Substantial improvement with (strange) dietary adjustments

[Wishful]

If only I had known...

Hindsight is wonderful.

I probably could have avoided a year of worse symptoms and limited diet if I'd thought to try probiotics as soon as the fibre intolerance showed up. In my defense, I'd tried probiotics years ago in my ME, and they had no effect on my ME, so I mentally put them in the category of "useless".

I expect a lot of us have "I wish I'd done <whatever> sooner. It's so obviously (now) something I should have tried." Others have "I wish I hadn't done <whatever>" stories. We can only make decisions based on what we know at the time, and with ME, we really don't know much.

 

[Murph]

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.

Same.

Just on the topic of food, I want to share this blog post.

https://slimemoldtimemold.com/2023/06/08/n1-dr-garcias-queasy-irradiated-rats/

It includes some studies that suggest we are biologically primed to blame food for how we feel. However we often get the culprit wrong.

Rats would instantly associate nausea with whatever food they had most recently eaten, and had no problem doing so. If he made them sick after giving them Cheetos, they would learn to reject Cheetos forever. But the rats simply could not learn to associate their nausea with any other kind of stimulus. It didn’t matter if the stimulus was bright lights, or an annoying buzzer. No matter how many times Garcia flashed lights at them, the rats never learned to associate their nausea with the lights.

I have run some elaborate dietary systems while I've been sick. Over time many of them have come to seem silly. The years I avoided egg and dairy? a waste. my time on keto? good for weight loss but definitely not a guarantee of feeling strong. I've had mad and wrong ideas about jam, certain brands of supplements, about nuts, about cola, etc, etc etc etc. i've been a real pain in the arse on the food front. but truth is my symptoms vary for a range of reasons of which food is merely the one I most like to point at and apply blame.

My guess is the probability is low most of us can feel the effect of, say, omega-3s specifically ( but I don't want to invalidate your lived experience if you are sure that you can). Still, my bitter experience suggests we should be very skeptical of our beliefs on even whole foods, let alone blaming subcomponents.

 

[Aidan]

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.

I have had a very similar experience to you over the last few years (as we have discussed before) although my complex pattern of triggers is different. I also find that if I eat too much of one food, that food will start to trigger bad symptoms even if it used to be ok. Last august I became convinced that my issues are MCAS related and found improvement with taking quercetin and some other supplements/anti histamines. Have you considered if the various nutrients/foods that you find trigger symptoms are triggering a mast cell response, and that this underlying medical condition is mcas?

 

[Wonkmonk]

Just a quick update. I have made no further progress and even slid a bit backward, mainly because I found out new things and I am trying a lot new stuff some of which doesn't work and makes me worse.

A few of the latest findings:

(1) Some foods seem to have an accumulating effect over a long time (days, maybe even weeks). That's a problem because in some instances, I ate a food and found no immediate negative reaction. Then I thought: I can eat that often, maybe every day (I have so few options so that would come as a relief). But no, after a few days or weeks, the effect accumulates and I am worsening.

(2) It appears that's the case with fruit. I can eat fruit only occasionally and not too much in one meal. If I eat it regularly, I am worsening.

(3) I kicked nightshades out again execpt a few tomatos per week, but still not entirely sure if that's really necessary. For what it's worth, peeled eggplant appears to be less problematic than eggplant with skins. Also greatly restricted legumes and cheese again (but both not out completely).

(4) It looks like the macronutrient balance is extremely important. I am currently experimenting with this: 80g carbs max per meal. 40g of protein max per meal. Rest fat. 800-1000 calories per meal max. I use coconut flakes to fill up the fat if necessary.

(5) I think eating too late at night makes me worse so I am trying to have my last meal at 8pm, even if that interferes with meal separation.

(6) I found out that zucchini is not a nightshade and I am confident I can eat it at least occasionally.

(7) Even most problematic foods can be eaten once (e.g., legumes) in a small amount. Repeat consumption is what causes the most problems, so I am trying to switch meals and never have one too often.

What I am currently trying to find out is in how far certain foods like legumes, eggs or cheese were actually problematic or in how far was it only a macronutrient balance problem (e.g., 200g of dried lentils for 600 calories is 48g of protein already and exceeds the per meal protein limit).

