Resource "Wired to Eat" - The Best Dietary Guide for ME/CFS and Fibromyalgia?

[Cort]

Cort submitted a new resource:

"Wired to Eat" - A Dietary Guide That Works for ME/CFS and Fibromyalgia? - Remy provides an overview of "Wired to Eat" - a personalized diet guide by Robb Wolf

(Remy reviews "Wired to Eat" - a book that provides a way that people with chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) may be able to use to create a diet that works for them.

The focus is on carbohydrates - currently an area of intense interest in ME/CFS and FM given some findings suggesting (a) that energy production is low, (b) that the problems with energy production probably involve transforming glucose (carbohydrates) into energy, and (c) that glucose...​

Read more about this resource...

 

[Donna C]

I strongly disagree with the idea of a Paleo/Ketogenic diet for ME/CFS. I did it for 6 months because I was taking GcMaf. First, it doesn't work for ME, at least not for me. I started out at a healthy weight with a great BMI and looked pretty good at 5'2" and 107 lbs. Good muscle tone in my arms, legs, abdomen. I'm now 93 lbs and I can't gain the weight back. The Paleo diet ruined my body. I would have stopped sooner if not for the GcMaf, not that that worked either. I lost 10 lbs I didn't need to lose, lost muscle too after what little fat I had was gone. I now am so skinny my ribs show. I lost a lot of muscle in my arms, legs, abdomen and can't wear my favorite clothes anymore, not that they fit me. My skin has turned crepey, like an old lady. Because, of course, I can't exercise with ME/CFS to get any muscle back or I crash. I look like I am anorexic or bulimic. And I can't gain it back - no matter how hard I try. I guess if you are over-weight, it is a good weight loss diet. But that's it. Your food choices are really limited too. I gag at the sight of organic white meat chicken, sweet potatoes and salmon. I am sick to death of salads. And we shouldn't be eating fish anyway with the pollution of the oceans. And those eye-catching recipes they have online for paleo? You try making them when you have ME. You're lucky you can get to the kitchen and eat anything. I regret ever doing it and I will never look like I did before I started it. This diet is really bad advice.

 

[Cort]

I strongly disagree with the idea of a Paleo/Ketogenic diet for ME/CFS. I did it for 6 months because I was taking GcMaf. First, it doesn't work for ME, at least not for me. I started out at a healthy weight with a great BMI and looked pretty good at 5'2" and 107 lbs. Good muscle tone in my arms, legs, abdomen. I'm now 93 lbs and I can't gain the weight back. The Paleo diet ruined my body. I would have stopped sooner if not for the GcMaf, not that that worked either. I lost 10 lbs I didn't need to lose, lost muscle too after what little fat I had was gone. I now am so skinny my ribs show. I lost a lot of muscle in my arms, legs, abdomen and can't wear my favorite clothes anymore, not that they fit me. My skin has turned crepey, like an old lady. Because, of course, I can't exercise with ME/CFS to get any muscle back or I crash. I look like I am anorexic or bulimic. And I can't gain it back - no matter how hard I try. I guess if you are over-weight, it is a good weight loss diet. But that's it. Your food choices are really limited too. I gag at the sight of organic white meat chicken, sweet potatoes and salmon. I am sick to death of salads. And we shouldn't be eating fish anyway with the pollution of the oceans. And those eye-catching recipes they have online for paleo? You try making them when you have ME. You're lucky you can get to the kitchen and eat anything. I regret ever doing it and I will never look like I did before I started it. This diet is really bad advice.

Sorry to hear that. Your experience and others indicates that every one should probably approach every change = particularly significant dietary changes - cautiously. You gave it your best shot but it may be that if someone is not benefiting from a dietary change within a decent amount of time or its not going well, then it's probably time to stop hoping that things will turn around and stop it.

As to the diet being bad advice, I disagree. Certainly for some people but others have benefited. It seems that virtually every treatment that works for someone seems to have bad results for someone else.

I think we should be particularly careful with such fundamental things as diets though and thanks for the warning.

I wonder if this book would have helped - would have identified which carbs were good for you. In fact, I wonder if it would help now - if it could help identify a way back to health for you (???)

Maybe someone reading this blog will have some ideas how to help.

 

[Stephanie 'Stevie' Stultz]

I do agree that everyone is unique and their diet reactions are unique. When I first got sick with ME/CFS 15 years ago, having the food sensitivity tests really helped, although they are essentially a moving target. If one still is dealing with Candida and/or Leaky Gut, WHATEVER you're eating, sometimes even if you're rotating foods, they can migrate through the intestinal wall and you're still sensitive to it. Once I got that under control, it really made a huge difference in my digestive health. But, this discussion is more about carbs vs proteins. I do feel better when I eat larger amounts of proteins and less carbs and sugars. But then, I've always had issues with hypoglycemia, so that plays a part. Once, when my sister insisted I try being a vegan, it was a disaster! Even proteins like beans left me feeling woozy and awful if I didn't eat meat and eggs during the day. And vegans have to be so careful as typically many don't realize that you don't get enough B12 in their diet. And when you can't exercise and build back muscle, it seems to me that you NEED good, high quality protein to try and maintain what little muscles you retain. The suggestion in the article is a good one, that you have a cheap glucose meter. You can do your own tests. I bought a meter that included 100 strips for about $21.00 on Amazon. That was a whole lot cheaper than trying to get a prescription from my doctor and/or pay a co-pay.

