The Resistant Starch Challenge: Is It The Key We've Been Looking For?

alicec

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@Sleeping Beauty from my experience, definitely start with the gut. As @Asklipia notes, start with good food, something like the Perfect Health Diet, then slowly add pre and probiotics as tolerated. After a long period of VLC paleo, just changing to the PHD has made a huge difference to me in a few months and I am starting to become much more tolerant of the pre and probiotics which caused me so much trouble in the beginning.

Regarding supplementation in general and methylation in particular, I have found some benefit from experimenting with these prior to the dietary change, though I note the reservations of @Vegas that the shutdown of these pathways may be protective and ramping them up artificially may be counterproductive. A crisis a couple of weeks ago made me realise that the dietary changes had induced a lot of metabolic changes which made my supplementation regimen untenable so I stopped everything while I tried to work out what was now helpful and what was not.

This in itself reinforces the notion of starting with the gut - supplement needs might be very different once changes start happening in the microbiota (and will probably continue to change, so be flexible!).

I haven't worked everything out yet but several things are obvious. My neurotransmitter balance has changed so that supplementation to boost acetylcholine (eg choline bitartrate and acetylcarnitine) is now counterproductive.

My need for digestive enzymes has almost disappeared, going from a very high dose (6 x Creon 40,000 pancreatic enzymes capsules per meal [the number refers to lipase units]) to maybe 1 per meal (could probably stop but after so many problems in the past haven't yet had the courage).

Methylation supplements need to be redefined. I definitely felt worse for stopping these so have been experimenting to find a new balance. My unquenchable need for methylfolate has moderated considerably, but even more interestingly, my response to carnitine has changed dramatically.

Previously L-carnitine fumarate did nothing for me but I did respond to Acetyl-carnitine. With the benefit of hindsight, I think the latter was purely the result of a boost to acetylcholine, rather than any change to mitochondrial function. Certainly my energy levels didn't really improve and OAT tests continued to show abnormalities in fatty acid metabolism characteristic of a lack of carnitine and the Kreb's cycle remained stuffed.

This time around I had to stop acetyl-carnitine so cautiously tried LCF again. Now I am very sensitive to it. I am hoping this means that intractable blockages in mitochondrial function might slowly be lifting.

When I get more uBiome results I'll report on changes in gut flora that have accompanied these events.

With best wishes
Alice
 
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My blessings extend to you too. As I am at present in full synchronicity mode, you may find yourself lucky that I was the first person to "like" you.:bow:
@Asklipia, I am a very lucky person, indeed, catching you fully synchronized and being included in your blessings. Not to mention your being the first person to "like" me (wait, why the " "?!?). Love your Vodka methylation protocol, btw.

Thanks also for bringig the Sanum thread to my attention! And thanks to @jepps for introducing us to the world of Sanum!

You mentioned the exercise from the pelvic pain book is difficult. Do you think it is doable for someone like me, who is mostly bedridden? Taking a shower is too much exercise for me these days...
 
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Sooo, obviously, my multiquoting requires some work. Let's see how this goes:

Sleeping Beauty I was hoping you were going to surprise us with a nice summary from these threads ;):D

Joking aside, welcome to PR!
Thanks, @Gondwanaland! Believe it or not, I was reading the threads on my phone and took screen shots of all the important stuff in order to be able to summarize the most important points. Unfortunately, I took like a thousand screen shots and think it would be easier to re-read the threads than to go through all the pictures... So don't hold your breath for a cliff notes version of these threads from me!

@Sleeping Beauty: not any of the people you tagged, but I have some experience with this.

I would definitely start with the gut first.

Hope that helps. Good luck! :)
Who would have thunk I would forget to mention you in my post, @whodathunkit? Thank you so much (even mucher) for your long and helpful reply! I hope other people whom I forgot to mention will not hold this against me and also share their experiences with me. There are just too many amazing people who participated in the discussions. My poor scrambled brain ('whooosh, sizzle, this is your brain on ME/CFS') has no chance of keeping up with everyone's greatness!


@Sleeping Beauty from my experience, definitely start with the gut. As @Asklipia notes, start with good food, something like the Perfect Health Diet, then slowly add pre and probiotics as tolerated. After a long period of VLC paleo, just changing to the PHD has made a huge difference to me in a few months and I am starting to become much more tolerant of the pre and probiotics which caused me so much trouble in the beginning.

