Crashing caused by diet change

[wabi-sabi]

It's also fascinating what Jordan Peterson says about how diet totally changes his disease (probably autoimmune):

Yes, I strongly suspect my issues are autoimune, rather than ongoing viral infection. But when your immune system goes batty for whatever reason I bet it feels similar. That's why I keep reading up on autoimmune/paleo type diets, but they mostly involve cutting out wheat and dairy, which are some of the foods I tolerate best. Weirdness.

If you are increasing veges and you cannot tolerate them this could be the key maybe?

I'm not sure if the trouble is adding in things I shouldn't have or accidentally cutting out things I need. What my body wants seems to fluctuate so much. One day I can have (and want) lots of kefir, the next day a small amount makes me queasy. Lot's of foods are like this.

At any rate, it's helpful to hear everyone else's experiences. Gives me hope I will be able to individualize me own diet to feel better.

Thanks guys!

 

[Wolfcub]

Mostly my diet fluctuates with my energy levels. I love to cook and make mostly veggie based things when I can cook. Small amounts of meat and plenty of whole wheat toast works well. When I can't cook, it's lots of bread, cheese, and nut butter. Eating those things doesn't make me sicker, but don't seem to have enough nutrition to make me better. I just rest enough until I can cook again. The thing I really can't tolerate anymore is coffee.

I guess the issue is that I read so much online about autoimmune diets and keto, and no dairy and no bread. I keep trying it and it never helps. SLow learner, I guess.

@wabi-sabi , what is great for one person is not for another. I couldn't do a no-carb thing either, and I am sure it wouldn't make any difference to how I feel/don't feel. Some people have worked wonders with the ketogenic diet and for others it's made them more unwell.
I think one thing we really need to do is listen to our bodies.
Each case is a basically individual case with individual needs.

It seems that many of us have got to the stage when we are experimenting with this and that re: diet and supplements -even medications etc, and listening very carefully to body feedback.

Well you did try, and you experimented to see what would happen. There is nothing wrong with testing it out to see if it suits you. And what might not suit you at this moment, might be okay for you at a later time...?

My feeling is -eat what makes you feel better or if that isn't possible, then at least steady.

 

[taniaaust1]

Mainly the cognitive problems. I just get too swayed by online testimonials for my own good. And I have a friend with diabetes who is doing better with low carb. Of course I don't have diabetes... But Dr Myhill's website says CFS people are prone to metabolic syndrome (precurser to diabetes) so I am trying to forestall that.

Im on a low carb diet with my ME/CFS due to metabolic syndrome and prediabetes (hyperinsulinemia). As you have read metabolic syndrome is supposed to be common in ME/CFS (and most drs will miss this). Some with ME/CFS go onto low carb diets due to issues with candida and in their cases can suffer from candida die off which can make them sicker at first. If you dont have either of those issues and its not helping, forget it and look at other diets as you are doing.

(be aware that if someone is doing a very low carb diet ones body will be getting its energy instead from fats so these are needed in diet)

As to "which diet".. there is no diet really best as each of us is quite individual in our dietary issues if we have them with our ME/CFS (extremely common to have some form of dietary issue with this, it can take a very long time to sometimes figure this out). You may want to look at the idea of that you "could" have some food intollerances to figure out, seeing these are common in ME/CFS.

My food intollerences or issues with certain foods with this illness have been
- dairy (which can give me headaches but I seem to be fine with that now),
- sulfar foods eg too much of foods such as brocolli, eggs etc give me issues (I had my observation that some of those foods were making me ill further confirmed to me by finding out I had a certain genotype which often has this issue)
- peanuts/cashews
- mustard
- artificial sweeteners
- a food colouring they use to make some foods green
- coffee (caffeine)
- gluten

I havent had any food intollerence testing done so I have no doubt if I did I would find out I have more issues as it took me about 3-4 years just with observation my body with dietary changes or getting clear symptoms to foods to figure out what I had issues with on top of my issue with carbs.

Intollerances to fructose, dairy, artifical sweeteners, coffee (while that helps others) and gluten are all common in ME/CFS. It can be tricky to figure out as reactions may not happen till you have a certain amount or things in combo and different things may flare up different symptoms.

 

[taniaaust1]

Low carbs means High Fat and / or High protein.
Both are very very unhealthy..

We are all very different and those with ME/CFS are bodies are not "normal" in the first place. What is usually very unhealthy could well be the best for some of us.

Take my ME symptom of POTS for example.. I need high salt due to this and need to salt everything. The salt I need to take could be dangerous to someone without my issues.

I have problems with very high insulin spikes so need a very low carb diet and need fats in this to help stop my insulin spiking so much, my specialist told me I need protein every single meal and things like full fat dairy etc etc (if having diary). High insulin flares up my ME and starts to crash my immune system so I then get a sore throat etc etc.

Im basically on a keto diet as more carbs also explodes my weight (I actually put on 5kg over night after having a binge on a roast with the kind of veg normal people would eat with a roast (It must of made me also hold onto fluid). I cannot eat vegatables like a normal person does and need to have low carb veg only.

I eat a crazy amount of protein with my low carb diet as that is the diet I do best on.. (and also what my allergist who specialises in insulin issues like I have advised.. meat, fish or eggs with every meal). "some" of us need low carb/high protein.

