Diet change

[Heartl]

@ljimbo423 i feel like for me anyway diet is so important! Your diet sounds just like how I ate for about 5 years. It did help me for so many years but the last two I just started feeling worse.
The change in how I felt for the first couple of months was remarkable, especially in my pots symptoms. Now I still feel better especially digestion but getting back to my baseline unfortunately

 

[Viala]

@Viala I completely agree with you! What is mysterious to me is when I switched diets first from a regular American diet to paleo I felt a lot better literally overnight for months and months until gradually back to baseline and then switching to plant based vegan and then feeling great for months and now back to a little better than baseline

It happened to me as well with keto diet and switching between keto and carb diet and back. With keto I think this is common that it works in the beginning mostly. With other diets I believe it has something to do with our microbiome, it takes time for it to readjust. So maybe switching between diets every couple weeks or months may be a good idea, or it may be not. Anyway I am not sure if grains are good for our health, I like the idea behind paleo diet.

 

[ljimbo423]

@ljimbo423 i feel like for me anyway diet is so important! Your diet sounds just like how I ate for about 5 years. It did help me for so many years but the last two I just started feeling worse.
The change in how I felt for the first couple of months was remarkable, especially in my pots symptoms. Now I still feel better especially digestion but getting back to my baseline unfortunately

I agree that diet is very important. I need to stay on a low carb diet or suffer the consequences.

I think whatever is driving this illness, often but not always, causes the microbiome to become and stay "dysbiotic" or in a constant state of dysbiosis.

Diet changes can help some of us, to some degree, but ME/CFS will often bring the microbiome back out of balance again. At least that what I've read here by so many people.

Even people that have tremendous improvements with a keto diet, often get worse again at some point.

 

[Woof!]

The problem with contemporary food...lies with how this food is made nowadays. Pesticides, herbicides, antibiotics and salts in meat industry, forage is also not natural (gmo soy), and the soil is barren on which all today's food is grown.

Sooooo true, and don't forget all the hormones and hormone-stimulating drugs that are used in the meat industry. Take it from this vet - it's disgusting!

 

[Woof!]

@Dr.Lynne I would love to see a “sample menu” of what you eat in a day.

Okeedokee...since you asked:

yesterday's lunch: colorful veggies, seasoned with fresh ground sea salt & cracked pepper
purple & yellow beets* (cut into sticks and cooked in water)
butternut squash* (cooked in water, then mashed with cream cheese - the only dairy I eat - and minced ginger)
garlicy beet greens* (cooked in grapeseed oil in a cast iron pan)
sliced zucchini* (cooked in olive oil with thyme and marjoram in a cast iron pan)

last night's dinner: muddy water smoothie
(3 mandarin oranges, handful blueberries, banana, 4 stalks celery, handful of baby carrots, spinach, arugula, 2 tbs almond or cashew butter, almond milk)

for dessert: stewed peaches,* walnuts, pecans and melted dark chocolate

breakfast: 2-egg omelet* with spinach, tomatoes, mushrooms seasoned with fresh ground sea salt & pepper and "Spices and Tease" omelet blend of spices (tarragon, parsley, onion, corriander and a few other awesome things) and coffee

lunch: 1 avocado with sea salt, lemon pepper & paprika, plus 10 grape tomatoes and a handful of walnuts
cumin, cinnamon & turmeric tea

snack: power cookies (my own recipe)
(banana, almond butter, real vanilla, maple syrup, coconut, walnuts, chocolate chips, chia seeds, oatmeal)

tonight's dinner: more colorful veggies, seasoned with sea salt and cracked pepper
whipped celeriac root,*
baby carrots with finishing olive oil*
zucchini stew* (zucchini, yellow squash, portobello mushrooms, onion, green peppers, grape tomatoes and "Spices and Tease" kabob mix spice blend)

tomorrow's breakfast: same as today's breakfast

tomorrow's lunch: cinnamon eggplant* (stewed eggplant, green peppers, onions, tomatoes, cinnamon)

* all of these things are cooked using organic ingredients in large batches (I cook only twice a week), so they can be mix n' matched and eaten throughout the week when I'm not up to cooking. IMO, spices and fresh-ground sea salt are the key to making things extra yummy.

If I could eat beans and lentils (sadly, I can't), I'd also eat lots of bean chili and Indian Dal. The same goes for cauliflower, broccoli, potatoes, apples, pears and grapes (sadly all of them trigger Sjogren's symptoms for me)

 

[Woof!]

Once or twice a week, I'll also eat wildcaught fish or scallops. No meat, tho'

 

[Heartl]

@Dr.Lynne thank you so much! I eat similar to this but also beans and grains, no eggs.
I’m going to skip the grains and see if I feel better. Thanks again for this

 

[Wishful]

(leaving oats only)

I've encountered a couple of mentions of oats having less bioavailable proline. Just a possibility for why you can tolerate them but not other grains.

 

[Timaca]

I eat similar to this but also beans and grains, no eggs.
I’m going to skip the grains and see if I feel better. Thanks again for this

Rather than removing all grains, maybe just remove wheat (if you haven't done so already). In general grains are healthy for you. And you are eating whole plant foods which is also healthy for you.

If you get too restrictive in your diet you won't get the nutrients that your body needs and it can be difficult to eat out or travel.

I went on an elimination diet years ago and felt better. I slowly added foods back in until I was eating whole plant foods, gluten free. It's hard to travel and go to restaurants on that kind of diet. Recently I was able to add wheat in without an issue and I'm grateful for that. So now I eat whole plant foods (WFPB) with gluten. (I do eat some vegan protein powders and make products using whole wheat flour)

I found that adding more salt to my foods helped me.

Not everything CFS wise is diet related. (unfortunately--otherwise we would have found the answer by now)

But, in my opinion, you have settled on a good diet....eating whole plant foods.

Best wishes for improvement of health for you (and all of us)!

 

[Heartl]

@Timaca Thank you so much for your input. I haven’t eaten wheat in years, I feel horrible after eating anything with wheat, dairy, and sugar.
I’m gonna play around with a little less grains and see if it makes any difference.
Thanks again

 

[lenora]

I do think so much of this comes down to our age and the different illnesses that we have. Out of a healthy diet, I can say that nuts have been missing lately.

I've usually been small, but drugs I have to take for epilepsy and other things like heart disease (familial high cholesterol) high blood pressure, etc., put weight on me. (I'm not large or even close to it now, but don't like extra weight.) No, I don't like it, but it is what has to be. Sometimes choices aren't choices at all.

I never had epilepsy or anything even close to it until probably 18 mos. ago. I've been told that b/c of my types of seizures I'll have to be on medication for the rest of my life. So be it....it's not much fun trying to regain your memory after being unconscious for five days either. And autoimmune encephalitis....do you realize the type of damage that can cause? Not much written about it, yet, but a lot of people seem to be getting it.

Right now I've had to take a complete break from all doctors. First time in probably 35+years, but I just can't take one more appointment, "I should do this, that or the other, etc." I trust my neurologist, so I'll continue seeing him. Menopause leaves us with a different body in our 70's than it does in our 50's or so. Things just move around and yes, I'm trying to get back to the walking world again (at my own pace....life isn't a race).

I'm not annoyed b/c of this, just trying to explain how we may be at different ages and with different illnesses. Oh, and I still have pre-diabetes to contend with. It's impossible to know what to put in one's mouth....even the dieticians can't figure it out. And yet here's my husband at 77 still eating the same things, not gaining an oz., working out each day. Genes....what can one say? This is all extraneous to two neurological illnesses, ME, FM and CFS (or whatever it is today). I need to pretend that I'm healthy. Yours, Lenora.