My nutrition

[river]

I need some help to figure out what kind of diet or eating regimen I should follow.

As weird as it may sound, the more I try to follow convention "healthy eating" rules, the worse I feel.
Expecially when I try to eat light or whole food, they just don't hold me and worsen my brain fog.

I seem to need heavy foods like casseroles, mac and cheese, avocado, sausages, pasta. For example fish doesn't hold me and while I try to eat some cod or salmon for health, I never feel good after eating it.

At the same time I'm kind of glucose intolerant and get glucose rush from heavy carb meal and even a weird vinegary-sour taste in the mouth that last for hours after eating something carb heavy. At the same time low-carb has the worst effect on me, whenever I try to just eat meat and vegetables and even tried to whole adaptation period once but after three weeks I collapsed with a glucose reading, at the hospital, of 25 mg/dl.

Although all the tests for wheat or lactor intolerance where negative, I have tried to go that route but that made me feel the worst ever, considering I tolerate white pasta more than whole grains in soups or whole wheat bread and that a piece of cheese is what often helps me not to collapse at afternoon.

Even food in my case has a day-after effect, like a glucose rush one day means feeling glucose depleted the next, what sometimes makes me feel good at dinner has a terrible after effect the next morning. There are foods I don't tolerate that makes me feel like I'm drunk or something including oatmeal, bananas, ice-cream, excessive animal fats (like fresh bacon or butter or cream; but I have no problem with olive oil) protein powders, soups, brown rice.

Still sometimes what agrees or doesn't with me is unpredictable and what I tolerate one day I don't the next.

As for me I'm a young male and although I haven't gained lot of weight with CFS, my abdomen has.
So I have actually very skinny legs, mildly skinny arms and a protuding belly.

Is there anyone with similar issues and body type that can explain what's going on and share few tips or nutritional approaches?

 

[curry]

I need some help to figure out what kind of diet or eating regimen I should follow.

As weird as it may sound, the more I try to follow convention "healthy eating" rules, the worse I feel.
Expecially when I try to eat light or whole food, they just don't hold me and worsen my brain fog.

At the same time I'm kind of glucose intolerant and get glucose rush from heavy carb meal and even a weird vinegary-sour taste in the mouth that last for hours after eating something carb heavy. At the same time low-carb has the worst effect on me, whenever I try to just eat meat and vegetables and even tried to whole adaptation period once but after three weeks I collapsed with a glucose reading, at the hospital, of 25 mg/dl.

This is very likely due to your blood sugar level is a mess.
To stabilise, a diet with a low Glycemic Index can help.

I follow this as part of my diet, but it took several weeks to see some considerable effects.

Even food in my case has a day-after effect, like a glucose rush one day means feeling glucose depleted the next, what sometimes makes me feel good at dinner has a terrible after effect the next morning. There are foods I don't tolerate that makes me feel like I'm drunk or something including oatmeal, bananas, ice-cream, excessive animal fats (like fresh bacon or butter or cream; but I have no problem with olive oil) protein powders, soups, brown rice.

Still sometimes what agrees or doesn't with me is unpredictable and what I tolerate one day I don't the next.

This might be due to a leaky gut, which can lead to occasional food allergy.

To treat a fermented and leaky gut

• Disinfect the gut: with nystatin/capryl acid/grapefruit seed extract and daily high doses of vitamin c (around 3 - 5 grams)
• Take some very good probiotics to build up the gut flora and heal the intestines wall - VSL3 and Mutaflor are some great products for this!

Diet

• Low glycemic index diet
• Skip fruits and lactose for some time, and see if this may be beneficial
• Eat small portions
• A fishoil supplement, like Eskimo Brain Sharp, may help too

Hope you feel better soon.

Best wishes,

 

[curry]

In addition, if you don't mind, write here your menu plan what you eat day by day.
Then maybe it will be easier to see what could be improved.

Cheers,

 

[justy]

I have to agree with curry about the above suggested interventions. i also added regular snacks of nuts when i was first getting my blood sugar under control. It actually took me a number of months to see good results and now my blood sugar is very well controlled. I am able to not eat between meals anymore, whereas for about the first 6 months i had to eat a high protein/comples carb snack every 2 hours at the most.
I tried all the above things that curry suggested and it really has helped. I can even tolerate very occasional wheat or small amount of sugar (maybe once every 10 days)
Good luck with your quest. Diet can b si aomplex and so individual.

