Dietary changes - what's your experience ?

Emmarose47

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Hi
I've been v reluctant to make any further dietary changes . But hey what do I have to lose ?
I went plant based 18 mths ago but more recently brought back fish as my body was telling me it needed it . Since the first portion I could feel energy surging in my body .
( I'm not looking here for meat eating being better as I'm not willing to eat other meats ...and yep I take a good b12 my bloods show I have over adequate but yep I know that some people have shots etc ....
I'm working with a herbalist at the mo and he said he has seen people signif improve with keto . Presently I eat oats, rice , quinoa and potato . I feel v attached to these not sure if it's seretonin related or I have some addictive qualities poss indicating allergy .
Today someome else mentioned they took out all foods that contain lectines and this has made signif improvement .
Oh and the nightshades .

I feel resistance to change I feel a I'll towards the nuts and seeds I eat but herbalist / diet guy said they are ok with keto ..

So my position is shall I try something , am I willing .

Could u share with me any changes you've made to your diet and what results u got . I think the more people I hear the more it may surge me to try changes ...

Thanks a lot 👍
 

BrightCandle

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I have been through a bunch of varying dietary changes, some forced on me by IBS and others to try and improve my function. Its something I am still doing, all my food intake is chosen on the basis of microbiome promotion at the moment so I can hardly say don't bother! There isn't a universal feel better diet, if you have particular foods you can directly point to and say it causes you bloating or intestine pain then by all means eliminate it or reduce your intake. If a microbiome test shows the usual dysbiosis then doing something to promote them is potentially worthwhile, its improving my constipation doing so.

What I would add is that if you are vegan there are a bunch of things you may need to take in supplements wise to maintain health even as a normal healthy person and that is going to need some research and you should ensure you do get as much of that naturally as you can, soya for example is essential as a vegan daily. A lot of us have IBS issues worsened by vegetable proteins and I think that alone makes vegan diets not really recommended for most ME/CFS sufferers. I was vegetarian for quite a few years in my early illness but I just can't do it now at all, I am not eating meat out of a love for it but because I alas feel better taking it in and much worse on vegetable proteins especially soy and pea.
 

maddietod

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I shifted to a plant based diet about 6 months ago, and recently decided to bite the bullet and do an elimination diet. My foundation is winter squash, sweet potato, asparagus, carrots, apples, and rice, plus fish for protein. and salt for flavor. Of course this is not sustainable, but I'll soon start testing food families to see what makes symptoms flare.

I've tried lots of dietary interventions, and nothing has made a difference except giving up dairy (congestion) and nightshades (arthritis). I've begun to suspect the foods I depended on as a vegetarian - soy and gluten especially - and this is the only way I could figure out to run a meaningful test.

I did try keto some years ago - lots of effort for no result, for me.
 

BrightCandle

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I should have mentioned one way to find the things your body isn't happy with is to use an elimination diet like FODMAP, then add foods one by one and evaluate impact. That at least gets you a list of stuff you can eat without bloating/pain whatever the symptoms are.
 

Azayliah

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I tried moving to plant-based diets several times, and each time I felt awful. It was the same with a keto diet. My digestion seems to do best with a low-fat & low fiber diet

Removing things like beef, sugar, and gluten seemed to help, but then so did re-adding them to my diet after not having had them for a while... so I suspect that's something closer to the mechanism that causes so many medicines and supplements to become ineffective for me after a brief time.

Lately, I've been eating a lot less potassium (mainly by avoiding potatoes, having less milk and tomato), and that seems to be helping me to get up and move around a little more.
 

Wishful

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There isn't a universal feel better diet,
That's the critical observation. You can read everyone else's lists of food to eat or avoid, but it won't tell you what your body does best with. You have to pay attention to what makes you feel better or worse. The fewer foods you eat in a reasonable time period, the easier it is to figure out which ones affect your symptoms.

Of course this is not sustainable,
I expect it will be sustainable for far longer than you are expecting. Health articles based on selling supplements or diets try to make people believe that they'll collapse if they don't get all their RDAs for a few days. I was sensitive to tryptophan and niacin plus various foods, so I stayed on a cornstarch and water (and a bit of canola oil) diet for a year or so. Aside from the occasional VitC supplement to avoid sore gums, I didn't notice any deficiency symptoms. There are plenty of cultures or situations (sailing ships) where humans have lived on very limited diets for long periods without harm. To me, your diet sounds like it would be sustainable for years without problems.

I did try keto some years ago - lots of effort for no result, for me.
Keto made me feel worse.

Removing things like beef, sugar, and gluten seemed to help, but then so did re-adding them to my diet after not having had them for a while...
I've noticed that too for some foods. I gave myself a treat of some chicken yesterday. I expect I'll feel worse in a few days from the extra proline, but this morning I'm feeling better than usual.


