What is your diet like? Do you follow a specific one?

[Tulip]

I have been following a high protein, low carb diet with no sugar, caffeine or red meat for a few years now, and have found it the best for this disease. How ever I think it can still be improved upon. I have found that if I eat junk food, sugar, caffeine, red meat and starchy carbs, I am in so much pain through my whole body including my lymph nodes, and the brain fog is twice as bad.

Do you follow a specific diet and has it helped?.

 

[Tulip]

It appears that no one else here eats

 

[WillowJ]

I avoid all processed foods, most additives, preservatives, malted and fermented foods, etc. Also no pork, tuna, nightshades (potato, tomato, bell peppers, eggplant), mushrooms, soy, cumin.

 

[pebble]

I love Dr Myhills stone age diet as a permanent healthy way to eat for CFS/ME.

She is a genius and has specialised in CFS/Me for many years.

It has seriously improved my health and it is so simple to follow.

I also really enjoy the food.

Information is free on her website:

http://www.drmyhill.co.uk/wiki/Stone_Age_Diet

 

[lansbergen]

It appears that no one else here eats

I eat but do not diet.

 

[Tulip]

I eat but do not diet.

Everyone has a diet - that's what eating is...

 

[Tulip]

I love Dr Myhills stone age diet as a permanent healthy way to eat for CFS/ME.

She is a genius and has specialised in CFS/Me for many years.

It has seriously improved my health and it is so simple to follow.

I also really enjoy the food.

Information is free on her website:

http://www.drmyhill.co.uk/wiki/Stone_Age_Diet

Thanks for the link, I have read her diet plan before and some of it seemed quite good.

 

[lansbergen]

Everyone has a diet - that's what eating is...

I should have said dieting.

http://en.wikipedia.org/wiki/Diet

Diet, in relation to food, might mean:

* Diet (nutrition), the sum of the food consumed by an organism or group
* Dieting, the deliberate selection of food to control body weight or nutrient intake
* Diet food, foods that aid in dieting
* Cuisine, the diet of a particular culture

 

[Esther12]

I think its generally a bad idea to put too much effort in to restricting ones diet - unless there's a firm reason for doing so.

Caffeine sends me nuts, so I avoid that. I'm generally low sugar, and try to eat healthily. I react a bit badly to too much gluten and dairy, so try to be aware of that, and not have too much - but cutting things like that out totally seems more trouble than it's worth for me. With often being too tired to cook, it's easy to fall back on too much gluten (pasta, bread, etc) because it's easy - so I try to avoid it when I'm feeling well enough to cook properly, and then have it as a reserve for particularly tired days.

Because we're all ill and desperate to get better, and food is something we're all aware of putting in to our bodies, I think it's easy to go a bit paranoid about it, and start feeling like their must be some 'perfect diet' to be found which will help, when often there's not.

(That's not to say that some of you won't be genuinely badly affected by certain foods - just that I think it's easy for us to all exaggerate their significance if we're not careful. I think some can be far too dismissive of the impact different foods can have on different people, and some can be far too committed to rather ritualistic diets - I try to take a lazy middle route).

 

[ukxmrv]

I've not found diets very useful. Discovered more diets that make me worse than practical help (tried years of them). Sugar, coffee etc have no bad effects for me.

Early on I tested as allergic for a whole lot of things but cutting them out of my diet did little.

What does help

1. No wholegrains
2. No sulphurous veges
3. Milk and diary to a min
4. Eat lots of protein (esp meat)
5. Nothing fermented
6. Carbs in the morning good / evening not so

XMRV+

 

[caledonia]

I just switched to the Paleo diet about a month ago - no grains, beans or dairy. No artificial anything. Plus I just got a food allergy test back and am avoiding all of those allergies which are mainly (surprise, surprise) - grains, beans, and dairy, with a few vegetables and a fruit or two.

I've noticed that whenever I eat grains (even gluten free ones), I gain weight, and whenever I don't eat grains, I lose weight, so that's why I switched.

