Substantial improvement with (strange) dietary adjustments

Wonkmonk

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Another word on calorie deficits. This is not as straight-forward as it sounds.

When I have a calorie deficit for a few days in a row by eating less and otherwise being at home/in bed, I get strong symptoms and the higher the deficit, the stronger the symptoms are. BUT: On some days, I can go on relatively long hikes. When I go on a hike on an empty stomach and don't eat for several hours (plus physical activity) without eating anything, I usually get no or only mild symptoms, even though the calorie deficit is relatively high.

From this, I conclude the following:

(1) Symptoms are probably not (primarily) triggered by ketones.

(2) Symptoms are absent or attenuated by physical activity during having the calorie deficit.

Interestingly, (2) should actually worsen things because it causes an even higher calorie deficit. So I think the trigger isn't the calorie deficit per se, but it is blood sugar-related. Mobilization of glycogen during exercise/physical activity seems to counteract it.

While interesting to explore, all in all, the theory behind it is actually irrelevant. The bottom line is clear: Avoid larger calorie deficits over more than a few days.

Btw, that doesn't mean I can't lose weight or be slim. I can have small calorie deficits and larger ones over just 1-2 days. With this and good food selection, I can at this point keep my weight in a healthy range (BMI 21-23).
 

xploit316

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My advice would be to see if you can replace these with other starchy foods. For instance, switch from white bread to wholegrain bread or swap with overnight-oats. White quinoa is an excellent replacement for rice, as is bulgur or millet. All are much healthier and richer in fiber and nutrients in general.
Thanks Wonkmonk, I forgot to add I don't do well with high starch and high fiber foods (Bloating, fatigue, joint pain type symptoms) and that's why I do that specific diet outlined above. The parboiled rice I use is from Thailand, so hopefully the arsenic content will be low.
Third, for me, going largely oil-free was a real game changer for weight-control.
I tried going Oil free at one point, didn't have any difference on my weight.
Fourth, some weight-loss champions seem to be completely absent from your diet, for instance, legumes, leafy greens, apples or tubers/root vegetables. These can all be eaten cooked without much oil,
Agree, but legumes problematic due to the starch for me, leafy greens I use some fresh coriander and dried fenugreek, dont do well with lettuce, spinach, kale etc. Fruits I forgot to add above, I have a Orange and some blueberries 1-2 times a week.
Sixth, if the above is your diet every day, it is quite rich in animal protein (meat and eggs every day). This is generally not so good for insulin sensitivity. Maybe it would be worthwhile to reduce animal food sources a bit, e.g., only every second or third day.
I will try this.
 

Wonkmonk

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Thanks Wonkmonk, I forgot to add I don't do well with high starch and high fiber foods (Bloating, fatigue, joint pain type symptoms)
Haha...stupid me forgot we're in a thread on "strange dietary adjustments" and gave advice for "normal" people, so all of this was totally unhelpful LOL. Of course, there is a reason, why you have this diet including rice and white bread (just as I myself feel forced to eat white bread and white pasta). I should have known. My apologies.

That being said, the bad news is, when high starch and high-fiber foods are largely off the table, I can see how it can be very difficult to control one's weight, especially without being hungry all the time.

In "How not to diet", a main part is on how hunger is controlled in humans. It's influenced by several factors, among the most important are:
(1) Continuity of changes in blood sugar: Foods with a high glycemic index lead to a spike and subsequent precipitous drop in blood sugar levels, which makes you hungry again.
(2) Presence of fat in the lower small intestine: If unabsorbed fat is present in the lower small intestine, that sends a powerful satiety signal
(3) Food volume: Larger meal size and the stretching of the stomach and small intestine after eating high-volume foods is also a strong satiety signal. Heard of people who eat just once a day and say they aren't hungry? Is probably this effect that the one very large meal they eat fills the digestive tract up and the body downregulates hunger.

