Diet change

Heartl

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I have had ME/CFS for at least 25 years. About 7 years ago I switched to a Paleo and sometimes keto diet and noticed an immediate change of symptoms. I felt at least 50% better. I ate mostly veggies, small amount of fruit, and meat daily.
Within the last two years I have gone back to feeling pretty crummy again despite this diet. Neck and spine pain, numbness, pots, feeling fluish, rashes.
All bloodwork normal.
About three months ago I decided to switch to an all plant based diet no meat at all. I have been reading various books on this.
Within 2 days of implementing this diet my rash is completely gone. Sleeping really well, no neck or spine pain and my pots gone. I felt like I could go for walks again but didn’t because I was scared I would rebound. I have no idea why.
Well unfortunately after about three months everything is back to how it was.
Rash is back as well as pots and everything.
I’m staying on this diet because my digestion is better no more gallbladder pain.
This illness is crazy😟
 

gregh286

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Sure is!

And if you'll let me be Devil's Advocate for a minute- maybe this illness has nothing to do with diet and it doesn't matter what you eat.

So eat the ice cream. :)
Yeah tend to agree. I suffer from mild gluten intolerance but think it's more a side issue to the CFs.
I mean not all celiacs have cfs either.
The pots etc still think related to the adren and nicotin g receptors on blood vessels. Poor signals to brain. They are overstressed or damaged.
 

Heartl

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Sure is!

And if you'll let me be Devil's Advocate for a minute- maybe this illness has nothing to do with diet and it doesn't matter what you eat.



So eat the ice cream. :)
Sure is!

And if you'll let me be Devil's Advocate for a minute- maybe this illness has nothing to do with diet and it doesn't matter what you eat.

So eat the ice cream. :)
@wabi-sabi
Unfortunately I feel worse when I eat ice cream or anything with sugar.
 

wabi-sabi

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OK, so I only looked at the abstract...'cause no brain.

But, the article talks about "There is an association between the consumption of high levels of serum glucose with cardiovascular diseases." Are they talking about vampires? Consumption of serum glucose? I don't eat anyone's serum glucose. I eat chocolate.

I think we need to differentiate eating an ice cream bar from "high serum glucose". Having a high blood sugar level does seem to be bad in lots of ways. That's really, really different from saying sugar causes oxidative stress.

By the time your body is so unbalanced as to have a high blood glucose level, lots has gone wrong, and lots more than eating dessert once in awhile.

I understand there is a connection between type 2 diabetes and heart disease. But I want to know if there is a connection between eating sugar and oxidative stress, if like me, a person really enjoys dessert, and my blood glucose and A1C are just fine.
 

Woof!

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Eliminating meat, 99% of grains (leaving oats only) and 99% of dairy to consume only whole foods (veggies, fruits, nuts, oats & spices) has made me feel soooo much better. Has it eliminated my ME/CFS and Sjogrens? No, but it has eliminated 90% of my migraines and the paunch below my waist (ugh! I hated that!). My overall quality of life is much better!

For years, I ate (inhaled, actually) a pint of Ben & Jerry's ice cream a night, but I don't miss it in the least. If I want a little "sweet" in my day, I'll cut up a ripe peach, layer it over some pecans and walnuts, top it off with a little dark chocolate, then microwave it a minute. Yum! (and no pauch or migraines!)

Wabi-sabi and I 'agree to disagree' on this (Hi Wabi!), but I'll say it again... garbage in means garbage out. It's less a matter of certain foods causing disease than it's a matter of certain foods making it harder to heal when my body needs help. Loving my body (at it's best and at it's worst) means giving it good fuel.
 

wabi-sabi

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Eliminating meat, 99% of grains (leaving oats only) and 99% of dairy to consume only whole foods (veggies, fruits, nuts, oats & spices) has made me feel soooo much better.
Hi Lynne! Yes, we will agree to disagree. I can't tell you how sick eating that way would make me!