Regarding supplementation in general and methylation in particular, I have found some benefit from experimenting with these prior to the dietary change, though I note the reservations of @Vegas that the shutdown of these pathways may be protective and ramping them up artificially may be counterproductive. A crisis a couple of weeks ago made me realise that the dietary changes had induced a lot of metabolic changes which made my supplementation regimen untenable so I stopped everything while I tried to work out what was now helpful and what was not.

With best wishes
Alice
Thank you, too, @alicec, for your reply! I had forgotten about @Vegas's point that our bodies might be protecting themselves by shutting down certain pathways, thereby making supplementation counterproductive. Sooo glad you brought that up again, thanks! [I would add lots of happy emojis here, but I first need to figure out how to do this on my phone.]

As far as my diet goes, I shook things up a lot about a month ago. From a diet rich in icecream, chocolate, and leafy green vegetables with little to no meat, I first gave up gluten and dairy. Instead of going Vegan, my first impulse, I decided to try out the Wahl's diet in an effort to give my mitochondria something to work with. The Wahl's diet has a lot in common with the PHD. The main differences would be that it excludes the safe starches, but includes legumes (if I remember this correctly). After reading about the PHD, I decided that it made a lot of sense from a microbiomic point of view, so I got the book and for the last week or so I have been trying to follow it. I am not including enough safe starches yet, I believe, but I find it impossible to eat such large quantities of food! The icecream and chocolate of yore had the advantage of not just being yummy, but also providing lots of calories without my having to eat huge quantities of them (which I find hard to do given that I spend 23+ hours in bed daily - and not in the fun kind of way). I try to eat lots of nuts now, but still have been losing weight since eating healthily, which, in my case, is not a good thing.

Thanks again, you guys are awesome!

To a healthier tomorrow, tomorrow,

SB
 

jepps

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After reading about the PHD, I decided that it made a lot of sense from a microbiomic point of view, so I got the book and for the last week or so I have been trying to follow it. I am not including enough safe starches yet, I believe, but I find it impossible to eat such large quantities of food! The icecream and chocolate of yore had the advantage of not just being yummy, but also providing lots of calories without my having to eat huge quantities of them (which I find hard to do given that I spend 23+ hours in bed daily - and not in the fun kind of way). I try to eat lots of nuts now, but still have been losing weight since eating healthily, which, in my case, is not a good thing.

Thanks again, you guys are awesome!

To a healthier tomorrow, tomorrow,

SB
@Sleeping Beauty do you eat enough fat? Maybe from ghee or from coconut oil? And the most important player for inflammation is daily chicken stock, as much as you can. This should you help to gain weight. Chicken stock has the bioavailable form of minerals and amino acids, that our gut needs for healing.
Hokkaido and chestnuts also counts for carbs. With rice, hokkaido (butternut also counts) and chestnuts you could increase your carb intake, if you wish.
I wish you good luck for your healing process!!!!:tulip::rocket:

Kind regards, jepps
 
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Asklipia

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You mentioned the exercise from the pelvic pain book is difficult. Do you think it is doable for someone like me, who is mostly bedridden? Taking a shower is too much exercise for me these days..
Difficult when you are in bad shape. Easy after that.
When I started doing it, I could barely walk. It does not require strength really, and is not raising the heart rate. I think you should benefit.
The trick is to do it EVERY DAY, even if you don't feel like it, just do a very simplified version if you feel knackered (each exercise only once for example). And to do a 40 day period without fail. This also trains the brain. If you miss one day, start a new 40 day period. This should stop you from stopping, if you see what I mean :)
For the squat, help yourself by holding on the side of an armchair or a sofa. To get up, you can push/pull with your arms.
EDIT : Rest flat on your back between exercises as much as you need to. Do not attempt at first to do one just after the other. The lymph is stuck badly and it is sluggish in the extreme. Give it time to proceed without the effect of gravity.
Good luck!!! :hug:
 
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Gingergrrl

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@whodathunkit, I've thought for a while we should have a medal for newcomers who actually go back and read the full thing.
@Sidereal My husband is determined to read this entire thread and is around page 50. Does he get the medal LOL :trophy: :star:?!!

I have skimmed parts of it which are of course way above my head. My husband thinks that I should try resistant starch (I believe potato starch in water?) and wants me to try "Prescript Assist" probiotics instead of the two probiotics that I am currently taking? Would this be a good plan to try? What amount of potato starch do you start with?

