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.
Discuss the article on the Forums.

Am I obsessing too much over the gut?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Prefect, Feb 19, 2017.

  1. Prefect

    Prefect Senior Member

    Messages:
    180
    Likes:
    84
    Canada
    in 1997 I developed a syndrome mainly involving dizziness, morning fatigue, mental fog, derealization, and mental illness (anxiety, panic).

    This illness started at the onset of a crazy gastrointestinal episode overseas (basically enteritis symptoms) and severely elevated liver enzymes, which resolved after a few months.

    Since then I do have crazy bouts of IBS like events couple of times a year (crazy yellow bile burning diarrhea and the odd sulfury event sorry for the TMI) that resolve after a couple of months.

    Lately I've had a worsening of the symptoms I specified in the first line due to life stresses and sleep disruption, likely my SSRI poop out, and the likely resulting inflammation to my nervous system. And depression has come on top of that, which I'm new to.

    My gut has never been back to its pre-1997 state, but right now it's not the worse it's ever been. It doesn't really act up all that bad, it's regular, it doesn't bother me all that much. I did have a bile acid type diarrhea a few months back, which I get a couple of times a year.

    Am I crazy for using this opportunity to get to the root of the problem, mess around with probiotics and leaky gut supplements, just because my illness began with a GI event? It's really the other symptoms I want to tackle, my gut's "Fine" enough for the new me post-1997. Or should I just face the music and go on another SSRI?

    I don't know...The mental symptoms are wearing me down.
     
    ChrisD likes this.
  2. ahmo

    ahmo Senior Member

    Messages:
    4,318
    Likes:
    6,426
    Northcoast NSW, Australia
    There seem to be reports nearly weekly about the gut being the origin of many symptoms and illnesses. I suffered my first 8 years of ME w/ no idea that my gut was involved. I finally began healing after I started the GAPS diet, and then went on to detox protocols, probiotics, and getting my biochemistry right w/ supps. My nervous system was an awful mess before I found GAPS, my anxiety unbearable. Within the first 3 days w/o gluten and dairy, I calmed by 50%. Eventually B12 corrected many of my other CNS issues. Keep looking. good luck.
     
    Chateau and Knockknock like this.
  3. Eastman

    Eastman Senior Member

    Messages:
    238
    Likes:
    185
  4. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,280
    Likes:
    5,528
    Uk
    we do need to temper our enthusiasm for all things gut since we are programmed to have a natural tendency to be suspicious of anything we ingest. This is hard programmed in all of us and can sometimes lead us to false beliefs.

    An example would be that most people will put a dicky tummy to be down to "food poisoning" from a meal they ate the night before. It is actually far more likely that this was something that was eaten 48 hrs or greater before the onset of symptoms.

    Another one is people who believe they are allergic to a food because they feel bad the next morning. true allergy would have a much shorter onset of symptoms from the time of ingestion. This false belief has led to a rise in food allergies being reported in the general population when actually the true number of medically defined cases is a lot lower (10%ish from memory).

    We all sometimes put 2 and 2 together and make 5 and some disreputable practices and researchers after grant money rely on these false beliefs to make money. is all I'm saying. I tread carefully in this area for that reason.
     
  5. Prefect

    Prefect Senior Member

    Messages:
    180
    Likes:
    84
    Canada
    It's just that if there were a unified diet that everyone with these conditions said is helping I'd be on it.

    One source says I should cut out carbs, only eat proteins and veggies, so that I stop feeding bacteria and candida in my body. Which would be easy for me, because I'm a fruit, salad, meat guy to begin with.

    Another says I should only eat carbs because proteins make ammonia and that's what causes CFS symptoms.

    Another says I should cut out lectin containing foods.

    I don't know where to begin.

    If the human body was such a dud that so many VERY different permutations of perfect storms would miraculously happen in different people to create all VERY similar disease conditions, we'd extinct as a species. It's got to be ONE THING that's causing all this.

    I have a Comprehensive Stool Analysis (specialized test) in a couple of weeks, and I'm worried after I have that done, I still won't know what diet I should go on. Half the world has these bacteria in their body, including H Pylori.

    I feel if anything was the magic bullet in this condition it would have already made the headlines.

    And the next day I'd be on it.

    Cutting out gluten and dairy is easy, maybe I can start there.

    Sifting through the contradictory information out there on these diseases is almost as stressful as the condition itself.
     
  6. Learner1

    Learner1 Professional Patient

    Messages:
    721
    Likes:
    985
    Pacific Northwest
    The gut is incredibly important. We rely on the bacteria in it to break down food into individual nutrients and convert them into forms we can use.

    Integrity of the intestinal structure is important, so that nutrients are properly transferred to the bloodstream, and so that inappropriate substances, like improperly digested good particles are not. And so toxins can be properly eliminated in feces.

