Hi, I don't know if this has been remarked on in the past and I only came across it as I've just started to keep a food & bowel log.
I've noticed that the majority of the symptems I experience start with my first cup of coffee. This lead me to read up on sweetners.
It states that it is believed that sweeteners are linked with IBS and can cause the following: nausea, dizziness tiredness, depression, stomach upsets, high or low blood sugar, low blood pressure, bloating, gas, diarrhea, rash, hives, itching, swelling, wheezing, cough, runny nose, chest pain, palpitations, anxiety, anger, mood swings, depression and itchy eyes.
It shocked me to read it. I also found out that fruit juice and fizzy pop now use sweetners instead of sugar.
I just thought the above was worth a thought and I for one will never have sweetners again.
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Kezz63
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I only have sugar or Sweetex, all the other sweetners I have tried seem to cause problems. I have heard of other people saying they are also able to use Sweetex.
But you do realise, I assume, that coffee can be a problem in itself and if you have caffeinated coffee (I tend to stick to decaf myself) that can be a double whammy.
I don't drink fruit juice (my body doesn't like fruit very much) but I do drink Coke, but the original full sugar version!
The other thing I do with coffee is if I am wanting to go to the toilet (No 2's), I'll drink it hot but if I don't want to go to the toilet, I drink it cold. Hot drinks always help you go to the toilet but can be a bit of a nuisance if you don't actually want to go. I find the same with tea but I don't drink tea cold yuck. I do find though, by evening time, I can drink hot coffee without setting off my bowel! Funny the things you learn along the way with this journey with IBS. Such Fun!
PS I make my cold coffee by putting the sugar and coffee in a mug and mixing with a little hot water and then filling it up with cold milk. I use normal cows milk but you could use any kind of milk you wanted. Cheaper than buying the coffee ready made, although I do have a few treats along the way as I love the Starbucks in the bottles.
hi i have read what the nhs doesn't tell you about ibs in the past but wasn't sure. I reread it and yes it would be good if the nhs provided those test also. It would be good to get to the bottom of this, pardon the pun. But it's money that i don't have at the moment. If i did have id book a consultation straight away. I remember thinking that the girst time i read it.
Agree with Maureen1958 hot drinks tea/coffee can get the bowels moving, my mum used to have 2cups of hot tea if she was constipated it worked for her, likewise, I am careful to limit my cups of tea as I have IBS d
I will never go near anything with artificial sweeteners. Anything ending with " -ol" (mannitol, xylitol, sorbitol etc.) and aspartame. The work of the devil in my opinion.And this drive to stop us eating sugar means more of these awful sweeteners in everything!
Check yourself to see if you actually tolerate sugar quite happily. Never mind all the hysteria about it. Plain old sugar suits me fine. Coconut sugar is especially nice too and quite a healthy kind of sugar (doesn't taste like coconut) But it is rather expensive.
The big drag is I have to take my reading glasses AND a magnifying glass when I go shopping in a store. They are putting sweeteners in things you wouldn't imagine, like some pies and savoury dishes, and more or less all shop bought sauces ! Why??
Because it's cheap presumably... I stick with Demerara, always have.. but also started having a little Stevia which seems ok with me(?). the only way not to have any gut issues I find, is to not eat or drink anything but water! I know this as today I was fasting for a SIBO test tomorrow. Hey presto, no pain in GI tract... well apart from hunger after about 6hrs!
Hey - I only managed to send it on Thursday as my hips/back went into severe flare pn Monday am after 3 days of stress. So - I'll probably here back by Weds.. maybe Tues. I did it via private gastro - wasn't even suggested via NHS... First time I'd heard of it was from someone on here! It was more expensive doing it through the private gastro, although she suggested I buy it on the web to say money. I just couldn't stand any more confusion/stress so said I'd stomach the extra cash if she ordered it all and got the results. If you want to know the results do ask me next week.. I'll forget otherwise! You can get them for £165 on the web btw. Have a read up and see if you think symptoms correlate.. might be a game changer for you.
