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Getting excited about next week now! I have been working hard preparing my blog for ME Awareness Day (/week/month) on 12th May and am really looking forward to reading what others will be writing. I may have to post a little early (spread the fun out, i say). I have been reading all the posts on the ME Awareness Blog about all the things people all over the world are getting involved in to mark the occasion and feeling the sense of collective action… I also contacted my local ME group who are organising tea parties to say i want to attend/help out at one (as i don’t think i can host one myself) and they said they will let me know if something suitable comes up – so maybe i will meet some new folk too!
My diet for my IBS is going well. Things have continued to be calm and free of drama, except for a blip last Friday, so a couple of days ago i ate some cheese, and today i introduced some wheat flour (pancakes!). So far so good, but don’t want to speak too soon. I know i cannot tolerate large quantities of bread, and pastry and things like pizza base often really upset me, also, oats seemed to cause 4 days of upset the other week… but i think if the pancakes don’t have a noticable reaction when i have been gluten free for some time, then maybe it’s not something i need to worry about too much and i can just carry on eating wheat/gluten in small amounts. I think the main reason things are so much better is the reduction of fibre, and not eating raw fruit & salads (which is also to the same end) but while i am on i thought i would try to find out if i was overly sensitive to likely culprits, I am hoping not!
I have also purchased some Kefir, which someone recommended to me. It is like growing your own yogurt culture, except it is meant to be even better for you than live yogurt or probiotic tablets… so will let you all know how that goes as well! Dr Sarah Myhill talks about it on her website.
I have not been feeling too great in general, i had three things i could have gone out to in the last week and could not go to any of them (not that i usually go to three things in a row!). I am finding the smallest things are really draining me, like when the cleaners came on wednesday and one was really stressed (someone had backed into her car that morning) and just five or ten minutes of listening to her tell me about it tipped me from feeling quite good, to feeling awful the rest of the day, despite going back to bed…
I have managed to raise my dose of Midodrine up to 5x 2.5mg day, where i was on 2x 2.5mg. It has not been too bad, and i am really pleased to have managed it this time, but i wonder if that is dragging me down a bit as my body adjusts… as always, who knows… maybe it’s all the blogs i have been working on – actually that makes sense 
let’s hope people read it!
I did manage to go to a local wood on May 3rd - the bank holiday weekend – and it was absolutely magic – bluebells, sunshine, birds singing - and it really was just what i needed – would like to go back as soon as i can as it was just lovely!
Here is a picture i took:
Ahhh – see how relaxing it looks! I wish i could live in there! A real “may day” spring feeling was had by all 
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?
Hi all,
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…
Tried quinoa porridge this morning – had to make myself (sitting on chair)and it took quite some time, boiled over when i looked away for a minute and made a huge mess and by the time i came to eat it i was feeling grumpy already! It was not bad though with a teaspoon of honey and a teaspoon of mixed nut butter (like peanut butter, but made with a mixture of nuts!).
I cannot face the effort again however and think i will be introducing oats back into my diet tomorrow. I read somewhere that eating them cold after they have soaked for a while is the best way, so that is the plan (with soya milk and honey, of course). I actually want tomorrow morning to come around now!
I have also been eating rice cakes. I looked on the packet and total fibre per rice cake is 0.2g, so that really can’t be too much resistant starch can it? (However many times they are heated and cooled to puff ‘em up!)
I am going to eat brown rice tonight (with tofu and veg) as things not moving along quite so well today! Looking forward to that too – funny how much more you can appreciate simple foods when they have been denied!
Read a bit more about the resistant starches and there don’t seem to be many tables around to say what foods are higher or lower in content. This could be because it changes so much depending on their state (raw, cooked, cooled, reheated, ripeness etc etc).
I did find out that canned chick peas have mainly the first type (there are 4) of resistant starch which is broken down by chewing (amylase?) whereas red kidney beans have a lot of one of the worst types which is not really broken down at all, so maybe chick peas will be my pulse of choice (with extra chewing action)!
