No clear diagnosis : So after 2.5 years of so... - IBS Network

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No clear diagnosis

Roary4 profile image

So after 2.5 years of so many tests and horrible pain I Have no answers other than I could have ibs. Has it been the case with any one else where its almost like the doctors cannot find the answer and so just give the one they know... Ibs?

43 Replies

I'm afraid that is it. Once checking you haven't got anything "serious", you are given a diagnosis of IBS.

Roary4 profile image
Roary4 in reply to Maureen1958

It seems that people have got such different issues that are so unique to them and yet we all get told that we have ibs... It just feels like they have given up trying to find what is actually the issue

Maureen1958 profile image
Maureen1958 in reply to Roary4

They don't know what is wrong, no more than we do, but they won't admit that so they tell us we have IBS and try to fob us off with stuff that doesn't work!

Roary4 profile image
Roary4 in reply to Maureen1958

I have never seen a doctor or specialist that seems to understand. They seem to think you are making it up as the tests are always 'clear' and so it must just be ibs.

Maureen1958 profile image
Maureen1958 in reply to Roary4

They just go with what they are taught at medical school, I guess. Usually research would probably be done by medical students doing PhD's at teaching hospitals.

4049rob profile image
4049rob in reply to Maureen1958

Hello,Sorry to hear your suffering I think this is the same with the majority of us. Mine started over 2.5 years ago, I have had so many tests with no answers. May I ask which tests you have had done, I have had colonoscopy, gastroscopy, ultrasound, just about every blood test and parasite test going. My pain is mainly on the left and radiates too my back when it flares up.🙂

Maureen1958 profile image
Maureen1958 in reply to 4049rob

I don't know if you intended this to go to the original poster but just in case you were asking me, I have answered. I have had IBS now for 35 years. I had a colonoscopy about 25 years ago and a SeHCAT test about 3 years ago!

Check for SIBO (Small intestinal Bacterial Overgrowth). This is a breath test and must be prescribed by a gastroenterologist. Have you taken any steps with your diet? You may want to consult a medical dietician about the FODMAP diet.

Roary4 profile image
Roary4 in reply to b1b1b1

Thank you I Will talk about a sibo with the doctor. I have tried everything with my diet. I have done many food diaries and even paid private nutritionist but no food seems to help. It seems so random that 1 day a food will be fine but another day it will set me off. It seems salad and veg make it worse which makes it so hard as I want to be healthy

1660tpd profile image
1660tpd in reply to Roary4

I have had ibs since I was 38 year of age I am now 81and I am still. like you one day I can eat something and the next day I have bloating bad pain and sick the only thing I. no is I cannot eat onions or apples x

Roary4 profile image
Roary4 in reply to 1660tpd

I am sorry you have had to go through this. I am glad it is not just me that has issues with food like this. Other than a few things I seem to have different reactions every day to the same foods. Very annoying. Thank you for sharing your experience .

Batteria profile image
Batteria in reply to Roary4

I was totally baffled like you. One day a certain food would pass through my body in an exemplary way and the next time all hell would break loose. Now I take a teaspoonful of kimchi or sauerkraut before every meal and there are no disturbances. The intestine slows down at night And to slow it down even further I take two sea kelp tablets. But I still cannot trust my gut and I have regular nightmares about it. I see a psychiatrist four times a year and she says there never was anything wrong with my mind. I knew that anyway but I just wanted it confirmed. The bowel has made me anxious. Not the other way round. Buona fortuna Bx

Meleber profile image
Meleber in reply to Roary4

Fibres from vegetables and fruits are definitely amongst the foods I need to avoid. The food I take must be very soft and easy to digest in the small bowel.