Now the problem is, if high-fiber foods are off the table, you can't really address any of them.
(1): Rice and white bread are famously high in their glycemic index. In fact, white bread is the reference food set at 100 and very few foods are higher. Most plant-based low-GI foods that I know of are high in fiber. So that's a tough one.
(2) Added oil is digested too quickly and often doesn't reach the lower small intestine for that effect to play out. It is usually recommended to eat nuts and seeds, e.g., chunky peanut butter. Undigested larger chunks end up in the lower digestive tract and can trigger the satiety signal. Not sure if that's something that would work for you.
(3) It's generally hard to find high-volume plant foods that aren't also high in fiber. A relatively low-fiber fruit that just entered my mind is watermelon, so that could be used to generate more volume. If possible, increasing the vegetables part of the meals would also be worthwhile, though they also have fiber.
Fruits I forgot to add above, I have a Orange and some blueberries 1-2 times a week.
Not sure how practical or desirable it would be for you, but if fruit can be tolerated in larger amounts, I have made excellent experiences by replacing entire meals just with fruit (nothing else). This really helps because such a meal is very low in fat and a good amount of the carbs never see your blood stream because the gut bacteria metabolize them before absorption, so you are actually eating fewer calories than it looks like on paper.

Have you looked into FODMAPs as a reason for your intolerance of high-starch-high-fiber foods? Sounds a bit like that could be a factor.

Last thing I could think of, though animal foods generally aren't healthy, too much weight isn't either, and from a weight loss perspective, it might be worthwhile trying to replace some of the rice and white bread, which both is pure poison for weight control, with animal foods, so more eggs, meat, cheese. So maybe two slices of bread and more eggs (if doable).

Could you replace the rice with white pasta? It's MUCH better physiologically for a whole host of reasons.
 

xploit316

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Last thing I could think of, though animal foods generally aren't healthy, too much weight isn't either, and from a weight loss perspective, it might be worthwhile trying to replace some of the rice and white bread, which both is pure poison for weight control, with animal foods, so more eggs, meat, cheese. So maybe two slices of bread and more eggs (if doable).
Thanks Wonkmonk. I read one of your posts again and like you, weight loss also has some negatives for me, most notably Hair loss. With this weight gain, one big positive is my hairline is nice and thick for my age. But it would be nice to loose some weight and waistline while keeping the hair.
One big breakthrough I had some years back was cutting off Potatoes completely from my diet (havn't re-introduced Potatoes since). This 1 change made me loose around 4 kgs in around a month, though I regained it all back and more back later fairly quickly. I have also noted that last time I fell ill with high fever in '23, I lost 3 kgs during that week. I wouldn't want to make myself sick again just to loose weight which I regain back anyhow without effort, but maybe the immune system working to kill the infection might had to do something with it. I will try to reduce my rice consumption per meal by half, but i have to tell you honestly it will be tough ask.
 

Wayne

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When I go on a hike on an empty stomach and don't eat for several hours (plus physical activity) without eating anything, I usually get no or only mild symptoms, even though the calorie deficit is relatively high.
Hey @Wonkmonk -- Thanks for your continuing posts. I find them interesting, and can relate to much of what you share. Regarding your hiking on an empty stomach, here's my little story.

I very gradually shifted over into what they call "intermittent fasting" regimen a couple of years ago. One of the reasons for that decision was my history of feeling better when I did various other fasts and partial fasts. One of the benefits of fasting is the body goes into a state where it can initiate autophagy. Here's a quick AI definition:

Autophagy is a cellular process in which cells degrade and recycle their own components—like damaged proteins, organelles, or other cellular debris. This helps maintain cellular health and energy balance.​

I've long felt this was a big part of why I generally felt better when fasting. One thing I learned when researching Intermittent Fasting (I prefer to think of it as strategic eating), is that the benefits of autophagy increase quite substantially when exercising after not eating. 18 hours is what comes to mind as a "sweet spot".

I did a search on this thread to see if you had mentioned autophagy at any point, and noticed you hadn't. So thought I'd mention it. It might be the reason you're able to exercise on an empty stomach and not deal with serious PEM afterwards. I think that's the case for me.

I feel doing my "strategic eating" regimen has benefitted me in a variety of ways. One thing I'll mention is that for most of my life, I've had a lot of phlegm, and spent a lot of my morning shower clearing out much of it. I no longer have that issue. I have very little phlegm, and it's quite amazing to me that's the case after spending a lifetime being almost chronically congested.

