Sibo & Diet

[Loobyloo12]

Hi Everyone,

Has anyone given up on low fodmap diet & restriction & gone back to normal diet?. I have been doing low fodmap & gluten free for a year now & to be honest I don’t think it has helped with sibo & constipation, I am tired of the same foods all the time. I can’t figure out what if anything affects me anyway. My dietitian told me at the start that there is no evidence it helps scleroderma & sibo as it’s mainly a motility issue. Any feedback would be appreciated!!.

Many thanks

[OldTed60]

hi Loobyloo. I’ve adopted a mostly low fodmap, gluten free diet and been taking Rifaxamin 2 weeks on 2 weeks off. I’ve no idea if it helps but yesterday I took a break with a delicious homemade tomato and veg soup in a cafe along with piece of non gf sourdough. Hell I was so unwell later! I have SIBO and Gastroparesis secondary to my SSc. I guess I need to work out which ingredient in the very tasty dish triggered me. I always think I’m getting better but then it flares up and I lose more weight again after a few good weeks or even months. Think I’m still in denial lol

[Castella in reply to OldTed60]

I'd suspect the tomato, such a pity!

[Loobyloo12 in reply to OldTed60]

Hi Old Ted,

Thanks for your reply. It’s a nightmare trying to figure out which foods cause grief. I sympathise with you over the lovely soup, I struggle too in restaurants, all the lovely things on the menu which we can’t eat!!. I’ll still be sticking to my low fodmap & lactose free as much as possible, with the occasional slip!.

Many thanks

[Lupiknits]

I looked at the low foodmap diet, but it contains a number of items I just can’t eat.

Rifaximin every month definitely helps with bloating and diarrhoea though.

[Loobyloo12 in reply to Lupiknits]

Hi Lupiknits,

Unfortunately my NHS trust won’t approve rifaximin. I usually use metronidazole, co-amoxiclav or cipro when needed. I try not to use them until desperate as they are absorbed systemically & I’m afraid of becoming resistant. Wish I could get rifaximin.

Many thanks

[Halfwayuphill]

I am very much like OldTed, constantly thinking I’m cured and then Sibo hits. I take alternate Rifaximin and Metronidazole. I went for a month between antibiotics last spring but now it’s mostly two weeks and sometimes one. The contrast on how I feel when I have Sibo and not is astonishing as I’m sure you know.

Regarding diet, I tend to follow the Monash fodmap ap with adjustments. I find this is not so hardcore as some of the Sibo diets. The big thing I’ve learned is hard for those short of time but basically any sort of convenience gluten free bought food is a no no for me and I have to work hard at cooking special things to try and keep my weight up. I have fruit smoothie followed by buckwheat pancake with egg frequently for breakfast. Flaked quinoa porridge sometimes, and to try and get my weight up cake made with fine cornmeal, rice flour, ground almonds etc but don’t buy mixed ‘gluten-free’ flour anymore. All small ish portions. I use lactase in fresh farm full cream milk. (Little suspicious of this as started to have coconut milk and seem better). I make my own 24 hour yoghurt and kefir recently. Usually don’t have this when treating the Sibo though. Meat or fish about three times a week. As far as recipes, Riverford are good but I do adapt them for me. Some days I too have small amounts of sourdough - but make sure not supermarket as needs to be 24 hour ferment!

All this makes me sound like a saint and it is expensive and time consuming I admit. I’ve only got here though after years of struggling and getting the energyto devise all this through gaps of health with antibiotics.

Hope this helps

[Loobyloo12 in reply to Halfwayuphill]

Hi Halfwayuphill,

Thanks for your informative reply. I have always eaten healthily even before scleroderma. I eat a lot of salmon & white fish, chicken & occasional red meat, lots of veg, make my own soups & cook my own meals. I don’t have a sweet tooth luckily. I am lactose free also. I eat sourdough spelt bread (recommended by dietitian), which I like, but not great for sandwiches. I am also quite underweight 6st 10. I also take ensure (supposed to be 2 a day) but can only manage 1. Not much else we can do really.

Many thanks

[Halfwayuphill in reply to Loobyloo12]

Sounds like you are doing everything you can LoobyLoo. I suppose we all hope by asking advice there is someone out there who has found the answer. Seems like mainly juggling for most of us though. I should have added I’m not much of a good example anyway as can’t get my weight up from roughly same as you. Main difference for me now is I get gaps and weight been stable so I suppose that’s progress.

[Deby177 in reply to Loobyloo12]

I a exactly like you. Food is and cooking after CT scan was told inflammation bowel, kidneys, and cyst on ail pancreas, although soft toilet motion every day, follow gluten,dairy free diet get repeated pain lower left side very frequently exactly same spot was told I had back log in bowel area even though not constipation do have a kink in bowel. Since upping my stool softness, movical and senna, must confess seem to be able t control symptoms better

[OldTed60 in reply to Halfwayuphill]

cambridge-news.co.uk/news/h...

[OldTed60]

hi - after reading halfwayuphill’s comment made me recall that I heard a radio programme recently with dr Michael Mosley extolling the merits of resistant starch. Seems that if you cook and refrigerate or freeze cooked carbs then the sugar in them turns to the soluble kind of fibre and can help us avoid or treat GI cancers. I’ve been trying this with gf pasta twirls and so far as long as small portions (remembering that I have confirmed severe gastroparesis as well as slow transit colon and SIBO) with swills of tea and well chewed with plenty runny sauce and cuppas of decaf tea or coffee then I’m not getting grief after and am gaining a bit of weight back!

cambridge-news.co.uk/news/h...

[Halfwayuphill in reply to OldTed60]

This is something I’ve not heard!

Thanks OldTed

[OldTed60 in reply to Halfwayuphill]

Me neither since I tend to turn off food / nutrition related programmes these days. But I’m glad my husband made me listen to his podcast on bbc radio 4. Sorry don’t have the link but it was recent so I’m sure you could find it on bbc sounds xx

[cpidoc]

Hi, have you tried probiotics or pre biotics?I use Symprove and intermittent Chuckling goat prebiotic and kefir.

Look up A2 milk, goat and sheep are naturally A2

Also seeds and nuts?

I find seeds and nuts help a lot.

Nurturing the microbiome is so important.

If you can afford it you could try the Zoe program?

Do you listen to their podcasts?

Also this is interesting, I haven't tried it yet

youtu.be/6zUPAHFzvPw?si=g5O...(Not working as expected?)

Good luck

[Loobyloo12 in reply to cpidoc]

Hi, no I have’nt tried probiotics yet, must say chuckling goat sounds strange!. I do eat nuts & seeds though. I have listened to a bit of the video, but have’nt finished it all yet - sounds interesting.

Thanks