I haven't noticed any huge difference, but just in general, I feel good on it, and I think I've lost a few pounds (too chicken to get on the scale and check, but my clothes are fitting better).

Avoiding the food allergies is supposed to take a load off my adrenals. I have adrenal fatigue and it's supposed to be hard to get better if you don't take this step.

 

[WillowJ]

regarding my food choices, it's all empirical based on what makes me feel better. generally after removing an offensive food I have learned about excitotoxins or some other reason why it might bother me. also I find eating too much fiber is not good for my system (and I assume this is why oats and flax seeds bother me).

I've found no benefit to me from any externally-prescribed diet such as the anti-candida diet, Eat Right 4 Your Type, etc.

 

[maddietod]

I've been on the Specific Carbohydrate Diet twice, and both times I gained weight and had no health improvement. Crook's diet, back when I had candida 15 years ago, was fabulous - highly energizing. I avoid gluten completely; it makes me very tired. Nightshades give me arthritis, even in very small amounts. I eat sugar occasionally, for example when I make gluten free cookies. And I avoid dairy most of the time because it makes my vision blurry. I've always cooked from scratch and eaten out rarely, so my diet is very healthy by American standards, but I'm not too compulsive beyond the things that always give me trouble.

 

[heapsreal]

i eat a low carb atkins style diet and cant tolerate carbs very well and put weight on easy with carbs. Lasy year even being very strict with no carbs weight was piling on the waist as was cholesterol etc which i think was occurring because of cfs and how it makes our hormones whacky and this can cause insulin resistance etc and weight gain, so i have been using metformin for insulin resistance and also arimidex which helps lower estrogen which can also get to high in men contributing to insulin resistance, so this combination with my already low carb diet has seen me lose about 8 kg without any dietry changes and mostly from around my waist, weight around the waist(luv handles) is a sign of insulin resistance. CFS i think can cause hormonal problems/adrenal fatigue which has a carry on effect to other hormones like insulin resistance and estrogen dominance and then it it gets into a viscious circle all fuelling each other, plus inactivity doesnt help too. I think im getting on top of this part of it now. another peice of the jigsaw puzzle.

cheers!!!

 

[Snez]

I'm on a Paleo type diet- mainly vegies and meat, some nuts and good fats (including virgin coconut oil), only small amounts of fruits due to fructose malabsorption. I also have fresh green juices every day and aim to have at least 50% of my food in raw form. I seem to do much better on this, my gut is much more settled and less prone to various digestive and bowel disturbances. I have been eating this way for 2.5 years.

 

[Esther12]

Just a quick add - I got some cheap pastries when a local shop was closing (10p for a pain au raisin!) - had three over 24 hours, and the next day was really phlegmy and gagging to be sick.

Doh! Back to eating more healthily.

 

[Dainty]

I think the abosolute best diet for PWCs are those learned through trial and error. One thing we're really good at is listening to our bodies, so when we use that to our advantage then generally the results are good.

The first 2 1/2 years of severe CFS I had very extensive food sensitivities that changed rapidly and without warning. I spent several weeks eating nothing but rice because that was the only food I could tolerate wihtout a severe reaction. Taro was another one that I did for a while by itself. Other times I became sensitized to all known foods--literally couldn't eat anything without a severe reaction--thankfully those never lasted longer than a week. I got through them by fasting, sometimes I.V. nutrition, one time using synthetic food but I also developed a reaction to that. And through all that time I had IBS-like symptoms as well.

