We have an immune mediated condition and there are forum members who legitimately cannot take the vaccine. Just because some doctors don't get this doesn't mean we should fall for snake oil.
Substantial improvement with (strange) dietary adjustments
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I agree with that, but the difficulty is that there's a fine line between snake oil and viable treatment - and everyone draws the line differently. I wouldn't bother discussing 'flares' and 'relapses' from vaccine reactions with my 'healthy' friends, as they would consider me crazy. I know some physicians think keto is a snake oil fad diet, but like you said some people on the forum here do well on it, some don't. There are some people here who found benefits to carnivore. As I mentioned, I was somewhat surprised that carnivore seemed to improve some of my symptoms and digestion, but personally I found other diets helped me more than carnivore and were easier to maintain.
I just think to each their own, and us unhealthy folks should always approach everything with 'healthy' skepticism, but an open mind. Our GPs often think anything that isn't advertised at their Hawaii conferences by pharma companies is snake oil - supplements don't work, acupuncture is a placebo, herbs are bad for you, etc. I wish I could just depend on my doctor's advice and expertise, but sadly I learned that was not any kind of solution.
I just think to each their own, and us unhealthy folks should always approach everything with 'healthy' skepticism, but an open mind. Our GPs often think anything that isn't advertised at their Hawaii conferences by pharma companies is snake oil - supplements don't work, acupuncture is a placebo, herbs are bad for you, etc. I wish I could just depend on my doctor's advice and expertise, but sadly I learned that was not any kind of solution.
Hey there, I am not saying a dietary approach will be right for you or my approach, but just wanted to say that I thought this literally for YEARS.
I thought food doesn't make a difference. I had a comprehensive GI exam with no abnormalities and GI symptoms showed up only very late in my disease history (just like PEM, which is weird).
BUT: I think this is because how complicated the food issue is in my case. It's so many ubiquitous ingredients that cause trouble that something is included in almost every meal. So many combinations and effects that start to show only a day later and may last for days.
It was so incredibly difficult to find out what's exactly causing the problems. In truth, ALL meals made me worse because they all contained one or two things on the list, and just ONE bad ingredient makes all or most of the symptoms return. If every meal makes me worse, it can't be about the food, right? (after all, I can't stop to eat)
"Why are my symptoms worsening? Was it the lentils (lysine)? I leave them out. No, it's the spinach (nitrates) in the same meal. I leave that out, too. No, it's the oranges (citric acid) I ate freaking YESTERDAY. But pasta with mushrooms is ok, right? Well, not when made with olive oil (monounsaturated fatty acids)..."
That's the haystick in which I am trying to find needles at the moment.
I am sceptical as well.
Mikhaila *claims* that she is in complete remission while staying on her diet. Jordan Peterson seems to have continuing issues. To be clear, I am not defending or recommending their dietary approach, which is obviously VERY different from mine, which is plant-based, i.e., the very opposite of their "Lion Diet."
In a sense, you describe what's happening to me. No cure or remission, but substantial improvement "only."
The question for me is: How far can the improvement go if I continue to try to figure out what adjustments I have to make. I absolutely still am not there yet. There are so many open questions. I am still so unsure about so many things.
This is so incredibly hard to figure out. People have suffered and sadly in many cases even died for centuries from Celiac Disease, and they "just" have to cut out some grains. Still, no one found it out for such a long time.
This is exactly where I am at. I am still struggling to find answers. But I know there has to be something, because the effects of some dietary changes are so profound and consistent.
Another reminder how weird my case is, in which fruit causes problems, but some of the foods I can best tolerate (fat-free mushroom pasta, wholegrain bread) is very high in starch, which is broken down into sugar.
It's not one factor. It's much more complicated. I don't know if it can be figured out, I don't know if there is a diet that eliminates all problematic foods. Maybe something ends up in every meal and I can't get rid of it all. But right now, I feel like it still makes sense to try some more.
For what it's worth, here are some more observations:
(1) The main problem is probably due to bacterial fermentation of protein.
I think one of the problematic compounds is a bacterial fermentation product that is produced in the microbiome or in fermentation in the presence of protein (most likely lysine) and some types of fermentable carbohydrates, and possibly aided or exacerbated by other co factors like fat, acid or the presence of nitrates.