I attribute that to my digestion having a chance to rest, which is now approx. 16 hrs+ per day. With that rest came digestive improvement. And with that improvement came my ability to better tolerate a wider range of foods. It generally goes the other way, where we develop more and more food intolerances as we age. But in my case, I was able to reverse that.
 
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Rufous McKinney

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I wouldn't want to make myself sick again just to loose weight
I lose weight during episodes of severe gastroperesis "flu". Can't eat for days, then afterwards don't want food for weeks.

But I've been doing better so those events haven't happened lately, Hurray.

My main alternative for weigh loss is resume eating Half of Everything.
 

Wonkmonk

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Regarding your hiking on an empty stomach, here's my little story. ...
Hello Wayne,

Thank you so much for sharing your experience. Even though I haven't found someone who presents with the same condition as I have, one can clearly see that diet and eating patterns are an important and possibly underestimated topic in the broader CFS/ME community.

I have in fact thought of autophagy, and my first thought was, when my illness is caused by an intracellular viral infection, maybe letting the body dispose some of its own (infected) cells would make things better, but this is not what happened when I get into autophagy territory. When I do it through longer periods of fasting, I clearly get much worse, and when I do it through shorter fasts and exercise, I get a little worse or not much happens, but it never got better. Today, I operate on the assumption that sustained calorie deficits are harmful for my condition, possibly because the virus thinks the host is starved and uses this as a reactivation trigger.

I attribute that to my digestion having a chance to rest, which is now approx. 16 hrs+ per day.
Very happy to learn that intermittent fasting helps you. That suggests that meal size and carb load do not seem to be a concern for you or cause symptoms for you. Sadly, they do seem to matter for my condition and intermittent fasting (calorie deficit not allowed!) would mean to have larger and possibly more frequent meals in the remaining eating window. I have experimented with intermittent fasting, but never found a benefit or it seemed to in fact be detrimental.

Of course, that doesn't mean it's not good for you. If it works for you, fine, go for it. I am sure it has benefits for many people both inside and outside of the CFS/ME community.

Why is that, I'm curious?

I lean towards eating more protein as I seem to run on it better.
Protein is great, but the source seems to matter. Plant protein is good, whereas animal protein - especially excessive amounts - is harmful in many ways, including for insulin sensitivity. I don't know what the mechanism is, but there are studies that say so:

"In healthy subjects, animal protein intake intensifies insulin resistance whereas plant-based foods enhance insulin sensitivity. Similar effects have been documented in patients with diabetes. Accordingly, pre-pregnancy intake of meat (processed and unprocessed) has been strongly associated with a higher risk of gestational diabetes whereas greater pre-pregnancy vegetable protein consumption is associated with a lower risk of gestational diabetes. Population groups that modify their traditional dietary habit increasing the amount of animal products while reducing plant-based foods experience a remarkable rise in the frequency of type 2 diabetes. The association of animal protein intake with insulin resistance is independent of body mass index. In obese individuals that consume high animal protein diets, insulin sensitivity does not improve following weight loss."

https://www.sciencedirect.com/science/article/abs/pii/S2405457719303146

The same seems to be true for animal fat, where the mechanism is better studied. Details here:

 

Wonkmonk

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Not sure if I've ever done it in this thread, but maybe it's worthwhile making a list of the symptoms I had/have and when they appeared. With the latest dietary changes, some of the symptoms seem to gradually disappear, so if hopefully that trend continues, I should maybe write them down now so I don't forget any.

So here's the list in the order in which the symptoms appeared. It's important to stress, that symptoms that started later really were completely absent in the years before. The gradually took over my body, step by step, one part at a time. I should also note I am not 100% sure about the chronology, so if anyone has the exact same thing, it could appear in a different order.

Generally, almost all of these symptoms remained until today once they had appeared. With very few execptions (e.g., joint pain in some areas), no symptom ever disappeared again.

First noticable symptoms, right after the suspected onset of the disease in 2007. Importantly, this was before my thyroid surgery:

*Mild fatigue: I knew something was off and let a doc take bloodwork because of it (all normal), but it was really mild at that point, I still worked full-time easily and pursued an ambitious a career in a multinational company.