Also seeds are meant to be very indigestible, but mainly due to their fibrous casings/husks so it is suggested that whizzing them up to chop them into pieces allows access to the insides to be digested…
The same seems to apply for whole grains (like my muesli or oats) that if the grain is rolled, milled, ground etc it is better digested… My muesli has toasted flakes of various things so this may increase their resistant starchiness. I am staying off that for a bit longer before i judge if it is something that is causing trouble (as it contains dried fruit, nuts, whole seeds as well as various grains), but i am really missing it! Will see how the plain oats go first…
I must just say that please don’t take what i say about this as fact – i am finding it hard to understand and gather the info and i am no dietitian! There is a lot of contradictory information about this and different opinions about resistant starch (and believe it or not, fibre in general… It is a minefield out there and frankly there are people on some very strange diets!!!).
This post follows the last…
Yesterday i began to change my diet in earnest, after a couple of days of research and starting to make small changes.
My diet plan for this week is as follows:
Foods allowed:
Rice (focussing on white as less fiberous, though may eat brown later in week when i see how things go) – i have basmati (white) and pudding rice to start with.
Quinoa – a seed which look like a grain and is high in protein/nutrients and i think easy to digest
Soya milk – i usually use soya milk anyway as i don’t like cow’s milk and as many people don’t do well on a lot of lactose i also prefer to eat my dairy allowance as yogurt!
Boiled/steamed vegetables – avoiding sprouts/cabbage/normal brocolli/onions etc that may be particularly wind-forming
Tofu – figure it can’t be too indigestible as well processed
honey and nut butter – these seem to be ok according to the powerpoint presentation and can be used to help things taste like breakfast/pudding
herbs, cooked fresh garlic and ginger – to give some savoury flavour
Potatoes – have not had any yet, but can’t see that they should be a problem if cooked freshly and still hot – hmm hot potato!
Still water and herbal teas and 3 cups maximum of caffinated tea (no point going through caffeine withdrawal or having none of my favourite things!)
This means i have cut out: dairy products, gluten, Quorn (i eat quite a lot of Quorn (a meat substitute) so worth seeing if it upsets me at all, fizzy water & other fizzy drinks (can cause gas to pass all the way through, they say), raw foods, fruit, whole nuts and seeds, fermented foods (vinegar, yeast, soya sauce) and reheated foods…
It seems extreme but i won’t be keeping it up for long i can tell you! I just feel it is worth a try to
a) give my system a rest
b) see if changing my diet can improve the worst symptoms
c) see if anything i eat a lot of is not agreeing with me
As i mentioned in the last post, i am not willing to do a proper elimination diet to see if i have food intoleraces. I have done it before with no definite conclusions and as an energy-limited person reliant on someone else to cook all main meals it is a lot of disruption and effort. Just this week will be hard enough!
Breakfast is my main problem – yesterday i had oats with soya milk, as apart from boiled rice it was all i had in, as it was before my partner was going to the supermarket! Today i attempted to make rice pudding in a pan with soya milk, then added some honey and a sprinkle of cinnamon (ooh, naughty - not on the list!). It took constant stirring (not all by me) for half an hour to get the rice soft enough to eat and i am wondering even now if it was cooked enough – hardly something i can do each morning, and to bake it in the oven in the traditional way takes a lot longer. You can make quinoa “porridge”, so i may try that tomorrow, that cooks in about ten minutes – phew! (If that does not work/is horrid, i will be introducing oats back into my diet quick smart i think! They are meant to help with IBS anyway, unless you have a problem with gluten.)
So, i don’t have a definite strategy of what to do at the end of the week, but if my symptoms have improved, i think i will reintroduce some of the foods i eat the most of usually, one at a time over 2-3 of days, and see if anything changes.
Top of these i think are: bio yogurts, oats (then my lovely spelt, barley and oat muesli), Quorn, seeds (which i usually add to my muesli but the theory seems to be they can be too husky unless ground up).
