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Elimination Diet...for my chronic fatigue

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by soxfan, Feb 27, 2017.

  1. soxfan

    soxfan Senior Member

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    i haven't posted much lately since nothing really has changed for me. It took me three months to get in to see an Intergrative Doctor at Duke in Raleigh. He was a super wonderful doctor except for the fact that was his last day at the clinic. He is moving to SC so I am now on another list to see his replacement sometime after May!

    So he did spend an hour with me going over the extensive medical history forms I sent in two weeks prior. He is exactly the type of doctor I have needed to see since moving here.

    To make a long story short he has put me on an elimination diet as I am sure most here have heard of. I have been on a gluten free diet before with no results and a anti yeast diet which was way more restrictive than this one I am on now with also no results.

    My primary main symptom since I got rid of Lyme has been never ending tiredness...overstimulation feeling in my brain...easily mental fatigued...PEM...occasional crashes..in fact in one now due to cataract surgery last week. I also have poor sleep quality and weird rashes on my back.

    I have no problem doing this diet since I eat well anyway. Giving up the dairy will be the hardest for me. I stocked up the kitchen with "allowed" foods. I am starting with the gluten etc...even though I have been tested and even had a biopsy for celiac.

    So this is where I am starting ...I don't want to give up trying for a better quality of life but I have been here..done that but feel if I want to get in to see his replacement I have to do this diet..

    Anyone ever really feel better after giving up certain food groups? I just don't see how this will change my chronic tiredness....which can leave me at times housebound...unable to even read...or watch programs. Or stop PEM and crashes....

    It's only been four days but I don't feel any different at all or maybe it's too soon....
     
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  2. Mohawk1995

    Mohawk1995 Senior Member

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    @soxfan Our son tried all types of diets including the ones you mentioned. He was never better on any of them although his preexisting lactose intolerance was worse when he had ME/CFS. The diets that tended to limit carbohydrates actually made him worse (low energy).

    If you read any of my posts you will know that I am under the opinion that ME/CFS is a Neuro-immune protective response that is either too strong and/or goes on too long. This in turn shuts down metabolism in the body which creates all kinds of biochemical, hormonal, metabolite and neuro-inflamatory problems.

    So based on that theory, might some diet changes help....yes they could, but I do not think we will find the answer to ME/CFS in diets except perhaps in those cases where true pre-existing food allergies or food intolerance set off the Neuro-immune protective response. Even then changing the diet will not likely "turn off" the response if it has become longstanding in nature.
     
  3. soxfan

    soxfan Senior Member

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    @Mohawk1995 ...I have to agree with you. I honestly don't believe eliminating any of these foods is going to change my symptoms. I really had to agree to do it so they would put me on the list to see the replacement doctor in May or June. I truly liked the doctor I saw and I believe he thinks this diet will yield results.

    When I was on the anti yeast diet I was so exhausted with low energy I couldn't do anything. I do not believe I have any food allergies as I have cut out many of the "inflammatory " foods in the past.

    He did mention that he believed my immune response got turned on when I became sick with Lyme (2004) and even after the infection was cleared that the response stayed on in high gear. That I agree with...

    I have read tons on inflammation in the body and the symptoms just don't sound like the problems I experience.

    Thanks for your reply...I agree!
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    There may be a little benefit to tweaking your diet. You could consider rebalancing food groups systematically ( like reducing carbs upping protein or fat) and tweaking portion sizes throughout the day to avoid loss of energy during digestion but it's best to keep all the food groups you can and eat a balanced and varied diet to avoid nutritional deficiencies. Reducing refined carbs is probably a good place to start since most of us eat too many of them but unless you are a coeliac there is no advantage to cutting out gluten per se. gluten free diets are mainly groundless so try not to miss out on a diverse diet unnecessarily. I would question the validity of any professional stating that gluten is bad for you. This is highly misleading. My rule of thumb is that if anyone starts spouting elimination diets, they are normally not worth pursuing since they more than often are not based on sound facts. Whatever you do make small changes and allow 2-3 weeks before making the next change to allow your body to adjust.
     