 

[justy]

sorry about the typos- reads; so complex

 

[river]

In addition, if you don't mind, write here your menu plan what you eat day by day.
Then maybe it will be easier to see what could be improved.

Cheers,

Thanks for the reply
Today I skipped breakfast. I feel horrible when I eat in the morning, actually when I wake up in the morning so I tried to sleep at least till 10 am
Had lunch at 1.30 pm, my mother cooked stuffed bell peppers with ground meat, eggs and bread crumbs. Hate three of them with salad
For snack I had a plain yogurt with 4 wallnuts in it
For dinner I ordered a pizza and ate half with green beans salad
I will eat the other half of the pizza tomorrow lunch with maybe some tuna.

 

[Victoria]

Try 6 small evenly space meals.

(I go to bed at middnight & get up 8.30-9.0am. I eat a fairly sustaining "brunch" at 10.30am, usually miss lunch, might eat a snack mid afternoon but am usually out walking so don't often eat mid afternoon. And then eat dinner around 7.00pm. So these days I tend to eat only 2 main meals. Surprisingly, it seems to work for me. But many people recommend 6 small meals, so I thought I would suggest it).

Sometimes we crave the very things we are allergic (or sensitive to). It takes strong will power to abstain from the things which seem to work and try a different style of eating.

 

[Tulip]

I can see why you are crashing with your diet :Retro smile:

I had similar problems, including really bad hypoglycemia, until I cut out ALL starchy carbs, this includes rice, bread, pasta, potatoes, sweet potatoes, cakes, biscuits, peas, corn, all wheat products etc. And I cut out all dairy, sugar, caffeine and red meat. There have been studies on all these foods and they are not recommended for people with debilitating chronic illnesses due to their reactive/flammatory properties. I would not be eating spicey foods either as they too can cause a blood sugar crash.

I have now been able to regulate my sugar levels and no longer crash, plus my glands that once ached so badly I wanted to cut them out have now only a very dull ache and some days they don't ache at all. My brain fog isn't as bad as it was before either. Eating like this will help correct your body shape as well, which sounds like it is a reaction to the foods you are eating?.

The trick is to eat regularly, otherwise you will suffer a crash. These can be made into casseroles if you want, such as a chicken, mushroom, tomato and lentil casserole and it would be very filling.
I now eat (which is actually a diet recommended for people with thyroid problems, called the thyroid diet):

Chicken breast
Tuna in olive oil
Fresh fish
Turkey chops or turkey mince
Nuts
Seeds
Eggs
Lentils
Other legumes
Low starch veggies - mushrooms, zuchinni, lettuce, cucumber, capsicums, tomatoes etc
Low sugar fruit
Olive oil
Salt
Herbs
3-4 litres of water a day

Hope that helps :Retro smile:

 

[river]

I can see why you are crashing with your diet :Retro smile:

I had similar problems, including really bad hypoglycemia, until I cut out ALL starchy carbs, this includes rice, bread, pasta, potatoes, sweet potatoes, cakes, biscuits, peas, corn, all wheat products etc. And I cut out all dairy, sugar, caffeine and red meat. There have been studies on all these foods and they are not recommended for people with debilitating chronic illnesses due to their reactive/flammatory properties. I would not be eating spicey foods either as they too can cause a blood sugar crash.

I have now been able to regulate my sugar levels and no longer crash, plus my glands that once ached so badly I wanted to cut them out have now only a very dull ache and some days they don't ache at all. My brain fog isn't as bad as it was before either. Eating like this will help correct your body shape as well, which sounds like it is a reaction to the foods you are eating?.

Thanks for your reply
I might try this although I tried a no-starch diet before, it was low-carb too, but after three weeks I was chronically hypoglycemic and was losing too much weight even when eating lot of eggs, avocados and cheese. Also the problem is that I need lot of calories because, due to my age and in spite of CFS and inactivity, I have an high metabolism and probably needs around 2500 calorie a day and it's so hard to get enough calories when eating from a limited food lists and light foods. I need meals that are around 1000 calories with snacks being smaller but getting 1000 calorie from bulky foods usually make me feel bloated and I can feel my blood going to the stomach and leaving my arms and head bloodless.