I am now on Movicol btw.. after working out for myself (after 2yrs of utter hell at night for 3hrs each time!) that Fibogel is the WORST thing for my guts.. it is tons of roughage, and coupled with Sjogrens (ie complete dehydration/slow transit/dysmotility) it is agonising feeling the stuff being dragged/blocked/whatever irritating my poor guts. A new GP I spoke to on the phone the other day said "er no, you don't want to be taking Fibogel with Sjogrens...". So why was it prescribed, giving me so much utter pain and, frankly, I think stretched my guts irrevocably.. by an NHS gastro two years ago on the phone who diagnosed IBS! Also, I worked out, I cannot take too much Bisacodyl.. so now I take 1.5 a night and drink a sachet of Macrogol (which is basically salt and magnesium?? and stuff) twice a day which drags water into my colon.. and allows my poo, which has basically been like dehydrated cement for years, to actually leave the building! Really recommend this stuff.... it tastes revolting but I've gotten used to it already.. and had results within a day of taking it.. without all the ruddy pain at night!
I hope this helps others... as I would not wish what I've been going through now for decades on anyone. It's the reason I have rectal prolapse (and therefore ruined my personal life) and have been often up all night whimpering in pain for decades.. And ruined skin, mood, memory, inflamed my joints - having toxins stuck in your body is horrific for it. So.. good luck with the info I've given, if it resonates... talk to your GP or gastro if you have one..
Hey there - I had my results back. I don't have SIBO - so will be, as my private gastro put it " due to my connective tissues diseases". Yes. Sjogrens.. completely ruins motility.. and a life long barrel of laughs that's been. I have found not taking the Fibogel has really improved my pain in the night - so that was a very expensive test for something I could have improved by removing the prescription made by an NHS gastro last year - who clearly had no idea what having Sjogrens means coupled with Fibogel.. but thankfully I worked it out myself (stopped taking it for the week of the SIBO test) and was also told by a GP who doesn't even know me "no, don't take Fibogel with Sjogrens" - due to the insane dehydration making it a v push and shove affair in the intestine ie tons of bulk getting stuck as no water in my colon to get it moving. Extremely uncomfortable ie agony for hours.. Hope this helps some on this site. All the best. D
Well actually sometimes I think I have scleroderma - which is really not good... lots of other symptoms and no cure. My rheumy won't send me for a capilloroscobpy.. but I can do that privately too or SRUK said they could get me a referral. It's like being a detective eh! Hope you've got lots of help from everyone on here. It's such an amazing site - don't know what I'd have done without it though the years! All the best, D
Yes I've been doing my research also, so hope the GP will make a referral for more test. I'm not holding my breath though.
I've got an 14 symptoms out of 21 for hypothyroidism, all the symptoms of of high ileus, all but 1 symptom for small intestinal overgrowth and 3 out of 4 symptoms for gastritis. Non of these show up on an ultrasound which is what I had.
Unbelievable you've got the GP who works part time for approximately £74,000 per year and I'm (and you) are doing our own investigation.
I did try to find out how many people have been misdiagnosed with IBS and it makes me wonder how many people just accept the diagnosis. Things clearly need to change.
I’m glad to hear it’s not Sibo and that you know have a small amount of relief. How did they find out that is what you have? Was it certain symptoms or something like IBS where they have nothing else to blame it on? Just wondering, it sounds excruciating, I do hope you get some relief soon!
I have autoimmune conditions since birth.. I was only finally referred to Rheumatology 6yrs ago after I started getting horrid cigarette burn like lesions on my fingers and hands... (but had had the motherload of organ, systemic issues including regular UTI's, heart disease, cracked skin, rashes, sun sensitivity from hell, hair falling out, joint deformities and agonising tendon issues, infections, dry eyes, teeth falling out, brain fog, severe migraines with lights, raynauds all my life and the exhaustion was so debilitating - so was diagnosed with Lupus when I met the top bod in this area) and even then the Sjogrens has been on and off the table via Ophthalmology and rheumatology. So it was diagnosed by all that but the precursor was I had dodgy blood tests 7yrs ago (and have all my life but no one put the dots together with my insane amount of health probs).. but it took a new doctor to notice (and apologise for the previous decade of older GP I had) and make the referral. I have neutropenia (low white blood cells) and very low complement 4 and off an on low complement 3. Had high ESR too until started on methotrexate.
