Substantial improvement with (strange) dietary adjustments

Wonkmonk

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Hi everyone,

I don't know where this fits best, so I thought I'll put it in the General Treatment section.

I have noticed that I can make very substantial improvements of all symptoms with some strange adjustments to my diet. "Strange" because they don't concern any of the usual suspects like gluten or wheat,

It's also important to note that I have no food allergies, no known food intolerances and no other GI disease (I was checked comprehensively for everything, including intolerance to sugars, celiac disease and a host of other conditions).

So here is what makes me a lot better. I benefit substantially from:

1. I avoid any undercooked starches

*I am avoiding any undercooked starches, even slightly undercooked
*Even minor amounts like a few lentils that are bit harder in a cup of lentils seem to be problematic
*Everything has to be cooked super-soft, or even mushy (i.e., no "crunchy Quinoa," al dente spaghetti, potato with a bite to them...)
*I avoid rice completely (both white and whole grain)
*I seem to be able to tolerate very thoroughly cooked wholegrain barley, buckwheat or porridge.

2. I avoid large quantities of monounsaturated fats

*Yes, that includes the healthy oils like olive oil and avocado oil
*I definitely get worse from eating avocados as well
*Any pressed oils seem to be bad so I try to avoid them completely
*I cook with 1 teaspoon max of grapeseed oil (lowest monounsaturated content of oils that can be heated).
*I can eat substantial quantities of Walnuts, possibly other nuts, but not almonds or pistacchios.

3. I eat a balanced amount of Lysine

*I once took a lysine supplement and it immediately made me a lot worse
*BUT: A lysine elimination diet (no legumes also made me worse.
*I seem to need some amount of lysine every day.
*3-4 ounces of dried legumes (lentils, kidney beans, very thoroughly cooked) seem to be a sweet spot.
*Animal protein is high in lysine, so I am now basically vegan, but I think that wouldn't be necessary, I could probably eat some cheese or eggs.
*I also avoid nuts and seeds that are high in lysine (e.g., pistacchios, but most are out because of (2) anyway).

4. No spices at all

*I know this is a tough one, but I seem to be intolerant to basically all spices
*Espcially: Ginger family spices (ginger, curcuma, cardamom...) and hot spices (pepper, chilies)
*Some herbs like rosemary or thyme seem to be ok, as seems limited amounts of garlic

5. Try to always cook fresh, avoid any fermented foods

*I don't let food sit for too long
*No Sauerkraut, vegan yoghurt
*Also tofu seems to be terrible for me, although it's not fermented
*Fresh food seems to be best

6. I avoid all brassica family vegetables (cabbage)

*All cabbage makes me worse.
*Sadly that includes many healthy and tasty veggies, but I tried many times. This one is unambiguous.

7. I avoid high levels of Beta carotin (possibly other carotenoids)

*I try to stay within the limits of dietary guidlines for Beta carotin.
*Even a few ounces of sweet potato a day seem to be too much.
*I'll try to avoid it altogether and get Vit A via a supplement instead

8. I avoid any dietary nitrate

*This one is really tough and I'm not sure if it's really needed, but feels good so far
*No spinach, celery, kale, greens in general basically. Also no carrots and most other roots.
*I even cook with a nitrate free mineral water

9. Avoid high loads of calcium

*I seem to do best with 600-700mg a day
*Which is about what I get on a vegan diet with no supplements

10. Not technically a food thing, but: Keep Vit D low

*For some reason I seem to do better with a low Vit D at the lower end of my lab's reference level (which I think is 20 ng/ml)

11. Keep TSH between 0.4 and 1.0

*I had thyroidectomy and I am doing much worse with a TSH outside that area
*I reach that level with about 162 micrograms of thyroxine a day (which is one half tablet each of 150 and 175)
*Even slighly (+/- 5 micrograms) departing from this dose makes me much worse

12. Things I am not sure about

*Nightshades: Sometimes I think they are bad, but I think when I get the other stuff right, I can tolerate them.
*Mushrooms: Again, still unclear. I'm still trying.
*High amounts of fructose: It seems like I should limit fruit consumption to a few ounces a day. High amounts may be bad.
*Some individual foods like sour berries (esp. raspberries, black currants etc.)

Strangest of all is that I have to follow ALL these points to get the benefits. If I don't follow even ONE ITEM ONLY, most symptoms snap back.