*Feeling "hot": I noticed that I felt uncomfortably hot at temperatures when others were still comfortable. For instance, in the office, I removed my shoes and always wanted more airconditioning than everyone else and because of that used a single-person office at times. People told me they thought that's strange.

*Deteriorating overall work performance: While I was still able to pursue my career for several years, my performance deteriorated substantially. I was rated among the best performers in our division by my superiors in the summer 2007 and thereafter dropped to the midfield.

*Eye problems and dark eye circles: I constantly had bloodshot and dry eyes for no apparent reason. Dryness was so severe that I sought treatment from an ophtalmologist (who gave me eyedrops, but had no other idea what to do). Since the summer of 2007, I also have dark circles under the eyes that have never disappeared and are present even today.

*Mild-to-moderate anhedonia: Anhedonia is the feeling that all sorts of activities in life that were perceived as pleasurable are no longer perceived as such or much less so. I just couldn't enjoy things like meeting friends, playing games, watching movies, gaming, meeting friends, good food and restaurants in the same way as before. If I would have to describe it, I would say life felt "bland" and not much worth living. Importantly, this was NOT a depression, I wasn't sad or depressed, I was motivated, pursued a career, at that point I still was optimistic about my future. Anhedonia isn't depression. It's something different.

*Loss of libido and sexual sensation, but not erectile function: This was perhaps the one symptom that really gave me pause and made me think something is really off. Starting in the fall of 2007, I basically lost almost all of my sexual desire and also my sensitivity to sexual stimuli. Importantly, erectile funktion was still very much intact. It was the feeling, not the technical function, that was almost completely gone.

Notably, before the thyroid surgery, all symptoms were mild, I was functioning, I had a career, an apartment, despite the difficulties tried dating. I never was in any form of pain before the thyroid surgery. Not headaches, no joint pain, no nothing.

Slow, but steady deterioration up to the thyroid surgery in 2014:

*Heart palpitations: Starting in 2008/2009, I felt my heart pounding, which I never did before. My resting heart rate fluctuated between >100 and <60. This made me so concerned I sought an appointment for a heart exam. All normal, according to the doc.

*Brain fog: Brain fog started in 2008 and I can remember that I once called a relative who works in medicine and asked him if this could be a brain tumor or something else that's serious.

*Deteriorating work performance: in 2009/2010, my brain fog and fatigue had worsened to a degree that one of my superiors told me he sometimes thought I was apathetic during meetings. I was still able to function, but no longer to really perform in my job. Shortly after that, I switched to a less demanding position.

*Sleep quality: I am not sure if at that point I already had difficulty sleeping and not feeling rested in the morning. I think I did.

Since all doctors I visited said everything is completely normal, I stopped trying to find out if I am sick. While symptoms were present, they were still so moderate and unspecific that I thought, maybe this is normal, maybe it's too much stress, maybe I am just getting old. Still, I had no pain whatsoever anywhere in the body.

It is important to note that until after the thyroid surgery (about in 2015), I never noticed any intolerances to any foods.

(to be continued)
 
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Wonkmonk

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(cont'd)

Catastrophic deterioration after thyroid surgery 2014:

Until 2014, most of the symptoms (brain fog, fatigue, work performance issues, heart palpitations) had worsened to a degree that I thought it's impossible that this is normal. I went to an endocrinologist who found I have hyperthyroidism because of disseminated autonomous tissue and recommended a complete thyroidectomy, which I underwent in the summer of 2014.

Immediately upon starting thyroid hormone replacement, my condition worsened catastrophically. Many new and very severe symptoms that I had never experienced before developed within weeks of starting thyroxine treatment.

*Dramatic worsening of all symptoms: All symptoms I head before the thyroid surgery worsened dramatically right after starting thyroid hormone therapy. Especially the fatigue got so bad that although I tried on and off to work again in 2014 and '15, I was basically unable to work right after the surgery from the fall of 2014.

*Debilitating headaches: A few weeks into hormone replacement therapy, I started to have severe headaches for several hours every day in the morning after taking the thyroxine pill. The headaches were incapacitating. While they lasted, I couldn't do anything else but to wait until they stopped.

