You are currently browsing the tag archive for the ‘digestion’ tag.
I have just finished ten days on a sugar-free diet.
I originally started the diet to see if I would experience any obvious “die-off” symptoms, which would indicate that I had an overgrowth of Candida Albicans in my gut. As I expect my body is not great at detoxifying itself, if I have a candida overgrowth the death of the yeast cells (no longer fed on the sugars I usually consume) would pollute my body while it struggled to deal with them and make me feel ill. So that was the theory. I also took two different probiotics, not specifically to combat the candida, but to combat the bad bacteria in general.
The week did not really see me change my diet radically. I cut out plain and flavoured soya yogurt and (chocolate flavoured – sob!) soya desserts. These soya products were a daily staple in my diet. Even the plain one has a bit of sugar so out it went. I also switched from sweetened soya milk to unsweetened (which did not make my morning gluten-free porridge the highlight of my day, as it was previously). These were the most difficult things. Also quite tough was no honey on my rice cakes and no milk chocolate covered rice cakes either. Also no crystallised ginger and no pears (the only fruit I eat regularly, again due to digestive issues). There are also other things that you should avoid on the anti-candida diet, so I tried to do that, although I got quite annoyed at the varying opinions about what was ok!
Due to my already restricted diet the things that replaced these foods were largely nuts and seeds. I (well, my partner) made coconut and almond macaroon-type things with Stevia (a natural, calorie-free sweetener), and just slapped lots of almond butter on rice cakes to finish my meals instead of my sweet fix. I also nibbled on nuts and seeds. All this is good, except I think it left the easy and not so easy to digest foods out of balance and my stomach has not been overly happy. It has not been awful, and despite a bit of over-activity my wind levels have been lower than usual. Whether that is due to the probiotics, or less soya products, or less sugar itself I have yet to discover. As this is a major source of discomfort and distress to me at times I am happy that something has improved it.
The week started when I had just had a busy weekend so I was expecting to feel not so great for a few days. As the week went on I felt worse than expected as I did not seem to be recovering and wondered if I did indeed have a candida issue, but as time passed I just could not see that I would ever really know what was going on and felt that my diet was just too limited and my stomach problems were getting me down. I had a lot of pain in the week (not trapped wind though!) and my stomach felt very sore. I had spoken to a couple of people online who have definite candida issues and their experiences were so different from mine. Despite the fact that I think I have Leaky Gut Syndrome or Gut Dysbiosis and everything about these conditions talks about candida overgrowth, I am not convinced it is a big issue for me. I do think I have issues of other bad bacteria (hence the wind issues and the smell is indicative of ill-health, shall we say).
I was originally going to do the diet for longer but have decided to continue with a slightly more moderate approach and include fruit, with occasional honey and even a bite of dark chocolate now and then! I am continuing to research types of sugar and sweetener and see if I can keep refined sugar to a minimum. I also want to keep working to make my diet lower GI (Glycemic Index) as I think this is an area where my current eating “habits” let me down and are bad for encouraging bad bacteria. I say habits, but really they have been necessity, not choice or habit; but still I want to see if I can do better. I have bought two new enzymes, one is Gastro by Enzymedica and I am hoping it will help me to digest things that are higher in fibre and really open up my diet (beans and peas, please!). The other is for gluten/dairy digestion. I have not tried it out yet as gluten is not allowed on the anti-candida diet, but I would really like to be able to eat some gluten, especially whole grain wheat and rye on occasion. I also hope that these enzymes will help me introduce oats more successfully as these are meant to be very good for gut health. I think I just need to start gently and see if the enzymes help and if I can get used to these more challenging foods over time.
The other issue this diet has exposed is the potential dangers of eating too much soya. I don’t not know how real these issues are but you can read a bit here: http://www.livestrong.com/article/371222-what-are-the-dangers-of-too-much-soy/ and a quite thorough article here http://www.holistic-wellness-basics.com/soy-foods.html. (There are probably better sources of info, I just had a quick google – also wordpress is not letting me do linking properly so sorry about the mess). I had read things about this before but had not really taken it in (or wanted to, as I feel I have little choice over my protein sources as a vegetarian) but there is quite a lot of evidence that it is not so great. I cannot radically change my diet overnight but I aim to find alternatives to some soya products as I am eating a lot. I can drink rice-based milk and use that for my breakfast, but I don’t think it is low GI or very nutritious. There are various nut and seed-based milks but they are really very expensive. I have seen recipes for making your own almond and other milks, which doesn’t look really hard but I would need help with that and it’s one more thing to ask for help with from my very busy partner. If you bought the nuts in bulk it might be more cost-effective though than buying ready-made.
