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This was a difficult post to write as there is so much information about this subject to get your head around, so I have tried to keep it simple (honestly!) and have linked to websites so you can read more if you want to. I am not expert on this and am just trying to make sense of it myself so please look into it yourself rather than relying on this information when trying to solve your digestive problems. I am unsure about the validity of claims made by some websites and the products they promote (enzymes, probiotics and other supplements).

Firstly there are two things to define:

1. What is Leaky Gut Syndrome?

Leaky gut syndrome is not generally recognized by conventional physicians, but evidence is accumulating that it is a real condition that affects the lining of the intestines. The theory is that leaky gut syndrome (also called increased intestinal permeability), is the result of damage to the intestinal lining, making it less able to protect the internal environment as well as to filter needed nutrients and other biological substances. As a consequence, some bacteria and their toxins, incompletely digested proteins and fats, and waste not normally absorbed may “leak” out of the intestines into the blood stream. This triggers an autoimmune reaction, which can lead to gastrointestinal problems such as abdominal bloating, excessive gas and cramps, fatigue, food sensitivities, joint pain, skin rashes, and autoimmunity. The cause of this syndrome may be chronic inflammation, food sensitivity, damage from taking large amounts of nonsteroidal anti-inflammatory drugs (NSAIDS), cytotoxic drugs and radiation or certain antibiotics, excessive alcohol consumption, or compromised immunity. http://www.drweil.com/drw/u/QAA361058/what-is-leaky-gut.html

This is a really good description of how a leaky gut can affect our health and the processes involved as well as some information about what to do about it.

Interestingly it suggests going on an elimination diet for a few weeks to allow things to calm down. I have done this and yes, my symptoms have calmed down, but I have not so far managed to move on to the next stage of reintroducing foods or improving my digestion, despite many attempts. I have been on what is basically an elimination diet for two years! I have put this down to my autonomic nervous system and it’s effects on the gut (it affects the spasms/motility) and is also responsible for my POTS symptoms. It may be that there is more to it and although I did take Kefir for a year (a kind of probiotic) I have not really focussed on these factors recently.

2. What is Gut Dysbiosis?

A frequent disorder (in ME/CFS) is dysbiosis, i.e. the overgrowth of pathogenic bacteria in the intestine… Chronic inflammation of the gut mucosa, resulting from dysbiosis, can lead to the development of leaky gut syndrome.

This quote is from the website  of the company providing the test that I did almost two years ago to see if I had Gut Dysbiosis. I had a moderate positive result.

On Dr Myhill’s site she explains that a positive test demonstrates not enough good bacteria and too much of a bad one:

Prevotella (bacteroides in the upper gut). These ferment to produce hydrogen sulphide. Hydrogen sulphide inhibits mitochondrial function directly. So a positive hydrogen sulphide urine test shows there is a severe gut dysbiosis with overgrowth of prevotella secondary to undergrowth of the goodies!

So, now you understand the basics, I am going to just focus on my personal issues and my plan to deal with this problem (still under construction!). So firstly, based on Dr Myhill’s information what am I doing right and wrong in terms of healing my leaky gut and its bad bacteria?

Things I am doing well:

  • Diet: While not Stone Age I have not been eating gluten grains or processed foods.
  • Diet: I eat lots of nuts, seeds and vegetables.
  • Diet:  I also eat fairly small meals and snack quite often as my blood sugar does not seem too stable (possibly due to the high GI foods I can digest).
  • Diet: I do eat spicy foods which I read is good for killing bad bugs – good news!
  • I have started to take digestive enzymes. These can help me to reintroduce foods that I have struggled to digest previously, and which will hopefully reduce the amount of undigested proteins leaking into my blood stream and therefore reduce bodily inflammation and immune system stress. They can also help to heal the gut wall, they say. See: www.enzymestuff.com
  • I take vitamin B12 which is good for stomach acid production (I think I read that somewhere, though maybe not on Dr Myhill’s site!)
  • I try to chew well.