I am thinking about something like biogenic amines (e.g., in histamine intolerance) or nitrosamines which are produced by bacterial fermenation in the presence of acid and more is produced if fat is present. It is probably neither histamine intolerance nor nitrosamines, because the symptoms don't fit and a diet eliminating most histamine and nitrosamines (no nitrates) doesn't help.
I am currently focused on the type of fermentable fiber that obviously has to be present for whatever reaction happens here to occur. Example: Cow's milk yoghurt can be quite well tolerated while soy yoghurt is one of the worst foods there is. Both contain lysine, cow's milk yoghurt even more I think.
My hypothesis is that the reaction is possible with the legume fiber of soy, but not (or only less) with the lactose in cow's milk yoghurt. So it depends on the fermentable carbohydrate substrate.
That may also be the case why plain cheese doesn't seem to be very problematic: The bioavailability of the lysine in plain, unheated cheese is 100%. Nothing reaches the colon and can be fermented. Also no fiber or carb source in plain cheese (gotta be careful though that it doesn't mix with earlier or later meals).
(2) Pre-fermented foods are more problematic, but that fermentation occurs in the gut as well
Evidence: Spinach lasagna (nitrate, lysine, fermentable fiber in spinach and pasta) causes much more symptoms if eaten after it has cooled and reheated, but it also causes symptoms if eaten right away. So the problematic compounds are produced both outside of the body at room temperature as well as in the microbiome after eating the foods. This seems to distinguish this from histamine intolerance, in which people can eat completely fresh sources of protein with no symptoms, even frozen fish.
I am trying to eat all my food fresh and right after cooking to allow the least possible time for bacterial activity before consumption.
(3) Citric acid is problematic even without fermentation.
I found studies that say citric acid is absorbed by up to 98% within 2 hours, so only trace amounts go to the gut for fermentation. 2 hours is also the timeframe in which symptoms start after I eat acidic fruit, so I assume the problem with organic acids is something that happens AFTER absorption and not primarily linked to fermentation. What also points in that direction is that Tofu causes big problems and there is no organic acid involved in that. I suppose this is because Tofu is made from soybeans that have long been soaked, which allows some fermentation to happen just like in the case of soy yoghurt.
I can maybe eat one meal of fruit every 3 days. The problems seem to start after repeat consumption.
(4) Mushrooms and yeast are ok without fat (or any other problematic stuff)
Mushrooms and nutritional yeast cause terrible symptoms if cooked with fat, esp. olive oil or avocado oil (monounsaturated fatty acids). When cooked without oil they appear to be well tolerated. Fat-free mushroom pasta (Ingredients: mushrooms, wholegrain pasta, nutritional yeast, onions, garlic, water) seem to be one of the best tolerated meals I tried so far. (not 100% sure if leaving out the onion makes a difference, I tend to say no). I suspect this is because of the glutamine in mushrooms which, it appears, must not be combined with fat, especially monounsaturated.
As detailed in an earlier post, it is always important to consider the rate of gastric emptying
I'm not expecting many people to read my lengthy theorising, but if one day someone stumbles upon this thread who really has the very same thing, they will read all of this letter by letter and it will be tremendously helpful, that I am sure. I wish I had had this thread 5 years ago or 10 years ago.
(1) The main problem is probably due to bacterial fermentation of protein.
I think one of the problematic compounds is a bacterial fermentation product that is produced in the microbiome or in fermentation in the presence of protein (most likely lysine) and some types of fermentable carbohydrates, and possibly aided or exacerbated by other co factors like fat, acid or the presence of nitrates.
I am thinking about something like biogenic amines (e.g., in histamine intolerance) or nitrosamines which are produced by bacterial fermenation in the presence of acid and more is produced if fat is present. It is probably neither histamine intolerance nor nitrosamines, because the symptoms don't fit and a diet eliminating most histamine and nitrosamines (no nitrates) doesn't help.
I am currently focused on the type of fermentable fiber that obviously has to be present for whatever reaction happens here to occur. Example: Cow's milk yoghurt can be quite well tolerated while soy yoghurt is one of the worst foods there is. Both contain lysine, cow's milk yoghurt even more I think.
