The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Restricted diets

Discussion in 'General Treatment' started by anniekim, Jun 21, 2011.

  1. anniekim

    anniekim Senior Member

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    I'm always reading of people with me/Cfs following restricted diets with the view to healing leaky guts, poor digestion and so on. I know that a large part of our immune system is in the gut so I know it makes sense that to be healthy we need a healthy gut.

    However, I really can't face following a restricted diet and am amazed at how some people show so much discipline at following very restricted diets for months, if not years. And, rightly or wrongly, I'm sceptical of all these gut tests and so on.., yet I knowi might be wrong

    I know I don't tolerate wheat and dairy very well (seem fine with goats milk, thankfully) and so on the whole don't eat much of them, but do occasionally as sometimes just want a bit of bread etc and to hell with it

    I also have a sweet tooth and try and manage it by having a small sugar treat daily. I've tried to completely cut it out in the past and it was so miserable.

    I get so down because I think those who improve seem to have the discipline to follow strict diets and my lack of willpower means I'll never improve

    Any thoughts anyone? Anyone followed a very restricted diet, taken all the supplements to heal an alleged leaky gut and not had improvement?

    Thanks in advance
     
  2. *GG*

    *GG* Senior Member

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    I have had suggested to me some diet things. I think I have/had IBS, but I think LDN has helped that, not postive, but rather certain. The reason I say this is because I had a major flare up about 2 years ago now, and about 2 months ago, I realized that my digestion has gotten much better. I also started taking high doses of Vitamin D and get much better sleep now, not as fatigued upon waking. Just my 2 cents.

    I was starting to try to take a probiotic but fell of the habit.

    GG

    PS Please vote if you can!
     
  3. Valentijn

    Valentijn Activity Level: 3

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    Hi, I have a similar problem with sugar. The problem is that the problem for me isn't just "sugar" ... it's carbs in general, especially high-glycemic ones that provide a similar sugar rush. By staying low carb and low-GI, I have no temptation to eat bread, cookies etc. The craving is simply gone after the first few days ... I was even offered oreos and cheesecake at a recent birthday party, and had nuts and strawberries instead without feeling deprived at all :p I just thought to myself "wow, these are some of my favorite foods, and I don't even care about them now. Awesome!"

    Getting truely free from blood-sugar swings is very liberating for me. I have control over what I eat! For me it's pretty essential for losing weight, since I don't get anything worse than normal hunger when it's time for a meal now. The problem with having a daily sugary treat is that it will make your blood sugar fluctuate if you're sensitive to that (and it sounds like you are). Then a few hours after the treat, you'll be craving carbs again ... maybe you won't eat sugar, but you might have bread or rice or corn or potatoes to make it go away ... and a few hours later you'll want carbs again, and so on. Eventually you're back at the sugary treat the next day, and the cycle continues :p

    I keep my carbs around 20 per day, though some people can handle higher. I eat frequently (every hour or two) and in small amounts (50-100 calories, a bit more at dinner). I never eat bread or sweets. I do eat dairy, but very little, and never high-sugar (high-lactose) dairy. I use Stevia as a sweetener, which is very nice in cream with a bit of vanilla and a few strawberries for dessert. Lots of meat and veggies, some nuts, no fruits for me except some berries.

    The first few days are rough, but it's easier if you eat frequently - don't even think about trying to count calories then! Keep something around to nibble on that has a small bit of carbs and a good bit of fat, like peanuts or unsweetened peanut butter, for when you do get cravings. And it's easier to start going low-carb first thing in the morning. Your body naturally goes into fat-burning mode somewhat overnight anyhow while it's not getting food, and you won't have had any recent food that causes bloodsugar fluctuations. After a couple days of unpleasantness, things should get stable as your body gets used to mostly using fat and protein. Then it's a lot simpler to avoid the foods you crave without even missing them. I laugh in the face of ice cream and stroopwafels!
     
  4. taniaaust1

    taniaaust1

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    Ive been on a highly restricted diet for several months.. my issue is hyperinsulinemia so I have a big issue with carbs and them giving me symptoms. So my carbs are extremely limited.