I tried goat yogurt yesterday (and bravely had more today!) as it is meant to be the most digestible dairy source and I find that cow’s milk and yogurt upsets me. The taste was just too strong for me and although I will finish the tub I have (with stevia sprinkled in it was a bit better), I don’t think I could get used to it even if my stomach allows it. There is a brand called Lacto-free which make yogurt without lactose, so I am going to try them and see how that goes too.
One great thing about the sugar-free time was that I was not craving sugar in particular, only missing some favourite foods and finding it hard to find alternatives that my digestive system would agree with. Linked to this, I was not actually craving food in the same way as I usually do. Hunger felt less urgent and I was less bothered about snacking an hour or two after eating, so I think my blood sugar was much more stable. That has to be a good thing for the energy-challenged. I also really enjoy the tea made from grated fresh ginger so I will continue to drink that. I would like to preserve the good things from this experiment, even if I still don’t really have an answer about Candida…
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.
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
This is a quick post, not the one on leaky gut syndrome that I promised you! That is not finished yet. This is just to show how ridiculous the lives of chronically ill people can be! It is no wonder I get so little done in a day and am mentally exhausted! This stuff takes a lot of concentration…
I have started taking digestive enzymes recently as described in my previous post. I have added a high protease (systemic) enzyme to take between meals (to allegedly reduce bodily inflammation and pain among other things). I have also started taking L-Glutamine (though I suspect it has caused diarrhea so I have paused for now to test that, but let’s assume I am taking it. I also read that drinking fluids should be avoided so as not to dilute the enzymes in their very important work, and that if you have low stomach acid the dilution is not good (I don’t know if this applies to me but it could and seems likely) so I should not drink for an hour before meals or two hours afterwards. The protease enzyme is the same rules, but only half an hour before meals is ok. I also take an anti-spasmodic and other medications not related to my digestive issues. I also have in the fridge two probiotics which I plan to start taking soon. I generally need to drink about 4 litres of fluids per day (that’s up to 4x what people usually drink unless it’s hot weather) to help with POTS symptoms.
So let’s see what a day looks like if I do this properly:
8.30am wake up and take my usual medications with water (most of my glasses of water and cups of tea are 1/3 litre).
9am Get up and have a cup of tea. Take vitamins including zinc (good for digestive/gut health). I really should take more vitamin C too – note to self – it apparently helps kill bad bugs in the gut.
Also put Alpha Stim electrodes on my upper back as I do every day (my pain relief machine).
9.30am take antispasmodic and L-Glutamine
9.45 take digestive enzyme (as it is a veggie capsule I read it needs time to dissolve so to take it a bit before eating, but other places say to take at the same time as food, so I am confused about this one. Let’s say 15 mins is ok for now.
10am take probiotic (type one) and eat breakfast
Also move electrodes on Alpha Stim to anywhere else that hurts or just to another position for upper back/shoulders.
11am change setting on Alpha Stim to CES and put earclips on
12 midday take systemic enzyme and wait half an hour for it to get into my system (think this way round makes sense or I would drink then have to wait an hour?)
Alpha Stim done.
12.30 take usual medications and push fluids for half an hour, perhaps 1 litre.
1pm stop drinking and wait an hour before food
1.30 take antispasmodic and L-Glutamine
1.45 take digestive enzyme assuming it takes time to dissolve
2 – 2.30pm take probiotic (type one) and eat lunch
Go to bed and rest/nap
4.30 wake up and take systemic enzyme
5-5.30pm take usual medications and drink fluids – 1 litre
6pm take antispasmodic and L-Glutamine
6.15 take digestive enzyme
6.30-7pm take probiotic (type one) and eat
9pm drink – not much as getting late and don’t want to be up all night – 1/3 litre
10pm – take usual medications and probiotic (type two). Make way to bed.
So I have only managed to fit in 3 litres of fluids, plus a bit with tablets. I could take a jug and drink more before getting up. This regime also prevents me eating little and often as I prefer and forces me to make sure I have eaten enough in one sitting to last me 4 1/2 hours. This goes against advice for managing IBS and POTS symptoms. I also really like to finish a meal with a cup of tea, but I have known for a long time this is not meant to be good if you have digestive issues.