My hypothesis is that the reaction is possible with the legume fiber of soy, but not (or only less) with the lactose in cow's milk yoghurt. So it depends on the fermentable carbohydrate substrate.
That may also be the case why plain cheese doesn't seem to be very problematic: The bioavailability of the lysine in plain, unheated cheese is 100%. Nothing reaches the colon and can be fermented. Also no fiber or carb source in plain cheese (gotta be careful though that it doesn't mix with earlier or later meals).
(2) Pre-fermented foods are more problematic, but that fermentation occurs in the gut as well
Evidence: Spinach lasagna (nitrate, lysine, fermentable fiber in spinach and pasta) causes much more symptoms if eaten after it has cooled and reheated, but it also causes symptoms if eaten right away. So the problematic compounds are produced both outside of the body at room temperature as well as in the microbiome after eating the foods. This seems to distinguish this from histamine intolerance, in which people can eat completely fresh sources of protein with no symptoms, even frozen fish.
I am trying to eat all my food fresh and right after cooking to allow the least possible time for bacterial activity before consumption.
(3) Citric acid is problematic even without fermentation.
I found studies that say citric acid is absorbed by up to 98% within 2 hours, so only trace amounts go to the gut for fermentation. 2 hours is also the timeframe in which symptoms start after I eat acidic fruit, so I assume the problem with organic acids is something that happens AFTER absorption and not primarily linked to fermentation. What also points in that direction is that Tofu causes big problems and there is no organic acid involved in that. I suppose this is because Tofu is made from soybeans that have long been soaked, which allows some fermentation to happen just like in the case of soy yoghurt.
I can maybe eat one meal of fruit every 3 days. The problems seem to start after repeat consumption.
(4) Mushrooms and yeast are ok without fat (or any other problematic stuff)
Mushrooms and nutritional yeast cause terrible symptoms if cooked with fat, esp. olive oil or avocado oil (monounsaturated fatty acids). When cooked without oil they appear to be well tolerated. Fat-free mushroom pasta (Ingredients: mushrooms, wholegrain pasta, nutritional yeast, onions, garlic, water) seem to be one of the best tolerated meals I tried so far. (not 100% sure if leaving out the onion makes a difference, I tend to say no). I suspect this is because of the glutamine in mushrooms which, it appears, must not be combined with fat, especially monounsaturated.
As detailed in an earlier post, it is always important to consider the rate of gastric emptying
I'm not expecting many people to read my lengthy theorising, but if one day someone stumbles upon this thread who really has the very same thing, they will read all of this letter by letter and it will be tremendously helpful, that I am sure. I wish I had had this thread 5 years ago or 10 years ago.
Oh, and Xylitol as a sweetener seems to be ok with fruit and avocado. I still have to check it with more protein-rich foods like oatmeal. I'm sceptical of xylitol-sweetend chocolate spread (nutella), because the chocolate bean processing involves a long period of fermentation and chocolate beans have protein. But may try it at some point.
My latest food to avoid is onion powder, or most likely, anything involving onions. I used to be okay with them, but a couple of months ago I had to give up using fresh onions. Then I had worsening ME symptoms from soup cubes and several different snacks that had onion powder as an ingredient.
My diet just got blander. *sigh*
My diet just got blander. *sigh*
Hello everyone, another update after trying a lot of things.
I have a suspicion that if true (big if) strongly simplifies things.
I now strongly suspect that Lysine restriction is the most important part of the long list @BMO66 thankfully reposted for those who came later to the thread.
It currently feels like some of the foods mentioned only cause problems with a concomitant high(ish) Lysine intake. For example, Vitamin D or sunlight exposure. I always thought I have to limit D to a 20-30 ng/ml range, but once I restricted Lysine for a longer period (2 weeks or so), it now seems I can do daily sun tanning without getting worse. A second case which now seems to be allowed is some greens and cruciferous vegetables (tried a pound of kale a few days ago without worsening).
On the other hand, acidic berries still seem to cause trouble even under the low Lysine diet. I'll look closer into that in the coming weeks.