I will be having a formal SIBO test in June at OMI and we are wondering if my return of GI issues is related to leaky gut and my new histamine reactions. I am hoping if I fix the GI issues (which had been completely resolved in the past) that it might allow my immune system to fight the viruses instead. I never viewed GI as a big component for me (compared to cardiac and autonomic) but it may be more important than I realized?

I don't want to take this thread too off track and know that I am not a regular poster in it (so hoping it is welcoming to RS newbies!) Basically I just want feedback on the potato starch in water protocol and Prescript Assist Probiotic.

Thanks to all!
 

Sidereal

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@Sidereal My husband is determined to read this entire thread and is around page 50. Does he get the medal LOL :trophy: :star:?!!
Yes. :balloons:

I have skimmed parts of it which are of course way above my head. My husband thinks that I should try resistant starch (I believe potato starch in water?) and wants me to try "Prescript Assist" probiotics instead of the two probiotics that I am currently taking? Would this be a good plan to try? What amount of potato starch do you start with?

I will be having a formal SIBO test in June at OMI and we are wondering if my return of GI issues is related to leaky gut and my new histamine reactions. I am hoping if I fix the GI issues (which had been completely resolved in the past) that it might allow my immune system to fight the viruses instead. I never viewed GI as a big component for me (compared to cardiac and autonomic) but it may be more important than I realized?

I don't want to take this thread too off track and know that I am not a regular poster in it (so hoping it is welcoming to RS newbies!) Basically I just want feedback on the potato starch in water protocol and Prescript Assist Probiotic.

Thanks to all!
It's hard to say because this is so individual. Some people say that resistant starch can worsen SIBO and to start with different prebiotics if you have SIBO.

I don't know what probiotics you're currently taking but they're probably some dairy-derived lactobacillus nightmare so yes switching to Prescript Assist soil-based organisms is probably a good idea. Some here like @Asklipia and @adreno have also been trying Japanese Clostridium butyricum (easily obtainable on Amazon) so maybe they can chime in. I took it only twice so far but there was definitely some distal colon action going on. :lol:

Generally on this thread it is felt that taking probiotics (i.e. bacteria) is a less effective approach than taking prebiotics (i.e. food for bacteria).
 

Sasha

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I have skimmed parts of it which are of course way above my head. My husband thinks that I should try resistant starch (I believe potato starch in water?) and wants me to try "Prescript Assist" probiotics instead of the two probiotics that I am currently taking? Would this be a good plan to try? What amount of potato starch do you start with?

I will be having a formal SIBO test in June at OMI and we are wondering if my return of GI issues is related to leaky gut and my new histamine reactions. I am hoping if I fix the GI issues (which had been completely resolved in the past) that it might allow my immune system to fight the viruses instead. I never viewed GI as a big component for me (compared to cardiac and autonomic) but it may be more important than I realized?

I don't want to take this thread too off track and know that I am not a regular poster in it (so hoping it is welcoming to RS newbies!) Basically I just want feedback on the potato starch in water protocol and Prescript Assist Probiotic.

Thanks to all!
I was never aware of having any gut issues and started on potato starch (PS) in water some time ago and took it for three months. During that time my OI improved markedly but I started up with some other interventions at the same time and started to get much worse and had to stop everything and try one thing at a time to identify the culprit. I found what it was and restarted the PS about three months ago. Also, I started calcium carbonate supplementation and VSL3. Same improvement in the OI. But a month ago I had an oesophageal spasm out of nowhere and have had daily acid reflux since.

I did a lot of googling to see if the PS could have caused this and I think it's a possibility. I had always taken it with pysllium to get it distally in the gut but 'tatertot' and Norm Robillard, for instance, argue that if you have SIBO then you need to be avoiding fermentable starches (which is what RS is, by definition - you don't digest it, which makes if available for your bugs to ferment). The idea is that if your bugs are fermenting it, you're feeding the ones in the SI first and allowing them to proliferate - and the gas that they produce in that process increases the pressure inside the stomach, which causes the lower oesophageal sphincter to blow open and release acid into the oesophagus (heart burn/acid reflux).

In my case, the calcium carbonate (alkalises the stomach, which I didn't know, bad thing) and VSL3 were also candidates for my acid reflux, of course, not just the PS.