  5. TigerLilea

    TigerLilea Senior Member

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    Four days is too soon. I was told that within two to four weeks there should be a very noticeable difference if a diet is working. I've done four different elimination diets, gone gluten free, dairy free several times, sugar free, caffeine free, gluten/dairy/sugar free, done the Wahls diet, the Specific Carbohydrate Diet, and probably some diet I can't think of, and I didn't notice any improvement in my CFS/ME symptoms. On the SCD I discovered that I was lactose intolerant but that has since rectified itself with the use of probiotics. And going caffeine free I discovered was the cause of my racing heart and anxiety. That took only five days of being caffeine free to feel great. This was before I got hit with CFS/ME.
     
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  6. ukxmrv

    ukxmrv Senior Member

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    Hi Soxfan,

    Reading your post made me feel as if we were in a time-warp back to the 80's. I did a 1 year no dairy and no gluten then. Also longer on no yeast anti-candida type diets.

    Had no benefit to me sadly. I also did a allergy type thorough elimination diet. This did turn up some foods that upset my stomach but that was it.

    My SIL though who had "chronic fatigue" discovered that she was gluten intolerant and has done really well since giving it up. Her symptoms were always stomach and fatigue though.

    It may be that this is the missing piece of the puzzle for you. I was told that for dairy and gluten it could take 6 months to see the benefits.
     
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  7. soxfan

    soxfan Senior Member

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    @ukxmrv ....I don't have high hopes for it helping me either. I did the gluten free years ago when being treated for Lyme but remember it had no effect on my fatigue. I have no stomach issues at all...no headaches...joint pain....etc. Many of the symptoms listed on those lists for inflammation I just don't have.

    The diet the doctor gave me really doesn't seem like a "diet" at all...just the way we all should be eating. I am gonna miss my scrambled eggs though. As long as I can have fruit and nuts I am good.

    The anti candida diet was brutal...it left me feeling weak and listless.

    @TigerLilea ...yeah I know four days is way too soon to notice anything. I just wanted to get other people's opinions on if it helped. I have been trying for a good 7 years to find something that will make a difference and give me a better quality of life instead of living in this constant fatigue fog....thanks!
     
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  8. Basilico

    Basilico Florida

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    My husband and I have both for years tried every kind of elimination diet, and every 'healthy' way of eating from low carb paleo to high fat primal to high carb Ray Peat to the moderate Perfect Health Diet and everything in between. Diet never made any long term difference for either of us, and having genuinely given everything a try, I feel confident knowing that I left no stone unturned in terms of dietary remedies. So, even though it is unlikely to be 'the cure', you never know, perhaps it might help a little. Or maybe it will do nothing at all, and at least going forward you won't have to waste time futzing around with gluten-free stuff (I did gluten/dairy/soy free for about 7 years, before it was popular, and it was really tough. Now there's so much gluten free stuff everywhere I look, it doesn't seem quite so difficult anymore, just expensive!)

    I used to have a friend who had Fibromyalgia, and he was also eating gluten/dairy/soy free. Unfortunately for him, every time he eliminated a new thing like nuts or eggs) he'd feel slightly better for a short period of time but would then develop an intolerance to that food and never be able to add it back. So his diet kept dwindling and he just kept feeling sicker. I realize that not everyone reacts like that, but it did make me a bit wary of long term elimination diets unless there was a really good reason.

    My opinion is that the people who improve with dietary changes are the ones who were generally eating a fairly poor diet to begin with. I've spent a lot of time on other health forums over the years, and from what I've seen, people who have a generally healthy and clean diet to begin with don't really improve on elimination diets unless they are celiac or have some serious intolerances.

    My husband has pretty bad PEM, which in the past year has been worse than it's ever been. We just recently started focusing in increasing glutathione, and he's currently taking a bunch of things to hopefully support glutathione production. So far, of the things he's taking, what I see working is liposomal glutathione - a few times after taking it he's had some really good mornings (though he crashed after lunch and probably should have taken another dose), but more importantly if he takes it as soon as he feels PEM coming on, it either prevents it from happening or drastically reduces the severity and duration. Many of the CFS experts believe that low glutathione is a big piece of the CFS puzzle.