I have tried the systemic enzyme for a few days and that was fine although my stomach seemed to be getting more sore each morning so I am resting it before starting again as is advised. I am unsure about the L-Glutamine but will try it again in a few days. My plan is to do this properly in a couple of weeks and go sugar-free for that time to see if I get any symptoms of die-off to test for a yeast overgrowth. If I feel fine (normal for me!) than it suggests that yeast is not a big issue for me. The more I read about Leaky Gut Syndrome I suspect it may be an issue, despite being quite skeptical, but I think not too extreme for me. I hope so anyway. Even if I cut out all sugars I will still have to eat the diet that I can currently digest which is not very low GI so there will be sugars present (rice/potato) but it will be reduced and that should trigger some reaction. I think taking the probiotics at this time will maximise their efficacy as the bad bugs will be dying anyway – ha ha evil laugh.
Someone had generously given me some Stevia to use during my sugar-free fortnight. My plan is to make some chocolate biscotti (I have found a recipe) so that I can end meals with something sweet and also sweeten my breakfast as I will have to switch to unsweetened soya milk (yuk!).
Sorry for the lack of links in this post – I really have no energy/time for it. Please leave a comment if anything is unclear – my next post on Leaky Gut Syndrome (coming in a week or two) should clarify it all anyway!
*I do not advise anyone to undertake this strange regmen, I know not how useful it will be, only using myself as a guinea pig, as usual…
Recently a friend of mine started asking around if anyone had tried taking digestive enzymes for their IBS. The one she had come across was specifically for helping to digest gluten. I had no idea that this kind of product was available and started to have a look into it.
I knew that some people took Lactase for dairy intolerance but despite the fact that I don’t tolerate dairy products very well it has never been something I have really missed so I have not tried it (I can eat a bit of cheese, so I am happy). I also have heard of a product that you can get in the US to help digestion of beans, which I assume is also an enzyme product. The promise of help with gluten was a revelation! (The products do not seem to help much with Coeliac Disease, only gluten intolerance, though research is being done to develop enzyme treatments in future as far as I can gather – I have not done a lot of reading on this but just to be clear gluten intolerance is not at all the same as Coeliac Disease).
I found this website which has a lot of useful information on it, which I have not yet read much of, called Enzyme Stuff. I read on there that I should choose a product that has DPP-IV Activity (whatever that is!). The one I am trying has per capsule a 300mg blend of:
Dipeptidyl Peptidase IV (DPP-IV) SEB-Pro GR (trademark symbol) (Protease I, Protease II, Protease III, Protease IV, Protease V), Amylase I, Amylase II, Glucoamylase, Cellulase, HemiSEB (Hemicellulase), Alpha-Galactosidase, Xylanase), Lactase and Lipase.
The capsules are vegetarian which is nice.
It “supports the digestion of protein in gluten-containing cereal grains including wheat as well as casein-containing milk products and other high protein foods”.
As it has so many enzymes I am planning on testing it on a variety of foods that I struggle to digest, not just gluten and dairy products.
For the last 2-3 years I have not eaten or have rarely eaten (and with consequences!): Gluten containing grains, any other grains except rice and quinoa (which is technically a fruit they say), any fruit except peeled pears and avocados, any potato that is not freshly cooked and still hot, beans and pulses, certain tougher or fibrous or cruciferous vegetables, vegetarian protein products except tofu, eggs, dairy products except small amounts of cheese and chocolate (of course), salads… can’t think what else! I am vegetarian so I already do not eat meat and fish, so you can see how limited my diet is. I am lucky that nuts and seeds have been fine.
So far this is what I have done:
Firstly, I took a capsule every meal for nearly three days just to see what effect it would have on me while I continued to eat my usual “safe” diet. I did not want to be confused by any reaction to the tablets themselves, though this was unlikely as I chose these ones in particular as they don’t have any extra ingredients that might cause me trouble (some products actually contain gluten and other problematic things as well as the enzymes, which seems strange, though perhaps demonstrates product confidence!). Result: things were not perfect either before I started to take the enzymes or during those three days, but there was no real change.
On day 3 I had a tortilla wrap (soft white bread) with fillings that I would usually eat with rice and I knew were safe. Result: No major problem, I did have increased wind and activity especially the following evening and it stopped me sleeping as well as usual, especially as my bladder was more sensitive and there was a bit more discomfort than usual but not too painful. No constipation or diarrhea, nor did I feel ill in myself which is a common result for me of eating something strange.
On day 6 I ate an egg! This is a big deal for me as egg yolk has long been as issue for me. As the enzymes mention high protein meals, I thought it was worth a try. Result: again, some reaction but nothing unbearable. Much the same as above.