But specifically re my guts, I've had constipation, bloating and pain since I was 7yrs old and went to stay with a friend whose parents gave me white bread. After that it was not coming out again! My father was into naturopathy and after seeing all my nasty rashes from head to foot and mouthful of white sores, puking, infections, bone malformations, burnt skin in the sun, he put me on the most clean and nutritious diet ever... and lots of top of range supplements. This was in the 60's. He changed the water to an at source in the home USA water purifier so we were drinking and washing in much better water, and also got one of the first juicers from USA. So it was wheatgerm and freshly cracked nuts with half a grapefruit for breakfast, veg and fish for supper plus gorgeously diverse salads.. He took me out of school for dinners every day for the food he'd put together and basically I was ok gut wise until I left home and couldn't afford all of that.. at 16. He was anti orthodox health btw... and we weren't allowed to talk about health at home ever... so I grew up not knowing what I was dealing with wasn't normal. ~It was very hard as a poorly kid, and after that I just ignored things until they started screaming loudly ie my heart Atrial Fib, and nearly passing out lots.. but that wasn't until I was late 30's.
Only now can I afford to buy lots of good nosh.. and it really does make a difference to have a good water purifier.. and to drink water all day - ie at least 3litres, especially two large glasses on waking to get things moving. But I was diagnosed with constipation when I finally started speaking about it only about 6yrs ago..if that..sadly my bod has fallen apart in places due to me leaving it all those years.. . and have been on prescription bisacodyl (previously just bought senakot and micro dosed all my life) but all the pain in my guts at night is due to the sjogrens but because all the different clinicians/depts in the NHS don't talk to each other and don't understand what an autoimmune condition can do to the guts (not just the bones, organs, skin, brain) they don't do their research.................... and mis-prescribe... so I go lumbered with an even worse gut situation using the Fibogeyl. Now I'm taking macrogol sachets twice a day (since seeing the private gastro a month ago) and have had to go up to 2 bisacody a night again.. or nothing moves.. But now, as I've got water in my guts (due to the macrogol making that happen, as Sjogrens means every single part of me is dehydrated to the max ie eyes, guts, lady parts, mouth, skin) it's all working much better.... the poo can move round...sadly I still have bloating because the bisacodyl is an irritant I guess... and even though I follow the FODMAP diet after being diagnosed with IBS on the ruddy phone by the nHS gastro who recommended the fibogel(which made everything turn to cement.. and ruddy well hurt being dragged/ pushed round my drier than dry intestines!), I guess that'll always be the case.
Expensive seeing a private gastro.. but I had to prioritise my cash as could no longer take the pain at night.. I have enough other issues at night bod-wise so I'm v happy not to have that one anymore! Not sure if all this helps.. but, if you can, fork out for a good (recommended - otherwise please don't) private gastro. They explain how everything works bod-wise with pictures (mine did anyway) and, well, it all made utter sense. Not great a Gp who I've never even met or spoken to before knew I shouldn't be on fibogel with Sjogrens.. and, of course, she might not have said anything unless I said that I've come off it after realising it gave me the most horrendous lengthy pain each night. Clinicians like to sound like they know what they're doing, of course.
Also btw - I used to take bisacodyl at night at the same time as buscopan.................... That's a NO! I read the pamphlets and it says don't take buscopan within hours of a laxative. Or the other way round can't remember... anyway.. I no longer take buscopan either. It doesn't sound like I have IBS.. I have Sjogrens ie dysmotility, slow transit and severe constipation. And in the end, I worked it out really! It is a process of elimination with food, yes... as I definitely don't do well with broccoli anymore.. (a non FODMAP food) and cannot eat shop bought bread (even the best stuff) but I can eat the bread I make from organic wholemeal flour, organic yeast and my purified water with a bit of salt... no probs... but also process of elimination with the meds we're on, especially if we take a lot, as, as I found out, a mix of the wrong ones, even though it sounds like it should work, can really give you major issues. I should have realised earlier... but one trusts clinicians doesn't one! Hmmm.