 

[taniaaust1]

Eat bag of chocolate chips, get really high, and three hours later- just awful.
.

I wonder if you have had a 2hr glucose tollerance test done WITH the insulin readings included (they dont tend to include these in glucose tollerance tests unless the dr requests it) You may have hyperinsulinemia (pre-diabetes) causing that reaction.

 

[wabi-sabi]

You may have hyperinsulinemia (pre-diabetes) causing that reaction.

This is certainly a great fear of mine, which is why keep trying to eat fewer carbs. However, decreasing carbs (and I'm not talking here about bingeing on chocolate. I mean having a bit less whole wheat bread) makes me ill and causes weight loss. I sort of have your experience in reverse

(I actually put on 5kg over night after having a binge on a roast with the kind of veg normal people would eat with a roast

meaning without enough complex carbs would loose. Eating the bag of chocolate chips still makes me gain weight!

That's what's so weird to me about this illness. I had a flare in Feb/March such that my body was just digesting itself. I got down to 115lbs, which was scary. While I've put the weight back on now, I can't seem to recover the muscle mass, since I can't work out. Or at least, doing the grocery shopping is a workout, but not the sort that seems to make me stronger.

Mostly I wish I could find someone who's physiology is like mine so I could learn from them. Right now I'm just doing the self-experimentation and trying to listen to my body

It seems that many of us have got to the stage when we are experimenting with this and that re: diet and supplements -even medications etc, and listening very carefully to body feedback.

as suggested here.
I sure can't tolerate coffee anymore, though!

 

[Wolfcub]

That's what's so weird to me about this illness. I had a flare in Feb/March such that my body was just digesting itself. I got down to 115lbs, which was scary. While I've put the weight back on now, I can't seem to recover the muscle mass, since I can't work out. Or at least, doing the grocery shopping is a workout, but not the sort that seems to make me stronger.


I sure can't tolerate coffee anymore, though!

Upping protein might help with muscle mass loss?
I noticed some muscle mass loss myself, and don't know if anyone else here gets this but I started really craving protein instinctively months ago, and it has done me no harm.
Oh and don't shun wholewheat bread....unless you have gluten sensitivity. Even then you can get good gluten free bread!
Good bread -especially seed bread is packed with protein and goodness. But I find it's definitely better to go for the "artisan" breads which some stores and health food shops do have -rather than the plastic-packaged bread readily available in supermarkets -or even bake your own?

I have a love-hate thing going on with coffee. I love it. Sometimes it hates me....but not always. Sometimes it calls a truce.

 

[taniaaust1]

This is certainly a great fear of mine,

If you are worried about something, get tested so you know if you have it or not.. (or is a case of not having a good dr to have tests done?). Its best not to have to keep guessing about things.

That's what's so weird to me about this illness. I had a flare in Feb/March such that my body was just digesting itself. I got down to 115lbs, which was scary. While I've put the weight back on now, I can't seem to recover the muscle mass, since I can't work out. Or at least, doing the grocery shopping is a workout, but not the sort that seems to make me stronger.

dont worry about your muscle mass as such as long as it isnt so wasted that it is preventing you from doing things or being dangeous for your health. Focus more on your weight and not letting that drop too low. My calves have been all flabby with not much muscle there for years but it isnt what makes me collapse at times (though possibly the weakness there is what makes climbing stairs very hard for me though I think stair climbing sets off my POTS).

One time a dr started flapping my muscle mass in my calves about, its like jelly lol, he could tell im certainly not doing much exercise.

 

[alex3619]

Whenever I eat too much fat, I get more sluggish.

Hi carb, hi fat is bad for everyone. Nobody recommends that.

 

[Tammy]

Hi carb, hi fat is bad for everyone. Nobody recommends that.

It was a simple reply on my part. I do not do well with high fat....and I do well on high carb (healthy carbs). I've heard people here mention every different kind of combination of diet known to man. Nobody recommends high fat? Tell that to the people on keto diet.

 

[alex3619]

It was a simple reply on my part. I do not do well with high fat....and I do well on high carb (healthy carbs). I've heard people here mention every different kind of combination of diet known to man. Nobody recommends high fat? Tell that to the people on keto diet.

Nobody recommends eating both high carb and high fat in the same diet. Its the worst food combination. High fat keto diets are low carb, and typically moderate to high protein. Some people do well with low carb and high fat or protein, and some do well with low fat and high carb, and usually moderate protein. Its combining fat and carbs together that has the worst consequences. Best way to do that is with a moderate diet, eating all three in balance, if you want to combine them.

I do understand experimenting. I have tried a great many ways to approach food, and supplements, though not some extremes like keto diets. I was on a very high carb low fat diet for several years, but I personally do better with much higher protein. High fat is OK so far as I am concerned (but its necessary to practice energy restriction as its easy to overdo fats), as are high carbs, but I don't combine them, especially not in the same meal, except for an occasional treat. When I eat dairy its fat reduced or low fat. Most of my fats are from extra virgin olive oil. Most of my choices are higher protein, lower carbs, with limited fat, but this gets broken with packaged food as much of it is higher in fat. Or the occasional pizza, which is again high fat high carb, and not a great thing to eat often.

To my way of thinking a typical example of high fat high carb, though a very rare guilty treat for me, is french fries. To balance shop bought french fries I always buy fish.