Meals that I am currently experimenting with:

*100g pasta + 50g dried lentils
*100-150g pasta + 1 medium-sized zucchini fried in oil or coconut fat (possibly adding an egg)
*Small portion of Hummus (50g dried chickpeas) + bread including 100g of flour.
*500g of potatos roasted with 30-40g of fat (possibly adding an egg)
*50g of cheese + bread including 100g of flour
*2 eggs of cheese + bread including 100g of flour
*100g of pasta with 1 pureed tomato fried in some oil
*500g of fried mushrooms, pasta and some nutritional yeast
*White bread (100-150g of flour) with margarine and salt

Oil and fats seem to be fine as long as they contain very low omega 3. Because the diet is deficient in many nutrients I need the following supplements at least occasionally: B Vitamins, Vit A, Vit K, Selenium, Calcium, Zink.

I see the best chance of further improvement in the meal size/macronutrient adjustments and in the meal timing (avoiding late meals).

 

[Wonkmonk]

I also find that if I eat too much of one food, that food will start to trigger bad symptoms even if it used to be ok. Last august I became convinced that my issues are MCAS related and found improvement with taking quercetin and some other supplements/anti histamines. Have you considered if the various nutrients/foods that you find trigger symptoms are triggering a mast cell response, and that this underlying medical condition is mcas?

Hello Aidan,

thank you so much for your response and sorry for responding so late, I wasn't logged in in the past 6 weeks so I am very sorry I missed your response until today.

It is very interesting that you found a similar pattern that some foods make you worse when consumed repeatedly. This is exactly what I found for legumes, cheese, fruit and some others. It's the repeat consumption that's most problematic.

Yes, I did think about mast cell activation syndrom and histamine intolerance. I found that many foods that cause problems with histamine (like tomatos, cheese etc.) also cause problems for me, but only after repeat consumption. I do not think that I have MCAS because I have no allergic symptoms whatsoever. OTC antihistamines (e.g., ceterizine) don't help me either. On the other hand, foods that should cause no problem with MCAS or histamine (e.g., frozen blueberry) do seem to make me worse when consumed regularly. So it doesn't really fit with MCAS or histamine intolerance.

Please continue to share your experiences. It is very interesting for me to hear from others who may have similar problems, even if (or especially when) the triggers are different.

 

[Wonkmonk]

I expect a lot of us have "I wish I'd done <whatever> sooner. It's so obviously (now) something I should have tried." Others have "I wish I hadn't done <whatever>" stories. We can only make decisions based on what we know at the time, and with ME, we really don't know much.

"I wish I hadn't done..." I have those as well. All the medications I tried which cost so much money and, more importantly, time. But at the time, it was right to try because I had nothing else I could have done and I worsened steadily. I felt like I had to try everything that's out there. Of course, in hindsight I wouldn't have done it, but if still was the right decision given what I knew back then.

 

[Wonkmonk]

It includes some studies that suggest we are biologically primed to blame food for how we feel. However we often get the culprit wrong.

Very interesting study and I totally agree that it is very easy to get these things wrong, but unlike the rats who didn't know they were part of an experiment and didn't understand what is going on, what I can luckily do is to make my own experiment. I tried some of these foods over and over and over again and the reaction was always the same, very consistent in severity, onset and kind of symptoms. I eat the foods, I get worse in the same way, I stop the foods I get better again. I tried it so many times. It must be the foods.

My guess is the probability is low most of us can feel the effect of, say, omega-3s specifically ( but I don't want to invalidate your lived experience if you are sure that you can). Still, my bitter experience suggests we should be very skeptical of our beliefs on even whole foods, let alone blaming subcomponents.

I totally know how crazy it sounds, but I would bet a good amount that if you did a blind test with me and you mixed some refined, odorless flaxseed oil in that meal without my knowledge or another oil without omega 3, I could tell you 3 days later if you did it or not. I am 100% certain I could find that out from my worsening symptoms.