___________________________________________

Thanks to everyone who read this. I know exactly how utterly bizarre this sounds, but I still wanted to share it because my improvements on this elimination diet (which readily concede eliminates an awful lot) are very substantial. I basically went from borderline "very severe" (hardly able to get out of bed, lots of pain, host of other symptoms) to lower level "severe" (pain almost gone, can get up, cook, walk for a few miles, still no work possible though).

I know the chance is low that someone has the exact same thing, but maybe someone can benefit from this.

Take care, folks!
 

Wishful

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Bizarre isn't uncommon with ME; it's that whacky of a disease. :xeyes:

6. I avoid all brassica family vegetables (cabbage)
They're goitrogenic, interfering with thyroid function. You might find that they're safe if cooked long enough (6+ minutes I think). I'm not desperate enough for overcooked brassicas to take that risk.

*Nightshades: Sometimes I think they are bad, but I think when I get the other stuff right, I can tolerate them.
I vary between tolerance and intolerance, with no idea what other factors are involved in that. I'm presently quite sensitive to them.

Since you have thyroid hormone issues, I'll point out that T2 (3-5 diiodothyronine) is another active hormone that might need adjustment. I needed a single 100 mcg dose every 21 days to avoid more severe ME symptoms. More or more frequently didn't provide extra benefit, but I'd start feeling worse one day and sure enough, it was 21 days since my last dose. There was a T2 product on Amazon last time I checked.

Further experimenting with foods and checking nutrient content might show some specific nutrients that are a problem or in some cases, a benefit). I had a need for supplemental carnitine if I ate meat (fatty acids), and I'm presently overly sensitive to proline (non-essential amino acid). I also have had negative and positive responses to specific fatty acids. You might find that some of your problem foods have some nutrient unusually high or low in common. Wheat is surprisingly rich in proline, for example. A useful online tool is: https://tools.myfooddata.com/protein-calculator/168893-169698/100g-100g/1-1

As an example of bizarre, I found that something in beef counteracted its proline content. More experimenting found that lamb worked too, which led to the conclusion that it was the CLAs (conjugated linoleic acids). One nutrient unexpectedly counteracted another. My wild guess is that it has to do with cell membranes. Sadly, that counteraction stopped working after a few weeks. :( I had been so happy to consider fatty beef and lamb as a dietary requirement.

My dietary factors are different from yours, but it's nice to see that other people have similar complicated food/nutrient issues. It's probably useful for other people who don't yet realize that there might be something in their diet that is making them feel worse than they need to be. My recommendation: experiment with different foods, pay attention to changes in your symptoms, and keep notes. You might find something that makes you feel better if you avoid it, or makes you feel better if you eat it.
 
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Second star to the right ...
They're goitrogenic, interfering with thyroid function. You might find that they're safe if cooked long enough (6+ minutes I think). I'm not desperate enough for overcooked brassicas to take that risk.
After a thyroidectomy, I wouldn't think this would be a contributing factor ....


@Wonkmonk
Nothing seems bizarre with this creepy little lurker of an illness. Even if no one can benefit directly from your exact dietary protocol, they can take comfort fro the fact that whatever it is that helps them, specifically, isn't that much out of the ordinary, no matter how odd they may think it sounds to the uninitiated.


Thank you for sharing, wonk !!!!:woot::woot: :thumbsup:
 
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@Wonkmonk,
you seem not to be so far away from me inregard to your diet.
Brassica, onions wasabi and similar hot plants are able to activate the TRPA1 receptor.
Ingredients in hot pepper, ginger and similar herbs/spices are able to activate the TRPV1 receptor. The results are pain and inflammations and the release of histamine.
 

Wonkmonk

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Thanks so much for all the kind replies.

Also so interesting that others have made similar experiences with other dietary factors. @Wishful

It seems the specific factors are varying widely, so the key message should be: It is absolutely possible that Food X or spice Y or supplement Z is in fact responsible for making your symptoms worse.

I have suspected dietary factors as a negative factor for years, but I always thought: This is impossible. Your disease severity cannot depend on whether or not you have a bowl of kale for lunch. That's so implausible.

But it does. I can 100% reliably cause a crash by eating a pound of kale.

Since CFS symptoms started to appear, it only went downhill for me.

Now that I started taking these dietary factors seriously, for the very first time, I have seen a sustained improvement (over several months so far). I should have taken this seriously much earlier and not always think "this is impossible."
 

Wonkmonk

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@andyguitar I do not have IBS or any other known GI disease. I was comprehensively checked by a GI doc. My sensitivities also don't fit any known GI disease and many things that make people with IBS worse (e.g., gluten, bread, cereal) I don't have any problem with. In fact, very thoroughly cooked whole grains seem to be one of the best foods for me (e.g., barley, porridge).
 

xploit316

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@Wonkmonk Your list of things that work closely matches mine, I still need to try #2 Grapeseed oil tho. Im trialing canola oil at the moment and seem to do ok on a tablespoon.