*Joint pain: Severe joint pain developed over the next few months, which at times were so severe that I could only walk with one stiff leg. I was unable to bend the leg at all.

*First signs of food intolerances: At the end of 2014 and going into 2015, I suspected for the first time that dietary patterns could affect my symptoms. For instance, I had the feeling that I do badly after fried potatos and on a high-carb diet. Because of that, I ended my almost 10-year long vegetarianism because I thought I needed more foods low in carbs.

In the following years, I tried all sorts of medications, most or all of which are documented in my other threads on this board. None really stopped the decline. I deteriorated strongly over time and the following symptoms appeared and as far as I can judge, none has disappeared so far. After 2016, my recollection isn't good enough anymore to put the symptoms in a chronological order, so I can just give a list:

*Weakness and fatigue to the point of almost complete bed-riddenness (starting in 2016)
*Pain in the lower back to the point sometimes resembling a severe lumbago that made me unable to walk or even move without pain.
*Recurring pain in the kidney area (both sides)
*At times severe chest pain
*Swollen fingers
*Swollen feet and lower legs
*Swollen tongue
*Geographic tongue (maybe related to experimental intravenous antibiotic use as proposed by Dr. Lerner)
*Transient complete erectile dysfunction, sometimes lasting for months (but then occasionally gone again)
*Gum disease with inflamed gums for months and irreversible gum recession on the front teeth
*Pain and a burning sensation in the lung and at times difficulty breathing
*Chronic bronchitis with constant need to clear mucus from the lung and difficulty breathing, occasionally with a mild cough
*Ganglion on the left wrist
*Chronic gastrointestinal upset, stomach and intestines "bubbling" with mild pain and lots of gas forming
*Recurrent rash on the legs near the shin bone (a few times a year)
*More severe PEM, which was mild or largely absent during the first years.
*A few times stronger-than-usual anhedonia/mild-to-moderate depression

Until 2021, there were more and more symptoms over time. They always stayed, very few ever disappeared again, some got better (e.g., headaches) but still stayed and never went away. More and more new symptoms developed over time and my condition worsened steadily.

Since 2021, I am doing the dietary approach detailed in this thread, and for the first time, this dynamic has been reversed. I am getting better the more I find out about how I have to design my diet and eating patterns to best manage this disease. For the first time, it seems like some symptoms may disappear altogether, e.g., I haven't noticed any pain in the kidney area for weeks. Right now, it seems like this one is gone.

Unfortunately, so far, I am only reaching higher and higher plateaus. My symptoms improve, but only up to a point and then stay there and oscillate around the new state, becoming sometimes more sometimes less severe. My hope is that, as I was worsening steadily before 2021, I can at some point reach a point where I would be steadily improving and symptoms would disappear completely. This could lead to full remission or even a cure over time. I would not rule out that this is possible, but I have no way of knowing how likely or unlikely that is.

If I can't get to that point, it currently feels like I could manage the disease long-term with the dietary adjustments I made. I am currently seeing no indication that the dietary approach would at some point stop working and I would deteriorate again, though of course, that's a possibility. So if I can't get on a continual improvement path, I would hope to reach a plateau that's as high as possible and then hopefully staying there. I would then probably have to follow the current restrictive diet for my entire life, but I would think this is doable given that I could relax some rules since I stopped drinking water after meals.

I will continue to report my findings in the hopes that at some point, someone who has exactly the same problem will read this. Had I had this thread 10 years ago, I would never have lost my job and I could probably have lived a relatively normal life.
 

Wonkmonk

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A few more observations:

1. Calorie deficits: It is absolutely essential to avoid prolonged calorie deficits over several days or weeks. On more than one occasion (one in the past few weeks), they triggered a very strong deterioration in symptoms and that took almost 2 weeks to reverse after adequate caloric intake was restored. Interestingly, symptoms from a calorie deficit are quite special, with the most important one being sleepiness/somnolence, sometimes for 2-3 hours during the day. I literally just fell asleep as if I had been put under anesthesia.

2. Overall carbohydrate intake: High carbohydrate intake per se does not seem to cause symptoms, but only under specific circumstances (see 3.). I am still splitting meals up in two halves, but not really sure if it's actually necessary.