 

[L'engle]

(3) I kicked nightshades out again execpt a few tomatos per week, but still not entirely sure if that's really necessary. For what it's worth, peeled eggplant appears to be less problematic than eggplant with skins. Also greatly restricted legumes and cheese again (but both not out completely).

Legumes and nightshades are high in lithium. Not sure if this is a factor for you or something else. I've been able to handle more nightshades since I started taking boron. I still don't trust them as a regular food. Like you I can eat most things once but continuing to eat them causes problems. I find this with yeast and sugar particularly but also other things.

 

[Wonkmonk]

Legumes and nightshades are high in lithium. Not sure if this is a factor for you or something else.

Thanks so much for the suggestion. I have taken lithium as a supplement once. I forgot the dose, but it was certainly a higher dose than I could get from the nightshades. I would be surprised if the supplement had less lithium than a few eggplants.

If I remember correctly, it did nothing, neither good nor bad, so I would suggest it's not the lithium in the nightshades. But maybe I should watch out for it, because some of the foods said to contain a lot of lithium, like whole grains, do cause problems for me. White pasta and flour doesn't, so if it is the lithium, it's getting removed by the processing.

But again, a supplement had no discernible effect, so I doubt lithium is a problem.

 

[Wonkmonk]

What still eludes me (if it exists at all) is a state in which my symptoms slowly get better and better, just like they steadily got worse and worse before I did the diet thing. Is there a diet where I could attain that state? It feels like such a state may exist, but it's impossible to know.

I am sure, if that state could be found, i.e., if things improved as quickly as they worsened before the dietary approach, I could get to low severity or it would possibly even go away completely.

But there is still the possibility that such a state cannot be found and whatever I eat, it will only get somewhat better and plateau at some point. Maybe some symptoms will stay whatever I eat.

The second problem I have is that the diet that brought me to the current higher plateau isn't sustainable. It's nutrient deficient and so lacking in diversity and tastiness that I probably cannot follow it for long without trying new things or going back to eating foods I know will cause a worsening.

 

[Wishful]

(1) Some foods seem to have an accumulating effect over a long time (days, maybe even weeks).

One possibility to keep in mind is that the foods are altering your digestive microbiome. I expect that eating fruit daily will shift the population balance one way or another, and that legumes will shift them a different way, and meat a different way. I'm certainly convinced that gut microbiome changes can have major effects on ME symptoms, so I think it's reasonable that even small changes in diet can affect symptoms. Supplements probably affect microbiome balance too, with some bacteria growing faster or slower if there's a change in the availability of copper or folate or whatever.

Some foods will have effects from changing nutrient levels in the body, and others from triggering immune activation, and others from changing intestinal barrier properties, and some other mechanisms. I'm just suggesting to keep the microbiome changes as a potential explanation for responses to dietary changes.

 

[Wishful]

It's nutrient deficient and so lacking in diversity and tastiness that I probably cannot follow it for long without trying new things or going back to eating foods I know will cause a worsening.

Our responses to foods can change over time, so some of those foods might not cause a worsening next time you try them. Others might be safe if you enjoy them for a week or two, then avoid them for a month or two. There might even be cofactors, so maybe you can tolerate potatoes if you also have copper supplements or grape juice. It's personal learning experience. Some of the techniques that might work may not have an obvious theory; they might even be quite bizarre, but if it works, it's good.

 

[Wayne]

I could get to low severity or it would possibly even go away completely.

Hi @Wonkmonk -- I'm finding your posts on diet and digestion interesting. I made a post 4-5 years ago about HBOT improving gastroparesis and various gut and digestive issues. Here's a LINK in case you're interested. Have you ever thought about "stretching" various parts of the spine and spinal cord that correspond to digestion? Might be worth looking into. -- Take care..

 

[Wonkmonk]

One possibility to keep in mind is that the foods are altering your digestive microbiome. I expect that eating fruit daily will shift the population balance one way or another, and that legumes will shift them a different way, and meat a different way.

Absolutely, Wishful, I have been thinking about that. However, when I had broad-spectrum high dose antibiotic therapy (Ampicillin/Sulbactam/Erythromycin) there was hardly any change, neither positive nor negative, so my primary hypothesis is that some harmful compound builds up in the body and that it's not directly connected to microbiome changes. However, it is a possibility. In either case, the "solution" would be to avoid the foods that cause a worsening, so it has no direct practical relevance.