Actually what I'm really trying to do here is deconstruct a bit of the diet mentality that would emphasize healthy diet over all other treatment modalities, hope/claim that diet has a strong effect in diseases other than obesity, CAD, PAD, HTN, or type 2 DM, and most of all regulate some foods as "garbage" or others as "clean".

I ate very "clean" before getting sick. It didn't do a bit of good on preventing this illness and trying to eat that way now has been progressively more impossible. I'm too ill to cook, fresh fruit and veg is so expensive, and most of all, it just doesn't agree with my tummy the way it used to.

That's really the issue- what's "healthy" depends on the illness. When I am too ill to eat, any calories I can get in- even yes, ice cream- help me from losing dangerous amounts of weight. That's just not a time for broccoli. I used to be a vegetarian and now I eat meat- fibrous beans just make me too sick. I can't believe that doing what I need to frankly survive is preventing my body from healing in some important way. My body isn't healing and won't heal. That's what having a chronic illness means- there's the cynicism creeping in!

I guess what I'm saying here is that this illness has been life shattering enough that it has overturned all my preconceptions on what lifestyle medicine can do. Trying to eat "clean" and "healthy" just causes me more harm at this point. I can get PEM from cooking a meal or I can eat a box of mac-n -cheese and preserve some brain function. You can guess which I choose! That's quite a painful wake up for me after all the people I have judged by their diets and found lacking. And lets not even get into social determinants of health and how that affects diet!

I certainly don't mean this as a personal attack on you. I'm just trying to be the opposite perspective that says: this disease is really hard, you can't treat it with diet, so eat the comfort food you need without feeling any food shame.
 

Heartl

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@Dr.Lynne I would love to see a “sample menu” of what you eat in a day. I too feel much better eliminating meat which I was adamant about not giving up. I’m getting input from all directions that I should eat more protein even though I’m eating legumes, nuts, veggies, and grains. I would love to try cutting out the grains and legumes to see how I feel but everyone is telling me I won’t get enough protein. I know this won’t cure my illness just trying to feel better anyway I can.
For sweetness I enjoy whole fruits and dates with almond butter & chocolate morsels inside 😋
 

wabi-sabi

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@Heartl
Fruits and veggies are great too! Fiber is a component of plant cell walls- thus only plant foods have fiber.
Most Americans do nto get enough fiber in their diets, which is why I would be wary of cutting out fiber containing stuff. Also, variety is the spice of life.

In terms of feeling better with a diet change, you need to know what's wrong that's causing the problem. For me, I have a touch of the gastroparesis that sometimes goes with ME/CFS. I don't have the IBS that often goes with ME/CFS. Dietary recommendations are quite different for gastroparesis vs. IBS, so to find a good thing to eat, you need to know the underlying cause. The general stuff about more fruit, veg, and whole grain is always nice, of course. This is where always recommend a real live dietician instead of getting advice of the internet.
 

Viala

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Diet change helped with some of my symptoms. I am now on a low fat, high carb, mostly whole foods vegetarian diet, but I can't say it is the perfect diet for CFS.

The problem with contemporary food is that it is not as it was hundred years ago. People try different diets because they don't feel well, for some it's meat, for others grains, sugar, fruit, sometimes fats, legumes. I doubt that the problem lies with any particular food, the problem lies with how this food is made nowadays. Pesticides, herbicides, antibiotics and salts in meat industry, forage is also not natural (gmo soy, which animal would eat it in high amounts in the wild?), and the soil is barren on which all today's food is grown.

That's in my opinion why we have problems with digestion and thus many other ailments. The best strategy would be to eat organic and cook on our own, but it is expensive and still, organic doesn't mean it comes from a healthy soil rich in all needed nutrients. I wish some day more attention would be paid to how our food is grown.
 

Heartl

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@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🤷‍♀️
 

ljimbo423

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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
That really is mysterious!

I've been on a low carb, very low sugar diet for several years and it helps me from getting worse. A few years ago I went up on my carbs from about 60 grams a day to about 150-200. Still eating only healthy food, no junk food.

Within a week or 2, I went from doing about 4 hours a day of physical activities (cooking, cleaning, etc.) to being mostly bedridden.