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Diet Does Make a Big Difference

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Carrigon, Mar 22, 2010.

  1. Carrigon

    Carrigon Senior Member

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    At least for some people. My friend Kathy, who has had CFIDS/ME so severe that she has often presented as HIV Negative AIDS, she's better after two years of a fairly clean, bland diet. Her mother and her husband cook her food and they don't use any processed or prepackaged food. They cut out all MSG, Aspartame, Yeast, Dairy, and Sugar. What they do is feed her pure steamed or stir fried fresh veggies with meat and only use some salt, pepper, and a few other things, but every meal is fresh and pure with no weird additives. And pure fresh fruits.

    Two years ago, she was in and out of the ER all the time. Today, she's much better. She still has CFIDS/ME, but she thinks clearer, she's nowhere near as dead as she was. Her POTS symptoms are milder. She's just better in alot of ways. Right now, the only thing they were never able to make better was the Acid/Reflux GERD. She still gets it, but she's taking something called Mastica, it's a supplement that she says is helping it.

    I have seen her when she's been so bad she couldn't even turn over, so I'm surprised at the turn around. She's had this disease since she was about eighteen. She's thirty two now.

    The diet, for her, made a huge difference. She also takes vitamins, keeps the vitamin D high. But it's the diet that helped her. She's actually better than me right now. I don't know if I'd ever have the willpower to stick with that strict diet, plus, half the time I'm too sick to cook and have to eat whatever's around.
     
  2. knackers323

    knackers323 Senior Member

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    hi, how long was she on the diet before she began to notice a difference? thanks
     
  3. JPV

    JPV Senior Member

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    I'm a firm believer in diet, digestive aids and probiotics for laying the groundwork for healing. Then supplements, because I believe without proper digestion supplements aren't as effective. Then detox of heavy metals and other toxins.

    My girlfriend recently bought a crock pot and we use it once or twice a week. It's easy to use, just throw in some meat, veggies and spices and let it sit all day. I think that the meat is tenderized in such a way that makes it much easier to digest. Highly recommended.
     
  4. Carrigon

    Carrigon Senior Member

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    It took awhile. I don't think there was a noticable different for six months or so, but she had it that severe. She was going to the ER several times a month. So then the ER trips stopped, but she still wasn't okay, but alittle better.

    When you look at her now, two years later, the difference is amazing. She can go out to eat if someone drives her. She still can't drive. She isn't as brain dead, she sounds more alive. There's just a huge difference. I was shocked at the difference. She's not fine, but so much better from how she was. It's definitely the diet.

    I have a cousin who has Crohn's disease and she always swears by this same type of diet. She steams everything and juices everything else.

    Personally, it's just hard for me to follow all that. I'm usually just too sick. I grab whatever and usually my limit is making plain rice and making enough to have it for a few meals, or I'll do a baby food diet and eat mostly that pure stuff for my stomach. I don't have two people to cook my meals for me and clean up like my friend does. I just wish they sold pure cooked meals like that without all the junk in them and they don't. Everything has MSG and all kinds of stuff in it today unless you cook your own pure foods.
     
  5. dancer

    dancer Senior Member

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    It's a vicious circle, isn't it? We often ARE too sick to do the extra work of a careful, non-processed, healthy diet. Plus it takes creativity to figure out how to fix meals without gluten, sugar, dairy, etc. But I agree that is can really help. After testing with an immunologist, I went on a very limited anti-allergy rotation diet. That, plus probiotics, made a huge difference in IBS and perhaps some other symptoms.

    However, after six months of scrupulous careful food prep (which exhausted me, using up the few minutes a day I could be on my feet) there wasn't a change in the CFS/ME fatigue, PEM, activity level, etc. Bummer. I'm continuing now with a mostly gluten-free/sugar-free/dairy-free because I still hope that the extra support to my digestive system may eventually help the rest of my messed up systems improve. So I do agree it's worth the effort.
     
  6. willow

    willow Senior Member

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    Carrigon, I remember how you're struggling finding suitable, minimal effort meals. When you say you do the baby diet, do you eat prepared baby meals? In the UK there's a resonable selection of organic, additive free baby food, some of it pureed. Not sure what it's like where you live.

    Downside is the cost.

    Wholesome, 'clean', dairy free, gluten free and quite a lot else free makes a huge difference to me. From the sypmtoms slight dietry deviations give me, I'm guessing 2 weeks of average eating and I reckon I'd be spending most of my time in bed. On the diet I sleep around 8 hrs and awake refreshed. It doesn't continue to improve my health, there's a plateau, but it's miles better than the alternative.
     