 

Things that I am not doing well:

  • I take the contraceptive pill which suppresses the immune system and enourages yeast overgrowth
  • I am not on the Stone Age Diet (As a vegetarian I cannot really follow this diet but am not doing everything wrong, see above!). What I have not done brilliantly is that I have struggled to digest a lot of fibrous vegetables and carbohydrates, so my diet has been good for controlling IBS symptoms but been a bit too high GI. I don’t think this is good for weight management, feeling full/energy and I think possibly not great in terms of controlling bad bacteria in the gut (as good bacteria like/need fibre to feed off and break down in colon? I am a little unclear on this).
  • Also I do eat things with sugar in, though not huge amounts compared to many people. I don’t actually add it to anything (except honey – yummy!).
  • I need to take more vitamin C which can kill off bad bugs

 

What else can I do heal my Leaky Gut and improve my digestion?

Probiotics: Dr Myhill does not seem very convinced about taking probiotics, and also mentions not to eat sugar when taking Kefir (which she does like, it is a kind of probiotic that you make/grow yourself). (Did I take it for a year for nothing then as I ate sugar?).

This site has lots of information on probiotics.

I have bought two different probiotics and my plan is to have two weeks on a sugar-free diet and take them then for maximum effect (as less sugars for the Candida/yeast to feed on at the same time). I thought if I do it properly I should get some symptoms of die-off (feel terrible!) if I have yeast overgrowth so I should then know if it is an issue I have to take seriously longer term. I have been talking to other people with very bad Candida issues and I don’t think it is a big issue for me as I don’t have any obvious yeast issues. I think perhaps other types of bad bacteria are more the issue, but I will see what the sugar-free diet is like. I am unclear if a sugar-free diet is good for getting rid of other bad bacteria, not just yeast overgrowth. If so it could be a bit confusing.

L-Glutamine – I have bought some of this and have started to take it, but had diarrhea so have stopped for now but will try again.

Systemic enzymes: As well as enzymes to aid digestion, I have also started to take a high protease enzyme between meals as this is supposed to cleanse the blood of toxins that the liver has struggled with, and also reduce inflammation and kill bad bacteria. It seems to be making my stomach ache a bit more. I read to stop for a few days if this is the case then restart, which I have done, but it is still sore. It is often sore though, so perhaps I am misjudging it! There is lots of information on the Enzyme Stuff website as well as the websites of retailers.

Ginger tea is meant to be good for all things tummy – I am grating fresh ginger and making tea with it.

Hypochlorhydria: Stomach acid breaks down food into digestible form, if you don’t have enough then digestion will be very much impaired. It also controls bad bacteria etc. If you think you have low stomach acid then drinking cold water just before or after a meal is bad as it inhibits acid production. More on Hypochlorhydria here and here (the second link is a site about bad breath but has a good summary of the signs, issues and possible solutions to low stomach acid). Both sites mention Betaine HCL, which is an acid supplement. I have decided not to try this as it seems quite risky (being strong acid!) and would talk to my GP before taking it.

I am also trying not to drink too close to eating. I suspect my stomach acid is a bit on the low side and also I don’t want to dilute the action of the enzymes I am taking so it is best to let the food digest before flooding my stomach!  (I think common sense needs to be applied with this, especially for someone like me who needs to consume a lot of fluids for other health reasons, but it might be worth experimenting with if digestion is bad). There is some info here and here (see end of first paragraph).

There are various herbal anti-candida, anti-fungal, anti-viral type things you can take but they are either really expensive or seem to have some side effects/controversy so I am holding off on them for now, at least until I am convinced I have candida issues (I am not convinced yet, despite so many sources linking leaky gut with it!).

Additional websites to look at:

http://mdheal.org/leakygut.htm This is an interesting article, though not easy to read or understand in parts. The list of “Trophic Therapies” about a third of the way down in interesting. It also lists tests that are available to help identify specific issues for the individual

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(This is one of many posts about my IBS, to read others, just click on the “IBS” link in the tag cloud on the left…)

A friend gave me some probiotics a few weeks ago called Align. She went to great expense buying it from the US as it has been said to be good for people with ME/CFS. She tried them and they sadly did not agree with her so very kindly passed them on to me to try. I have taken them all, i think it was for 5 weeks. They did not upset me at all or make any difference that i could see with my IBS, which has been pretty stable as long as i stick to my safe foods. I did not take my kefir for most of the time and this change also had little noticeable effect. I did start taking Kefir for the last week or so when i was ill with a virus that made me sick and have an upset stomach as i thought the more good bacteria the better in that situation!

