(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!