Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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I do not know what to eat

Discussion in 'General ME/CFS Discussion' started by eric_gladiator, Jul 21, 2017.

  1. eric_gladiator

    eric_gladiator Senior Member

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    I have been eating more than 1 month as healthy as possible, without gluten, little sugar, little salt .. lots of vegetables, meats, fish, nuts ... to me this way of life I do not like or feel better, on the contrary I'm noticing that I'm losing weight despite not doing anything. Maybe if I use something for the inflammation but I'm not really sure since I think the inflammation comes from the spicy, sauces but not from normal eating. Let alone eat a pizza, cake, cookies, bread, chocolate .. since I'm going through with this at least I would like to enjoy something. My functional doctor told me that I needed that diet to improve, but sometimes I just doubt it, maybe even harming myself
     
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  2. Daffodil

    Daffodil Senior Member

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    @eric_gladiator my doctor gives his patients a food allergy test from US Biotek so you can determine which foods cause more inflammation for you. Many foods can cause inflammation despite not being spicy.

    Minimizing gut inflammation is important for us but I, too, have found that diet gives minimal if any noticible improvements.

    I was happy for the weightloss myself.

    xo
     
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  3. eric_gladiator

    eric_gladiator Senior Member

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    Are these tests effective or give false positives?
     
  4. Carl

    Carl

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    Changing/altering the foods always produced the greatest effects on me. I noticed this one night immediately before things nose dived. Drinking an alcoholic drink produced itching of my skin which it never did before.

    After that things really nose dived, I reacted to everything. Through the itching I noticed that not changing foods caused no itching, no energy problems either. Changing/adding foods caused almost immediate skin itching and subsequent exhaustion and the need to sleep.

    Maybe eating a "healthy" diet ie changing foods regularly is not helping you as much as you think it should. That is the problem with Increased Digestive Permeability and resulting immune system control problems.
     
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  5. pamojja

    pamojja Senior Member

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    Maybe you changed too fast, and expect feeling things not possible?

    In my case I gradually changed my diet when I got a diagnosis (PAD) where conventional medicine didn't had much to offer. Instead the diagnosing Internist was even of the mistaken opinion, that how much greens I would add to their pharmaceutical and surgical treatments, my 5-year mortality would still remain at 30% only.

    I informed myself from other quarters, didn't let them do their invasive and risky intervention, and moreover didn't expect to 'feel' better, but not to die early. In the first year just eliminated sugar and reduced prepackaged stuff (like cookies). Over years increasingly reduced grains, milk; as a life-long vegan added in eggs and fish very gradually again. While monitoring metabolism by doing all the regular lab-works to see how changes are affecting it (again, not by how I felt). Thereby found for example, had to increase salt intake even substantially.

    Long story short, it took 6 years till the 60% walking disability of my 'irreversible' diagnosis got revoked by a government agency again. However, I'm not only still alive, but even reverted the diagnosis my internist thought impossible to. And though I don't feel much better (except the euphoria in my taste-buds I do get from immaculate meals, very short lived though...), I do feel still alive. :)

    So maybe better cut down on unreasonable expectations - quiting livelong addictive eating behavior is bound to cause some turmoil, and 1 month can't change a metabolism deranged by years of the opposite. Moreover go slowly, do only changes with which you're comfortable with. Don't monitor your withdrawal-feelings, but lab-markers of health instead.
     
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  6. Daffodil

    Daffodil Senior Member

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    @eric_gladiator my doctor uses the best tests available so I would think they are accurate.

    much earlier on in my illness, I tried elimination diets but only felt sicker. now, I am off gluten but don't feel much different aside from weight I think. the tests showed other foods I should not be eating such as tomatoes, almonds, cranberries, chocolate, whey protein, etc. I try to not eat those but I cheat quite often, especially with milk in my tea.

    I asked my doc about this and he said I should just try to do the diet the best I can. I got the feeling the difference it makes might not be huge...but still its a good thing to do since we have so much inflammation.
     
    Last edited: Jul 21, 2017
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  7. Basilico

    Basilico Florida

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    My husband and I have tried pretty much every dietary intervention and nothing diet-related has every made us feel better. We both ate pretty well before getting sick. I have a feeling that the people who improve with diet changes are the ones who were eating a pretty bad diet to begin with. If your diet was pretty bad, eating healthier is not a bad idea, though it probably won't cure anything.