But the past 2 1/2 years I've stabilized with regards to diet, which is really nice, and I no longer have the gut issues as long as I stay within that diet. My diet is:

• Potatoes, Organic. Either Russet or Golden, cannot have other varieties. Must be peeled, and must be cooked at very high temperatures, usually frying is the only one that works. If not cooked at a high enough temperature I will recognize it by smell and taste, if I eat it anyway, I will gradually get more and more nauseous with each meal until quite ill. Must be cooked in certain pan, and if there are chemicals in the immediate environment (such as a "normal" person cooking the food) then I will smell it in the food, eating will make me gag and nauseus, and if I still force myself to eat it I will lose control of my bowels. Some entire batches of potatoes have something happen to them that I cannot tolerate, we do not know what it it is.
• Coconut oil. Good stuff. Haven't tried a lot of different kinds, the only issue has been one time tha I was given some scraped from the plastic tub.
• Beef. This meat tends to change every year or so, once it was buffalo, another time venison, lamb has been doable, but currently beef is the only acceptable one, hormone-free and all that. The fat makes me ill, so we actually have to buy whole cuts, trim them very thouroughly, and then grind it ourselves. We suspect the issue with fat is because toxins tend to be stored there.
• Honey. Not just any honey....I've found that I'll actually react to different honeys based on the nectar they were taken from. For example, my reaction to eating oranges and other similar citrus is an instant fever that then disappears a few minutes later. I tried honey once and got that same reaction, looked at the label and it said "orange blossom honey". Lightbulb! I'm still in teh process of learning which nectars are okay and which aren't. Thus far fireweed is the only sure one, though some batches are intolerable, recently tryign out a new source of wildflower that might be okay. Snowberry honey is definitely out. I find this all so fascinating.
• Pecan butter. This one's the most iffy of them all. I do react to it, it does still make me feel ill, but it is tolerable and mixes nicely with the honey for "emergency food". Must be organic, some batches aren't tolerable. The pecans must first be soaked and then dried to neutralize anti-nutrients, then are ground up. The most important thing, we've found, is that my body has issues with the pecan oil, so we leave out the jars for a while until it naturally separates. Sometimes we run out and then my only choice is the oily stuff...it definitely makes me sick.

I literally don't eat anything other than these five foods on a regular basis. I still attempt to eat other foods whenever I have an idea of something that my body might accept or that it might have changed its mind on. For example, with rice, I've tried every variety I know of prepared every way I can think of, on multiple occasions, and still can't get my body to be okay with it. So I really try each food item thoroughly, and have done that with all the foods. Over the years I've literlaly searched for lists of foods just to read through and see if there are any I haven't tried yet. I don't do that anymore...because there aren't any more...

 

[Tulip]

Great info everyone

I agree about the whole insulin resistance thing heapsreal, I have not been able to budge the weight I put on in pregnancy no matter how much I starved myself or exercised (before I had a massive crash). It's driving me up the wall.

I have tweaked my diet even more since starting this thread lol. I am now on the paleo diet but have added lactose free milk to it. I notice I am not alone with this choice of diet or rather "lifestyle".

 

[Valentijn]

I'm on low-carb as of May 30th, and I'm feeling a lot better. Not just with fewer cravings from blood sugar swings, but also better with regards to CFS pain and activity limitations. Granted, the first two days were absolutely horrible ... much worse than when switching to low carb in the past. Low-carb is the only way I've been able to lose weight in the past 7 years or so since I think I got sick (pretty functional til a few months ago).

The low glutathione theory for CFS symptoms might explain why low-carb works, since low glutathione means we don't process glucose (or fat and protein converted to glucose) efficiently, and the glucose backs up in the blood while also not providing the energy we need. With fats and proteins it sounds like they only get converted when there isn't enough glucose already in the blood, so a low-carb diet might make it easier for the body to regulate how much glucose is present in the blood. And of course, less glucose fluctuations means less cravings!

The theory of having more glucose than we can use leads me also to wonder if frequent small snacks would be more useful than normal meals in supplying energy to our cells. Instead of glucose backing up, getting stored as fat, and not being around anymore, maybe keeping a small but steady supply of glucose would result in a steadier flow of energy with less excess calories.

I've been trying a combo of low-carb and eating 50-100 calories once an hour, and had very good results with that yesterday, though that could just be a fluke.

 

[Tammie]

At the moment the only three foods i can eat without getting severely nauseated and/or throwing up are watermelon, pretzels, and one type of noodles (& even the noodles are iffy).....used to eat very healthily (primarily fish, veggies, and some whole grains) and I hate this