The ultimate poll about CFS/ME diet

[rwac]

If anyone has ideas about why my hands go numb if I eat even small portions of grains/starches, I'd love to hear them.

The resistant starch may have worsened your SIBO or caused a different sort.
Have you tried eating your starch with coconut oil?
Potatoes stir fried in odorless refined coconut oil should work, the coconut oil is anti-bacterial.

 

[JAH]

I tried a raw food diet and it didn't work.

I tried an allergy elimination diet and it helped me. Figured out the cause of chronic low grade headaches and brain fog. I'm also gluten free, which has helped with abdominal cramping.

Might want to put "gluten free" as a diet option.

Great idea for a thread, JAH

 

[leela]

IMO a key diet not mentioned in the poll is 100%(or closet possible) organic, because between the heavy, heavy use of glyphosate, other chemicals, and bromination in conventional foods, our immune systems/digestive systems/thyroid can easily get overloaded. This is especially true in the US where these things are off the charts.

It's not a cure, but I think I'd be way sicker if I didn't do mostly organic and very few processed foods.

 

[Gondwanaland]

If anyone has ideas about why my hands go numb if I eat even small portions of grains/starches, I'd love to hear them.

Could it be diabetic neuropathy from insulin resistance?

 

[Timaca]

I'm still trying to figure out my food intolerances. I do seem to have a histamine intolerance. I may possibly have a benzoate and corn intolerance (need to recheck this).

I did an elimination diet in December of 2012, and surprising found myself feeling much better. So, food is a role in my CFS. I also have chronic infections and antimicrobials have helped me.

Right now I'm off the top 10 allergens, wheat (all gluten foods), dairy, soy, eggs, corn, seeds, tree nuts, peanuts, fish (actually I can eat fish, but I don't eat much of it because I've had high mercury levels due to fish intake), and shellfish. It seems I also can't tolerate animal protein except for very fresh fish....and I suspect it is due to histamine issues. Rice is the only grain I'm currently eating, but I hope to expand that soon.

How I'm feeling (much better) and what I'm eating can be found on this blog post.

Best,

 

[Old Bones]

The resistant starch may have worsened your SIBO or caused a different sort. Have you tried eating your starch with coconut oil?

@rwac No, I haven't. I'll definitely try your suggestion of eating starch with coconut oil. Thanks.

Could it be diabetic neuropathy from insulin resistance?

I've wondered about insulin resistance as a possible reason for my numb hands after eating carbs. Both my father and sister were/are diabetic. So far, I'm not -- perhaps because of what I usually don't eat (sweeteners, grains, starches, etc.). My father, and sister, pretty much ate/eat for taste, and not health.

 

[Gondwanaland]

I've wondered about insulin resistance as a possible reason for my numb hands after eating carbs. Both my father and sister were/are diabetic. So far, I'm not -- perhaps because of what I usually don't eat (sweeteners, grains, starches, etc.). My father, and sister, pretty much ate/eat for taste, and not health.

For an early diagnose you need an insulin assay. The high glucose in the blood test is too late.

 

[JaimeS]

while some respond like if they were rescued from the darkness

I suspect I could have had ME at age 24. I had horrible LRQ pain like you would not believe. Exhausted and pallid and miserable, with awful digestion. I went off of added sugars, diet soda and ANY carbs. I drank water laced with grapefruit seed extract all day, every day. The first few days were like being beaten with the fatigue stick -- Herxheimer liek whoa -- and then... yes, it was like being rescued from the darkness. Which is why I'm doing it again.

Eventually I added back a square of chocolate a day, and then an apple a day, and then one sugary drink a day, and my health returned to something like baseline over a period of three or four months. I felt like I'd dodged some kind of bullet, but it was a boomerang -- it hit me in the back of the head again a few years later!

-J

 

[JaimeS]

If anyone has ideas about why my hands go numb if I eat even small portions of grains/starches, I'd love to hear them.

It might be B-vitamin related. I get this too, and I just found out that some of the bacteria in our bodies, Yersinia, T.B., and E. coli, for example, can't make B12 for their methylation cycles. Instead, they steal ours.

Since carbohydrates are such good bacteria food, they may be causing the bacteria to proliferate, stealing B12 at a swifter rate than usual, and causing the typical low B12 tingle. The percentage of bacteria that can't make their own B12 may be higher in us than in others, and/or we may simply have a larger colony of gut bacteria in general.

110% speculative... like 99% of what's discussed here!

Could you have an intolerance to a kind of carb or a type of sugar? That's another possibility, unfortunately.

-J

 

[Old Bones]

For an early diagnose you need an insulin assay. The high glucose in the blood test is too late.

Thanks, @Gondwanaland . I'll ask my doc at my next appointment. I do remember that my sister's diabetes diagnosis was made when she was having blood tests several times per day while in hospital. Her fasting blood glucose tests done during routine annual check-ups were apparently normal.

 

[Old Bones]

It might be B-vitamin related. I get this too, and I just found out that some of the bacteria in our bodies, Yersinia, T.B., and E. coli, for example, can't make B12 for their methylation cycles. Instead, they steal ours.

Since carbohydrates are such good bacteria food, they may be causing the bacteria to proliferate, stealing B12 at a swifter rate than usual, and causing the typical low B12 tingle.

Thanks, @JaimeS . Perhaps increasing my B12 intake would help, assuming my body absorbs nutrients adequately. It seems worth a try.

 

[JaimeS]

Thanks, @JaimeS . Perhaps increasing my B12 intake would help, assuming my body absorbs nutrients adequately. It seems worth a try.

Start low if you do -- it's GREAT for me, but some CFSers react.

-J

 

[Gondwanaland]

Thanks, @Gondwanaland . I'll ask my doc at my next appointment. I do remember that my sister's diabetes diagnosis was made when she was having blood tests several times per day while in hospital. Her fasting blood glucose tests done during routine annual check-ups were apparently normal.

Wow if you have diabetes history in your family then you must watch this

 

[Old Bones]

Wow if you have diabetes history in your family then you must watch this.

@Gondwanaland Fascinating -- it looks like my sister, while in hospital, was unintentionally tested similar to the protocol for an insulin assay test by having her blood drawn at random times during the day relative to when she had last eaten. Her medical circumstances placed her near death for reasons unrelated to blood sugar/insulin, but this testing was routine for all patients. It seems I'd have to be hospitalized in a similarly-dire situation to be tested this way. I just did a search of tests available at my local lab, and the insulin assay test isn't among them. Why am I not surprised? Diagnostically, we're pretty backwards here in Canada. Nevertheless, I will talk to my doc about it.

 

[u&iraok]

I don't follow a specific diet. What works for me:

Organic or responsibly raised meat
LOTS of organic fruits and vegetables
Some grains like amaranth, brown rice, millet
German rye bread and raw milk cheese sandwiches, yum!
No wheat
Soaked nuts
Homemade kefir (when it works!), kimchi, sauerkraut, miso
Snacks like popcorn with olive oil, lemon juice, oregano, salt, pepper or fake cookie dough--butter, water, oats, a little non-wheat flour, maple syrup, touch of salt.
Very few processed foods
Very little sugar, caffeine, alcohol

I eat light breakfasts and light lunches and big dinners. Even thought this is opposite of what they say to do, it works for me. 3 regular meals, can't miss a meal. Snacks don't work for me.