Second, I tried all sorts of probiotics and probiotic drinks in high and low doses with no major benefit (or harm). That also speaks against the microbiome hypothesis.

Our responses to foods can change over time, so some of those foods might not cause a worsening next time you try them.

There might even be cofactors, so maybe you can tolerate potatoes if you also have copper supplements or grape juice.

Yes, I have noted that calcium for instance sometimes causes a worsening and sometimes doesn't and as I detailed in many posts in this thread that some combinations of foods cause a worsening, while isolated they don't, so co-factors is certainly something that's imortant.

Hi @Wonkmonk -- I'm finding your posts on diet and digestion interesting. I made a post 4-5 years ago about HBOT improving gastroparesis and various gut and digestive issues. Here's a LINK in case you're interested. Have you ever thought about "stretching" various parts of the spine and spinal cord that correspond to digestion? Might be worth looking into. -- Take care..

Hey, Wayne, thanks for the response.

I have indeed thought about oxygen therapy some time ago, especially because by blood oxygen has been a few % below where it should be in certain tests and I sometimes have a slight trouble breathing.

However, for the time being, I am having had significant success with the dietary approach, so I think I have to explore that a bit further before seeking new treatment option. But it is definitely something that was on my list. Thanks for reminding me of it!

 

[Dysfunkion]

That was a lot to go through, I appreciate you documenting all these odd changes because you also have odd similarities with me including the calcium, vitamin D, possibly the monosaturated fats or pressed oils thing (I'm currently experimenting with this now, could take a week or 2 to notice anything), beta catotines (like sweet potato or too much carrot) make me much worse, undercooked carbs in general make everything worse, lentils specifically induces crashes from hell that can last days (I looked them up and all compounds in them but can't find anything that specifically stands out, don't know what is so special about lentils to my body), land meat is the devil but seafood is apparently just hunky dory to my body, and fruit absolutely wrecks me but sugar itself doesn't do this (I can eat spoonfuls of white cane sugar and it won't be half as bad for me as a couple bites of most fruit). Another oddity I've noticed lately is that something called antho-cyanins are the devil to my body. If it's blue or purple I stay far away! Found out this one when I tried a supplement for it like around a month back and got hit with some of the worst fatigue and brain fog I had in months but luckily I bounced back out of it. Had some blue corn chips yesterday and the same thing happened though to a much lesser extent because I luckily only had a few chips before I'm like "Wait this is probably blue because...oh no." and stopped myself before I induced another full on crash.

I don't think nightshades themselves with me are a huge issue, I can eat well cooked white potato just fine and I haven't tried eggplant in a while but from what I remember I was ok with it. Tomatos are horrible for me but it's amount consumed dependent and how it was consumed. I don't really for example have issues with the tomato basil bread from Panera. I'm pretty sure it is the acidity of them though. I'm not sure on the nitrates thing but it is possibly true for me, I haven't really thought of nitrates much before. I'm also doing this thing I did a while back but fell off the wagon that was working out for me where I have a 2 day dinner fast and then eat dinner the next day while on all days having something for breakfast with minimal snacking in between. To much food mixing in my digestive system causes major issues it seems no matter what is going on there. I have definite trigger accumulation issues and right now through this diet thing I'm doing trying to work out what those accumulations are that are the worst for me.

On food mixing here is something very interesting that I personally noticed from nights out with the family where we went out to eat places and just stuffed our faces with a variety of foods without much of a care in the world and probably more than anyone should have in a week. Over eating large amounts of triggers from all over the place all at once will only make me extremely tired and brain foggy. That's it, I bounce right out a day after later. I've been trying to make sense of this repeatable phenomenon for many months now. The only thing I can come up with is that the immune system or gut microbiome gets confused and alterations to the body's overall chemistry from those 2 things isn't the same as consuming a large amount of the single trigger with a smaller amount of other foods/triggers mixed in.

 

[Wishful]

Second, I tried all sorts of probiotics and probiotic drinks in high and low doses with no major benefit (or harm). That also speaks against the microbiome hypothesis.