3. Triggers and enhancers: I have the hypothesis that some foods or eating patterns trigger symptoms whereas others only enhance symptoms when they have already been triggered. This is all preliminary, but I identified caloric deficits, an inappropriate thyroxine dose (too high or too low) and harmful fermentation products (discussed at length in this thread) as the main triggers of symptoms. On the other hand, calcium intake, carbohydrate intake and possibly some plants like nightshides seem to fall in the enhancer category, meaning they only cause a worsening of symptoms when symptoms have already been triggered, but do no or not much harm as long as triggers are avoided.

Especially (3) seems promising, I will explore that further.
 

Wonkmonk

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High carbohydrate intake per se does not seem to cause symptoms
I think I have to retract that statement. High carb intake over a longer perior (at least several days to a week) does seem to have a negative effect, especially if all meals are high carb. I can only speculate what the mechanism is. Maybe the carbs feed the virus and even in the absence of reactivation triggers, it still multiplies more. Or - I think more likely - the bacteria (likely lactic acid bacteria) that make the harmful compounds thrive because they have so many carbs and since they probably make a certain amount of harmful stuff irrespective of diet (no meal is completely devoid of protein, choline and fat), over time, when they are too plentiful, they make enough to cause symptoms even without a reactivation trigger.

Regular high(er) fat meals: I will try to address this problem by having at least one meal every second day that contains a higher fat content. This reduces the carb load overall and probably also stifles lactic acid bacterial activity as everyone who is baking knows, a dough with a higher fat content will rise less quickly.
 

linusbert

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Sixth, if the above is your diet every day, it is quite rich in animal protein (meat and eggs every day). This is generally not so good for insulin sensitivity. Maybe it would be worthwhile to reduce animal food sources a bit, e.g., only every second or third day. This should still be nutritionally adequate.
i would say this is probably not correct.
actually my advice to treat insulin resistence for normal people is to have a food based around these.

there is one big difference between plant and meat proteins though, that is that many animal proteins are methionine rich and have less glycine and the plants are the other way around. if diet consists of too much methionine and too less glycine , the optimal ratio is 1:2 or 1:3 even, increased aging and homocystein can rise which is bad.
(some people eat methionine restricted diets to be younger, but i think the better choice is having going glycine intake adequatly up).
gelatine is very glycine reach, so eating the whole animal including skin would correct the bad meth/glyc ratio. only eating muscle meats drive up the methionine.

the solution is, to keep the glycine in the optimal ratio by either supplementing or eating stuff with it, and also keep the methylation vitamins optimal, maybe needing even b12, folat, b6 supplementation, but b12 comes along meat, and folat comes with greens/vegetables and b6 is also among some fruits like bananas.
so meat + greens = good choice.

of course i assume best possible animal food, free range grass fed organic etc. no industrial meet, no chemicals etc. its better to not eat meat than industrial meat.
but this is also true for industrial greens! just kick big food out of your diet if possible, probably the most effective choice to improve health.

also the above is only true if you are not allergic to meat, eggs etc. if you are allergic to a food you should not eat it, because its fueling silent inflammation. no matter if animal or plant bases.


everything driving silent inflammation can lead to insuline resistence, a few examples:
- fructose especially unnatural fructose like fructose-glucose-sirup as added ingredient -> this is the fastest way that even healthy persons can get insuline resistence pretty fast
- industrialized food
- oxidized food and fats (probably most industrial oils and fats)
- microwaving fats like eggs -> drives up AGEs and oxidation, putting eggs into microwave is a bad choice, and in general i would avoid microwaves all together.
- bad omega6:3 ratioed fats
- high Glycation Endproduct (AGE) foods
... and many more.
(if your life is based around a microwave, replace it with a little oven, looks the same, just takes longer to warm up but does it in a more healthy way).



regarding insuline resistence, its important for normal healthy people to foods with low Insuline Index, because thats how much insulin the body will produce in response to food. often high sugar or high animal protein can have high insulin index, like beef. but other animal foods like egg yolks have insane low insuline index, whole eggs are somewhat higher but still have low insuline.
its because some proteins transform to sugar therefore causing higher insuline response. so you can have a beef steak without any carbs, just fats and proteins and still get insuline spike.