I waited a bit after that to check for constipation as eggs are bad for that, and also as had visitors I held off trying anything else in case of anti-social bodily behaviour, so –
Day 10 I went to a pub and had a cheese baguette with chips! Chips eaten out are a big problem for me as potato starches become indigestible (and cause trouble to me at least) when they have cooled, so anything like pub chips that are cooked in two stages are not good. The following day (gaining in confidence) I ate a cheese sandwich made from lovely granary bread with mayo and a little bit of red onion and lettuce. That was delicious! Result: That was three days ago and there has been no real issues for the increased risky foods all in one go, or for having them two days in a row!
It is early days and I need to do a lot more experimentation and also decide what changes to bowel habit I can live with and what is too much. There have been changes and I would not like them to be constant, or to be worse (if I ate normally it would potentially be much worse as most people eat gluten and other foods I am very sensitive to, at every meal). However I am really happy with how these first experiments have gone and especially that I do not feel much worse in myself. I am allowing for a period of readjustment to a change in diet as I have not eaten these foods for so long. I am still taking my anti-spasmodic tablets which I think are helping, but I know from trying a few different foods while just taking them that adding the enzymes has really made a difference as I was still having fairly marked reactions before I started to take them. I know it may seem like I am being over-cautious but I really have had very strong reactions to so many foods and have tried again and again to reintroduce foods back into my diet with no luck. This really has been so much better than I expected and I am looking forward to trying lots of different things and seeing where the limits lie. I doubt this will be a complete solution to my problems but I am really hopeful from these initial tests that it could be quite life-changing.
I suspect that I have a leaky gut and that the reason I often feel ill when my IBS flares up is that I am actually being poisoned as waste products “leak” back into my blood stream rather than being broken down as they should be. If enzyme supplements can help break these products down then this would be a big bonus for me. I have not felt this poisoned feeling at all! I might do another blog post on leaky gut issues as it is quite complex and I really should read more about it and see if there is anything else I can do to help myself improve/heal. I wonder if I should take a probiotic as well, I know it is recommended. I have taken them sporadically before. I also know that zinc is recommended and I do take a zinc supplement already.
I will read more about it all, and also perhaps try a different product next time to compare, as I have seen products listed for different issues and I need to research if any would be a better fit for my problems. If I can eat a more varied diet (and digest and get all the goodness out of what I eat) this can only be good for my health and also will allow me to go out to eat sometimes and even stay overnight somewhere without having to take my own food with me! This will mean a great deal to me and open up possibilities for occasional fun and sharing more things with my partner and friends. It will also help my partner if I can eat more convenience food occasionally as all my food has had to be cooked fresh (there are a few things I can eat as leftovers/reheated but not many). Also our menu at home, while tasty, has been very limited and I am sure she will enjoy a bit more variety as often there just is no time to make separate meals for each of us and my needs have dominated what we eat most of the time. Also if I eat less specialist foods our shopping bill might come down a bit. Well, it might help pay for the enzymes anyway.
So tomorrow is fresh pasta day! I can’t wait!
(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!
Well, it seems there are several things going on so here’s a little update on each:
Haircut! I managed to go out on Saturday into town by taxi, to get my hair cut. It is so nice to have a proper cut as i have thick short hair it soon grows out of style into a mess, and i cannot be bothered/do not have energy to be styling it every time i get out of bed (two-three times a day!). It had been over 12 weeks since i last had it cut! I had a really nice friendly taxi driver and he took me both ways and my hairdresser was chatty too. This meant i had about two hours of conversation. I felt very lightheaded at times and knew i was overdoing it, but i REALLY enjoyed it, and being sociable 🙂 I coped ok in the salon with the noise, busy atmosphere, lights and music. I was nice to feel i was doing something in the “normal” way.
D-Ribose: RachelCreativeis back on her D-ribose, but after my three week trial i really cannot tell any definitive difference in my symptoms, although there is a lot of other things going on at the same time. I am stuck between wanting to be at my best for my sister’s wedding in 3-4 weeks so taking it just in case it helps even a little, and really not being bothered with it – particularly as i am experimenting with my diet so much. I would rather reintroduce a “new” food than introduce d-ribose and wait to see if it has any effect on my digestive system… so i think i am not going to take it for now.