I think the more people I hear the more it may surge me to try changes ...
I've done a lot of drastic dietary changes over my 20 years of ME. I found several foods or additions that did make a definite improvement in my quality of life. I found lots of foods or food components that made a big improvement in my quality of life if I avoided them. My opinion is that testing foods and diets can be one of the easiest and most productive ways to reduce ME symptoms. Of course, that's partly because there aren't many other cheap or easy ways. There may be something in your present diet that is adding to your symptoms. Maybe it's a 'safe' food additive. Maybe it's a specific vitamin or amino or fatty acid (I've had problems with all three). I can't recommend any specific diet for you because we're all different and what works well for one person does the opposite for someone else. My suggestion it to treat it as a personal experimentation procedure, to determine what is best for your body ... and mind. If chocolate makes your symptoms a bit worse, but avoiding it completely makes life not worth living, enjoy the occasional treat. :)
 

Woof!

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Hi @Emmarose47. I've got to agree with the take-home messages of everyone here...
(1) what works for one person won't necessarily work for another, and
(2) the nutritional needs of our body may change as we age.

Up to turning 60, I craved meat (to the point where I'd get migraines treatable only by a rare hamburger - no kidding, my mother was the same way). Then, upon turning 60, I rapidly gained 17 pounds on my 105-110# frame - a huge amount of weight and all in my abdomen - and I felt horrible! At the urging of my fantastic PT, I cut out all dairy and meat and the weight dropped off completely over 2 weeks. I tried adding a little meat and cheese back, and the weight rapidly came back. Okay, I was convinced. No more meat or dairy for me (with one exception - cream cheese in one beloved butternut squash recipe, just enough to maintain a very small abdominal paunch).

Now I feel best on a whole foods diet (fruits, veggies, nuts & spices) with no grains except oatmeal and supplemented with fish and eggs. :)
 

bertiedog

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Could u share with me any changes you've made to your diet and what results u got . I think the more people I hear the more it may surge me to try changes .
There seems to be a consensus with medical researchers that good health and good gut function go hand in hand, therefore if you are interested in being guided by your microbiome it might be a good idea to run a stool test from one of the companies Ken Lassenen of CFS Remission recommends. I used Biomesight here in the UK and when you get the results they contain a huge amount of information plus there are recommendations as to what foods you could eat to improve all the various findings.

I have done 2 with this company, 6 months apart (I think it was from an offer last Christmas of 2 for 1) and I tried to add in their various suggestions to see if I could tolerate the foods mentioned in order to improve my microbiome and body especially the very important substances like butyrate (always low in ME and other inflammatory conditions like Type 2 diabetes), bifidobacteria, again usually low in ME etc.

Biomesight also have a Facebook site full of valuable information btw.

Having suffered with severe IBS for the pas 20 years which included severe constipation, sometimes alternating with diarrhoea I was amazed to find I tolerated FOS and GOS in relatively good amounts. These will feed the bifidobacteria and butyrate btw. Plus I have eaten small amounts of new potatoes and also recooked them gently in olive oil for resistant starch for example and have tried adding in a variety of different vegetables without issues.

What I have just found out with the help of @YippeeKi YOW !! is that I am highly sensitive to the various amines in foods and supplements but I am still not sure exactly which one's trigger my chronic migraine and IBS but I am narrowing down the main foods/chemicals which trigger me. So far since a week ago I haven't eaten peanuts or cashews, which were my go to snack, I stopped the green lipped mussels supplement which I was taking for osteoarthritis along with one indentured collagen capsule taken for the same reason and finally stopped taking Partially Hydrolysed Guar Gum because I know that anything hydrolysed is sky high in various amines.

All of the above foods are high in histamine as well as glutamine and probably other amines too. In my case I don't possess the enzymes to break these foods down which puts me at high risk for migraine. If I hadn't had my genetics done of course I wouldn't have known about this problem and its proving to be very helpful.

One thing I am not sure about is that I have been able to eat very tiny amounts of peanut butter on a teasspoon with coconut oil. Coconut oil and peanut butter are both supposed to high in histamine and glutamine but I don't seem to have a problem with these and drink coconut milk daily. Since all these adjustments I have only had one very minor migraine which was yesterday evening and I am not sure why this happened, possibly it was the result of walking my dog in the afternoon when I ran out of energy.

My gut and IBS is so different but I quickly got bloating and pain when I tried out 3 peanuts the other day. Consequently my bowels went loose whereas there had been such an improvement. Not to be too indelicate but within a few days of making changes to the above there was a change of stool colour going from a rather nasty diahorrea colour to a much richer brown. (Sorry if I have offended anybody but I hadn't expected anything like this to happen).