 

[Cort]

I do agree that everyone is unique and their diet reactions are unique. When I first got sick with ME/CFS 15 years ago, having the food sensitivity tests really helped, although they are essentially a moving target. If one still is dealing with Candida and/or Leaky Gut, WHATEVER you're eating, sometimes even if you're rotating foods, they can migrate through the intestinal wall and you're still sensitive to it. Once I got that under control, it really made a huge difference in my digestive health. But, this discussion is more about carbs vs proteins. I do feel better when I eat larger amounts of proteins and less carbs and sugars. But then, I've always had issues with hypoglycemia, so that plays a part. Once, when my sister insisted I try being a vegan, it was a disaster! Even proteins like beans left me feeling woozy and awful if I didn't eat meat and eggs during the day. And vegans have to be so careful as typically many don't realize that you don't get enough B12 in their diet. And when you can't exercise and build back muscle, it seems to me that you NEED good, high quality protein to try and maintain what little muscles you retain. The suggestion in the article is a good one, that you have a cheap glucose meter. You can do your own tests. I bought a meter that included 100 strips for about $21.00 on Amazon. That was a whole lot cheaper than trying to get a prescription from my doctor and/or pay a co-pay.

I agree... What I really like about this book is the ability to actually test separate foods for how they affect my glucose levels. I keep thinking of Armstrong's I think it was study which found higher glucose levels in ME/CFS patients.

 

[tatt]

Well I know I have a problems with carbohydrate and glucose levels and a gluten free diet made me so well for years I thought I was cured - only to relapse after too much exercise. Salads are essential for me. I gave up on a ketogenic diet after about 10 days though as made me feel too ill to continue. Book sounds interesting to me and I have a glucose meter but the strips are exorbitant.

Sounds as though Donna is still eating the diet or has only recently stopped. Don't know what to suggest except maybe avocado (for healthy fat) and a judicious amount of dark chocolate. Many people with ME are magnesium deficient and dark chocolate is pretty good for that.

 

[rebar]

The point is being missed, I agree with you Cort. It offers a way of evaluating carb intake, using the test and personal symptoms throughout the
day allows reasoned choices about what to eat, when to eat, etc.
We share many symptoms and biologic disfunction, but our triggers are often unique to ourselves.
Also it looks like Walmart has a cheeper meter, and the test strips are significantly less money, it was also rated as one of the better ones by Consumer Reports.

 

[Donna C]

I had one or more protein shakes a day during this diet so lack of protein was not an issue in muscle loss. Good Paleo (expensive) protein, Julian's, either egg white or beef derived as whey and pea are not allowed. I ate 95% dark chocolate every day and added cacao to my shake. There was enough magnesium in my supplements (even though my magnesium level was already fine). I did a vitamin B12 shot every week (even though my B12 level was good), purchased from Dr. Enlander in his combo shots with Hepapressin and glutathione. Unfortunately, the regimen for GcMaf required 6 months so I had to stay on the diet for that long. The only thing I had to cut down on was Vitamin A as my level was 112 which is above normal. I was hungry all the time. I don't see how most people with ME, (except the mildest cases) can make those Paleo recipes that supposedly taste good. I was stuck with plain boring limited food. And I did cheat a little, very little toward the end.

 

[Remy]

I am sick to death of salads. And we shouldn't be eating fish anyway with the pollution of the oceans. And those eye-catching recipes they have online for paleo? You try making them when you have ME. You're lucky you can get to the kitchen and eat anything. I regret ever doing it and I will never look like I did before I started it. This diet is really bad advice.

I feel like you read the words "ketogenic" and "Paleo" and had a knee jerk reaction based on your experience without actually reading the review.

I think it would be hard to find a single doctor who would say that eating real, whole foods is not a wise strategy for all of us. Where we all differ is in terms of the carbohydrate levels that we tolerate as individuals. This book gives us a chance to figure that out for ourselves using the blood glucose meter. It's not saying (nor am I) that everyone should eat one way or another, it's actually giving you the tools to make informed decisions for yourself.

I don't know how you can complain about lack of choice really either. You can eat anything you want as long as it's not a processed food-like substance, to quote Micheal Pollan. I know some people are very strict about Paleo, but I believe you can get 90% of the results without being a slave to "rules". Paleo is a spirit and attitude as much as a diet plan. Just eat real food, a lot of vegetables, not too much quantity. Simple, really.

 

[Cort]

Well I know I have a problems with carbohydrate and glucose levels and a gluten free diet made me so well for years I thought I was cured - only to relapse after too much exercise. Salads are essential for me. I gave up on a ketogenic diet after about 10 days though as made me feel too ill to continue. Book sounds interesting to me and I have a glucose meter but the strips are exorbitant.