Midodrine/POTS: It has been two weeks since i started to increase my dose of Midodrine. It has definitely been easier than last time i tried, with less nastly side effects. I think this is mainly due to the times i am taking it: more spaced out through the day… although i am going to try to continue upping the dose gradually a little more yet over the next few weeks. In general i think i am feeling a little stronger on this new dose as well, though my evening head and neck tension/pain has been worse. I hope this will ease off again. I may just be feeling stronger due to my digestive system improvements, who knows…
I am still getting some POTS symptoms, which i was reminded of yesterday when i was driven by my partner to a local small shop (5 minutes away in next village). I just fancied a little trip out of the house and felt ok. I walked up a couple of aisles and got what i wanted, then when standing at the till (there was a short delay as something went wrong with the items going through the till) i found myself really struggling to stand there. I sat on my walking stick seat which helped a little but just this small thing meant i had to go back to bed when i got home as i felt awful. It was partly due to “payback” from going out on Saturday to get my haircut, but still felt very much like the start of a POTS episode… there are definitely times now where i would be fine to go to a shop for ten minutes and pay at the till, but i still have to time it right and am often not as good as i imagine i will be when i actualy do it! It is easy to think i am SO much better when i am sitting at home, but in reality most things are still difficult. Baby steps…
IBS & the diet: The new diet is going well. After the fourth day of diarrhea after eating the oats, i took one Immodium (loperamide) tablet as i could not deal with it any longer and seemed to be losing weight fairly rapidly. After taking the tablet things have been much better and seem to have settled into a good pattern. My stomach is still achy and painful on occasion, but i think getting better every day. I am gradually introducing more things into my diet that “should” not cause any problems and so far so good.
I have eaten soya yogurt products, more ground nuts, fruit and seeds ground and cooked in my morning porridge, oh yes! gluten free porridge (rice and millet), avocado (my first raw fruit!), butternut squash soup, choc soya pudding, cornflakes, seed butter, rice pasta, a small piece of gluten free orange cake 🙂 …. and probably more new stuff… it has involved going to the supermarket and buying “special” products which can be pricier than the usual ones but i would not really have to do this if i was not going gluten free at the same time… after the oats i am being a bit careful about this issue, especially as my Mum finds she cannot eat gluten.
I have still not eaten any gluten since the “oats drama”, nor have i eaten any dairy products except a bit of egg in the cake. I am cooking rice and potato etc fresh and not allowing to cool (due to the potential resistant starch issues.) I am limiting very high fibre foods, or cooking small amounts of them well and mixing into the safe foods. I want to try some cheese at some point, but am not really missing the yogurt now that i am eating the soya version – just as nice.
I also want to try a bit of low fibre gluten/wheat products and see if i have a dramatic reaction like i did with the oats… i think i will wait a bit longer as things have only been going well for a few days. I need to try it out before my sister’s wedding weekend, but also with enough time to recover before going! Otherwise i may not be able to eat any of the wedding food! As a vegetarian, cheese sandwiches are staple fare at such times after all… finger’s crossed the oat thing was just a one-off, and not a sign that gluten in general is no good for me. We shall see…
Back exercise: I have been forgetting to do my back exercise recently, tut tut! I am still trying to do it though and will try harder! I think that because i am having more pain in other areas (shoulders, headaches) i am more focussed on that and don’t feel like lying on the floor and striking the pose… no excuses though!
Going out: I am going to try to go out on Friday early evening for a couple of hours to be sociable with a group of people in a cafe… cross your fingers for me to feel up to it?
Still on my limited diet… had a very bad couple of days after eating oats one morning, again that evening then following morning (may have overdone them a little!). Stomach very upset and only just calming down so i have been feeling quite bad…
Been doing more research as i expect oats are not the only problem (but if they are a main one at least i have worked it out: i have been eating quite a bit of muesli and oat cakes in recent months after all. It may be an oat intolerance or it may be the amount of fibre was too much for my system to cope with, not sure yet but it was a dramatic reaction…) and have found this really informative website:
It has answered many of my questions about what is safe to eat during a flare-up (not much and all of it white!) and how to integrate other more nutritious and tasty foods into the diet at calmer times… It is very informative and makes more sense than i could have hoped for, as i was getting a bit confused before! It does not go into the resistant starch issue (reheating and cooling of starches) much, but does talk a lot about indigestible fibres in different foods.
So i am persevering with my quest to conquer my IBS (no choice really as it was getting so bad)… i have decided that if i don’t get anywhere with the diet modification in a couple more weeks i will consult a professional nutritionist/dietitian type person, but i think it is ok to experiment unsupervised for a short time. I don’t want to get too bogged down and depressed about it either so a fresh eye on the issues and some new ideas/advice may be useful by that point if not much progress is being made…