalates. These smoothies also often contain berries or almonds, which have high amounts of oxalates as well. Oxalates are not found in meat or fish at significant concentrations. Daily adult oxalate intake is usually 80-120 mg/d. A single green smoothie with two cups of spinach contains about 1,500 mg of oxalate, a potentially lethal dose.
 
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Hi, so I remember you mentioning that you react badly to too much fat. Are your symptoms for that similar to when you intake too much calcium? I have just recently started having the same reaction I get to vitamin d and calcium but with refined fats, ever since `I ate around 50-60g sat. fat from coconut cream one day and my body seemed to develop an intolerance to it. Have you also considered if your reactions could be MCAS related at all? I have just started looking into this as a possibility for all these bizarre reactions I get.
 

Wonkmonk

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Hey @Wonkmonk how are you doing now?

Hey there!

Quick update:

I haven't improved further over the course of the summer, but I think this might be because I had too much sun exposure (vitamin D). I think my vitamin D must not exceed 30-35, otherwise I can no longer improve. I will have to see in the fall when levels slowly drop if I can improve further (vitamin D has a half life of 3 months).

A few more observations I made:

*Oxalic acid in any form makes me worse that includes regular vitamin-C rich foods like mango, I suspect because vitamin c gets converted into oxalic acid.
*Choline makes me worse, but only when combined with a protein and/or possibly carb source. I can (hold my nose and) eat spoonfuls of lecithin, which basically is pure fat with choline, plain without any worsening. But foods like eggs and meat which have a lot of choline and protein make me worse. In fact, the only animal product I can eat is cheese which ... drumrolls ... has very low choline.
*It seems to help an alpha-galactoidase digestion enzyme ("Beano") when I eat fruit (plain, entire meal fruit), especially for bananas, avocados and apples.
*I have to switch meals for some reason. Plain fruit 3x a day makes me worse, but one meal a day is about ok.
*It appears I have to limit the amount of carbs in one meal as well as carbs as a % of total calories. 150g of pasta in one meal seems to be ok, but more appears to cause symptoms. Overall, ever 2nd or 3rd meal should have some significant fat or protein in it and not too many carbs (which is difficult given how few foods/meals I can eat).
*The summer heat is detrimental. When my room is warmer than 24 degrees C, I get worse.
*Infections make me worse and it's impossible to improve while I have a latent or overt infection or recovering from one. It can take several weeks, so if possible should be avoided.

I currently suspect that I can eat the following meals with no or without much worseing, if at least 5-6 hours apart (meal mixing in the stomach is a problem).

*Plain low-oxalate fruit (3 pounds) with alpha galactoidase enzyme (no more than once a day). Blueberries, apples, bananas, fresh figs, cherries all work fine. Ananas and mango occasionally because of high vitamin C.
*White Spaghetti with pureed fresh tomatoes (White spaghetti, fresh tomatos, salt)
*White bread with cheese and mayo (homemade white pita - white flour, salt, oil, water, yeast - gouda or similar chees, vegan mayo).
*Avocado-banana puree with alpha galactoidase enzyme (fresh or frozen avocado, fresh bananas, both at ideal ripeness, not too old)
*Plain fries/potatos fall to spring only (potatos, a little oil - perhaps best not to have any - salt). I take alpha galactoidase with this, not sure if it does anything.
*Green beans and fresh tomatos (and salt), cooked for 1 hour. I take alpha galactoidase with this as well.
*Mushroom pasta (fried cremini and shiitake mushrooms in tiny amount of oil - with water cooking method -, white pasta, nutritional yeast, salt)

That's basically all I eat right now.

I will not improve for another few weeks, because I have an infection and still too high Vitamin D. I will see in the fall if I can still get ahead.
 

Wonkmonk

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I think I have made an important observation regarding oxalate.

First, french fries, vor some reason, appear to be very high in oxalates even with the skin removed. Potatos in general have quite a bit, cooking in copious amounts of water seems to remove some of it, but even after that, it's still high.

I thought potatos (in any form) were ok (with Beano) and ate them a lot in the past weeks, sometimes twice a day (entire meal potatos or fries, nothing else). But that gradually worsened my condition and I think the oxalate is to blame.

But the curious thing is how long it took until the worsening was felt. I am now convinced it's not the oxalate itself that's causing the symptoms, because then I could neutralize it with a high dose of calcium in the same meal. Calcium binds to the oxalate and with high calcium in a meal, hardly any gets absorbed. So with calcium, the worsening should at least be less, right? This is not what's happening. One of the worst crashes I ever had was after eating spinach lasagna with tons of calcium (cheese). Spinach pasta on the other hand was better tolerated...same oxalate, very low calcium (but also lower proteine/lysine, which I think is why it caused less problems). So more symptoms from spinach lasagne (which is basically spinach pasta with cheese) means the amount of absorbed oxalate likely plays no role. It's a microbiome thing.

So what I think is happening is that the problem is a bacterial fermentation product made of the oxalate (probably needs/does better with carbs, fat, protein, esp. lysine) and that product seems to slowly accumulate in the body and not cause symptoms until a certain level has been reached. Once that is the case, symptoms persist for weeks after stopping the high oxalate foods. I also think having the oxalate for several days in a row makes things a lot worse, presumably because the oxalate-eating bacteria can multiply and produce more of the problematic compound.

Therefore, I think 1-2 high-oxalate meals a week might be ok. Welcome back, Hummus 🤩 (sesame is super-high oxalate).

If I eat high oxalate only once a week, it may not be enough for accumulation and the bugs that cause the problem might not multiply.

My problem is that because all animal products except cheese are forbidden, I have very few options for very low oxalate meals. Almost all plants and fungi have some amount of oxalate. Only oils (which I also feel I have to avoid) and animal foods have none. That makes it hard to limit/avoid it.
 
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