Sounds as though Donna is still eating the diet or has only recently stopped. Don't know what to suggest except maybe avocado (for healthy fat) and a judicious amount of dark chocolate. Many people with ME are magnesium deficient and dark chocolate is pretty good for that.

Ketone strips are exorbitant! but glucose strips are not. I'm going to get a glucometer and use the glucose strips to check out what happens when I eat different carbs. I wouldn't be surprised at all if I did OK on some carbs that I'm avoiding...

I will probably get some ketone strips and test once a week or two.

 

[Cort]

I had one or more protein shakes a day during this diet so lack of protein was not an issue in muscle loss. Good Paleo (expensive) protein, Julian's, either egg white or beef derived as whey and pea are not allowed. I ate 95% dark chocolate every day and added cacao to my shake. There was enough magnesium in my supplements (even though my magnesium level was already fine). I did a vitamin B12 shot every week (even though my B12 level was good), purchased from Dr. Enlander in his combo shots with Hepapressin and glutathione. Unfortunately, the regimen for GcMaf required 6 months so I had to stay on the diet for that long. The only thing I had to cut down on was Vitamin A as my level was 112 which is above normal. I was hungry all the time. I don't see how most people with ME, (except the mildest cases) can make those Paleo recipes that supposedly taste good. I was stuck with plain boring limited food. And I did cheat a little, very little toward the end.

So the GcMaf protocol required that you be on the ketogenic/Paleo diet?

How was your fat intake? Eat lots of fats?

I remember that Chris Armstrong said when people starve they need certain kinds of nutrients to bring them back. You weren't starving but I wonder if something like that is applicable in your case (???). They are doing a kind of staggered nutrient / supplement program to see if it helps in ME/CFS.

 

[Cort]

The point is being missed, I agree with you Cort. It offers a way of evaluating carb intake, using the test and personal symptoms throughout the
day allows reasoned choices about what to eat, when to eat, etc.
We share many symptoms and biologic disfunction, but our triggers are often unique to ourselves.
Also it looks like Walmart has a cheeper meter, and the test strips are significantly less money, it was also rated as one of the better ones by Consumer Reports.

I like it....Rebar can you tell me which one that is?

 

[Remy]

Ketone strips are exorbitant! but glucose strips are not. I'm going to get a glucometer and use the glucose strips to check out what happens when I eat different carbs. I wouldn't be surprised at all if I did OK on some carbs that I'm avoiding...

I will probably get some ketone strips and test once a week or two.

I have a source for ketone strips on FB that is much more reasonable than anywhere else. Still expensive though, but less $$. PM me if you'd like the details.

 

[Cort]

Thanks

I have a source for ketone strips on FB that is much more reasonable than anywhere else. Still expensive though, but less $$. PM me if you'd like the details.

 

[rebar]

ReliOn Micro from Walmart at number 8

https://www.diabetesdaily.com/blog/2015/06/consumer-reports-glucose-meter-ratings-2015/

 

[CJB]

Was able to get this from the library as an audiobook and it is terrific. Tested kidney beans, garbanzos, rice, quinoa, bananas and yams. Turns out I can eat 50g net carbs worth of everything but the rice and quinoa and my blood glucose drops right back to where it was after 2 hours.

I have so many thoughts about this, but no energy to put them down for you. I highly recommend his podcast, Paleo Solution.

Currently at the end of a week of ketogenic dieting. No bloat. Hallelujah. Some interesting discussions across the internet about fiber, pre- and pro-biotics and gut microbiome.

If you're losing too much weight on a Paleo-type diet, you can add starch/fat. Many children need something like rice to get enough calories. No foods are forbidden. There's just an emphasis on nutrient density.

 

[Karen Fic]

This is super helpful everyone. I want to thank all of you for taking the "energy" out to post.

I am about to embark on the ketogenic diet according to Myhill protocol, but it sounds like I should check this out first. I need to lose weight, lessen symptoms. I don't have severe reactions to foods, never did, but... we shall see.

 

[Remy]

This is super helpful everyone. I want to thank all of you for taking the "energy" out to post.

I am about to embark on the ketogenic diet according to Myhill protocol, but it sounds like I should check this out first. I need to lose weight, lessen symptoms. I don't have severe reactions to foods, never did, but... we shall see.

Keep us posted!

 

[rebar]

I bought the book, My takeaway is to pay attention to the carbs you eat, noting type and amount. A few hours later 2, I assume jot down symptoms. A meter may help but may not be needed.
Last night I had a pasta and chickpea meal, I awoke at 1AM and not in a good place, I felt "crashy". My sleep is poor to begin with, usually about 5 hours, so I plan to pay attention most especially to my evening meal and it's possible effect on my quality of sleep.

BTW, I believe I'm experiencing positive results from following Ken Lassesen's suggestions.

 

[TJ_Fitz]

Does the author make recommendations for any other kinds of measurements besides blood glucose? Also, does he account for the varying glucose density in different carbohydrate foods? For example, 50g of potato is nearly 50g of glucose once the starch is broken down, but 50g of table sugar (sucrose) is only about half glucose and half fructose (which is more likely to show up as higher triglycerides).