    A CDSA stool test should be very helpful in determining how well you're digesting and whether you have a happy community of hardworking bacteria. And if you have problems and it will tell you what you can do about it.

    A comprehensive nutritional test like a Genova Diagnostics NutrEval FMV with Amino Acids can tell you about how well carbs, protein, and fats are going into the Krebs cycle and your sink and fatty acid status.

    This can help you optimize your diet.

    If your digestion is working well, then a lower carb, moderate protein, high fat diet is likely a good one for CFS. But, more likely, your digestion will be a work in progress, so a nutrient dense Paleo Diet may be a place to start.

    And avoiding gluten, corn, say, and milk will help your gut, too.
     
    ChrisD likes this.
  7. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,280
    Likes:
    5,528
    Uk
    I
    I agree there are a lot of passionate people about gut. I have looked at this for a few months here is my take on it.

    There seems to be a few camps:

    1). Gut biome is wrong and we can fix it by probiotics and what we eat, faecal transplants etc

    There is very little real evidence to suggest that any of the treatments are really effective in the long term. My personal view as an ex microbiologist and food scientist is that this has risks and low benefit associated with it in terms of treatment. your gut biome may be imbalanced, but this probably has more to do with other factors that are not changed with any treatment. Any small change that may occur as a result of "treatment" will be a losing battle against the natural tendency for the gut biome to return to the imbalanced state. Treatment needs to be more about the reasons why it has become imbalanced in the first place. I suspect that the desire to "reset" the biome and fix everything else is a little like wishful thinking. We don't know enough about why this happens, so more research is needed. Some people report a short term gain, but the maintenance of this is akin to "painting the forth bridge" and any benefits have to be weighed up against the symptoms. I doubt anyone really can say that they did a course of treatment and then went back to eating normally and their gut flora was fixed and their CFS disappeared?

    2) leaky gut.... change your diet to repair your gut

    There is no compelling evidence that I have seen here other than anecdotal so I take all of this talk with a pinch of salt. It seems to be a pet theory picked up by the "gluten is bad" movement. Gluten is bad for coeliacs but when you deviate away from this condition it tends to get a bit shaky in terms of real evidence. There is no doubt a lot of pseudoscience around this and this is driving a perception in the media that is driving a growth in free from products. All consumer research I have seen shows that people are only working on perceptions rather than facts in this area and the main area of confusion is that gluten is equated to starch which is clearly wrong.

    3) improve energy and reduce symptoms of imbalance/ modify diet to work with dysfunctional ATP synthesis

    There is good logic here from the most recent studies that diet could improve wellbeing. This seems to be around eating a diet less dependent upon carbohydrates and focussing more on fats. There seems to be a lot of debate about how severe to go (I.e. Fully ketogenic or just lower carbs). I favour the lower carbs route (100-150g per day) since I prefer to take nutrients from food rather than supplements. You will need to look at supplements for missing micronutrients if you cut out all carbs. High protein diets I.e. As per Atkins and some of the paleo have their drawbacks in terms of nutrition also and seem to be woolly when it comes to metabolic biochemistry improvements. The paleo movement in particular put a lot of their thinking about what our ancestors ate, which actually is a subject of debate. The biology of our physiology goes against this argument in that we clearly ate a lot of sweet fruit in the past and are clearly omnivores rather than the more carnivorous versions of some of these regimes. Why paleo is seen as the epitome of human evolution I am yet to understand.

    4) prevent allergic reaction, exclude food groups

    There may be something in this in terms of inflammation response and histamine due to dysfunctional metabolism, however there is a lot of woolly science talked up that confuses the issue. Modifying diet and being mindful of high histamine foods and adopting a balanced approach seems to make sense though if keeping histamine under control is an issue. I limit cheese, wine, cured meats for this reason.

    Everything I've seen makes me belive that regimes that exclude food groups are too extreme and difficult to maintain. I think focussing on balance is the key and finding out what this is is quite individual and should be thought as symptom relieving and an adjustment to dysfunctional metabolism rather than cure. Personally I have modified my diet to eat less carbs (I don't distinguish between sugar and starch), eat more fat (50% of total calories) eat moderate protein (100g) and focus on nutrient dense foods and whole foods that help me with essentials vitamins and minerals (eggs, almonds, pumpkin seeds, dark chocolate, avocados, peppers, spinach etc). I have also cut out caffeine to 2 shots of espresso in the morning with my breakfast.

    You may find that something works better for you. We all seem to have different levels of symptoms. I hope you find your way through the minefield of opinion to try and find something that works.
     