Anecdotally, some people seem to have claimed that PS has helped with their SIBO, I think (on those huge threads on Free the Animal) but my impression (possibly false) is that if you have SIBO, RS is not a good idea.

I've been wondering if I have histamine issues. I've successfully considerably reduced my migraines by reducing tyramine in my diet and so have accidentally reduced histamine as well. When I tried Prescript Assist, I had a cracking migraine every day for a week until I stopped it (I'd been OK at a lower dose). I don't know if the bugs in it are histamine producers - but then so many are, and maybe they should be. I don't know how to think about histamine-producing bugs. I also got migraines if I tried to up my dose of VSL3 when I was on it.

So, confusing picture from me. So hard to know what to do, for each of us!
 

adreno

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I don't know what probiotics you're currently taking but they're probably some dairy-derived lactobacillus nightmare so yes switching to Prescript Assist soil-based organisms is probably a good idea. Some here like @Asklipia and @adreno have also been trying Japanese Clostridium butyricum (easily obtainable on Amazon) so maybe they can chime in. I took it only twice so far but there was definitely some distal colon action going on.
Yes, by all means ditch any lactobacillus probiotics @Gingergrrl , those are just a nightmare. Pure bifido species are probably fine.

I believe I have seen great improvements with clostridium butyric (CB), though who can tell if it will last. In particular, it has helped greatly with OI, malaise, mood, brain fog and fatigue. I feel overall less sick and more like a normal person. They are without doubt the most effective probiotics I have tried, including PA.
 

Sasha

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I don't know what probiotics you're currently taking but they're probably some dairy-derived lactobacillus nightmare so yes switching to Prescript Assist soil-based organisms is probably a good idea. [...]
Generally on this thread it is felt that taking probiotics (i.e. bacteria) is a less effective approach than taking prebiotics (i.e. food for bacteria).
Surprisingly, my improved OI has persisted for a month since I stopped RS in case that was causing my reflux and I'm wondering if that's because three months on VSL3 was enough to recolonise my gut with the lactobacillus and bifidobacter that are in it (I had been tested and had had no lactobacillus and low bifidobacter). I haven't been taking any prebiotics at all since then (other than what is naturally in my diet).
 

Sidereal

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So, confusing picture from me. So hard to know what to do, for each of us!
So true @Sasha. I generally don't recommend this treatment to anyone unless they ask me point-blank like @Gingergrrl did because the reactions differ so much for different people. I would recommend reading the entire thread carefully to get a feel for the inflammatory reactions that almost certainly will happen if you take this stuff. The benefits can be significant, though.

To give you some idea about the link between gut dysbiosis, LPS and histamine - because I know right now you're struggling to eat anything @Gingergrrl without huge reactions - I was roughly where you are now in February 2014 when I started RS. Daily mast cell attacks after all foods and supplements, not to mention horrible reactions to fragrances (whooo invented perfumes and why? :devil: ) which would make it hard to breathe. I had to take Benadryl every day just to survive.

When I took my first dose of RS I got covered in histamine which, combined with the info I read here, made me realise that histamine excess in the body has almost nothing to do with the histamine content of food but the condition of your gut - dysbiosis and permeability/leakiness of the gut. Because my gut was so leaky the LPS was translocating everywhere causing huge flu-like reactions for the first few months of taking RS. I even got a temperature the first time I took it. But I figured, you know what, it's not normal to get histamine and the flu when you take some freakin' potato starch so I stubbornly persisted. After a few months on the starch, my pseudoallergies / hypersensitivities abated. I am left with only pollen + grass allergies but no weird reactions to food/meds/odours which used to be a nightmare. Yesterday I was exposed to a lot of nasty perfume and I was waiting for the choking but guess what, nothing happened.

OI also improved on the starch. I became able to cook my own food again. I am also able to shower normally again, standing up, whenever I want, instead of sitting down to wash myself once a week while feeling weak, faint and tachy.

I would also echo what @Sasha said about no overt GI issues. Back when I was sick but functional I always trended toward IBS-C whereas when I became bedridden I had perfect stools. Any GI related information I read on here I just automatically dismissed/ignored. What a mistake. I only understood what was going on after reading one of @Vegas early posts on this thread where he said that because a new (crappy) equilibrium establishes itself in the gut you may have no overt gut symptoms and still have horrible dysbiosis that's causing your illness.