I think i have already realised that i need to eat less fruit and raw veg, but i need to look into the “resistant starches” more and see if i can find a good table of foods and their values – i have found a couple but they only list a few things, such as rice, bread, potato in freshly cooked, cooled and reheated states, and bananas (which seem to be very bad). It would be useful to know more about specific products (oat/rice cakes for example) as well as which fruit and veg are easier on the tum… i love fruit! I think it will be trial and error on that front.
Obviously i need to keep an eye on keeping a healthy diet while making these changes, particularly with reducing raw fruit and veg as i think they provide a lot of vitamins and minerals which can be lost in cooking. I hope to be able to eat some whole grains and beans/pulses, as again they are so nutritious… I may just need to keep an eye on quantities!
I may look into probiotics as well but think i need to do one thing at a time, so i may experiement with them further down the line…
Early results!
Well, yesterday was a much better day with massive wind reduction and no other problems except a bit of stomach ache which is usually present anyway :) I was a little concerned that i may have reduced too much fibre and would have the opposite problem to usual, but today also seems fine. I did eat quite a pile of steamed veg so i am getting some fibre to keep things moving along!
Even if i don’t get to the “bottom” of all my problems, knowing that i can go on a certain diet just to calm things down is a good start, i hope the rest of the week is as good as this early start!
Well, here i am talking about unpleasant bodily functions again… well, someone has to!
As i said in my recent post about my visit to see the POTS specialist, i explained to her how my IBS has been getting gradually worse and worse over the last few months. She gave me a diet sheet and said that advice has recently changed on how to deal with it diet-wise. (She is heavily involved with ME patients, which is why she probably had an IBS diet sheet in her unrelated hospital ward!)
This is interesting to me as i have had IBS symptoms throughout my illness to some extent, it was particularly bad early on, but seems to be flaring up now as well, who knows why… I have experiemented radically with my diet before and had very limited success with it. These symptoms were some of the most distressing and debilitating that i had when i first became ill, i lost a lot of weight and i would often not leave the house because of it, never mind due to other symptoms or energy issues. Nothing i did seemed to make much difference and after quite some time it seemed to improve along with my general levels of health for reasons and logic unknown to me. It was a bit “chicken and egg”: did i feel better because my IBS was better? Or did my digestive function improve as my body was functioning better in general? I really can’t say.
So anyway, this new leaflet has sections on “wind and bloating”, “diarrhea” and “constipation”; and has advice for each set of symptoms. It says to try adjusting diet according to which symptoms are the most problematic at the current time…
The advice used to be to increase the amount of fibre in the diet, but now it is not necessarily a good idea, and that people with a very high fibre diet may need to decrease the amount. I am a vegetarian and have a very high fibre diet and have noticed that if i eat extra fruit and raw veg it makes things much worse. I also reacted very badly to “Fibogel” a brand of powdered drink that contains soluble fibre and it meant to help with digestive problems.
The leaflet has a section on “resistant starches”. I have never heard of them but it seems that they are a type of starch that is not broken down in the small intestine, but that travels through to the colon where it is broken down by fermentation… It is apparently a healthy thing (there is “good gas”) and is added to a lot of food products to increase the fibre content and “healthy values” associated with it. BUT it seems that if you have IBS or trouble with your digestive system it can be hard to digest and cause a lot of unpleasant wind production (that’s the fermentation bit) and be too laxative. I think as these are my main issues that i should try to reduce these type of starches and see if it helps, but as a veggie this is going to be very hard, and i have yet to find much detailed info about which food products are ok…
It seems that the amount of resistant starch in some things actually goes up when they are cooked then cooled, so it is best to eat things freshly cooked and still hot and not the next day as leftovers (something i do a lot as it helps me energywise when my partner is not in to prepare food for me).