Pansy2 profile image
Pansy2 in reply to Meleber

When I eat salads fruits and whole grains makes the pain worse x

3443Ness profile image
3443Ness in reply to Roary4

Salad I love but my ibs doesn't I always have a flare up after eating it. I am like u and want to eat healthy so I am just sticking to the bits of salad foods which r low on the fodmap diet and eating smaller portions. Hope you find some answers soon I've suffered 28 years and Normal have a few bad flare ups of IBS but I've had a bad 1 since January I've had numerous stool samples and bloods taken but all come back normal so waiting to see a gastroenterologist now. Hope you feel better soon and get the help u need

Same here. Have had many examinations but till now they can't find the real cause of all my symptoms so IBS. But because my body keeps telling me there is something wrong I keep on looking for an answer. I've read and that is what I also experience, that a not yet diagnosed anatomical problem with the intestines could be the real underlying cause. I'm now waiting for the appointment with a surgeon to discuss the mobile cecum syndrome, an embryologic abnormality that can cause partial intermittent obstruction of the cecum and ascending colon and can mimic IBS. Read the scientific article "Laparoscopic management of mobile cecum" ncbi.nlm.nih.gov/pmc/articl...

Roary4 profile image
Roary4 in reply to Meleber

Thank you that's very useful. I will be sure to read the article. It would be so nice to have an answer!

Are you female? If yes is your IBS worse before, during or after your period? You could have bowel endometriosis. I have this and loads of ladies are told it’s just IBS by their drs when actually it’s much more serious and requires an operation to remove the cysts. Please look into this and ask your gp for a MRI of your bowel as it can be picked up there. It’s rarely picked up with an ultrasound. Good luck and best wishes 🤞 xx

I am a 22 year old female and yes it is often worse with a period. I have had a mri and colonoscopy and nothing was picked up in these tests. Would it have been picked up with one of these tests? Thank you all for your responses xxx

No not with colonoscopy but maybe with MRI but they needed to have had a specialist who knew what they were looking for. I would ask to see an endometriosis specialist and ask for their help. Gynaes are rubbish at looking for endo in a lap as they only look at uterus etc and I don’t have endo there. Google BGSE endometriosis centres in your area and contact them. You may have to pay for initial contact but they will put you back into NHS xx

Thank you I will take a look. I am willing to pay if it gives me an answer! Thanks for the advise! Xx

No worries and good luck 🤞 xx

Welcome to my world. The same happened to me. They just say go away and live with it. It's so frustrating.

Yes this is something I've been through but I've IBS Is very debilitating and excruciating pain. I've just started to eliminate foods that trigger my IBS like wheat going with lactose free milk gluten free bread and trying to reduce my stress which has helped with the bloating and pain good luck xx

Roary4 profile image
Roary4 in reply to -lilybet

Thank you lily bet. I'm sorry you are going through the pain too. I have also eliminated food that set me off, its just annoying that many foods are fruit and veg that I just cannot eat.

-lilybet profile image
-lilybet in reply to Roary4

There seems to be no clear reason as like you I still get paid. When I try a bit of something that I could tolerate before I been back and forth to draw and hospital I feel like a fraud as all tests come back as clear/normal but the pains real!!!

Roary4 profile image
Roary4 in reply to -lilybet

I completely know what you mean. I feel like it's all in my head as everything is 'normal' but the pain and constant toilet need isn't normal x

yep that's it. I got told that ' there's no magic bullet ' , had so called iBS for 30 + years.

IBS is an official diagnosis after everything else has been ruled out via blood and stool sample tests and in some cases colonoscopy if tests show higher than normal inflammation markers. Research into IBS has been ongoing for decades. There can be many different causes and probably at some point it will be split into a number of different syndromes. It can be due to genetic predisposition, gut infection, gut bacterial imbalances (caused by infection, stress, antibiotics), stressful life events or PTSD, the communication between the brain and the gut, the anatomy of the gut from birth plus others and any combination of the above mentioned. There is evidence that the health of the gut microbiome can be linked to IBS in some people. If someone has a poor diet and not looking after/feeding their microbiome, this can also cause the gut bacterial imbalance that can lead to IBS. The doctors can only go so far, since the research isn't there yet. There are some remedies that have been known to help certain sub-types. Often it is a case of a lot of work needed on the side of the patient to try different things to help them and self management. All of this is hit and miss, but once you manage to see some improvements the work involved is worthwhile.

Are you IBS-C (constipation dominant), IBS-D (diarrhea dominant) or IBS-M (mixed)? If your dominant symptom is pain, you may have visceral hypersensitivity/functional abdominal pain. If you let me know your symptoms, I can pm you some tips on self-management if you want?