    Have you already done methylation support? That could be a good next step if you haven't already.

    Have you ever used Baclofen? It's one of Goldstein's top 23 drugs for CFS. It's a non-habit forming mild muscle relaxant that in my experience docs are pretty happy to prescribe because there's not really any abuse potential, and it's also dirt cheap (even without insurance - it was on Target's $5 list). I have a rx for it for muscle spasms, and while it doesn't do anything for my muscle spasms at all, when I take it I'm completely asleep all night. It's a GABA agonist, which is probably why. If your sleep is disturbed, you might want to consider giving this a try in case other things you've tried don't help.
     
    Last edited: Feb 27, 2017
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  9. maddietod

    maddietod Senior Member

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    Dietary intervention feels multi-dimensional to me, like a 3D jigsaw puzzle. I get a single symptom, like throat clearing, from tea and coffee and sugar......and all the things on GERD diet lists. But I don't have heartburn or reflux.

    So it takes 3 years to figure that out, and meanwhile I've tested a high carb vegan diet and noticed that all my pain disappeared. But my brain is fuzzier.

    Stuff is coming out about PWCFS having trouble creating energy from carbs; maybe I've been stressing my system. Which reminds me that I felt pretty good eating paleo years ago. But.....pain.

    So now I'm testing a low carb vegan diet (I can't eat dairy), with avoidance of all the foods I've had problems with. This is not at all a classic elimination diet, where doctors assume a list of safe foods. I'm assuming my own list, based on many years of food experimentation.

    My point is that I think you'll learn some useful things from your diet. If you don't get the relief you're hoping for, you will probably see improvements somewhere, and you can build on these.

    Of course, I hope this experiment works fabulously for you! Best of luck.
     
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  10. soxfan

    soxfan Senior Member

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    @maddietod ...I don't know if I will learn anything useful from this diet but it is worth a try. Like I said in my original post...I eat pretty well anyway. I am eating gluten free and no sugar at the moment. Just the fruits and sweetener that is listed. I am for sure eating healthier...now and have actually lost a few pounds already.

    My son became a vegan last summer...overnight. I give him a lot of credit for being able to do that instantly. He made the decision and went with it. I actually cleaned out my cabinets of the " not allowed" foods and brought it to the food pantry so I wouldn't be tempted. That's how committed I am to giving this elimination diet a try.

    @Basilico ...I can't say I eat perfect all the time but I eat pretty good. I never seen to have any problems with what I do eat so not sure how all this will turn out. I just got into an Intergrative Doctor here in NC so my journey with him is just beginning and diet was the first step. I can't tell you how difficult it was to find a doctor who would even see me....my PCP was useless and so I had to go out on my own and find someone. I think after the diet experiment I am hopeful he will address my sleep since that is my second worse issue....very poor quality and unrefreshing.
    I don't even have an appointment and am on a waiting list so have no clue when I will get in again....

    It's terrible when all a person wants to do is feel better and have a better quality of life but so difficult to do ...without help.
     
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  11. perchance dreamer

    perchance dreamer Senior Member

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    I'm with you on the Baclofen. It works on Gaba-B, not Gaba-A, so isn't habit forming. It helps me with pain and sleep.
     
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  12. Timaca

    Timaca Senior Member

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    soxfan~ I went on an elimination diet over 3 years ago and am still working through it. I found (to my great surprise) that food IS an issue for me. It didn't solve everything, but I do feel better.

    I can eat most vegetables, but I don't consume too many nightshades or high histamine foods. I limit my fruit intake so my triglycerides don't go up too high. And I've had to switch out short grain brown rice for long grain for the same reason.

    Rice is the only grain I can eat. I can't eat animal protein (gives me headaches). I can eat legumes, but not soy too many days in a row or I get joint pain.

    I have a blog where I post. Here is my latest food challenge: Oats. It didn't go well.