Obviously at times I have felt like a new person with a much more active brain, better energy too but this can fall apart quite easily as it did for me the day after the booster shot but luckily this was only for one day. I also felt very brain fogged yesterday because I didn't have enough sleep so it's obvious that how we feel is still dependent on all the basics we know about.

I hope that at least some of this might give you some targeted ideas as to what would be the best diet for you.

Pam
 
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What a nifty and informative post, @bertiedog ..... I'm so glad that you've found a way to continue tracking the things that might be causing your migraines and the miseries that go with them ....
Not to be too indelicate but within a few days of making changes to the above there was a change of stool colour going from a rather nasty diahorrea colour to a much richer brown. (Sorry if I have offended anybody but I hadn't expected anything like this to happen).
All due respect to those with finer sensibilities, but its virtually impossible to describe the changes you're posting about without going into some basic detail, and changes in consistency and color are basic signs that should be noted.

No offense taken. At least not by me, and Im betting not by at least 95% of members .....
I also felt very brain fogged yesterday because I didn't have enough sleep so it's obvious that how we feel is still dependent on all the basics we know about.
Yeah that's the frustrating thing. On all the basics, and then on curve balls like microbiome and IBS and MCAS and on and on and on.

A real grab bag o'fun ....


Thank you again @bertiedog for posting all that info .... it'll definitely help a lot of members ....
 

Wishful

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(2) the nutritional needs of our body may change as we age.
Not just as we age; each time we change our diet we change various systems in our bodies which in turn changes how we react to foods. I expected the chicken I've had over the past three days to give me unpleasant symptoms from too much proline, but I haven't noticed any symptoms yet. Foods such as potatoes and onions are safe for me sometimes, and troublesome other times. With ME, you can't assume that your reactions to foods will stay the same as the last time you tested them.
 
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Not just as we age; each time we change our diet we change various systems in our bodies which in turn changes how we react to foods.
True, true, true !!! And especially true of our microbiome, where eve any otherwise negligible alteration in diet can produce some truly spectacular results in our brain, gut and/or enteric nervous system. And I dont mean that in a good way ....

you can't assume that your reactions to foods will stay the same as the last time you tested them.
I completely agree, altho think that's true of everyone to some extent, it's just that we're mircro-focused on even the smallest improvement or backside, whereas other people just write it off to a bad potato salad and go on with their lives .... the lucky stiffs ....


It's one of the reasons it's a good idea to re-test stuff that either stopped working after producing decent results, or maybe had no appreciable effect at all.

Because, y'know, things change .....
 
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I tried moving to plant-based diets several times, and each time I felt awful. It was the same with a keto diet. My digestion seems to do best with a low-fat & low fiber diet

Removing things like beef, sugar, and gluten seemed to help, but then so did re-adding them to my diet after not having had them for a while... so I suspect that's something closer to the mechanism that causes so many medicines and supplements to become ineffective for me after a brief time.

Lately, I've been eating a lot less potassium (mainly by avoiding potatoes, having less milk and tomato), and that seems to be helping me to get up and move around a little more.
@Azayliah any specific cooking oil and protein/carb portion size you follow? I follow same diet and it helps although I still find its really hard to loose weight especially around my waist.
 

Azayliah

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@Azayliah any specific cooking oil and protein/carb portion size you follow? I follow same diet and it helps although I still find its really hard to loose weight especially around my waist.
No measured protein/carb portions. Mainly using canola oil (vegetable oil is cheaper but always seems to make me queasy), and sometimes olive oil (if it's not too bitter). My weight isn't good by any means, but here's some of what I've learned along the way:

Sugar and erythritol stimulate my appetite, but I can manage to lose weight while having those. However, corn syrup sends everything off the rails; cola intake correlates with rapid weight changes, and there are other bad effects with even as little as 4oz/day (ex: poor wound healing, cyst flares). I suspect that for me, corn syrup both increases food intake and creates a tendency to hold on to weight in general. So if your portions are well-controlled but you are still holding weight, you might find that you're like this with certain sugars, or bread, etc.

The quality of the food seems important for satiety. For example, hormone free meat is more filling for me than the stuff that isn't.

I'm not taking in a lot of variety, and I also have a lot of rice (which, as I understand it, leeches nutrients). Additionally, I may have trouble absorbing adequate nutrition from food in general. This is probably why I experience increased hunger/nutrient-seeking behavior if I'm not taking certain vitamins.
 

Woof!