@adreno - that's awesome news! :) How much are you taking?
 
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Sidereal

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Surprisingly, my improved OI has persisted for a month since I stopped RS in case that was causing my reflux and I'm wondering if that's because three months on VSL3 was enough to recolonise my gut with the lactobacillus and bifidobacter that are in it (I had been tested and had had no lactobacillus and low bifidobacter). I haven't been taking any prebiotics at all since then (other than what is naturally in my diet).
I don't know if VSL3 was able to recolonise your gut. It's possible. Judging from the test results people post online it seems rare that these probiotics actually cause permanent beneficial changes in the gut. Supplementing these bacteria directly is usually not enough to turn the tide of the bad conditions in there that lead to the destruction of these species in the first place.

RS however has caused permanent improvements in my OI. I take it maybe once a week or less these days and my OI has never returned to the horrible baseline it was at before RS.
 

Sasha

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I don't know if VSL3 was able to recolonise your gut. It's possible. Judging from the test results people post online it seems rare that these probiotics actually cause permanent beneficial changes in the gut. Supplementing these bacteria directly is usually not enough to turn the tide of the bad conditions in there that lead to the destruction of these species in the first place.

RS however has caused permanent improvements in my OI. I take it maybe once a week or less these days and my OI has never returned to the horrible baseline it was at before RS.
The nutritionist (the same one who prescribed the stomach-acid-countering calcium carbonate :aghhh:) prescribed VSL3 because she said it was the only one clinically shown to colonise the gut (she used to work for the NHS and they only use 'evidence based' stuff). She hadn't heard of soil-based probiotics. :(

I took her word for it but didn't read any studies.

Don't know what the hell is going on in my gut, though.

I'm glad you had such good effects from the PS. :)
 

Sidereal

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The nutritionist (the same one who prescribed the stomach-acid-countering calcium carbonate :aghhh:) prescribed VSL3 because she said it was the only one clinically shown to colonise the gut (she used to work for the NHS and they only use 'evidence based' stuff). She hadn't heard of soil-based probiotics. :(

I took her word for it but didn't read any studies.

Don't know what the hell is going on in my gut, though.

I'm glad you had such good effects from the PS. :)
Yep, I know VSL3 has studies showing benefits for inflammatory bowel disease but IBD is not the same thing as ME/CFS. ;)
 

Sasha

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Yep, I know VSL3 has studies showing benefits for inflammatory bowel disease but IBD is not the same thing as ME/CFS. ;)
Ah... but she was talking about colonisation, specifically - wouldn't that tend to be the same for everyone (as opposed to efficacy in treating different diseases?
 

Sasha

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BTW, I'm wondering whether to try to get professional help for my acid reflux since I'm getting nowhere with my GP (seems to be PPIs or the highway).

Has anyone here had experience of trying to get their gut issues sorted out via a functional medicine practitioner? Just wondering if it would be useful to deal with someone who has access to tests and experience with treating leaky guts or whatever.
 

Sidereal

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she used to work for the NHS and they only use 'evidence based' stuff
Evidence-based medicine, a dangerous pseudoscientific death cult in my opinion. It basically boils down to blind application of treatments in a black box style approach. Who cares what the disease mechanism is or how a treatment works, as long as the mean of the outcome measure can be shown to shift a few points up or down in some trial we'll apply the approach to all patients who come through the door. This is how CBT and GET have been shown to be "evidence based" too which is little consolation for those of us who have ME (not just "operationally defined fatigue") who get maimed by exercise.

Ah... but she was talking about colonisation, specifically - wouldn't that tend to be the same for everyone (as opposed to efficacy in treating different diseases?
It wouldn't necessarily be the same in every disease because the presence or absence of other species would not be the same in every disease. The complex interrelationships between the species in the ecosystem and the specific inflammatory conditions in the gut which are not the same in every disease would determine what can survive.
 

Sasha

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Evidence-based medicine, a dangerous pseudoscientific death cult in my opinion.
Intelligently applied, I think it's a great thing. Stupidly applied (CBT/GET) I agree, it's a disaster but I think that's a perversion of the original ethos.

It wouldn't necessarily be the same in every disease because the presence or absence of other species would not be the same in every disease. The complex interrelationships between the species in the ecosystem and the specific inflammatory conditions in the gut which are not the same in every disease would determine what can survive.
Good points!