I do think that taking kefir/probiotics is a good thing for me and i will continue to do it, as i hear such good things about them for the immune system, detoxing (the neurotoxic metabolite test which came up positive for me is based on theories of leaky gut type problems in pwME and probiotics are supposed to help, though i have not heard any follow up to the test in terms of published research/treatment advice), and of course IBS symptoms. I just wish i could see evidence for myself!

My IBS has settled down overall, but this is only because i no longer eat gluten, not much dairy, not much resistant starch or very fibrous foods, little fruit and raw salads, etc etc. I am unsure how much help the probiotics have been, though my flare ups are less dramatic now than at the peak of my problems and when i first started the dietary changes so maybe they have helped a bit.

I have been a little skeptical of the resistant starch idea, which my POTS specialist told me about (she also deals with ME patient issues in general) but it really does seem to be the case for me that i cannot digest them well (i explained all about resistant starches here). I can now eat white rice that has been reheated (i have not tried cold foods that have been cooked as this is meant to be worse than when they are warmed up again) but potato seems to be terrible (it is meant to be worse than rice). A few chips from a pub can cause trouble (mainly a lot of discomfort and wind) as they are partly cooked, cooled then reheated/cooked again later. Added to this potato problem is “modified starch” and “potato starch” which are in a LOT of foods and seemingly all gluten free bread/cake/biscuit alternatives. I tested out some gluten free bread recently as the potato flour/starch was quite far down the list and there was no maize flour in it (has the same effect) just to try to widen my diet and it caused all sorts of torture and a couple of nights of quite bad pain through my whole stomach and lower back. I had forgotten how painful my stomach used to be on a regular basis! Potatoes when freshly cooked are no problem at all and are a regular part of my diet but the starches and their digestibility apparently change during the cooling process and when reheated not all of them change back, so to speak.

Other things that are high in resistant starches apparently are beans, like kidney beans etc. I am a vegetarian and I really miss beans. I want some baked beans, preferably on toast, but with mashed potato and a bit of grated cheese would do… but after this week’s experiment i am feeling a bit more cautious. (I have reacted badly to peas and chick peas, though in very small amounts hot chick peas are usually ok. I have not tried other beans/pulses). The other night i felt really sick and my bowel was cramping badly after i had some of the bread with marmite (which was so nice but not worth feeling that bad). I was unsure if it was all a reaction to the bread (and the chips i had the evening before – yes i have been throwing caution to the wind – literally) or if it was also that my system is still not too strong after being so sick ten days ago. I am not usually queasy even when my IBS is bad and am rarely sick, nevertheless it was a definite reaction and it was the second time i ate it, bad reaction both times.

I really want to try to eat gluten and wheat products again as not eating them is so inconvenient more than anything else. I do crave and miss certain things, but mostly i just want to be able to eat out at the pub or a restaurant occasionally, or buy a sandwich… When you rarely go out and there is not much i can go out to “do”, sitting in a quiet place for some food for a short while is one thing that in theory i can do sometimes and something i can do with my partner for a treat but it has become nearly impossible for reasons other than energy and that is even more annoying! I am not sure when i will be able to test out eating gluten properly. I need to be feeling better than this as one reaction to it i have noticed but not tested consistently is that i feel more like a zombie after eating wheat. Hard to test that when i feel so bad all the time anyway. I think i do feel generally better for cutting out the stodgy wheaty foods, many of which (pastry, solid white bread things like pizza base) have long disagreed with me, but it would be nice to have the option sometimes!