The diet sheet says: Resistant Starches (explains what they are, see above, then…) Try reducing your intake of the following foods:
- pulses, whole grains, sweetcorn, green bananas, and muesli that contains bran
- undercooked or reheated potato or maize/corn
- oven chips, crisps, potato waffles, fried rice – choose baked potatoes or boiled rice
- part-baked or reheated breads, such as garlic bread, pizza base – choose fresh breads
- processed food such as potato or pasta salad, or manufactured biscuits or cakes
- ready meals containing potato or pasta
- dried pasta – use fresh pasta instead
So the things that concern me here are firstly the pulses and whole grains… being a veggie and health conscious i hardly ever eat an unwhole grain and as i think beans must be included in the “pulses” category as they are not otherwise mentioned i am really scuppered… As with most veggies, my main protein source is beans of various types… i eat soya products like tofu and soya milk but am unsure if they count, as are not in wholegrain form and may be more digestible? I also eat muesli every morning but i don’t think it has bran in it…
I find that eggs do not digest well for me, which is a shame, so then i am just left with dairy products (protein wise) and as a person who cannot exercise i cannot really eat lots of cheese for protein if i don’t want to pile on the pounds can I? Plus dairy products do upset some people… i eat a lot of low fat yogurt so hope this is not a problem as well.
The other thing that could be an issue is that i like to crunch on rice cakes and oat cakes, but do these count as reheated/processed grains as they are baked (like biscuits/cakes mentionned in the list above)? I have avoided eating too much wheat in the past as I wondered if it was upsetting me, but maybe bread would be better than crispbread type things after all?
So as you can see this has opened up a can o worms…
It also says for wind and bloating:
- limit fruit to 3 portions a day and make up rest with veg (it explains what a portion is)
- Oats and golden linseeds may also help with wind and bloating
- you may wish to try probiotics… (more detail given, including to try different ones for month at a time as they have different bacteria that may suit some more than others…)
The advice for diarrhea is fairly similar to the above, as well as avoiding fatty foods.
For constipation (not really my problem but may be yours!) it says
- fibre may help with constipation, but can make wind, bloating, pain and diarrhea worse. Fibre intake should be adjusted according to effect and reduced if necessary. If you do increase your fibre intake do so gradually because any sudden increase can make things worse.
- For symptoms of constipation only, try wholegrains, along with fruit and veg, introducing no more than one extra portion over a 2 day period.
- Oats and golden linseeds are good sources of soluble fibre which make the stool softer and easier to pass
- Drink least 8 cups of non-caffinated fluid per day
- probiotics may help
I also found this power point presentatin online about IBS and diet:
http://www.cscn-scnc.ca/NMemberResources/Powerpoint07/NutMgmtOfIrritableBowelSyndrome.ppt
It has more information about what foods are likely to be ok and which may not, and goes into more detail about how to do what is basically an elimination diet. This is where you eat only safe foods for a time (usually several weeks) then when your system is calm and symptom free you introduce one food at a time (often just one per week) to see if there is any reaction. This is used to see if you have any food sensitivites/intolerances. I have done this before and with no real conclusions – it is a real challenge and i am not really prepared to do it again unless things get a lot worse!
I think what i am going to do is to eat a basic diet for a week or so and see if my symptoms do improve. If they do then i will know it is worth playing with my diet to see if i can avoid the worst symptoms in future when i have a flare-up. Just giving my system a rest may help in itself. I think my diet in general is pretty good and has not changed radically for years and most of the time there have only been minor issues on the digestive front so i think it is more a case of managing flare-ups than identifying food intolerance and making great changes. I already do not eat great quantities of dairy products (only really live yogurts and a tiny bit of cheese), and i also avoid eating a lot of wheat, which are the main triggers for people in general… this has generally worked for me.
From reading about it and thinking about it i feel my main issue is likely to be speed of digestive transit. My main issues are wind and stomach pain and going to the toilet too frequently. I think that maybe food is not being completely digested as it is going too fast to have enough time to break down properly, and not enough is being digested in the small colon. Reducing fibre (particularly resistant starches) i think may help this. Also from the power point presentation i think i maybe need to eat less raw foods so that they are easier to digest (no more raw sugar snap pea snacks for me! See how healthy i should be – it’s so unfair!)