    Before my current diet, I used to have some food sensitivies I'd noticed over time so previously had had a few things restricted eg peanuts, dairy .. fortunately I dont have those sensitivities now only the issues with too much carbs (im still sensitive to artificial sweeteners thou and some colourings)

    In my case its been VERY HARD to keep myself on the diet as I really love to eat carbs so I do break it at times, but I really can pay a high price when I break it, so that helps keep me on track. If I didnt have to deal with symptoms when I break it, I wouldnt be staying on the diet well at all due to my carb cravings. Unlike the previous poster, it hasnt got a lot easier esp when I suddenly found myself confronted with something like a KFC (there is NOTHING now in those places I can eat, even their coldslaw is very high in carbs). Ive got to look for a shop that sells something like a Yiros which I'll just get the meat and not the wrap thing and greek salad when I find myself away from home and hungry.

    One thing thou which makes a huge difference to sticking to a restricted diet, is finding suitable things to substitute what you usually have or finding other foods you like. Eg I'd be lost without Xylitol (which is a sugar replacement but is natural and good for you including ones teeth :) ). It does look and taste like sugar too).

    I brought new cook books (in my case stir fry ones in which all natural ingrediants are used as many stir fries are low carb) to help me learn to cook new things so found some real yummy substitutes to my previous diet.

    I still have my chocolate too, a brand which was no sugar and hasnt got the artifical sweeteners I react to).

    Many of the diabetic ones actually had higher amount of carb then I was after so it took a lot of hunting about. (the one i have tastes just like my old fav. cabarury chocolate :) ... Hazelnut milk chocolate yum from the sugarless confectionary company, I can eat the whole block of that one without getting ill effects http://www.sugarlessco.com/res/Catalogue.pdf
    Their licorice is nice but extremely soft, im looking for a non sugarless licorice which is harder cause i dislike all the sticking to the teeth. Idont recommend their jelly lolly in middle of other two as that one is smoothered in an artifical sweetener in a quantity which i react too . Miss your mintees, i do really like their nitro mint is just like mintees in looks and taste and texture (warning the mintees can give me a slight headache so obviously they do have artifical sweetener in those) .. and i like their french vanilla lollies to :) (so far ive been fine with one or two of those).

    Dont try going on a restricted diet you are unhappy with.. research and plan ahead so you can be on one and not feel deprived.
     
  5. ukxmrv

    ukxmrv Senior Member

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    Yes, I have. No improvement and lots of time/energy/money lost.

    Tried the diets for years and the discipline to remain on the diet came from my desperation to get better. I also tried the leaky gut type supplements in the early days. That made my stomach worse.

    Diets are a huge topic. There are diets we try because we are allergic to specific things, diets we try to lose or gain weight and diets we try to cure the ME or specific symptoms (like a leaky gut or anticandida). I've done all of them.

    Diets would be the area I have spent the most time on and had the least good returns.

    When I was first sick with ME, I had allergy testing in a conventional hospital. Both skin pricks and blood testing. This showed a very wide range of allergies to common foods. Tried exclusion diets and had desensitisation treatment for the allergies. This did get better over time but new allergies / intolerances kept appearing (i.e. after food poisoning).

    What I did learn from all the different diets I tried was that they would not fix my ME symptoms or make me better to any useful extent, so what I did was incorporate all the small things that I learned to make my own tailor made diet that gives me the optimum functioning.

    For example, I do best on a high protein, low carb diet with no whole grains, little diary products, little sulfurous veges etc.
     
  6. anniekim

    anniekim Senior Member

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    Thanks everyone for your replies, they were appreciated and helpful.

    Valentijn, when you say you keep your carbs to 20, I take it you mean 20g? I did actually start a very low carb diet in January and i agree it definitely helped with sugar cravings. However, my M.E was just getting worse and worse on it and after three weeks I had to stop. Initially I thought it was just the symptoms of ketosis, my body adjusting to the switch from glucose metabolism to fat metabolism; however, the symptoms didn't abate and the pain and malaise were getting worse, so I had no choice but to stop. The other day I read on here someone mentioning that their daughter tried a very low carb diet and got a lot more ill on it. There was some biochemistry discussion on why this may be so, but I confess I didn't understand it. I would have liked to have continued as it helped so much with the sugar cravings (althoughI found it a very expensive way of eating), but alas I couldn't. What classes being sensitive to sugar by the way? I don't feel worse for eating it, just I do like it, a lot!