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Sodas are ANTI-nutrition, IMHO. It's not just that they don't have any nutritional value. It's also the wildly abnormal roller-coaster ride they send our blood sugar on. I get asked a lot of nutritional questions from friends, and my advice to them is always the same. Ditch the soda. 100% of it. Now. Cold turkey. Just do it.

First step: stop thinking that you're giving yourself a treat when you drink them. Instead of thinking "It's a glass of my favorite :heart: beverage," think: "It's a glass of ______,________,_________,________,______&_______" :eek::jaw-drop::yuck: (just fill in the blank with the soda's full list of ingredients. Eew!)

Second step: replace what you've been drinking with a much healthier beverage, one that you like...and no, fruit juices and "energy" drinks don't count. (Like corn syrup, they will send your blood sugar on the same unhealthy roller-coaster ride.) An option that has worked for one of my friends: spiced tea (simply hot water with a little cinnamon, a touch of cumin and a pinch of turmeric...use whatever spices you like, including pumpkin spices if that is something you love).

Know that you are helping yourself to get off of an addictive substance. When you crave sodas, it's not your brain thinking with its smartest self. It's the damn roller-coaster, looking for a fix.

So I said, this is MHO, but science backs me up, big-time. (IOW, please don't shoot the messenger.) :hug::hug:
 

BrightCandle

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Sodas are ANTI-nutrition, IMHO. It's not just that they don't have any nutritional value. It's also the wildly abnormal roller-coaster ride they send our blood sugar on. I get asked a lot of nutritional questions from friends, and my advice to them is always the same. Ditch the soda. 100% of it. Now. Cold turkey. Just do it.

First step: stop thinking that you're giving yourself a treat when you drink them. Instead of thinking "It's a glass of my favorite :heart: beverage," think: "It's a glass of ______,________,_________,________,______&_______" :eek::jaw-drop::yuck: (just fill in the blank with the soda's full list of ingredients. Eew!)

Second step: replace what you've been drinking with a much healthier beverage, one that you like...and no, fruit juices and "energy" drinks don't count. (Like corn syrup, they will send your blood sugar on the same unhealthy roller-coaster ride.) An option that has worked for one of my friends: spiced tea (simply hot water with a little cinnamon, a touch of cumin and a pinch of turmeric...use whatever spices you like, including pumpkin spices if that is something you love).

Know that you are helping yourself to get off of an addictive substance. When you crave sodas, it's not your brain thinking with its smartest self. It's the damn roller-coaster, looking for a fix.

So I said, this is MHO, but science backs me up, big-time. (IOW, please don't shoot the messenger.) :hug::hug:
The Diet ones are pretty bad too. They don't have quite the same sugar rollercoaster that damages the body but all the of the sweeteners especially Aspartame kill bacteria, which is mighty bad for the microbiome. One paper I was reading suggested that one can kill 40% of your bacteria, 40%! Luckily they also multiple in about 3 hours so they recover but if you accidentally kill off a species with a can of diet coke this is majorly bad news. One thing I also notice is most obese people drink diet and yet it doesn't seem to help. Weight gain isn't really about calories but actually about hormones like insulin and having these artificial sweeteners that hack our system and cause insulin spikes without the sugar just isn't good for us either as it causes fat to be laid down. There has been a few papers suggesting some of them are associated with cancer. Thomas DeLauer (he has quite a few videos on sweeteners which may be of interest) has done some tests on blood sugar and insulin a while back and the ones used in most commercial products are just bad for us in a variety of ways.

The craving is a combination of sugar and carbohydrate dependence as well as caffeine addiction. Neither is easy to beat, takes weeks to up to a month. I can't do without simple carbohydrates, I don't function without them but I choose my sweets precisely so I get what I need and no more.
 
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Revel

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In case anyone is interested in the Biomesight stool test that @bertiedog recommended above, there is currently a £10 off sale on their website, plus a further £20 off using the voucher code "MAR" at checkout, and free UK delivery - although it doesn't beat @bertiedog's '2 for 1' Christmas deal for value!
 
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I'm not taking in a lot of variety, and I also have a lot of rice (which, as I understand it, leeches nutrients). Additionally, I may have trouble absorbing adequate nutrition from food in general. This is probably why I experience increased hunger/nutrient-seeking behavior if I'm not taking certain vitamins.
@Azayliah Do you prefer any particular type of white rice(Long grain, short grain sticky, jasmine). I was reading people with SIBO/IBS may do better on starches that contain more amylopectin (Sticky glutinous rice) compared to the resistant starch forming amylose (Long grain Basmati).
 

Judee

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there is currently a £10 off sale on their website, plus a further £20 off using the voucher code "MAR" at checkout, and free UK delivery
Ken Lassessen also shows some discount codes on his site HERE. Micro and Thegutclub50 both seem to work as of the time of this posting.