  8. Learner1

    Learner1 Professional Patient

    Messages:
    721
    Likes:
    985
    Pacific Northwest
    While it's very true that we don't know what the optimum microbiome composition is, it's well known that many drugs, diet, toxins, and parasites alter its composition. And contrary to what some say, studies have shown that these alterations persist for a very long time.

    Furthermore, certain inhabitants, like c. difficile, h. pylori, candida, firmicutes, tapeworms, roundworms, etc. are known to have specific health consequences, that left untreated, can be very serious.

    Paying attention to what caused an imbalance is smart. But so is identifying any specific offenders, getting rid of them, and replacing with species known to dwell in the guts of healthy people.


    Reasons to avoid gluten:

    1) avoiding RoundUp, which is damaging to mitochondria
    2) avoiding folic acid, which many of us cannot process due to our genetics
    3) relying too heavily on gluten containing foods promotes candida, SIBO, obesity, diabetes, and cancer due to excessive carbohydrates (sugar) which feed these things
    4) many people develop gluten sensitivity, which impacts gut health and nutrient absorption - see Aristo Vojdani's work on how it develops without having celiac genes. Most testing gas been inadequate - Cyrex Labs has the most comprehensive test available.

    I don't avoid gluten because it's fashionable. I do it because it's made my entire family sick.

    Agreed. The recent studies seem to support lower carbs, higher fat, with adequate amino acids. The carbs we eat should be nutrient dense, like non starchy vegetables.

    However, though we should get as much nutrition as we can from food, we need to supplement.

    It is impossible to get the daily value of each and every nutrient from food in under 10,000 calories a day and many of us need far more than the daily value.


    Excluding what makes you sick makes sense.
    Personally, I don't find I miss grains at all, and I've yet to find why I should add them back into my diet.

    Having a mindset to GAIN nutrients works better than trying to AVOID foods. I find I get full with the things I need to eat and don't have room for those that harm my body.

    I've made the same dietary modifications as you have, and it's been sustainable over a long time. But there will be individual variances... one child is allergic to eggplant and carrots, while the other is allergic to fish and coffee...
     
    Basilico likes this.
  9. Prefect

    Prefect Senior Member

    Messages:
    180
    Likes:
    84
    Canada
    This is pretty much a representative caption of my daily diet (I only eat home cooked meals, and use no commercial sauces, use my own spices, have for 20 years):

    Breakfast

    One black tea a day, steeped for 0.5 hr to maximize l theanine production. I add some sugar, no dairy.
    Flourless Sprouted Whole Grain Cinnamon Raisin English muffin with extra old cheddar cheese.

    What I could change: Replace english muffins with gluten free Rice Cakes, and the cheese with eggs

    Before lunch

    Two clementines

    Lunch

    Some type of meat with either rice or quinoa or potatoes or squash and some type of veggies

    or

    Can of sardines (only in spring water) with salad and two slices of sprouted whole wheat bread

    What I could change: Replace bread with gluten free Rice Cakes

    Before Gym

    A Banana - or - Some plain 3.5% yogurt

    What I could change: Replace plain yogurt with non-dairy snack

    Dinner

    Same as lunch. I may add home made probiotic sauerkraut during dinner or salad.

    After Dinner

    70% dark chocolate and half a glass of red wine, non-negotiable ;)

    My diet isn't all that dependent on gluten or dairy, so it wouldn't take much to try eliminating for a month and see what happens.

    As for histamine, would I get a histamine like reaction, like hives, rash, runny nose, etc, after sauerkraut, cheese, wine, etc? Which I don't.

    I should say: I enter a semi-remission when I have a head cold. I don't even know how to begin explaining that one.
     
  10. Learner1

    Learner1 Professional Patient

    Messages:
    721
    Likes:
    985
    Pacific Northwest
    From my experience, that looks like a lot of carbs, grains, and dairy which could be promoting gut dysbiosis.

    You might try upping protein and healthy fats, eating more vegetables, swap high sugar fruits for low, and removing dairy. If you find you need more carbs, try beets, carrots, or sweet potatoes.

    Maybe around 1.4g/kg a day of protein.
     
  11. Prefect

    Prefect Senior Member

    Messages:
    180
    Likes:
    84
    Canada
    Have you tried this? Has it helped?
     
  12. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,018
    Likes:
    2,822
    Vancouver, British Columbia
    I would definitely recommend that you try probiotics. Not the multi strain type you can find in any drug store, but specific single strain ones (ie Align, Florastor, Culturelle, etc.). Also look into dirt based probiotics (ie Prescript Assist) and e-coli (Mutaflor - available online in Ontario). Check out Ken Lassesen's CFS Remission website. He is a firm believer in probiotics for CFS and gut health. If you don't eat a healthy diet with lots of fruits and veggies that is something else to consider changing. Also homemade Kefir is a good source of probiotics and yeasts.
     
    starlighter likes this.
  13. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,280
    Likes:
    5,528
    Uk
     
  14. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,280
    Likes:
    5,528
    Uk
    Sorry once again can't seem to get the hang of this multiquote thing.
     