I am going to detail my plan of action in the next post as this one is getting overly long!
I went to the hospital today to see the POTS specialist. It was a good appointment, i felt my brain was working enough to get my head around what she was saying and also enough to be articulate, which helps.
I currently take midodrine twice a day, morning and lunchtime, at a low dose 2.5mg each time. I did double this dose for three weeks before, which caused all sorts of side effects and i felt awful so i contacted her (the specialist) and she said to go back to the original dose.
The plan now is to take an extra dose at tea time, as i told her i have a low point at about 4-5pm most days, so she thinks it is reasonable to try and see if another dose helps this slump. After trying this for a couple of weeks she wants me to try to take the odd extra dose in between, at times where i feel i need it, and see if this helps and how much i can tolerate.
I am keen to give it another try to up the dosage, as it has worked really well for me on the lower dose, and there are obviously still symptoms of it affecting me. Many of my worst symptoms have improved and life IS better, particularly “at rest” (in ways i have explained in previous posts so i will not repeat myself – now i have “tag cloud” in my left hand column you can click on “POTS” and read all about it!!).
I am to contact her if things are not going well with this plan or i need to check anything, otherwise i will see her in three months time and she says she will give me something else to try on top of the midodrine to try to improve things even more… which would be nice!
It was good to feel that she still thinks that improvements can be made and that much of my illness/symptoms could be still attributed to POTS and related autonomic malfunctions, despite the initial improvements of specific symptoms. She emphasised that we are at the start of a very slow journey of improvement and seems to think we will get somewhere with it eventually. I really hope so!
I even got a new diagnosis out of the appointment today! I have… drum roll… Defecation Syncopy! Say it loud and proud! This information from the Student British Medical Journal mentions it, as well as other forms of syncope, which is quite interesting. I am not sure exactly whether POTS falls into the Vasovagal Syncope or the Postural Hypotension groups, or is a mixture, as both descriptions sound relevant to me… the defecation syncope seems to fall into the vasovagal group, and is obviously related to my existing problems.
I do not actually pass out, but i feel extra faint and dizzy and weak just before and when i have a bowel movement, and often go back to bed to recover. As my IBS has been getting worse, this has been affecting me more, although this has been happening for a long time, I did not think much about it. It just occurred to me that it may be relevant when i was asked if i get more symptoms after eating a meal (or other specific times), and i thought that no, it happens further down the line than that, so i thought i would mention it!
The Specialist said that she is a world leading expert on defecation syncopy! (she said this as if it was amusing, not in a “I am so clever” way, she is not like that at all) and that no-one knows how common it is as no-one speaks about it (except me evidently!). She said that tests have been done where they insert a bag up people’s bowels, and inflate it, and they just pass out!! She did not test me today She said that some people need cushions around the toilet and on the bath/sink edges near the toilet as they pass out and don’t want to crack their heads open on the way down… glad that it is not that extreme in me.
So the plan for this is to take another dose of midodrine when i get these symtoms (or feel the need!) and see if it helps…
She also gave me an interesting info sheet on IBS and diet, which included things about “Resistant Starches” which i had not heard of… basically it is a type of fibre that is not broken down in the small intestine, but ferments in the large intestine, causing wind, discomfort etc. It is good for people in general, but maybe not so good if you are having trouble digesting. The leaflet also lists dietary changes for each main symptom, rather than all IBS in general, so i think i may try to make some changes and see if it helps. I will write more about this in a separate post when i get chance later and have looked into it more.
All this means that my D-Ribose three week trial may be hard to do, as if i start taking more Midodrine and change my diet a bit i may not be able to tell what impact the D-ribose is or isn’t having. Ahh well. I should have planned the timing better but that’s where being spontaneous gets you! I will do it anyway and see…