 

[Tulip]

Thanks for your reply
I might try this although I tried a no-starch diet before, it was low-carb too, but after three weeks I was chronically hypoglycemic and was losing too much weight even when eating lot of eggs, avocados and cheese. Also the problem is that I need lot of calories because, due to my age and in spite of CFS and inactivity, I have an high metabolism and probably needs around 2500 calorie a day and it's so hard to get enough calories when eating from a limited food lists and light foods. I need meals that are around 1000 calories with snacks being smaller but getting 1000 calorie from bulky foods usually make me feel bloated and I can feel my blood going to the stomach and leaving my arms and head bloodless.

Add olive oil to all of your meals, it is high in calories but good for your heart. Do make sure you eat regulary, nuts are a great snack as they are really high in calories to. Base your meals around solid protein meals, eggs are not solid on their own if you have a fast metabolism. Make sure you eat chicken or turkey everyday as they are quite filling and have 3 protein and veggie meals a day, with low sugar fruit and nuts for snacks. If you lose weight, up your protein intake at main meal times.

Good luck, if you stick with it you will stabalise your blood sugar levels and keep the weight on

 

[Wonko]

eat more fat with it - your body needs a source of fuel - most people run on carbs almost exclusively these days - if you reduce the carbs by removing most simple carbs then you need another fuel source - the body doesnt tend to burn protein very efficiently (and runnign on protein exclusively can have negative effects) - add a small amount of extra virgin olive oil (or some other pure/unprocessed oil) to most stuff you cook - this will both slow down digestion (effectively lower GI) and provide another energy source for your body to use (and help improve taste and fill you up)

and on any lowered carb diet (lowered carb means 100-200g a day - all from complex carbs) drink more water - most people dont drink enough water anyway but it's vital if your on lowered carb diet - unless you like feeling like your dying.

I do not advocate low (less than 100g a day) carb diets for anyone who isnt already healthy - lowered carb has all the benefits but without as many adaptation problems

btw my bodies calorific needs vary from around 1200 to 4000 a day depending on how well I am - if I've crashed I can put on weight on 1500 cals a day - if I'm reasonanably ok and can lift then I will maintain weight on around 4000 cals a day - 4000 cals a day isnt diffcult to eat in simple foods (tho it is a pain in terms of bth cooking and simple time required to eat it) - even at that level I woudl very rarely eat 1000 cals in a single sitting as it would make me feel ill (I'm also diabaetic - uncontroleld even on medication until I adopted this type of diet - now fully controlled without any meds)

I aim for around 600-800 cals for a main meal and 300-450 for a snack - this is nothign in terms of pizza but in real food it's quite a bit eg
50g (dry) brown rice cooked - 200cal (aprox)
100g frozen veg cooked (to mix with rice to bulk it out) - 150cal (aprox)
homemade chicken curry (500g chicken breast makes 3-4 portions) - 450cal (aprox 150 of which are from olive oil)

thats around 800 cal and is a lot of food (2-3 inches deep on an average dinner plate) - I guarentee it will fill you up - only requires 1 lot of cooking for 4 meals (apart from rewarmign the rice and nuking the veg) - it's very low GI,high protein, low carb, contains a moderate amount of healthy fats and is both simple and healthy (and tasty for the first couple of days - after that it can become a bit boring)

800 cals is a slice of pizza - quite a small slice (IMO lol) - and pizza is high GI, has lots of bad stuff in (unless you make it yourself)

edit - just a thought but if your going hypo (determined how?) on low carb have you been tested for type 1 diabetes?

 

[river]

edit - just a thought but if your going hypo (determined how?) on low carb have you been tested for type 1 diabetes?

Thanks for your reply
My hypoglycemia was determined by glucometer reading and also glycemia readings when hospitalized.
Also I had a glycemic curve test which showed I tend to have rapid glycemic rises followed by sudden drop to the point of losing consciousness. I have been tested for diabetes and I don't have it because my fasting glycemia is either very low or normal, never high to diabetes reading.