Hope that helps, are you still awake ;)?!! All the best, D
OMG you have been through a lot, I don't think there's many people with your strength.
I'm glad that you've now got answers and the right kind of medical treatment. It's took you a long time to get here.
I don't know if I have been misdiagnosed and I'll only accept if and when I have been tested for my list of possible causes. But yes, if the GP or other medical staff try to fob me off then I will go private. You can't put a price on health.
One thing I can say for sure is that this fodmap diet isn't making one bit of difference. I'm going back onto the meals suggested by Dr Michael Mosley. It's all heathy foods and works on other health issues or possible health issues.
wow yes, that definately woke me up! I’m so sorry it really isn’t right for anyone to have to go thru all of that. I’m new to all these diseases, except I’ve always had the IBS-C but never had too many problems with it till recently. I’ve also just been diagnosed with other auto immune diseases and finally, 🤞 everything is making sense to me. AND I can see how everything is all connected! I have an endocrinologist Dr who finally may be putting it together (or seems to be anyways), so I’m hopeful that he will after everything and everyone else was so separated. Between symptoms, medicines, side effects, and them not communicating nothing was getting any better. Finally they have determined arthritis after years and years of me telling them, and fibromyalgia along with it. So this dr is putting those all together along with the endocrine issues I have, and the IBS I have. 🤞🤞🤞. I know it is all connected!
I truly hope that they can find you that miracle cure that will help you ❤️, but until they do, never give up, stay strong, and hang in there!
I avoid then like the plague - for me they create brain fog, depressio, horrendous stomach pains and cramps, low mood low bp and worst of all the most horrible anger in me where I am literally horrible to everyone -that is scary - no way do I go for any product or supplement that has them in would rather have half normal sugar but TBH I avoid any sugar as much as I can - sweeteners - devil food IMO
Yes, artificial sweeteners create havoc for your kidney and liver , they also cause you to have insulin desensitivity and diarrhea ( goodness knows why they use them in diabetic sweets, but at least they do say dont consume much as it will cause bowel issues).
Ironically , they also cause you to put on weight and not just from bloating. Studies have shown that drinking a diet drink will still cause you stomach and brain to react releasing insulin and making the body go into digestion mode. The insulin release causes a rapid drop in blood sugar and as the body has no fuel to quickly use it makes you feel really hungry and crave sugary , fatty food and snacks. People having diet drinks with a meal ate a third more on average than those drinking water , milk or fruit juice.
Processed sugar can equally cause its own IBS symptoms too. That's why if your type of IBS involves diarrhea it is better to eat little or no processed sugar. A little honey can be good as a sweetener if you want it but it can help to get used to having drinks with no added sweetener or sugar in the long run . Some fruits, like apple or banana, if you can tolerate them , can be mashed and used in baking healthier cakes. Vanilla can also trick the mind into believing food contains sugar when it doesn't.
Thanks for the information about tricking the brain with sugar substitutes. I was completely unaware of the impact of sweetners and it has been a real eye opener.
I'm on my second cup of coffee (drink 2 each day) but put half a sugar in each. Tomorrow I'll try the honey instead.
Hi. For years I was told I had IBS but in fact I have bile acid malabsorption. This is where any unused bile should normally be reabsorbed by the body but it doesn’t and reaches the colon, and the body flushes it out, causing urgent watery diarrhoea. Anyway, I had to keep a food diary to figure out my triggers and have learned a lot that I didn’t know. Caffeine stimulates the bowel. Artificial sweeteners cause diarrhoea. Lots of foods need more bile to digest- foods with skins, skins and leaves, which is why salad is a nightmare! Foods high in fodmap also cause problems (beans, onions etc). Fruits high in sugar also. And then I have to eat low fat as that’s the obvious one that triggers more bile. So all in all there’s so much I cannot eat it’s a pain!
I have had my gall bladder removed so wondering if I also struggle with bile acid malabsorption. My food problems sound similar, definitely no beans or pulses in my diet. Thank you so much for your comments x
absolutely sounds like. One of the main reasons for bam is having your gallbladder removed. Read the bad-uk.org website for info about it. Formal diagnosis is with a sehcat scan but some GPs just trial with a bile sequestrant medication like cholestyramine and if they work then pretty conclusive. I was told for years I had IBS-D when in fact it was bam.