    Give your elimination diet at least 4 weeks. What foods are you eliminating? If food doesn't work for me, I get either headaches, joint pain or oral petechiae.....along with sleepless nights.

    I recently tested one large strawberry and didn't sleep and had a headache for 2 days! I suspected that would happen as the same thing happened last year. Ditto for blueberries last year. I will retest them this year, but I'm not too excited about that since the strawberry challenge didn't go well. I *seem* to be okay with raspberries however.

    Keep at it....it is complex.

    Best,
     
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  13. soxfan

    soxfan Senior Member

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    @Timaca ...I actually read your blog on the foods you have been eliminating etc...and the outcome. The Intergrative Doctor gave me a list of foods allowed and what NOT to eat. It is a pretty extensive diet but there is still quite a bit I can have. I felt I really couldn't eliminate everything at once so I started with gluten and all wheat and grain products...not including rice. It's been five days on the non gluten etc...I feel no different at all.

    I have done the gluten free before with no results. Then I will move on to dairy...then whatever else in there. I also have cut out refined sugar and products since that was an easy one for me.

    Problem is my only real debilitating symptom is chronic un-ending fatigue...poor quality sleep. I am always...always...fatigued along with PEM after too much mental stimulation.

    I never have headaches...joint pain...GI issues...nothing. I am extremely healthy except for the chronic fatigue...I live everyday with tiredness...from the time I get up and as the day goes on it gets worse and finally by three I am horizontal for a few hours.

    I am going along with the diet experiment because I would try anything to feel normal and not extremely tired. Problem is the fatigue feels different everyday. It's not the same ...hard to explain. So I can't see how it's diet related when I almost always eat similar things everyday.

    I feel the fatigue is all brain related somehow because I can be physically active with NO consequences. It is only mental exertion that gives me PEM and crashes.

    I will stick the diet out though because I have to start someplace with this new doctor. Then hopefully he will work on helping me get a nice restful sleep.

    Your blog is great...I read a lot of it yesterday. We have been to Hawaii many times and for some reason I do very well on vacations...thanks for your note back on this thread...it is much appreciated.
     
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  14. SuzieSam

    SuzieSam Senior Member

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    I think that it's imperative that your sleep is looked at. You said you haven't got in to a Sleep Doctor yet, so I guess you haven't been to a sleep lab yet? It could be that you have sleep apnea, or that you aren't getting restorative sleep.

    We recently discovered from a sleep study that although my husband sleeps 8 hours a night, it's like he sleeps only 3! He rarely reaches Stage 4 - Deep Sleep. The sleep that truly rests and refreshes you. Solving it isn't easy...

    But at least we know what it is.

    I think you might be putting yourself through dietary angst for no good reason. Please push on the sleep front!
     
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  15. perchance dreamer

    perchance dreamer Senior Member

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    @soxfan, how well do you breathe through your nose? Nasal congestion and obstruction contribute to poor sleep. As my ENT said, if you don't breathe well, you don't sleep well. Your body wants you to breathe freely through your nose, and if you don't, it causes your sympathetic nervous system to be overactive while you sleep.
     
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  16. soxfan

    soxfan Senior Member

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    I have had two sleep studies....the latest being in 2012 . Although I didn't sleep much both studies said I did not have RLS or Sleep Apnea. I know those studies were a while ago but it's hard to get into doctors down here....months ...especially speciality doctors. I feel like I sleep okay although I wake several times.
    My husband says he doesn't hear me snoring or gasping and I never wake myself up snoring. I wish I could record my sleep some night.

    I have no idea when I could get into a sleep specialist. I will say again that sometime my fatigue is brain related and sometimes physical...depending on my activity. I actually have to see my useless PCP on Tuesday because she won't refil my Klonopin which is the only thing that calms my overstimulation...I will ask for a referral to a sleep doctor.

    Problem is no matter what I take to sleep during those studies I only end up really sleeping two hours or less...

    @perchance dreamer ...I breath very well through my nose during the day anyway...never stuffy...no allergies..seems like at night I breathe well too but who knows...
     