Although I do have symptoms that reminds me of diabetes including incredibly thirst expecially at night, going to the bathroom too often (expecially in the middle of the night), acetone breath, cold sweating after eating something that trigger a "roller coaster blood sugar" with up and downs. I cannot tolerate foods like bananas, raisins, dried figs they all make me feel ill, I start to feel a vinegar taste in my saliva and sweat and feel like I'm going to pass out, if I attempt to eat them.

But with pasta and bread I actually feel fine and have no reactions. In fact I tolerate bread way better than apples or pears, which still trigger some blood sugar going havoc reaction in my body.

 

[curry]

Thanks for your reply
My hypoglycemia was determined by glucometer reading and also glycemia readings when hospitalized.
Also I had a glycemic curve test which showed I tend to have rapid glycemic rises followed by sudden drop to the point of losing consciousness. I have been tested for diabetes and I don't have it because my fasting glycemia is either very low or normal, never high to diabetes reading.

Although I do have symptoms that reminds me of diabetes including incredibly thirst expecially at night, going to the bathroom too often (expecially in the middle of the night), acetone breath, cold sweating after eating something that trigger a "roller coaster blood sugar" with up and downs. I cannot tolerate foods like bananas, raisins, dried figs they all make me feel ill, I start to feel a vinegar taste in my saliva and sweat and feel like I'm going to pass out, if I attempt to eat them.

But with pasta and bread I actually feel fine and have no reactions. In fact I tolerate bread way better than apples or pears, which still trigger some blood sugar going havoc reaction in my body.

Hm, beside of the obvious that you are either fructose intolerant or just fructose sensitive, there might be some issues with low/high thyroid hormones (hashimoto)?

But more likely it is just blood sugar swings.
Btw, do you drink sugary drinks, like coke etc.?

 

[Wonko]

erm..type 2 diabetes has higher than normal bood sugars - type 1 could be lower or higher - so a much lower than normal fasting blood sugar if repeated (3 times I think) is enough in itself to get a diagnosis of type 1 - I could be wrong but AFAIK thats the way it works (at least in the UK)

in fact with type 2 a single reading above a certain value is enough in itself so presumably the converse could be true in type 1 as the body is supposed to maintain blood sugar within a fairly well defined range - anythign outside this range isnt normal and regardless of the acual cause (other than starvation obviously) indicates a fault with blood sugar management which is otherwise known as diabetes

rapid weight loss could also suggest it - tho tbh it could mean a lot of things - acetone breathe woudl suggest ketosis and if not on a very low carb diet at the time would suggest a significant metabolic issue (probably with blood sugars as ketones are a byprotdct of metabolising fat)

what your describing isnt normal even for those with ME and you do need to get this investigated properly river

edit - btw I had all the symptoms your descibign come and go for years- hospital blood tests said it wasnt diabetes - then had a period where things escalated and I lost 4 stone in under 2 months - no matter how much or what i ate the weight just kept falling off - massive keytone breathe - in fact it seemed to be coming out of my pores not just on my breathe - I get and have had for a long time episodes of severe confusion and core pain (feels liek my insides are turnign to stone and dying) which leave me unable to stand, move or communicate - these escalated from 2-3 times a year to at least once a day - massive and I mean massive thirst (I litterally couldn't drink water fast enough for long enough to make it go away), with associated bathroom visits - and yes banana's etc made me feel ill but bread, pasta seemed fine

visted GP and was told no it definately wasnt diabetes so I got my own meter and test strips and found I had blood sugar levels off the chart (mostly above 33.3 on a UK test meter), pretty high keytone level on test strips - went to GP again and was resignedly still told I definately didnt have diabetes - until I showed her the meter readings and let her take one herself which left her no room to manoveure - if you are down as ME/CFS then unless YOU can provide your own evidence which isnt just symptom based then you get ignored or fobbed off

 

[river]

Thanks for replying
I will ask my doctor to get checked for diabetes type 1, fructose intolerance and other things.
I stay away from sugary drinks since I have linked some of the worst blood sugar swings I experience with their consumption, expecially fruit juice but also coca-cola and even ice thea.