Oh, and with Lysine restriction, I mean keeping Lysine close to the lower end of the daily recommendation, which is anywhere between 30-45 mg per kg body weight per day. In my case the lower bound is 81 kg x 30 mg = 2.4 grams of lysine a day. I try to get no more than 2 and 2.5 grams a day. Going lower doesn't seem to help.
That sounds easier said than done, though. Just a few ounces of dried beans and I blow right past it, so beans are basically out again. Same goes for animal protein that's why I still stick to the vegan diet. Just over 3 ounces of gouda cheese is 3 grams already. And that would come on top of all the Lysine I eat during the day from low Lysine foods, which also contain a small amount (e.g., 3 ounces of rolled outs contain 0.2-0.4 grams of Lysine, depending on the source).
If this really holds, it would strongly simplify things and perhaps open up new ways to improve the dietary approach further.
I have a suspicion that if true (big if) strongly simplifies things.
I now strongly suspect that Lysine restriction is the most important part of the long list @BMO66 thankfully reposted for those who came later to the thread.
It currently feels like some of the foods mentioned only cause problems with a concomitant high(ish) Lysine intake. For example, Vitamin D or sunlight exposure. I always thought I have to limit D to a 20-30 ng/ml range, but once I restricted Lysine for a longer period (2 weeks or so), it now seems I can do daily sun tanning without getting worse. A second case which now seems to be allowed is some greens and cruciferous vegetables (tried a pound of kale a few days ago without worsening).
On the other hand, acidic berries still seem to cause trouble even under the low Lysine diet. I'll look closer into that in the coming weeks.
Oh, and with Lysine restriction, I mean keeping Lysine close to the lower end of the daily recommendation, which is anywhere between 30-45 mg per kg body weight per day. In my case the lower bound is 81 kg x 30 mg = 2.4 grams of lysine a day. I try to get no more than 2 and 2.5 grams a day. Going lower doesn't seem to help.
That sounds easier said than done, though. Just a few ounces of dried beans and I blow right past it, so beans are basically out again. Same goes for animal protein that's why I still stick to the vegan diet. Just over 3 ounces of gouda cheese is 3 grams already. And that would come on top of all the Lysine I eat during the day from low Lysine foods, which also contain a small amount (e.g., 3 ounces of rolled outs contain 0.2-0.4 grams of Lysine, depending on the source).
If this really holds, it would strongly simplify things and perhaps open up new ways to improve the dietary approach further.
My latest food to avoid is onion powder, or most likely, anything involving onions. I used to be okay with them, but a couple of months ago I had to give up using fresh onions. Then I had worsening ME symptoms from soup cubes and several different snacks that had onion powder as an ingredient.
My diet just got blander. *sigh*
Very sad to hear this, but I would be interested if:
(1) Does this concern all Allium species foods (spring onions, chives, garlic etc.) or just plain white/yellow onions?
(2) Is this raw onions and powder only? What about cooked or caramellized onions?
The reason why I am asking is that onions contain organosulphur compounds that are responsible for the pungent taste. The enzyme that makes these compounds can be deactivated by heat though. It is only active when the onion gets crushed before being heated. If these are the culprits, an onion cooked whole without crushing or slicing shouldn't cause symptoms.
Also, if organosulphur compounds are responsible, you should react negatively to all Allium species foods, because they all contain similar compouds.
I haven't tried other types of onions. Regular yellow ones cause the symptoms when chopped up and cooked in soup. Foods with 'onion' or 'onion powder' cause symptoms too. I haven't tried garlic since before this onion sensitivity, and didn't see any point in spending money to make myself feel worse just to verify that.
I have some MSM (sulfur supplement, and probably 15+ years old) that I have considered testing, but haven't yet. I have chives in my lawn, so I could experiment with them if I wanted to, but I don't care for the taste, and haven't seen any useful potential result.
If boiling for 20+ minutes isn't enough to destroy the enzyme, does caramelizing do the trick? How about wrapping a whole onion in foil and putting it in a fire for x minutes?