I too have had major changes in my diet, and bouts of antibiotics and probiotics, all with no noticeable effect on my ME symptoms. However, I've had at least two instances (food poisoning and recently somehow lost a critical colonic bacteria) where microbiome changes had major effects on my ME. So I'm not saying that ME is all about the gut microbiome, but rather that it can be a major factor, and needs to be kept in mind when trying to figure out why a recent change occurred.

When I was intolerant of proline, it may have been due to absorbed proline, or it may have been due to it affecting my microbiome, but there was no clear evidence either way, so I didn't really care. I just had to adjust my diet to avoid proline. If there was clear evidence that it was microbiome-related, such as if it depended on the amount of carbs with the meal, then I could have tried different adjustments.

One experiment at least for some chemicals is to try sublingual absorption. For me, cumin worked just as well sublingually (with the residue spat and rinsed out) as when swallowed, so I took that as evidence that the digestive system wasn't involved.

 

[Wishful]

Another oddity I've noticed lately is that something called antho-cyanins are the devil to my body.

I had a similar response to peroxynitrite scavengers: the more effective a spice or herb is at scavenging, the worse my ME symptoms. I didn't have a problem with anthrocyanins, so it's a different mechanism. ME is just plain confusing.

 

[Dysfunkion]

I had a similar response to peroxynitrite scavengers: the more effective a spice or herb is at scavenging, the worse my ME symptoms. I didn't have a problem with anthrocyanins, so it's a different mechanism. ME is just plain confusing.

Rosemary makes me more tired but I think it does to anyone and of all the things I saw that are peroxynitrite scavengers with sage on the list I don't think I have an issue with since I've had sage in food plenty of times before with no major issues.

It is confusing because of the multi day chain reactions things can have from diet that can change even depending on what was consumed with the trigger or what the trigger was made with even if those things it was made with are generally ok. That's why if I'm trying a new food I make sure it's in isolation of anything else new that could possibly cause things to muddy the waters if I react to something in it badly. Supplements I integrate one at a time and carefully take note of what happens in response to it. Like right now I'm bouncing out of a reaction I had to meat but it was also made with a bunch of other ingredients too and the reaction was somewhat different than if I had fried chicken for example. Also ate some other foods with it so I just don't know what is specifically doing what besides that I know things tend to go south easier if that meat was there. I like fasting so much because a light fast of a couple days like I said for a larger dinner gives me a decent reset light switch for my system. If I'm really doing bad and felt I somehow really screwed things up with what I ate over the course of a week I can probably make it through a 3 day fast in one piece given I don't have much going on at the time.

 

[Wonkmonk]

It just hit me that what I may have done wrong in the past weeks is adding more fat to the mushrooms. Musrooms contain choline, and I always suspected that choline plus fat causes a problem (which may also explein why cheese causes fewer problems than eggs).

I willl check that.

 

[Wonkmonk]

That was a lot to go through, I appreciate you documenting all these odd changes because you also have odd similarities with me including the calcium, vitamin D, possibly the monosaturated fats or pressed oils thing ... ...

Hello Dysfunktion,

Thank you so much for this fascinating report.

There are so many similarities, at least in principle. Other triggers in your case, but a similar pattern.

My first question is when have you last checked your thyroid function (including all autoimmune antibodies for Hashimotos and Graves disease)?

My experience is: The thyroid must be perfect. TSH consistently between 0.5 and 0.9. Otherwise, nothing ever works.

Second, I can only encourage you to try to figure out what's going on and not get distracted by thinking "this is so weird, it can't be diet." I wasted 6 years thinking this.

The complexity is enormous and the journey to try to figure it out was very discouraging. Meal mixing, meal timing, meal preparation, food selection, oil selection, meal size, supplementation, accumulation...it all plays a role.

My guess would be, if your case is similar to mine, that you could tolerate some of the foods you mentioned, if you ate them in isolation (like really ONLY that one food) and with a 6 hour window before and after the next meal to prevent mixing. Others you might tolerate once a week or twice a week in low doses.

It currently looks to me like I can have a lot of foods I thought I should never had if I do it like this.