As for the acid taste in the mouth, I have been talking about this with doctor for years but none of them has an answer and all of them thought it was weird.
It sounds like acetone but doesn't work like actone. One night for example I woke up at 4 am all sweated, feeling spacey and hypoglycemia and I ate some strawberry jam/jelly from the tub and immediately I had that horrible vinegar acid sensation in the mouth as my symptoms worsened.

Someone wrote to me to suggest there might be something wrong with my adrenals too.

Wonko, so you keep your diabetes under control with that diet? Without injecting insulin?
All the time I tried a low-carb, and felt miserable physically but even mentally (while usually ME doesn't have mental effects on me, cognitive yes but not emotional, while low-carb made me feel depressed and overwhelmed without a reason) even long after the so called "adaptation period", it was always around 40-60 or even 80 grams of carbs but that wasn't enough for me. Your lowered carb approach sounds a lot better.

Can you post more meal samples from what you usually eat?

Today I ate:
Half pizza (from yesterday)
tuna and salad

snacked with yogurt and nuts

two sausages with broccoli
ricotta cheese and peas

snacked with an hard boiled egg

I put a lot of oil in everything I eat
I don't gain weight except in my belly and I'm very skinny anywhere except in that area.

 

[Wonko]

yes - my blood sugar levels are now considered excellent without any medication (Hba1c level of 5.4 on last test) partially from diet and partially from liftign weights

on a more normal diet (NHS advised) with medication and what little cardio I could do (ie walking as far and as long as I could each day until my legs and feet refused to hold me up anymore - was doing 3-4 miles a day 3-4 days a week - took me 6-7 hours a day - took over a month until I recovered enough so I could even limp again - no one could say I didnt try lol) - I couldnt control my blood sugar levels to any useful (or even predictable) degree - and I've never eaten cakes, biscuits, sweets, used sugar etc. etc.

low carb is definately not for everyone - and it can both make you feel pretty bad and have a negative effect on your mental health - the brain doesnt like losing it's high energy simple carbs and will reduce seratonine and endorphin levels to let you know it's unhappy lol - in fact afaik parts of the brain can only run on simple sugars and whilst the body can make these from other energy sources it doesnt like it much and can only make a limited amount.

afaik lowered carb doesnt cause these potential issues - tho a sugar withdrawal isnt uncommon if you've been consuming a lot of them previously.

edit - unless thats natural yogurt I'd drop it from your diet- most supermarket yougurts are largely sugar in gloop - tasty but not ideal for anyone with sugar issues - your probably not far off your 2500 calories there (depending on the pizza it could be sigificantly more or less) - but only 1200 or so are from actual food and the rest from the pizza (dependant on portion sizes) - you could fit a lot more nutrition into that amount of calories

it's getting late but I'll try to post up some basic meal options with a aproximate calorie count tomorrow when I'm more functional - probably late afternoon

 

[Glynis Steele]

Hope you guys dont' mind me jumping in here, but you say you feel drunk when certain foods are eaten? Have you read my post on d-lactic acid. It is described in medical literature as "the feeling of being intoxicated in the absence of alcohol". DLA has been implicated as being involved in CFS in the De Meirleir study. It is caused by carbs being fermented by d-lactic acid producing bacteria. It does not show up on routine blood tests, and a specific test is required, usually through a GI. The treatment to resolve dla is usally taken on by a GI, too.

This link regarding CFS/DLA says patients complained of feeling drunk without consuming alcohol

http://www.breakspearmedical.com/files/documents/Issue24Spring2010web_000.pdf

This links states the same thing (though the person has a short bowel).

http://www.amc.edu/academic/gme/programs/Gastroenterology/documents/wang_crohns.pdf

For more info on dla, this is my link to info I have posted.

http://www.forums.aboutmecfs.org/showthread.php?8022-D-Lactic-Acidosis-in-CFS

Hope these help.

BW

Glynis

 

[river]

Hope you guys dont' mind me jumping in here, but you say you feel drunk when certain foods are eaten? Have you read my post on d-lactic acid. It is described in medical literature as "the feeling of being intoxicated in the absence of alcohol". DLA has been implicated as being involved in CFS in the De Meirleir study. It is caused by carbs being fermented by d-lactic acid producing bacteria. It does not show up on routine blood tests, and a specific test is required, usually through a GI. The treatment to resolve dla is usally taken on by a GI, too.