    If your diet was pretty good overall with an occasional treat, then it's probably a waste of time. Still, my philosophy is to try everything so that I don't have any lingering doubts in the back of my mind that something simple (like a diet change) could have made an improvement.
     
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  8. belize44

    belize44 Senior Member

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    I hear you on the that diet change! I have been started on a diet that eliminates dairy, sugar, grains, and such. On my own, I started on a modified Keto diet. I have lost weight, but as for feeling better I just don't. I wake up light headed and dizzy and most days I feel weak for the bulk of the hours that I am up, and perhaps for about three hours in the late afternoon to evening I will feel a bit better. I think I would benefit from allergy testing to see if specific foods need to definitely be ruled out, but I am taking a break from doctors for now since interactions with them have been discouraging.

    So diet changes for us may take a bit longer before we feel better. I know that for myself I am always impatient to see an improvement, but I realize that it may not happen as fast as I would like. For now I will continue with my modified diet and see what happens!

    I hope that you see real improvement soon, eric gladiator!
     
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  9. ahimsa

    ahimsa Moved to www.s4me.info

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    Hi @eric_gladiator

    Early on in my illness I tried a lot of diet changes. I went on a diet that was not only healthy (lots of veggies/fruits, which I had always eaten even before my illness) but also sugar-free, gluten-free and caffeine free. Stayed on that diet for 8 months. Absolutely no change.

    The only diet changes that have ever helped me were those related to my dysautonomia issues - NMH and POTS. I take lots of extra salt (some POTS recommendations are for 10 grams sodium a day), extra potassium (time-released prescription pill), and drink 3 liters of water daily. And I'm careful to rest when I have a full stomach (blood goes to the stomach, it's called splanchnic pooling). So, not really the usual "diet" changes that people think of as helpful.

    But your mileage may vary. I have heard of some people who had improvements from diet -- usually those with celiac disease, or some kind of allergic reaction, or mast cell issues, things like that.

    Best of luck to you!
     
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  10. Daffodil

    Daffodil Senior Member

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    @Basilico I agree. I ate pretty healthily before I became sick as well.

    I once asked my specialist how it can be that I am still alive (I was REALLY sick for a very long time and a lab director told me I had one of the highest inflammatory marker panels he had ever seen). The doctor said it was probably because I lived such a healthy lifestyle.

    xo
     
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  11. pamojja

    pamojja Senior Member

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    Normal eating usually comes with industrially prepared and prepackaged food, with it's loads of pro-inflammatory omega-6 oils, various sugars and synthetic additions. Just think how many years it will take to get that pro-inflammatory disadvantageous omega-6 to omega-3 ratio within fatty body tissues into a better balance?

    Even by cheating, by taking high dose omega3 oils, it took me many years confirmed by various inflammation markers.
     
  12. perchance dreamer

    perchance dreamer Senior Member

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    @eric_gladiator, why were you told to go low salt? If you don't eat much processed food, you aren't necessarily getting too much salt. Some people are salt sensitive, but for many of us, salt is beneficial for the adrenals. Also, it's one of the greatest flavor enhancers.

    I use salt to help with my low blood pressure. I add salt to every glass of water I drink, and while it is still low, it's much better than before. A cardiologist told me to do this.

    Anyway, if you don't just have to go low salt, I wouldn't.
     
  13. Daffodil

    Daffodil Senior Member

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  14. Alvin2

    Alvin2 If humans were rational...

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    No surprise here, eating healthy is good for a long life (for the healthy) but seems to have little effect on this condition unless its related to something in your diet, in my case and probably yours it seems not.
    This condition is likely not caused by a bad diet (or else 50%+ of the population would have ME/CFS) and won't be helped by a good diet. Now if you have food allergies thats a whole different ball game, ME/CFS does not have that as a symptom or cause.

    Most people would be worshiping you right now, losing weight by only food changes. ;)

    If your losing weight because you have something causing it and its coincidence it happened while you were on the diet then you should address it. Otherwise a reasonably healthy diet is probably fine, vegetables are good for you, meat is good for you, some gluten won't hurt if you've noticed no benefit from removing it, some nuts are good too.
    What are you not eating that you used to?
     
  15. lnester7

    lnester7 Seven

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    Are you allowed roots and starchy veggies?i had the same issue and by adding them feel much better:
    Yuca, sweet potato, plantains, ripe plantains, green bananas, taro root....
     
  16. perchance dreamer

    perchance dreamer Senior Member

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    Also, avocados are very satisfying.
     

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