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  17. perchance dreamer

    perchance dreamer Senior Member

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    It's so hard to sleep during a sleep study, with all those electrodes on you and everything else that makes you feel tethered. You have to be so careful when you turn over. When you go to the bathroom, you have to get someone to unhook part of the equipment and wheel the rest with you while you go.

    Can't someone just invent a pod they can pass you through for testing instead of attaching all the crapola?
     
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  18. Markisoutside

    Markisoutside

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    Hey Soxfan, I am curious what you mean you got rid of lyme. It seems like it is better after treatment, but if you are experiencing fatigue you may still have it.
    I have had lyme for 6 years and was diagnosed with cfs 8 months ago. I quit eating white sugar 8 months ago and my brain fog lifted significantly right away.
    I have been following the AIP diet for 4 months to help alleviate my cfs symptoms. It took 42 days before I noticed a change, but my energy started returning and my depression eased. Since then I have had pretty good energy until I try to reintroduce foods or overdo it. Then I have a crash.
     
  19. Timaca

    Timaca Senior Member

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    Hi Soxfan~
    I'm glad my blog has been of some help to you. It does take a while to see if an elimination diet is helpful. I remember it taking about 3 1/2 weeks. A book you might find helpful is: Dealing with Food Allergies. She not only discusses foods: eg wheat, dairy, eggs, fish, etc. But also food chemicals: eg histamine, tyramine, etc. That had been enlightening for me since in addition to having reactions to wheat, oats, etc, it seems I possibly have some chemical issues with foods too (histamine and maybe benzoates). Still figuring that out.

    One problem with eliminating one food and then another is if two or more foods are giving you issues, and you are still eating Food A while eliminating Food B you may not notice much of a difference, depending on your sensitivities to the foods.

    Dr. Joneja (author of the above book) makes the statement that if you are still sick after doing the elimination diet then food is not your problem or you are still eating a problematic food. Her website can be found here.

    Having said all that, it does seem like something other than diet is causing your extreme fatigue. My website is not loading right now, or I'd give you a link to my experience in a chlorinated pool. (If you go to my health journey, or something like it, it's in the post about My Health Update in 2016 so far -- or words to that effect). It astounded me what happened, and opened my eyes to a whole new world of what is also contributing to my health issues!

    I've had bouts lately of feeling very tired. Those days always concern me. Then today has been quite a good day for me (still tired at times, but at this moment doing well).

    The reason I tried the elimination diet is I felt it couldn't hurt and might help. And it did help so I'm glad I tried it. I am just shocked how long the process has been and how many, many foods are issues for me.

    Wishing you answers!!!

    Best,
     
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  20. soxfan

    soxfan Senior Member

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    @Markisoutside ...I was treated successfully for Lyme in 2007-2008 with Rocephin IV for six months. I felt completely normal...well...sleep was back...I could work full time again...it was wonderful. The fatigue I experience now is completely different than what I felt back then.

    It was more of a total exhaustion where I could barely breathe. I had to almost quit work and I couldn't exercise at all. I almost missed my son's college graduation due to extreme exhaustion. I don't know what has happened in the years since but i developed PEM and bad mental fatigue....overstimulated easily...can't handle stress.

    I have been on loads of oral antibiotics and bicillin injections since then and nothing has helped with what I have now. I went to the top Lyme doctor in NY and he agreed that I did beat the Lyme.

    I am sticking with the elimination diet for at least a month even if I have no relief. Then re evaluate what to do.

    @Timaca ...I really don't know anymore what to think. The Intergrative Doctor feels I indeed have CFS even though I don't have many of the common symptoms. I just know that everyday is a struggle and I am getting to the end of my rope. It's so difficult to get into doctors here for some reason and then you have to wait months for a follow up.

    I agree that the elimination diet can't hurt me and I haven't been hungry at all. I am going to eliminate dairy totally starting tomorrow which was the last thing on my NO list. I have stopped everything else.

    I really have to do this in order to satisfy the doctor or else he won't help me look for other reasons. This is just step one in the process.
     
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