I did have a theory that after a few weeks/months of calmer digestion that my system would heal and i would be able to reintroduce more variety of foods and all would largely be well, but after over 8 months (? i have not counted exactly) i do not feel much further along with that process. I have discovered i can eat certain vegetables with no obvious problems, i can reheat white rice, i can handle some spicy foods too, and nuts and seeds though raw and fibrous seem largely ok. I also can eat brown rice based pasta which is nice. All this is great but still quite limited! I need to test out some more but whenever i do it seems to cause a flare up and it never seems like a good time for that when i am struggling with so many other symptoms and am generally so low in energy.

It has taken me a long time to see patterns and believe in cause and effect of eating certain things, like the potato problem, as it is such a complicated issue. Often i eat those risky things when out of the house, then i am unsure if it is the potato (for example) causing the problem or if the exertion of going out has meant that my body did not have the energy/blood flow to digest properly and if i had eaten the same thing quietly at home it might have been ok… see what i mean?

Anyway, i am grateful i can keep it relatively under control day to day even if that means missing out on a lot of food fun and freedom!

my result...

my result...

Well after three minutes or so it looked like this – not actually a colour on the chart! it had changed colour a lot from yellow/orange to more like a pale version of the very dark positive colour (which, after a few more minutes, it turned into but they are very clear that only the result at 3 minutes counts!) so i think it is a “moderate positive”.
This is what is says on the leaflet:
The Neurotoxic Metabolite Test aims at detecting the presence of abnormal metabolites in the urine. These metabolites are related to the production of hydrogen sulfide (H2S). Although H2S is naturally present in the body, and plays some normal physiological functions, an excess production can be very detrimental. Overproduction of H2S may result from metabolic dysfunctions, but also from the overgrowth of certain bacteria in the gut (alteration of the normal intestinal flora = gut dysbiosis). Our preliminary results indicate that a strong proportion of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) patients present such dysbiosis, and test positive with the NMT test; but positivity may be associated with other conditions, related to intestinal dysfunction.
So it is not really a test for ME as the papers and hype suggested then, is it? BUT, if it leads to treatment of some aspect of our ill-health, it can only be a good thing and may improve quality of life… if it turns out it is the complete answer for some people, all the better.

Here is the article: new urine test for ME in the Telegraph  http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html 

here is what the ME Association say about it: http://www.meassociation.org.uk/content/view/875/161/ 

I wonder if my diet and probiotics/Kefir regime have been helping my gut problems and perhaps have affected the result. I did stop taking the Kefir and probiotics a couple of weeks ago, although i continued to eat soya yogurts that have “yogurt cultures” in them as i thought they probably are not that potent and also i didn’t know how long it would take for the test to come and there are some things i can’t live without for long on my limited diet! My digestive “issues” have been so much improved over the last few weeks/months since i changed my diet – i wonder what the result would have been a few months ago!

All in all i am pleased that i do not seem to have a  “strong positive” result as no-one wants their body to be toxic do they!? I am going to keep up with the probiotics and hope that that can help. I don’t really see the point in going to my doctor about it – i know they won’t be able to do anything as the research is not even tested/published/recognised yet. I think i might have if it was a very positive result, just to see what they said. I may mention it to the POTS specialist when i see her next week – if i remember – as she is at least interested in ME issues and listens…

I am also going to look up “metabolic dysfunctions” which the test company also say can lead to a positive test result… i don’t know exactly what this means!

Photo677I bought some Kefir “grains” a while ago (see them pictured above). With them you can make a kind of cultured milk which is full of healthy bacteria (like probiotics) and is meant to be very good for you. As i have been having a lot of trouble with my digestive system i thought i would give it a go when someone else with ME told me about it…

I would say it has been a bit of a bumpy ride, but that i am gradually finding a good relationship with my Kefir (well it is a living thing!).

The first problem is that it was quite cold weather when i first got my Kefir grains, and they were small. They need a warm place in the house to be able to “grow” in the milk (it takes a lot longer at cooler temps). An airing cupboard is recommended – we don’t have one. I think the Kefir was not fully active when it first arrived and that with the cool temps meant that nothing much seemed to happen.