Have you trialed any spice which you do ok with? I cant do mixed spices but individually Coriander, Cumin and a little red chilli powder I seem ok with.

After a lot of trial and error and still experimenting, I do ok on a low fiber, low fat, low fructose diet.
 

Wonkmonk

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@Wonkmonk Your list of things that work closely matches mine.
Thanks so much for your comment. That's so fascinating that there are people out there with similar experiences.

I can tolerate 1 teaspoon of grapeseed oil to brown a clove or two of garlic for a more aromatic meal. I think (not 100% certain) the problem is the monounsaturated fat content of the oil. If that's really the culprit, canola oil would be rather high. Grapeseed oil is lowest (flaxseed oil must not be heated), second best is probably sunflower oil (not high-oleic of course). I have never tried if coconut oil works, it's almost all saturated, but it's health effects are controversial, so for the moment I stick with grapseed oil.

Regarding spices, I think I can tolerate some garlic, thyme and rosemary, but I'm not entirely sure about that. Because the list of things I have to avoid is so long and not exhaustive, it's sometimes hard to pin down what exactly caused a negative outcome.

I don't have to do low fat specifically. Walnuts, thoroughly chewed seem to be ok even in larger amounts. For me it seems it's mainly pressed oils and especially monounsaturated fats. I didn't feel anything bad for high fiber (lentils, whole grains etc.) and still experimenting with fructose (blueberries and dates may be ok).

So glad you shared your thoughts!
 

Wishful

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I have never tried if coconut oil works, it's almost all saturated,
It's not as simple as saturated vs unsaturated. Think of the individual fatty acids as Lego-like pieces: building a cell wall or some other part of a cell might require a specific portion of an acid, and the other portion of the acid might have and effect too. Coconut oil has lots of lauric acid, which is a medium chain molecule, which I expect is the most effective choice for specific tasks in the body, and no other fatty acid can take its place (or at least not as effectively). For whatever reason, coconut oil makes my ME worse. CLA's did provide significant benefits. I mostly use canola oil, but I've tried others without noticing a difference. BTW, fatty acids also vary according to where certain bonds are, so nervonic acid might have an O-H attached to the 3rd carbon atom, or the 4th or the 6th, and that might make a noticeable difference in how well a cell works.

Maybe you do need to avoid saturated fats. Maybe you just need to avoid one or more specific fatty acids. I suppose it's possible to feel better on the fatty acids from grapeseed grown in one region and worse from grapes grown elsewhere. All we can do is try different things and pay attention to what works for us ... and we have to keep retesting occasionally, since the situation may change (ME changes, or supplier changes or whatever).
 

xploit316

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@Wishful and others, without hijacking this thread too much, any ideas on how to counter issues of lysine? Avoiding/limiting dairy and meat is one, but are there ways to balance excess lysine intake?
 

Wishful

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I haven't paid any attention to lysine, so I can't help. I'd love to find a way to reliably avoid or counter proline. Discovering CLAs as a counter was pure luck (and paying attention), but it only worked for a short time. I have yet to find a food that has a low proline/other AA ratio. :(
 

Wonkmonk

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Couldn't you just avoid most lysine. It's an essential nutrient, the body needs it, but the minimum amount needed is probably rather low.

That would mean avoiding all animal products, all legumes (including peanuts) and several types of nuts and seeds (e.g., pistacchios).

Whole grains are deficient in lysine, so making those a large part of your diet should help lower your intake substantially.
 

xploit316

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@Wonkmonk Chicken is kind of my favorite meat to have for dinner. I gain weight from it but its something hard for me to limit. I have eliminated all dairy and had good results from doing so. Maybe ill limit my portion size of meat and include some arginine rich foods to balance the excess lysine. Thanks
 

Wishful

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Yet another example of ME changing over time: CLAs used to work really well for me, then they only helped a bit, and now it seems that they either don't counter the proline in beef at all, or they are making my ME worse all on their own. I had maybe 30 gm of medium ground beef (which I tolerated before) two days ago, and the next day I could best describe my condition as 'stupefied': I could barely think. Beef is now out of my diet. *sigh* :(
 

xploit316

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@Wishful I read that Proline, lysine are used in collagen production. Is that an angle to look at if there is an excess of collagen in the body and so we feel bad when we eat anything that increases it?