    I do always try and eat protein with every meal, low gi carbs and so forth, it's just my daily love of a bit of a sugar that I struggle with. Thanks ukxmrv for sharing your experiences of diets and m.e over the years. I'm probably looking for absolution that my failure to cut out the white stuff completely is not the reason i am in poor health

    Taniaaust1, sorry that you have hyperinsulinimea (had to look up what that is), sounds you are managing well despite the challenges. I do use xylitol, but it's the chocolate I love. I looked up the chocolate you mentioned (although being in the UK, would have to source another company) and see it's got malitol in it, which I thought was also not good for the body either? But obviously if you are not reacting to it, it works for you.

    Thanks everyone for sharing their thoughts and experiences.
     
  7. Valentijn

    Valentijn Activity Level: 3

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    I have been feeling worse since I started low-carb, but eating carbs near the beginning of the symptoms didn't help at all, so I've been staying with it. I really do need to lose weight. Light-headedness has been the worse, but seems to be fluctuating independently of anything I do. Same thing with a bit of GI problems. As far as being sensitive to sugar, it just seems that a lot of people can eat it without being effected, but some of us get crazy cravings if we try to go without it for a bit. I do okay if eat carbs steadily throughout the day, but don't lose weight that way ... maybe I would if I could exercise.

    I'm also interested to know how low-carb could affect ME/CFS symptoms. I think I vaguely recall the thread too! Was it just a problem when starting, or an ongoing thing? I've also seen an explanation about how our inability to produce energy from food efficiently can contribute to blood sugar swings and cravings. Glucose backing up in the blood, the getting cleared out and stored as fat, causing low blood sugar and cravings in the process?
     
  8. taniaaust1

    taniaaust1

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    Malitol is a sugar alcohol http://en.wikipedia.org/wiki/Sugar_alcohol (Xylitol is a sugar alcohol too) and is a natural sugar substitute, it isnt an artificial sweetener.
    I have issues with artificial sweeteners eg sucralose (Splenda), aspartame (Equal, Nutrasweet), saccharin I find all bad (mostly give me headaches).

    http://en.wikipedia.org/wiki/Artificial_sweetener has a chart of natural sweeteners and another chart for artifical sweeteners if you scroll down the page you can easily see what is what.

    Id say that anyone who gets any kind of bad reaction to sugar could say they are sensitive to sugar (unless the sugar is feeding something like candida and that is giving them issues). If you have experimented with low carb and sugar and found it doesnt affect you in anyway, I wouldnt think you are sensitive to it
     
  9. anniekim

    anniekim Senior Member

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    Taniaaut1, thank you for the link on articifical sweeteners and natural sweetners.

    Valentijn, I found the bit on the thread discussing a person who found they didn't tolerate low carb diets:

    'this brings me to an interesting observation which dates back several years before the precipitation of the CFS. Back in '03 she and her sister both got interested in the Atkins diet (which started me on it - I've never looked back). However, instead of reacting as most people do, Curly got very distressingly ill and had to come off it sharply after only a few days, the several times she tried it.

    So it seems to me that she's had a block on her gluconeogenesis (GNG) cycle whereby the liver creates glucose from protein in the absence of carbs. I think the body normally prefers the protein path. It is known that insulin inhibits GNG, among other things. I've not read anything to date about this occurring in CFS, however. Has anyone else had this? If so, any fixes?

    Hasta la proxima vez,

    stressman
    Hi, stressman.

    I think you are correct about the disturbed HPA axis producing insufficient cortisol in ME/CFS, and this impacting the glucose control. The main driver for gluconeogenesis by the liver is normally cortisol. Hypoglycemia is very common in ME/CFS, and I think that is the reason.