I avoid sweeteners and caffeine also can't tolerate honey or cows milk, in fact most lactose. I have been keeping a food diary for years. Can't eat bananas as I like them ripe and then they are all sugar. I avoid apples and pears and juice but can tolerate oranges. My dietician suggested I avoid raw foods so no salad for me, which I miss so much but the pain, cramps and other ibsd symptoms just aren't worth it. I take a digestive enzyme and probiotic daily which helps greatly
Raw foods are a nightmare. I can eat bananas though but they have to be unripe. And a few berries. I’m ok with root veg and broccoli! But it steam veg as it’s easier to digest.
Unfortunately I really don't like unripe bananas. I have strawbs, rasps and blues with lactose free cream for pudding most days. Same as you with root and broccoli but a definite no to cauliflower. Dark/vegan chocolate is good but no milk. For me, thank goodness for oat milk! It's taken a long time to get here but still get 'an episose' now and again. When I go out I need to know where all the toilets are so lockdown was a nightmare as they were all shut.
yes there’s so much I cannot eat. I had to shield due to health conditions so didn’t go out and have even working from home still ever since. I don’t like hot drinks and never liked any milk. I just drink water, luckily I love it!
Yes, I have to steam most of my veg. I am lucky to be able to eat some raw things sometimes, like peeled grapes, sometimes blueberries (but not too many) peeled cucumber no more than 2" at a time, and luckily slices of avocado. Sometimes a few lettuce leaves. But otherwise everything gets steamed including watercress , just for the last 2-3 minutes on top of the other veg.
I like unripe bananas. I always preferred them that way even before IBS, but I get online orders, and I have to have what they give me! They don't always seem to read the note I put with the order.
IBS food or drink related problems are hard because I find one day it upsets me the next time time I have it no reaction. I am really jealous of people who can eat anything, go to toilet once a day and just get on with things.
It took me quite a while to realise that my sugar free chewing gum was triggering my IBS! I found that sorbitol seems to be the worse sweetner for IBS. I can't drink sugar free versions of any soft drinks but I can drink standard Ribena without any issues, although coffee has been off the menu for years.
Similar for me, inasmuch as that, when giving up smoking, I managed to hook myself quite badly on the nicotine lozenges (for several years I'm embarrassed to admit.) I didn't have IBS before but sure do have it now. Whilst I can't prove that it was, certainly in part, the sorbitol crap they put in lozenges, I'm pretty sure that these directly caused my IBS. Obviously, I'm really glad I managed to kick the smoking habit 20 years ago. However, I think, if I'd known the legacy of lozenges would be long term IBS, I would have chosen patches or gone cold turkey! Have to agree with many others here: sweeteners are the devils work!
Hello Hied, I have read this too. There are lots of additives in our food that are detrimental to our food and health. Beware of ready meals, fizzy drinks, processed meats, in fact cook as much as you can yourself and then you will know what’s in it. Coca Cola is another one to avoid
I think plain Glucose might be alright instead of sugar? My mum used to give me that when I was a child if I hadn't been well or was overtired. It used to be easy to buy it from a chemist. in a box. It was a powder. I don't think glucose upsets the tummy. Unlike lactose which does with some people!
Are you in UK? I noticed while doing my online order just now, that Tesco have Dr Oetker liquid glucose 140g for £2.15. I don't know what it's like as I never bought that, but at least glucose is easily available. I don't know, but it might be cheaper at the chemist though?
I remember when my mum bought glucose powder for me, it was something like 1shilling and sixpence for a big box probably weighed a pound/ How times have changed.
Glucose is a pleasant taste but weirder somehow than sugar. Not sure how it would work in teas and coffees etc...
Coffee has acid in it that can cause an Ibs flare up... It can also make a normal person want to go to the loo.
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Sugar (sucrose, table sugar...)
Ibs has finally broke me!
Affecting my mental health 
What meds have helped ease your IBS?
IBS-C. Nothing is working.
