Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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What diet has worked best for you?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Avengers26, Jul 10, 2014.

  1. Avengers26

    Avengers26 Senior Member

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    I have recently started a diet which is rich in saturated fat. It' been only 2 days & so far, i like it. Before that, I was on a roughly 40% carbs, 30% protein, 30% fat (mostly unsaturated fat). I have more energy & feel more focused last 2 days. I also slept much better last night. I am keeping my fingers crossed.

    What diet changes have helped you the most? It could be the diet composition, addition / elimination of any individual foods etc. etc. Please share. Thanks, John.
     
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  2. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    For me just being able to eat 2-3 meals a day has been a great help to me after living in dire poverty for years.

    Just being able to eat food again has been amazing instead of having to go for days without or severe rationing.

    I have a rich diet of protein, carbs, fats and my liquid vitamin supplements that i couldn't always buy before and i'm loving it :)

    So the non starvation diet is working great for me :) if i end up having any adverse reactions to the many foods i'm now able to afford. I'll deal with it later, but for now i'm enjoying it too much :)

    The foods that i have to avoid like the plague are garlic, sugar sweeteners and all spices. The neighbours cooking garlic is often the only thing that can get me out of the building when everything else has failed :) it smells like burning rubber to me.
     
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  3. xchocoholic

    xchocoholic Senior Member

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    The elimination diet. I'm intolerant of gluten, dairy, soy, corn, most chemicals, etc. I started this diet in 2005 and my intolerances are the same, just not as intense, despite going 99% paleo for 5 years and taking enzymes and multiple years of probiotics.

    I'm a celiac with multiple auto immune diseases tho so I suspect that's why my reactions are the same.

    Just to make life easier, I added more gf processed foods into my diet around Jan 2014. So far so good. Kow. A few rashes, mild ataxia, insomnia and fatigue. Trying to use these sparingly.

    Tc ... x
     
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  4. ahmo

    ahmo Senior Member

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    I've been on GAPS diet 2.5 years. Going gluten/casein free made a world of difference. But I'm also histamine and high thiol/sulfur free. So it's become very minimal. And I've had to reduce my green vegetables because the veg folinic competed w/ the folate that I need. I eat AM/PM, giving a long break of pseudo-fasting in between.

    Bone broth, fat, tiny amount of meat. Lettuce/carrot juice, approx 1 cup, w/ the carrots in PM soup. ghee, honey. I've recently had to remove the tiny amounts of buckwheat and beans that my gut tolerated, but my immune system did not.:(

    @xchocoholic It's good for me to hear that a restricted diet for so long hasn't made things worse for you, that your intolerances are less intense. I've been concerned that I might make matters worse on my extended minimal diet.
     
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  5. xchocoholic

    xchocoholic Senior Member

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    Hi @ahmo

    Good to hear gfcf helped you. If you have leaky gut you may want to look at oxalates too. These can contribute to kidney stones and pelvic pain. Many of us on the low oxalate diet just avoid the high oxalate foods.

    I didn't learn about histamines in foods until a couple of years ago and wasn't willing to add those limitations to my list. I'm taking children's dye free benadryl at night to treat this. Occasionally I need it during the day for swelling in my lips. It's vinegar / mold reaction that I'm chosing to live with. I want to look at other natural mast cell treatments tho.

    I'm not sure why my reactions have lessened. I added 2 supplements about 6 months ago that may have helped. Enzymatic DGL and Enzymedica Digest Spectrum. Both have helped my digestion tho. Of course it may not be related. Time alone can heal.

    Tc ... x
     
  6. ahmo

    ahmo Senior Member

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    @xchocoholic Thx for that. I'm pretty much low ox, tho my carrot/s seem to be fine. Funny thing, when I was in a certain phase of detox my body insisted on really hi ox (self-testing). I could only infer that it was binding w/ something to help move it out. Now wants only 1 carrot/day.

    I'm impressed that your reactions are mild enuf to continue w/ those foods. Royal jelly is good for mast cell. I'm having fabulous results w/ rutin and mangosteen for histamines. Rutin tends to act almost immediately:)
     
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  7. Timaca

    Timaca Senior Member

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    Low histamine has helped me. Also I am grain free (at the moment), egg free, nut free, seed free. Just trying to add foods back in. My story can be found on my blog here.

    Best,
     
  8. ukxmrv

    ukxmrv Senior Member

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    When I first got ME I was eating more veges and whole-grains than I had previously. Since then (30 years ago) I have experimented a lot with diet.