    It's very tricky to find an appropriate diet in ME/CFS. I think the reason is as follows: Certain organs, tissues and cells have partially blocked mitochondria, primarily because of glutathione depletion from a variety of causes, depending on the particular case. These organs include the skeletal muscles, immune system cells, certain glands, and to some extent the nervous system. Others, especially the vital organs, do not become as depleted in glutathione during this bodywide scarcity, because they have a complete transsulfuration pathway and are thus able to convert methionine to cysteine, which is the rate-limiting amino acid for making glutathione. So they are better able to provide for themselves, with the happy result that life is preserved, though not nearly as pleasant as one would like it to be! These protected organs include the liver, kidneys, pancreas, intestine, lens of the eye, and to some extent, the nervous system.

    What makes choosing a diet tricky is that all the organs, tissues and cells are fed by the same digestive system and served by the same circulating blood. The brain primarily uses glucose as its fuel. Because the HPA axis is dysfunctional, the blood glucose level tends to drop, causing the person to go for a sugar fix in response to an alarm from the brain. However, when the glucose level in the blood comes up, it is supplied at a faster rate than can be used by the body as a whole, mainly because the skeletal muscles represent such a large fraction of the body's total cellular mass, and they have partially blocked mitochondria. Thus, the blood glucose level rises too high, the pancreas responds by raising insulin, and the excess glucose is then converted to stored fat by the liver and the adipocytes, causing weight gain and overshoot of the control system, which is now not well matched to the debilitated system it is trying to control. This overshoot drops the blood glucose level too far, causing the person to go for another sugar fix. And so on.

    One possibility would be to go for starch rather than sugar. Starch is broken down to sugar by amylase, but it's a relatively slow process, because amylase can attack only at the ends of the starch molecule's polymeric structure. This feature of starch digestion has been used to maintain the blood glucose level overnight during sleep for children who are diabetic.

    In the longer term, the solution has to be to correct the glutathione depletion by lifting the linked partial methylation cycle block, which in turn should correct both the mito dysfunction and the HPA axis dysfunction. I might mention that Dr. de Meirleir believes alternatively that the HPA axis dysfunction in ME//CFS is caused by substances produced by bacteria in the gut. I think he has implicated D-lactate or hydrogen sulfide or both as causing problems in the hypothalamus. He may be right about this. I am finding that there are so many interactions between the partial methylation cycle block and the gut issues in ME/CFS that I think they need to be treated pretty much simultaneously, so that one will not continue to drag the other down. I hope this helps. Regards to Curly.

    Best regards,

    Rich '

    Hope that helps, although i confess I don't fully understand it. I think the person is saying that the body can not handle the gluconeogenisis cycle well due to some kind of block. All I know is that a low carb diet, though fantastic for reducing my sugar cravings and losing some weight (which I need to) made me feel very ill, not just the light headedness, but terrible pain and malaise. This was upsetting for me as i would have liked to have stuck to it for a while longer.

    Valentijn, I didn't really understand what you meant when you wrote ' but eating carbs near the beginning of the symptoms didn't help at all, so I've been staying with it'. I don't know what you were referring to exactly when you said 'beginning of the symptoms'. Do you mean the start of getting ill with M.E? Thanks
     
  10. Valentijn

    Valentijn Activity Level: 3

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    Thanks for finding that post ... I'm still getting a little lost reading it too :p

    Shortly after starting low-carb I got worse POTS symptoms. I tried eating carbs briefly to see if that might make it go away, but it didn't help at all. So I stayed low-card aside from that. I've had pretty bad ME/CFS since February and started low carb about a month ago.
     
  11. penny

    penny Senior Member

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    anniekim,
    I've tried restricted diets of various kinds several times. Most recently I've done three months on a very restricted anti-inflammatory paleo diet (no grains, legumes, dairy, nuts, nightshades, sugar, eggs). I haven't been 100% compliant the whole time, but probably 98-99%. I noticed minor change in my digestion, a little less bloating, change in color/odor of BM's (but not consistency). But I've had no improvement in my ME/CFS symptoms that I feel could be attributed to the diet. I maybe have a little less joint pain, but hard to tell.

    I've been relaxing my diet the last week or two, and again haven't noticed any obvious downturn in symptoms. Despite the lack of evidence that it's helping, my gut (well, my intuition ;) makes me want to stick to it generally, so maybe it's helping a bit and that's what my body is telling me. But to be completely honest, I think a large part of what I get from trying the diets is not actual improvement but just a temporary comfort from trying something, anything.