Secondly i don’t actually like milk. Not the cow variety anyway. Kefir lives in dairy milk but i don’t like the taste and have long consumed soya milk instead. I eat cheese and used to eat yogurts (have not reintroduced them yet since my strict IBS diet as soya yogurts are so nice!) but hate warm yogurty smells. Milk Kefir is slightly soured/cultured milk and so not to my taste. I have been using soya milk to make it but it does involve keeping it fed in dairy milk every other batch to allow the grains to grow/stay alive as they cannot thrive in soya milk and would eventually die if only used with it. So i have been throwing a lot of cultured cow’s milk away which i don’t really like to do but even when holding my nose i cannot force it down! (I did try).

Good news is that with all that cow’s milk the grains have grown in size and are now happily producing me soya milk kefir on a regular basis. This tastes fine usually (not a lot different to soya milk but it goes thicker a bit like a soya yogurt or pudding – a bit like slime but it slides down!). I do have to be careful not to leave it too long as it can go fizzy which makes it less palatable, although from what i have read it is still fine to consume. The time this takes depends on the temperature, the size of the grain and the amount of milk so it is hard to judge.

I don’t know if it is having any positive effects on me; my IBS symptoms have certainly improved with my dietary changes and i have also been taking other probiotics so who knows. If what i have read online is to be believed Kefir is very good for us so i will carry on for a while and see what happens.

It is a bit of a hassle and i do end up throwing a lot away (both the cow’s milk and any that gets too fizzy etc) but i am also consuming quite a lot with no obvious negative effects. It does create some washing up too but i don’t usually have to do my own so that’s ok!

I am not sure i would recommend Kefir yet, as i feel i have a bit more experimentation to do to get reliably nice Kefir – i feel i must be missing something as i only like the flavour if it is not too fermented – as soon as it starts to separate (the soya milk – i have not let the dairy kefir get that far!) it tastes horrible to me… but i am carrying on for a while longer to see.

When i read about the new urine test for ME in the article in the Telegraph  and saw it partly seems to be related to gut bacteria & probiotics http://www.telegraph.co.uk/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html i thought well at least that backs up that Kefir is worth a try. I do not know if this is the “key” to ME as they are claiming, but it may be a factor – we shall see what further research and trials bring… here is what the ME Association say about it: http://www.meassociation.org.uk/content/view/875/161/ 

I have emailed the company to ask for a test, but have not heard back from them (expect they have run out by now!). I thought it may be interesting to know if those processes/problems were part of my illness and to “test the test” and see if it mirrors the severity of illness i think i have, with the result. Will let you know if i ever get my hands on one.

Kefir Info:

This website has A LOT of Kefir info: http://users.chariot.net.au/~dna/kefir-faq.html#soymilk and is a little eccentric too! (kefir in space?)

http://crystalcultures.co.uk/live_cultures.htm describes Kefir:

Milk Kefir

Kefir is such a balanced and nourishing food that Regular use of Kefir can help relieve Most intestinal disorders, Easily digested and It cleanses the intestines Reduce flatulence and create a healthier digestive system it Provides beneficial bacteria and yeast Vitamins and minerals and complete proteins It contributes to a healthy immune system.
Kefir can also help eliminate unhealthy food cravings by making the body more nourished and balanced. Its excellent nutritional content offers healing and health-maintenance benefits to people in every type of condition.

Lactobacillus Caucasus, Leuconostoc, Acetobacter Streptococcus species.
Beneficial yeasts :
Saccharomyces Kefir Torula Kefir
These eliminate destructive pathogenic yeasts in the body by forming a Controlling Agent That Toughens the intestines. The body Then becomes Better at resisting such pathogens as E. coli Salmonella and intestinal parasites. Kefir’s active yeast and bacteria provide more nutritive value than yogurt by digesting some the foods that you eat and by keeping the colon environment clean and healthy. Its cleansing effect on the whole body helps to establish a balanced inner ecosystem for optimum health and longevity. Because the curd size of Kefir is smaller than yogurt, it is also easier to digest, which makes it a particularly excellent, nutritious food for babies, invalids and the elderly, as well as a remedy for digestive disorders.

ME/CFS Awareness

ME/CFS Awareness

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