fun fact: noodles like spaghetti are on the lower side of the insulin index, thats good, pasta is good choice and safe if no weird chemicals. white bread on the other hand is bad.
so eating noodles with eggs or just egg yolks is a lower insulin food despite the carbs.
also saussage is low in insulin response.

but that said, blood glucose can pushed down if eating low carbs or low glyx foods with animal proteins which produce high insuline. but this is a highly individual experience can be good for some and bad for others.
for example i am diabetic, my hba1c and all blood parameters improve with lower glyx but high insulin index foods. so pasta + eggs = lower blood sugar for me.

also some foods can improve in glyx and insuline index by cooking, then letting cool off, like potatoes or pastas.
so cooking potatoes, put them in the fridge for 12 hours and then eat them (even warming up does not reverse this) is much better. so high insulin index food becomes are low or mid insulin food and even provides resistent starch for gut health and gut energy! (though careful with SIBO)
 
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Wonkmonk

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@linusbert, thanks for pointing this out, there are a variety of opinions on whether and to what extent animal protein is bad in the diet.

For my specific conditions, it seems to often cause symptom flares, with the exception of milk protein. Worst seem to be eggs and red meat.
 

linusbert

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@linusbert, thanks for pointing this out, there are a variety of opinions on whether and to what extent animal protein is bad in the diet.

For my specific conditions, it seems to often cause symptom flares, with the exception of milk protein. Worst seem to be eggs and red meat.
you seam to have a individual reaction to those, thats personal happens not so rarely especially in the chronic sick sphere. do not eat anything you are react to. but in general people eating eggs, bacon etc. are living a happy and long life. but those general recommendations can be wrong for you and others.
despite all the talking about cholesterol, there is no finding but the finding that people are not living shorter when eating those, and many things point to longevity.
i dont think opinions are the matter here. there is just no base to make a general population claim about isolated macro nutrients. most research about isolated macro nutrients arent right either, like the lies about cholesterol which now even government agencies reversed on.

there is a scheme running in nutrition science, one isolated nutrient like cholesterol is taken, some weird studies show something. now they make the claim that everything cholesterol is bad without any actual study proving that.
this is also for example for methionine where restricting it leads to longevity.
or saturated fats...
or meat is unhealthy in general, when actually only industrialized processed foods with bad additives is.

https://pubmed.ncbi.nlm.nih.gov/32132002/
not finding the actual pubmed studies anymore , but this is one.
 
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Wonkmonk

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those general recommendations can be wrong for you and others.
Yes, absolutely, I would expect that only very few people, even only few with CFS/ME, benefit from the dietary and eating patterns I have found have benefitted me a lot. I think this is a very rare condition, even among the CFS/ME population. A niche within a nicht. But I am certain it's not as small as 1 in 8 billion. I am convinced I am not the only one on the planet who has this. That's why I am continuing to update this thread.
 

linusbert

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Yes, absolutely, I would expect that only very few people, even only few with CFS/ME, benefit from the dietary and eating patterns I have found have benefitted me a lot. I think this is a very rare condition, even among the CFS/ME population. A niche within a nicht. But I am certain it's not as small as 1 in 8 billion. I am convinced I am not the only one on the planet who has this. That's why I am continuing to update this thread.
i have myself a not good diet i would not recommend normal people to try out, but you gotta eat what keeps you alive... for now.
 

Dysfunkion

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i have myself a not good diet i would not recommend normal people to try out, but you gotta eat what keeps you alive... for now.

Well obviously if you don't eat well you're not going to feel well, that goes for everyone anyways but with ME/CFS it gets really wacky. We tend to feel better with very unconventional diets and have all sorts of seemingly random often sensitivities. I would for example love to adopt the most traditionally healthy diet but my digestive system doesn't even work correctly and hasn't for the past 12-13 years now no matter what I tried to adopt and even before then things weren't great through my childhood/teen years with my digestive system/nervous system.