    Started with a no-dairy, no gluten and have worked my way through vegetarian, macrobiotic, vegan, raw, juiced and many other things. Largely because I have had flatmates over the years who have followed a particular diet and have cooked for me. At one time I went on an exclusion diet and then added foods in over time. My experience has been that diet doesn't have much of a positive effect on my (mainly viral) ME symptoms.

    It's more a case of eating the things that don't upset my stomach and avoiding the ones that do. I've had this disease for a long time and there have been years of severe stomach upsets due to food poisoning, parasites or other reasons.

    When ME first struck (acute viral onset) I was fine in my digestion for a while and then the antibiotics I was on for repeated infections took their toll on my stomach, then the mistake of taking anti-depressants made everything much worse.

    During the first year of the disease I developed an anaphylaxic reaction to shellfish and on skin/blood tests showed allergies to many foods. Cutting them out of my diet though didn't cure the ME.

    Now I live on a diet of simple salad things, some pulses, white bread/rice/pasta, meat, some eggs, some fish, a little dairy (like yoghurt) some fruits (like berries) and veges I can tolerate.

    I avoid sulphurous veges, fermented products, mushrooms, wholegrains, nuts, apples and lots of other things that affect my stomach badly.
     
  9. lizw118

    lizw118 Senior Member

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    I have found that low carb works the best for me. However, I was unable to stay away from sugar until I started taking a small amount of resistance starch daily. The potato starch makes me crave sugar less. I used to crave it constantly, which I attributed to a candida issue. I now think it must have been a blood sugar thing. For me, sugar in almost every form makes everything worse. I eat berries and some other fruits and occasionally dairy, but I am trying to shift to a paleo diet, which makes me feel best.
     
  10. Mr. Cat

    Mr. Cat Senior Member

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    Grains rarely, no gluten. Fish 1-2 times a week. Eggs frequently, red meat never, chicken rarely, and I supplement with whey protein powder daily. Veggies daily, low sugar, no soy, no alcohol, no dairy, nightshades rarely (though they are the most benign out of all the things I avoid). Basically pretty paleo, but I also follow an alkaline diet (avoid acidic foods - which is pretty much everything that tastes good - and lots of cooked mung beans - they are super alkaline).

    The consensus seems to be that a paleo-ish, diet works best for many CFS/ME people, but since everyone is different, I think most folks have to go through an additional period of trial and error to see what else to add or subtract.

    I had gut problems for about 10 years. A lot of it got cleared up with diet, but I also had help with balancing my digestion from Chinese herbs as prescribed by an acupuncturist. I think it is a common belief that with CFS/ME, the gut has to be addressed/healed before other systems are. In general, my gut is pretty healthy as long as I stick to the above diet.
     
  11. SOC

    SOC Senior Member

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    Isn't whey protein powder dairy? It gives me a lot of trouble with my dairy sensitivity.
     
  12. Mr. Cat

    Mr. Cat Senior Member

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    You are right, SOC, whey does come from dairy. However, online claims for whey protein say that whey protein concentrate has very low levels of lactose, while whey protein isolate (a little more expensive) has almost none. It seems to be lactose that makes most dairy-intolerant people intolerant of dairy.

    For me, though I don't handle traditional dairy well, whey protein (both concentrate and isolate) has never been a problem for me, and I take whey protein over other protein powders because it is more affordable. However, I'm sure that there are some folks who would not tolerate whey protein as well as I do, and would be better off with other plant proteins (hemp, rice, etc., probably not soy) if they are not eating meat or eggs. However, I've noticed these other plant proteins usually are both more expensive, and also have less actual protein, per unit of weight.
     
  13. SOC

    SOC Senior Member

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    That explains it. :) Yes, many people are lactose intolerant and can tolerate some milk products. Unfortunately, other people cannot tolerate casein (and possibly other milk proteins) which makes them unable to tolerate any milk products. I used to eat lactose-free until I realized that I need to be dairy-free to avoid symptoms.:(
     
  14. Adlyfrost

    Adlyfrost Senior Member

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    I have been grains-free since 2000, before Paleo. Mostly liquid diet including tons of chicken broth. I too do better on saturated fat- lots of goat milk, esp. in cold weather. Can't eat a lot of meat - unfortunately even healthy fish too much to digest. If I do break down and eat a lot of solid food Bromelain helps. Used to eat a whole pineapple a day but way too much sugar so using bromelain pill has been a life-saver.
     
  15. Timaca

    Timaca Senior Member

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    A few days ago I tried adding corn in....I took one (as in 1) bite of corn on the cob for dinner. By 3 a.m. I had a headache that lasted throughout that day and into the morning of the next. Amazing!! No corn for me (which is sad because I also can't eat rice, wheat, oats or buckwheat).
     

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