IBS without bowel symptoms?: Hello I've just... - IBS Network

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IBS without bowel symptoms?

BlackInk profile image
15 Replies

Hello

I've just joined this community to ask a quick question...

Is it possible to have IBS without any bowel issues?

I've got a huge list of stomach (and various other) symptoms, am B12 deficient, chronic low iron and low platelets, positive ANA result and hiatus hernia picked up during an endoscopy that was otherwise clear. Coeliac biopsy negative.

I suffer from daily nausea and a whole range of stomach pain and discomfort - acid reflux, gurgling and churning, bloating/pressure in upper stomach, painful cramps and spasms, etc. Sometimes tolerable, sometimes bad enough that I can't eat and sit huddled on bathroom floor for hours. No diarrhoea or constipation. I've lost a stone in less than a year and am now underweight.

My GP is bored of me, and now says anxiety / IBS. I said I had zero trouble with my bowels and he said that some people with IBS don't.

I've googled but can't find any reference to this so I thought I would ask the experts!

Thanks in advance :)

BI

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BlackInk profile image
BlackInk
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15 Replies
SophieC22 profile image
SophieC22

I have awful IBS however it is without any bowel problems. I have been lucky that doctors have never dismissed my diagnosis just because of having no bowel problems. I think it depends on doctors opinion and please don’t let if phase you when trying to get help for it. Keep pushing the doctor to give more tests/more treatments and linking you to dietician or any specialist that can help you. GPs are pretty useless any don’t know a thing about IBS apart from the bare minimum, which won’t help us with tricky symptoms.

Liz1234ty profile image
Liz1234ty

Hi - there is an official definition of what constitutes IBS and that must involve bowel changes so in that sense no you can't have IBS without bowel changes but in some sense this is just semantics as IBS is only the best known of multiple 'functional gut disorders'. I don't have any bowel changes so my gastro said no to IBS but could not find any structural reason for my symptoms so it gets logged down under the functional gut disorder suite that includes IBS as the most famous well-known sub-set. For example see - irritablebowelsyndrome.net/...

So basically not helpful as then it gives the NHS a reason to ignore us! I have since paid for private tests and found that I have SIBO, although whether there is an underlying cause that resulted in this remains inconclusive to date so I am trying to cure the SIBO and see if this helps my symptoms.

Have you had your stomach acid levels checked as too high and too low levels can cause many of the symptoms you list above? it may be that an NHS dietitian could also help you.

The link Liz1234ty is interesting, so read that.

Also have a look at

gosh.nhs.uk/file/1939/downl...

Should say my link is about children, but I thought it was quite interesting.

When I first had IBS there was little available info, and not much help from the doc.

In the end I had to go private to get anywhere. Even after being diagnosed, the only help I got from the NHS was meberverine, not sure that much has changed really. In the end I had to sort myself out. Are you sure it is not a diet issue, certain foods could give you the symptoms you describe. Watch out for cereals, bread, lentils.

BlackInk profile image
BlackInk

Thank you all, will have a good read of the suggested links... it seems there's not a definitive answer to my question!

I've tried but really can't relate my symptoms to what I eat and drink. I have similar amounts of things like dairy, wheat and caffeine most days, yet symptoms can be really bad one day and manageable another.

I don't think the NHS do stomach acid testing do they?

Liz1234ty profile image
Liz1234ty in reply toBlackInk

Hi Blackink - I don't know if the NHS offers stomach acid testing, although I plan to ask my GI consultant next time I see him. At the moment i am testing mine by taking a digestive enzyme that contains Betaine HCL with a meal and seeing what happens! If acid levels are high or normal you will get a mild heartburn/heat type of reaction. See this website for more details - not a recommendation or endorsement by the way, just a source of additional info - drjockers.com/10-ways-impro...

If you look at the range of symptoms for low/high stomach acid they do correlate with yours but unfortunately there are a wide range of possible causes for your symptoms. Hence its important to coax your GP/GI specialist into offering as many tests as possible. What have they ruled in and ruled out...keep at them!

PS - I have been seeing a nutritional therapist and said to her exactly what you have just written above i.e. that i cannot find any trigger foods. It is all just random. Even water or peppermint tea can set my guts off! She gave me some good advice and that was to follow a strict diet for several weeks i.e. 100% Low Fodmap diet, not 95% or 99% but total dedication to see if that calms things and then slowly reintroduce foods to see what happens. It is a slow old process!

You need to experiment with slow changes in your diet, for example, don't eat any bread for a few days, idealy cutting out wheat altogether. What are you eating at breakfast, is it a museli that is too much for your gut? Are you eating too much roughage? I get terrible problems with certain foods, but they don't give me D or C, just terrible pains, cramp, bloating etc. I only know what they are by trial and error over many months/years! Certainly wheat or gluten intolerance can be really bad for some.

There is a York test, but it is private and quite expensive, the cheap trial test is not much use, you would need the full test.

Sabab172 profile image
Sabab172

My main issue is upper gastro pain which is under my ribs and left side. It can feel uncomfortable or a stinging pain which can radiate to my back. I do have toilet trouble but not as often as the problems, I have in my upper colon. Currently going through tests with the doctors and going to try the low FODMAP diet. I am also in the throws of the menopause which my doctor thinks is not helping and is potentially the main culprit to my problems...

KATRINA74 profile image
KATRINA74 in reply toSabab172

Hi I have the same symptoms, I get the pain when o have trapped wind in that very place. My doctor says is anxiety ibs. To be honest it is worse when I am anxious but it is so hard to live with

pgiese profile image
pgiese in reply toSabab172

I've found that a low FODMAP diet has helped my GERD as well as my IBS. The initial elimination part of the low FODMAP can be a challenge, but it's necessary to identify the triggers.

Emily7171 profile image
Emily7171

Yes I have this too. I'm about to have a camera to look but I've put it down to a version of hypermonility and hormones causing low stomach acid as I did have this before most periods but now I'm in perimenopause it's pretty constant.

I've found smaller meals help and I use chewable licorice tablets with dgl and digestive enzymes after a main meal.

If I don't look after it it can get quite bad.

Also all the things they say to avoid don't cause me a problem like tomatoes onions. But too much starch does so, rice, mash, pasta.

I also found that the sleeping upright only helped a bit with nighttime painless reflux, but my sleeping position where leaning on my stomach was more of the problem. Now I put a bolster under my knees which prevents a lot of night waking from it as I can't get into the position that presses on my stomach.

I reckon the camera will show nothing there.

Hope this helps your exploration.

(Oh too much sugar too caused me to balloon / belch loads. Incredibly uncomfortable. I can still eat sugar but smaller amounts n not so intense. So like, not jelly fruits lol)

Tilly1312 profile image
Tilly1312

Have you heard of the Low FODMAP diet, best to do it under the guidance of a dietitian, there is a lot of help out there. IBS is about the bowel movements, however I experienced a lot of the symptoms you describe.

Marygulliford profile image
Marygulliford

I'd definitely get a second opinion. If you're suffering and in pain.

dmcintos profile image
dmcintos

You should get a second opinion and a referal to a GI doc - the weight loss merits this.

BlackInk profile image
BlackInk

My GP won't refer me or offer any further help, despite weight loss and vitamin deficiencies. None of the OTC IBS medications seem right for me as my main symptoms are nausea and upper stomach discomfort rather than pain and bowel trouble. I may have to try an elimination/low FODMAP diet but restricting my diet further feels like the wrong thing to do when I'm already low in key nutrients. Also vegetarian from childhood.

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