I have some MSM (sulfur supplement, and probably 15+ years old
) that I have considered testing, but haven't yet. I have chives in my lawn, so I could experiment with them if I wanted to, but I don't care for the taste, and haven't seen any useful potential result.If boiling for 20+ minutes isn't enough to destroy the enzyme, does caramelizing do the trick? How about wrapping a whole onion in foil and putting it in a fire for x minutes?
@Wishful How do you do with dairy? I read onion powder is high in galactose and I personally have issues with galactose rich foods (Milk, Chickpeas, avocado etc). If you do ok with dairy than your issue with onions could be something else.
I don't have problems with dairy. I took an MSM capsule (expired Aug 2004
), so I'll see whether it's sulfur compounds in general ... or whether MSM becomes toxic past expiry. I used to be fine with onions. Maybe I've picked up a new bacteria that turns something in onions into something troublesome. That sort of thing isn't technically impossible. Maybe that's the cause of some odd food reactions.
Yup same here, since few months back I cant seem to tolerate specifically Mushrooms, Mangoes and Prawns they give me anal fissures or belly button infections almost instantly. Some fiber or sugar(Beta Glucan, Chitin, fructose) seems to be feeding either fungi or bad bacteria.
You could try soaking peeled onions in room temperature water for 15mins and then caramelizing them.
I could try boiling or roasting whole onions ... but my taste buds don't signal any desire to eat a whole cooked onion, and I can't think of anything else I can cook that would be improved by one. I'm not desperate enough for onions at this time.
BTW, I had no noticeable response to the MSM capsule, so my reaction doesn't seem to be to sulfur compounds in general. I don't see any point in testing whether allicin is the culprit. I'l just retest onions or onion-containing products occasionally to see if the sensitivity fades.
BTW, I had no noticeable response to the MSM capsule, so my reaction doesn't seem to be to sulfur compounds in general. I don't see any point in testing whether allicin is the culprit. I'l just retest onions or onion-containing products occasionally to see if the sensitivity fades.
Thanks everyone for your replies and sorry that I didn't respond earlier. I had (largely uncomplicated) Covid in the last 3 weeks and still coughing a bit, but luckily it doesn't seem to have made me worse overall.
The enzyme should definitely be destroyed by cooking for 20 minutes at boiling point, but once you chop up the onions, the enzyme is released already and some of the organosulphur compounds will have been produced already. I think once produced, these compounds don't get destroyed anymore or the form different compounds with similar effects at higher heat, so caramellizing might not work. Boiling a whole onion without chopping or crushing or otherwise destroying cell walls would be worth trying though. There should then be no organosulpur compounds (and no pungent taste).
A whole boiled onion, boiled to the point where it falls apart easily, and then pureed into a vegetable soup tastes quite well and may be worth a try if that's something that sounds more appealing to you.
The enzyme should definitely be destroyed by cooking for 20 minutes at boiling point, but once you chop up the onions, the enzyme is released already and some of the organosulphur compounds will have been produced already. I think once produced, these compounds don't get destroyed anymore or the form different compounds with similar effects at higher heat, so caramellizing might not work. Boiling a whole onion without chopping or crushing or otherwise destroying cell walls would be worth trying though. There should then be no organosulpur compounds (and no pungent taste).
A whole boiled onion, boiled to the point where it falls apart easily, and then pureed into a vegetable soup tastes quite well and may be worth a try if that's something that sounds more appealing to you.
A quick update on the past few weeks, which included a relatively uncomplicated episode of Covid, which does not appear to have left any lasting effects (so far).
I get the impression that protein restriction is at the core of successful dietary management. I was talking a lot about lysine, but there has to be at least one other amino acid that's problematic, and I strongly suspect Arginine because foods like hemp seeds or sunflower seeds that are high in Arginine make me worse, but sesame not so much, which has a lower protein content and lower arginine as well.
A very important finding is that when I do lysine and arginine restriction, my sensitivity to Vitamin D and calcium appears to disappear. I have had about 20 days of intensive mid-day sun tanning in the past week and normally should see a negative effect, but since I am on a protein restriction diet, I feel no adverse effects. I can even tolerate calcium supplements and can go above 1000 mg a day total intake. This would have lead to strong symptoms before, but with protein restriction, it doesn't. This is quite remarkable given that I always used to do very badly whenever Vitamin D climbed above about 30 ng/ml
My hope was that maybe protein restriction would be a single factor and all the other foods only problematic if protein (lysine, arginine intake) is too high, but that doesn't seem to be the case. Sensitivities against spinach, acidic fruit are still present even with protein restriction. I'll try a stronger Arginine restriction and see if that makes a difference.