  7. Jody

    Jody Senior Member

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    Diet is really important for me as well.

    If I'm not eating enough protein, within 2 days I can feel my IQ drop.:eek: I get a big increase in swirling, buzzing, numb, tingling sensations in my arms and hands and legs. My OI comes back strong and I can't think straight. I have no energy and feel quite weak and shaky.

    If I eat too much in the way of carbs for a day or so, I begin to have stomach pain, acid reflux and IBS symptoms. I have the odd sensation of being both too full and bloated from eating this way ... and am also famished. Sometimes I'll feel hungrier after this type of eating than I was before I ate.

    I agree that for some of us, diet is a huge factor.
     
  8. tamrakat

    tamrakat tamrakat

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    Diet was the first thing I noticed that could ease my symptoms to a degree. My pain and exhaustion decreased when I gave up corn, wheat, milk, sugar and other foods I had intolerance to. Before that I was REALLY sick! I'm trying the specific carbohydrate diet (SCD) right now, hoping it helps.
     
  9. JPV

    JPV Senior Member

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    The diet sounds good, but I wonder if sulur containing foods like legumes and some vegetables may also pose a problem for some people with CFS.
     
  10. glenp

    glenp "and this too shall pass"

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    Helps me

    Restricted diet helps me. After I eat some foods i can feel the tingling in my head start and then that horrid head pressure, its now much better when i know what to avoid. I find the hardest part is to not eat the same food more then once in 4 days. I am going to look into baby food in the glass jars. I think that the lining of canned tomatoes brings on some headaches. Someone mentioned that tomatoes are more acidic so that the BPA leeches out even more so. I have been feeling well enough lately to cook a little, it really helps. I am still working on finding easy foods.

    glen
     
  11. mermaid

    mermaid Senior Member

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    I have had gut problems for 40 years in some shape or form - starting with IBS bloating and deteriorating into gastritis about 7 years ago. Then 2 years ago it got a lot worse with stomach pain followed by migraine. I had tried exclusion diets with good effect but I would always lapse and the problems returned. This time the bad effects were so bad that it was like the Pavlov's dog experiment - I would do anything to stop it happening. When I get a bad stomach spell now I find I feel so depressed I want to crawl into a dark hole apart from the physical symptoms.

    By then I had been diagnosed with ME/CFS as well so I had Dr Myhill's blood tests for mito function. She sends lots of other useful info too including the Stone Age Diet info so I started this (not complicated really) and stomach instantly improved again. I admit to the occasional lapse but I have been on it for about 6 months in slightly modified form and gut problems hugely improved. It's just an old fashioned diet really without all the gunk! I have reintroduced some sugar, but I try to keep my diet quite plain but add warming spices like cumin, coriander and ginger and they help to keep it interesting. I have cut out wheat as the main thing (although I do have some Spelt as I am not coeliac as such) and most dairy, but I do have live yogurt.

    Luckily my husband cooks about half our food, but when I cook I keep it very simple and mostly my ME/CFs is not so severe that I can't cook luckily.

    The change in diet has helped me feel better but sadly does not seem to have affected an increase in energy at all so far though.
     
  12. Athene

    Athene ihateticks.me

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    I just want to say this to everyone following a restricted diet, which is what I have been doing for 25 years:

    BUY SOME GOOD BOOKS ABOUT NUTRITION AND TAKE LOTS OF SUPPLEMENTS.

    I developed clinical malnutrition even though I was eating healthy food and takin vitamins and minerals. It shows up after 6 years and by that time you get into lots of vicious cycles, whereby you cannot absorb supplements of nutrient A because you are already too deficient in nutrient B for your body to produce the transport factor that absorbs nutrient A. And supplementing nutrient B is problematic because you need nutrient C to absorb it and you need enough nutrient A to absorb the nutrient C etc. They are all interlinked and when one goes down the whole network collapses.

    I am not saying don't restrict your diet - you have to, it is essential for getting better in the long term with CFS. I am just saying, don't start to think about nutrients when you begin developing deficiency symptoms, because it will be too late, and don't think a generic multivitamin and mineral supplement will be enough for you, because it won't. You need to become your own nutritionist.
     
  13. willow

    willow Senior Member

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    Yeah legumes, nuts and seeds are some of the worst foods for me. Sproted, rinsed, whatever it makes no odds. Dairy is the other corker. I do ok with sulphur veg, as long as I don't really, really overdo it.