This link regarding CFS/DLA says patients complained of feeling drunk without consuming alcohol

http://www.breakspearmedical.com/files/documents/Issue24Spring2010web_000.pdf

This links states the same thing (though the person has a short bowel).

http://www.amc.edu/academic/gme/programs/Gastroenterology/documents/wang_crohns.pdf

For more info on dla, this is my link to info I have posted.

http://www.forums.aboutmecfs.org/showthread.php?8022-D-Lactic-Acidosis-in-CFS

Hope these help.

BW

Glynis

Sounds interesting, I will talk to my doctor about this
Do you think there's any relation between d-lactic acidosis and an acid vinegary taste in the mouth immediately after eating a food? (but only foods with carbs or sugar)
Indeed it tastes like fermented apple cider or something.

What is weird is that sometimes, again this condition is so unpredictable, I feel the same drunkess post meal when eating no-carb meals with an high fat content: for example bacon and eggs. High-carb meals trigger this acid-soar-fermented taste in the mouth but both high-carb and no-carb meals trigger the immediately after meal drunkness feeling.

 

[Glynis Steele]

Hi,

I have to point out that your dr will probably not realise the implications of dla. It may be helpful to print out the articles above, as dla is a speciality of a gastro. It won't show up in regular blood tests, and a path lab that does the testing for dla will need to be found, or a d-lactate assay kit will need to be purchased. I have not read anything regarding the taste in your mouth, but my daughter has the same problem, sometimes her breath smells sour-ish. I know dla is unpredictable at times. The best time to test for it would be late afternoon, or early evening, as it builds up after each meal consumed. Treatments include nil by mouth, low carb diets, but the main treatement is minimally absorbed antibiotics and IV sodium bicarbonate.

The main symptom's are impaired conscious level, which range from somnolence (sleepiness), lethargy, and drowsiness. Other symptom's include changes in gait, slurred speech, sometime's difficulty speaking, inability to concentrate, confusion, clumsiness, nystagmus (flickering of the eyeballs), dizziness, irritability, grinding of teeth, craving carbs, weakness and nausea.

The thing is even gastroenterologist's would be skeptical that DLA could be involved in CFS. They only see it in short bowel patients. To see it in a person with an intact bowel would be unheard of, and I think that is where the problem lies. They first see their patient as mentally alert, but who have a diseased bowel. It is easy for them to see the effects of dla on that same patient, once their bowel has been shortened. If they were to see a CFS patient, the link would not be made, and also the symptoms themselves are, I think, more subtle than in a short bowel patient. Outside of gastro's, the relevance is being missed. The fact that it does not show up in a routine blood test does not help either.

I don't know if your dr would be willing to refer you to a gastro for the test, or whether the gastro would do the test. They tend to have a narrowed field of vision in regard to dla, and as (I presume) you have an intact bowel, they might not get it. They might be willing to test the stool for bacterial content, and treat accordingly, if they find it has a high degree of d-lactic acid producing bacteria, such as lactobacilli, strep, or other species that produce dla. Again, this overgrowth would have to be specifically tested for, as routine path labs test for pathagenic bacteria, thay may not look for lactobacilli overgrowth.

Hope this helps.

Glynis

 

[river]

Lately I have discovered that I feel better, as far as nutrition is concerned, when I eat very slowly.
I didn't notice it but I was eating very fast, gulping down food, not chewing properly and feeling still hungry after a big serving.
The other day I asked my cousin to stay for dinner and I was forced to eat more slowly and I actually felt full after a normal serving and didn't feel as spacey and drunk as usual.

Then I remembered how we are supposed to stop periodically in between activity, whether it is 30 seconds of light exercise and then rest for 2 minutes or reading for 5 minutes and then rest for 15 and things like that. I'm trying something similar with food: chew one bite of food and then rest for 1 minute, check another bite and rest for another minute, focusing on the food taste. And I actually feel less reactive after a meal, i feel less blood pooling in the stomach and less bloating, I feel no more nervous hunger and the after meal spaciness and fogginess has greatly reduced.

What do you think?