I for example also have a lot of quirks with how my body/immune/nervous system reacts to ultra specific foods and even preparations like others in this giant topic. I've gotten less reactive since the enzymes I put myself else on (serrapeptase and caricain) and the red light therapy. I just made a blog post on the recent update on that and found a very odd intersection between my extended food reactions and to the red combo light on my head (didn't try on my belly but arms/legs have no reaction to it). My recent bad reaction was to black pepper specifically which triggered the main chain reaction of symptoms after a weekend of not eating great. But how did RLT benefit it? Nobody knows. This condition is a multi system mystery where you never know where one thing begins or ends. Just as soon as you think with a dietary chain reactions you have something solid figured out it sends you a curve ball. I have been constantly experimenting longer than I been here with my body since I first began to get severely ill over 12 years ago now and couldn't live without supplement backup and I still don't entirely know what is going on.
 

Wayne

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Ashland, Oregon
I would for example love to adopt the most traditionally healthy diet but my digestive system doesn't even work correctly

Hi @Dysfunkion -- I find your descriptive posts to be quite interesting. Occasionally I'll run it by AI, and see if I can get some explanations or nuances about what you describe. This is what I got today, and was especially intrigued by the part I underlined:

The writer highlights how conventional healthy diets don’t always work for people with ME/CFS, and how food sensitivities and reactions can be very individual and even change over time. That’s a common experience among many with chronic illnesses involving immune and nervous system dysregulation.​
 

Dysfunkion

Senior Member
Messages
598
Hi @Dysfunkion -- I find your descriptive posts to be quite interesting. Occasionally I'll run it by AI, and see if I can get some explanations or nuances about what you describe. This is what I got today, and was especially intrigued by the part I underlined:

The writer highlights how conventional healthy diets don’t always work for people with ME/CFS, and how food sensitivities and reactions can be very individual and even change over time. That’s a common experience among many with chronic illnesses involving immune and nervous system dysregulation.​

Well mine did take a nose dive after a bad food poisoning incident in 2013 I believe after that the real nightmare began where if I wasn't on D3 or B12 my body would just down and everything would stop working (it's still like this and at some point I lost D3 and really had to fight to get it reintegrated). That's also when the meat intolerance began and my sensitivities began to snowball.

--


Apparently black pepper can inhibit UDP-glucuronosyltransferases and CYP34A, I wonder if these are already struggling and levels of something being produced in my intestines from food in general rapidly rises. I'm due for a good couple days of fasting here anyways. Ever since being on the enzymes I'm starting to feel more satisfied with less allowing me to consume less per meal and break things up making things somewhat better. Am I surprised at this as Wishful has said this to me a million times over before? Not really, the problem is now is that if I cut anymore out I'll be barely eating period and with diet since there isn't too much there already and I can really only play with variation at this point I've shifted mostly off the guts besides avoiding things I'm highly reactive to and playing with eating patterning. I've gotten less reactions to sensitivities and a better functioning digestive system through beating around the bush. So it's like there's something somewhere else that's causing a digestive cascade and feedback loop. I really wish I didn't have the meat sensitivity so I could try full carnivore but if a compound in meat itself also presents a problem then no matter how long I stay on that the problem will still persist since something else in the immune system and some general metabolite processing problem may be fueling it. Yeah this post says a whole lot of nothing but now with the black pepper, curcumin, enzymes, and red light thing I have some more pieces of this puzzle.

So what I'm going to do here is try to integrate Lumbrokinase and see what happens, that brand that starts with a B is way too expensive so I had to go with Doublewood which is apparently weaker but actually probably what I want if enzyme stacking is working better for me and since it's new there's a chance like with everything I'll herx. Will update when I feel like I have enough info for an update on how that goes.

edit 6/20 - Rapid shipped that lumbrokinase and tried it this morning. Interesting reaction, I feel better with it at a baseline and improves the inflamed brain feeling especially in the bad ear but it also made my digestive system a little upset and face feel lightly "spicy". Could be a herx considering the clash, I've been here before but much worse when I first started serrapeptase. I'm going to get on an every other day schedule and play around with the dose of the gluteguard as I also took that this morning along with my every other day 2 minute red light session. I'm going to move the gluteguard to every couple days a dose, keep the serrapeptase every day, lumbrokinase every other day, and red light every other day.
 
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