Roary4 profile image
Roary4 in reply to xjrs

Thank you very much for your advice and support. I am an M as I am predominantly D but sometimes can be C on occasion. I can go to the toilet after every meal very badly within seconds of warning. I can then go a week without going causing severe pain. It can be okay for many weeks and then have a really bad flare up where even water goes through me.

Any advice is greatly appreciated x

xjrs profile image
xjrs in reply to Roary4

I have pm'd you Roary4.

I'm the same but my calprotectin is consistently raised. I had a blockage last May and January 2021 I started being sick, not all the time but some days worse than others. I started an 8 week course of Budesonide which was a game changer. For the first time in years I got my life back. After a review in April I was put back on Budesonide for another 8 weeks, because as I came off the steroids my symptoms returned. I'm due to have a pill cam but he wants another Colonoscopy first. I'm lucky in that this consultant hasn't given up on me just yet.

Good luck with your journey. It isn't easy but you need to find something that works for you.

Roary4 profile image
Roary4 in reply to Viklou

I'm glad it's working for you that's great. I hope it continues to work for you! Thank you for the support x

My GP on last visit 2 years ago ...

I walked into his surgery..

He looks up at me and gives an exagerated sigh... then say

" Yes what is it today"

I just turned round and walked out.

After this pandemic I will transfer to another practice, until then I just self medicate as best I can.

Batteria profile image
Batteria in reply to Bits1961

I can understand your dismay and I bet he was careful how he spoke to his patients after your silent treatment of him. However, why wait for pandemic to evaporate? Change now before things get really busy post pandemic. Con amore Bx

3443Ness profile image
3443Ness in reply to Bits1961

GP'S r supposed to be helping and most r see if u can see a different GP at ur surgery they have no right to treat u like that it gets me so mad as I also feel frustrated after seeing some of my GP'S then others e really understand the last 1.i saw wasn't much help but I told her I wanted to be referred to a gastroenterologist she didn't want to refer me at first but she agreed in the end just think she wanted rid of me 😂 so keep trying and be persistent good luck

If you haven't already looked at a fodmap diet this is the sight my GP gave me it's fodmap gloshospitals UK and scroll down to the low fodmap diet it's what the GP said was a good 1to look at

Roary4 profile image
Roary4 in reply to 3443Ness

Thank you I will take a look. I hadn't heard of fodmap before until this forum so very useful. Thank you

Have an IBS Smart Smart test.

If negative then have a SIBO test and if that’s negative then do a GI Map test.

It’s costly but you will have your answers

IBS should stand for I'm baffled syndrome.

Hi Roary. I am so sorry that you are going through all of this. And I am familiar with it all myself. I was diagnosed in my 30's with IBS. I am 76 now. Basically I was on my own. My GP suggested different things and I suggested different things but basically nothing worked. Anyway, when I was in my early 60's I went to a GI again and all the tests were done. But meanwhile, my GP did an antibody test for gluten and suggested I had celiac disease. So that became my new diagnosis. I should be fine if I didn't eat gluten. However some people (like me) who are gluten free still don't get better, and it is called non-responsive celiac disease. And guess what is considered a main cause of this. IBS ! Which means they don't know. Meanwhile, another thing you can get after celiac is SIBO-small intestine bacterial overgrowth. And guess what they are saying now. That IBS and SIBO are related. I find it appalling that they talk about IBS as if it is an actual sickness that they know something about. IBS means "I don't know what you have." But we have to pretend that it is a real diagnosis. If you have not had a blood test for celiac, that may help. There is another diagnosis called non-celiac gluten sensitivity and that could also help to check out. And actually , I think you can get SIBO, even if you don't have celiac, and it is a breath test which you could do. And the symptomes of SIBO are the same as IBS generally.

Good luck. I do know a few people who have actually gotten better over time. I hope you are one of them.

Roary4 profile image
Roary4 in reply to eliz45

I'm so sorry to hear you have had to go through it for so long. It really does seem that anything that is wrong that they don't know the answer to must be ibs! I'm glad it wasn't just me that felt like it was just something they call it when actually they have no idea. Thank you for your support

Hi Roary4, the doctor check the ANA SCREEN, IFA TITTER AND PATTERN ?

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