    So for me, diet doesn't seem to be a major contributing factor to my illness and so dietary restrictions haven't improved my functionality or well being. Restrictions that make me miserable (be that a glass of wine or my lifetime love - buttery popcorn), don't seem worth it. This illness has taken so many of the things that I used to enjoy, that I don't want to forbid myself the few pleasures that remain to me, especially if they don't have any noticeable effect my physical health.


    ps. Like ggingues, I have had some digestive improvement with LDN. I've only been taking it for about a month, but have in the last week or two noticed some change in digestion.
     
  12. anniekim

    anniekim Senior Member

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    Valentijn, thanks for explaining

    Penny thank you for your input, was really helpful, too
     
  13. bishbosh

    bishbosh

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    Like Penny and ukxmrv I've tried various restrictive diets over the years. Candida diets, detox diets, exclusion diets... you name it, I've tried it. I'm very disciplined with diets when I try them; mostly because I'm desperate to get better. I'm willing to put huge effort into maintaining the diet because I know that if it doesnt work, I'll blame myself for not being strict enough with it.

    At one stage I went on the raw food diet because I had read of someone with CFS being cured. I ate about 80-90% raw fruit & veg and for a few months it seemed to help, but then I had a stress-related crash and I was right back to square 1. I've since tried the RFD again but it didn't help; I also found it hard to do during the colder months - I was permanently cold.

    Now I stick to a "sensible" diet using fresh food. I avoid sugar, alcohol, gluten (most of the time) and only rarely do I eat processed or junk food. Its close to a Stone Age or Caveman diet. I think that approach, maintained over the long term has been more beneficial than the "wierd and wonderful" exclusion diets I've tried.

    Nowadays I'm reluctant to even try exclusion diets; I'm so fed up of putting so much effort into them and getting nowhere.

    Hope that helps; sorry if I'm coming over all negative. I still think its worth trying if you really feel it might help you.
     
  14. hollie9

    hollie9

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    I haven't benefitted from the many restrictive diets I've been on. High protein/low carb makes me very constipated...I just can't go without grains and be regular.

    I've been on juicing diets from a Mexican shaman, raw food, candida, lots of high protein mostly trying for weight loss rather than symptom improvement, but the constipation usually makes me terminate. I've taken all sorts of probiotics. Nothing seems to help me. I guess gluten is fattening though and one could at least lose weight excluding it.

    What makes most CFS diets undoable for me is all the cooking, which wears me out, so I get sicker from that "exercise". If someone could come up with an easy, not much cooking diet, I'd be interested.

    I'll probably try the Dukan diet in a few months for weight loss, it's mostly protein. It doesn't make my CFS better but I could stand to lose a few pounds.

    Hollie
     
  15. caledonia

    caledonia

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    Instead of regular processed sugar, you can try these less processed forms of sugar: turbinado or sucanat. They taste wonderful, just like sugar with some molasses taste. Agave syrup is also a good one. Since they're in the moderate glycemic range, they should get you off that sugar roller coaster but still satisfy a sweet tooth.

    I think the answer is somewhere between the methylation block and adrenals. I'm currently avoiding 28 food allergies which basically amounts to doing the Paleo diet in an attempt to take a load off my adrenals while I'm trying to heal them from adrenal fatigue.

    As for constipation, try lots of magnesium daily. I'm taking something like 1500mg. If you have adrenal fatigue, you will be depleted in magnesium because the adrenals regulate magnesium levels.
     
  16. Tulip

    Tulip Guest

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    I noticed a big difference in my digestion when I cut out red meat, dairy, sugar, grains, starchy carbs, caffeine and all processed foods (basically doing the paleo diet). I feel much lighter and my stomach does not blow up like i'm 7 months pregnant anymore!. It also improved my gland/tonsil pain which for me is chronic and there every single day, it improved the pain I get in my spinal cord which comes down from my glands, it reduced the severity of my night sweats and it improved my endometriosis. For me this way of eating is a life saver and not something I view as "restricted".

    BTW I view sugar as the antichrist :tongue:- it suppresses the immune system, which in M.E. it is already suppressed so it only makes us sicker!.
     

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