  15. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

    Messages:
    1,280
    Likes:
    5,528
    Uk

    I would suggest you look at keeping a food diary and calculating the amount of carbs protein and fat you are eating to see if you can relate balance vs improvement in symptoms. I use myfitnesspal but there are other apps out there that can do this really quickly. So if you are eating say 200g carbs and 80g protein a day try rebalancing to eat say 150-180g carbs and 100g protein and see what the difference is. I would advise making small changes and let them bed in for 2-3 weeks before making further changes. Your gut takes a while to adjust it won't happen within days. Chopping and changing too quickly is likely to give you further problems. Low and slow as with everything CFS/ME. try and keep it as varied as possible and just think carbs, protein, fat, sugar and fibre. Eat more vegetables than fruit and try and eat a portion of nuts and seeds a day. I would do the basics before trying anything more radical.
     
    starlighter likes this.
  16. Prefect

    Prefect Senior Member

    Messages:
    180
    Likes:
    84
    Canada
    I've been giving it serious consideration. Even my family doctor offered me Florastor years ago when I had a terrible bout of IBS, and was shocked that a family doctor in Canada of all places is offering me a probiotic. He also wanted to nuke my gut with all antibiotics out there to eradicate H Pylori, I said no way (that's a whole other conversation)

    But my dietitian ex wife's ground flax seed suggestion eliminated that particular IBS flare up, so I never tried Florastor. Lately I keep finding myself picking it up at Shoppers and staring at it in indecision.

    I've been thinking about home fermentation, and even excited about it, I even got a slow cooker to make yogurt, but all this no histamine, no dairy stuff on this website is spinning my head, I've become paralyzed with indecision.

    I had told myself a couple of years ago if I ever have a bad flare up I'm going to buy VSL3 and use it. Now here I am, and it's $180 a month and I've realized such a hardcore probiotic may not be a good idea.

    So confused...

    I've hired a Toronto Naturopath and I'm having a stool analysis done (Genova labs) in a couple of weeks. Should I wait to find out what that shows before I try a probiotic?
     
    Misfit Toy likes this.
  17. ljimbo423

    ljimbo423 Senior Member

    Messages:
    393
    Likes:
    580
    United States, New Hampshire
    I don't think you are crazy at all wanting to treat the gut. I have been on a low carb diet and taking high dose probiotics and supplements to kill off dysbiosis, for about 4 months now. I have noticed big improvements in my health and I continue to improve.

    I think it's really important to make the changes you want to make to your diet or supplements, very slowly. At a pace that doesn't cause too many die off symptoms. That way you are much more likely to be able to stick with the changes you have made and heal your gut.
     
  18. Learner1

    Learner1 Professional Patient

    Messages:
    721
    Likes:
    985
    Pacific Northwest
    Yes, I have and it helps. I've found the standard advice of .8g/kg a day to be far too low. I feel better with more protein, and tend to run short of amino acids on lab tests. The recent research showing low amino acids in CFS patients seems to agree with what my doctor and I have found.

    Recommendations for sick people go as high as 2g/kg a day, so the 1.4g/kg is in the middle.
     
  19. Learner1

    Learner1 Professional Patient

    Messages:
    721
    Likes:
    985
    Pacific Northwest
    Gary Taubes' extremely well researched book, "Good Calories, Bad Calories," gives plenty of information that supports wheat flour and excess carbs causing these diseases, with ample citations. He also gives a lot of history on the politics of grain consumption in the US, which are still at work today with so-called experts ridiculing those who choose to eschew gluten in the pursuit of health.

    This 2012 article discusses the health implications of non-celiac gluten sensitivity:

    http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf

    And there are pitfalls to substituting other grains. Corn is problematic due to Roundup and rice tends to have arsenic, particularly brown rice.

    In the pursuit of being well, if in doubt, perhaps it's best to look at what might be causing aspects of our problem and avoid these triggers.

    In my travels to some excellent clinics I've found most other patients have come to the conclusion that gluten is counterproductive to their health, and they sure didn't make that choice because they wanted to be hip and trendy...it's a pain in the neck to eat differently (but worth it).
     
  20. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,018
    Likes:
    2,822
    Vancouver, British Columbia
    I have gone totally gluten free several times now and I have not noticed any improvements to my health at all by doing this. It was expensive and time consuming and all for nothing.
     
    arewenearlythereyet likes this.

See more popular forum discussions.

Share This Page