A few foods that appear work quite well:
Avocado-banana pudding (Avocado, banana, some oat milk, finely blended)
Fried mushrooms with bread, pasta or cooked grains (shiitake/cremini mushrooms fried in a little grapeseed oil, garli, wholegrain bread, cooked kernels or pasta, salt).
Microwaved Kale and Sweet potato (frozen kale, sweet potato, 1 teaspoon of grapeseed oil for fat soluble vitamins, microwaved until soft and tender)
Wholegrain pasta with tomato sauce (wholegrain pasta, a teaspoon of grapeseed oil, onion, garlic, tomato puree, salt)
It also seems that dates and bananas (non-acidic fruit) work very well when eaten alone.
Importantly, each of this has to be the entire meal, nothing else may be added (except water).
When I add sweet potato to the Avocado-banana pudding, it causes symptoms, which is something I didn't expect and can't explain. Same when I add fruit to the kale or mushrooms. This is very strange. These meals have to be eaten in isolation, nothing added, and 6 hours distance to the next meal. If that's done, they seem to work very well.
I will have to try if I can add bananas (non-acidic) to these meals. I think organic acids are problematic.
I have also made some sauerkraut to test the assumption that fermentation is problematic. If it is not, sauerkraut should be similar to kale and I should be able to eat it with sweet potato (not that that tastes very good, but I want to test that theory).
I get the impression that protein restriction is at the core of successful dietary management. I was talking a lot about lysine, but there has to be at least one other amino acid that's problematic, and I strongly suspect Arginine because foods like hemp seeds or sunflower seeds that are high in Arginine make me worse, but sesame not so much, which has a lower protein content and lower arginine as well.
A very important finding is that when I do lysine and arginine restriction, my sensitivity to Vitamin D and calcium appears to disappear. I have had about 20 days of intensive mid-day sun tanning in the past week and normally should see a negative effect, but since I am on a protein restriction diet, I feel no adverse effects. I can even tolerate calcium supplements and can go above 1000 mg a day total intake. This would have lead to strong symptoms before, but with protein restriction, it doesn't. This is quite remarkable given that I always used to do very badly whenever Vitamin D climbed above about 30 ng/ml
My hope was that maybe protein restriction would be a single factor and all the other foods only problematic if protein (lysine, arginine intake) is too high, but that doesn't seem to be the case. Sensitivities against spinach, acidic fruit are still present even with protein restriction. I'll try a stronger Arginine restriction and see if that makes a difference.
A few foods that appear work quite well:
Avocado-banana pudding (Avocado, banana, some oat milk, finely blended)
Fried mushrooms with bread, pasta or cooked grains (shiitake/cremini mushrooms fried in a little grapeseed oil, garli, wholegrain bread, cooked kernels or pasta, salt).
Microwaved Kale and Sweet potato (frozen kale, sweet potato, 1 teaspoon of grapeseed oil for fat soluble vitamins, microwaved until soft and tender)
Wholegrain pasta with tomato sauce (wholegrain pasta, a teaspoon of grapeseed oil, onion, garlic, tomato puree, salt)
It also seems that dates and bananas (non-acidic fruit) work very well when eaten alone.
Importantly, each of this has to be the entire meal, nothing else may be added (except water).
When I add sweet potato to the Avocado-banana pudding, it causes symptoms, which is something I didn't expect and can't explain. Same when I add fruit to the kale or mushrooms. This is very strange. These meals have to be eaten in isolation, nothing added, and 6 hours distance to the next meal. If that's done, they seem to work very well.
I will have to try if I can add bananas (non-acidic) to these meals. I think organic acids are problematic.
I have also made some sauerkraut to test the assumption that fermentation is problematic. If it is not, sauerkraut should be similar to kale and I should be able to eat it with sweet potato (not that that tastes very good, but I want to test that theory).