    Also wanted to add that I've treated gut bugs in the past, with a huge range of herbals and it didn't help. But I've had an impressive reduction in food intolerance since I treated hookworm. Talking from a low starting point here, and my diet is still fresh, clean and restricted, but less restricted.
     
  14. Carrigon

    Carrigon Senior Member

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    For me, a baby food diet is lots of the fruits and veggies in the jars and then I'll have plain white rice as my main meal. I'll also eat the rice cereals. I don't really go in much for the meals, I've noticed they put sugar and stuff in some of those. You really have to watch it.

    I'm allergic to a million things. I have a corn allergy, I've got some kind of egg allergy, I can't have alot of whole wheat products. The list just goes on. I had something with mayo yesterday and today I'm in massive pain all over. Watching the diet is hard.
     
  15. willow

    willow Senior Member

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    Sounds like you don't have the sort of baby food we can buy here. You can buy it with nasty things in but there's a few companies that make wholesome, 'clean' baby food.

    I can't eat processed food either. And 99.9% of the time I won't buy anything in metal, plastised or polythene packaging. Most veggies are ok and most fruit too. Otherwise it's rice, 2-3 eggs per week, beef 2x a week and fish... but recently my body is unhappy fish...

    Some of my other intolerances are greatly improved but not enough that I feel I can make them a regular part of my diet.... With me it needs to be more about what results in me feeling positively good rather than avoiding things that make me feel unwell. Some things change too. I need to keep aware of those changes. It's harder work than supplements but me meore benficial.

    Just like fresh air which i'm about to get anotehr dose of.
     
  16. Carrigon

    Carrigon Senior Member

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    What's been bugging me lately is the food in cans smells like metal and I swear it tastes like it. The food in plastic containers, OMG, if you microwave it, you smell the plastic and the food smells of it and I can't eat it. I don't understand why people don't complain about it. It doesn't smell or taste like food or it smells and tastes contaminated from the packaging. And yet, people still buy it all the time.
     
  17. jace

    jace Off the fence

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    I so agree with you, Carrigon. Always transfer food into china bowls or plates before microwaving, and use a plate to cover it, not cling film (saran wrap). I have only succumbed to ready meals a couple or so times, each time I regret it and swear never to do it again.
     
  18. xchocoholic

    xchocoholic Senior Member

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    Watching what I eat helps me too. I try to just keep wholesome organic meats, fruits and veggies in the house so I'm not grabbing for something junky when I'm starving. A 1/2 of an apple or banana with Sunbutter will usually hold me over if I'm exhausted but still need to cook something. I've been eating a lot of fish, veggies, curry and coconut milk lately. I usually cook up some meat in the oven and freeze it ... it freezes really well. Then I just have to wash and cut the veggies ...

    I wanted to respond to the comment someone made about some foods tasting funny to them. I'm sure that's just those of us with MCS ... I can taste the aluminum from canned foods or aluminum foil. And I swear non organic cantaloupes tasted like nail polish remover to me. bleh !!

    I really hate to cook so I wish there was some way around this ... We could sure use some help in this area.
     
  19. JPV

    JPV Senior Member

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    I've also been experimenting with various digestive enzymes and acids. It's a complex issue that I don't think I've fully grasped it yet. I probably need to break down and do some tests to pin down specific issues. I thinks that most, if not all, people with CFS have absorption problems with their gut.
     
  20. Ems

    Ems Guest

    Changing my diet has made a huge difference. I cut out dairy, tomatoes, sugar and fatty foods after having intolerance tests. Within days my stomach was a lot better. I make healthy meals once a week. If any family members are around I get them chopping up vegetables. Then I make a big pot of soup and a casserole. Both of these are really easy to make if you have a helper to prepare the vegetables. I then freeze the soup and casserole in individual portions. These can then be heated up in the week for home made convenience foods without any rubbish in them.

    Another thing I have found really helpful is a steamer that has several compartments. There is space for rice/potatoes and two vegetables or fish etc. It times the food to ensure it is all ready at the same time. I have taught the rest of the family how to use it. So when I am feeling bad there is always healthy food.

    Fish oils and probiotics have also been helpful. Following this diet I have been able to come off all my IBS meds and only ocasionally need the gastric reflux meds. So for me it's worth the restricted diet. It's a lot better than the constant pain I was in before.
     

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