Is it IBS or simple constipation ?! I'm very confused after seeing the 4th gastroenterologist yesterday.

[Rose92]

Hi Everyone,

I've just found this network so I'm new here and I'd like to hear other people's opinion.

My symptoms started in November 2022. I'm coeliac since 2005 hence on strict gluten free diet.

Everything started with constipation which went into periods of that and diarrhoea. I went to the GP back in 2022 who prescribed laxatives that didn't work.

After this she recommended to try eliminate lactose entirely as she said it's very common in people who have coeliac that lactose intolerance occurs over age of 30. (I'm 32 now and just turned 30 in 2022.) I eliminated lactose which I think helped for a while.. until I started to experience severe pain and bloating. I don't want to prolong the story, I tried lots of different diets and food, try to find my triggers but I don't think it's food related. I'm not stressed, have good quality of sleep, meditating on a daily basis (have been regardless this condition and my symptoms), I have a very supportive partner, no financial problems, kids, etc.

Between 2022 and 2024 I've been visiting other countries where my symptoms were persistent so I went to hospitals where every doctor told me I have IBS. (I've seen 3 different doctors independently and they did tests.)

After coming back to the UK at the end the GP diagnosed me with IBS without actually referring me to anywhere.. I tried many medications/supplements but nothing works. The biggest problem for months now is the bloating and the extremely unpleasant smell that I can't be around people. I had to reduce my hours at work, became introvert, lost friends.

At the end I was keep going back to the GP so they did blood and stool tests in November 2024 that came back with high calprotectin and other inflammatory levels were high too in the blood hence referred me to gastroenterologist who I've seen yesterday.

The gastro doctor said she thinks I'm simply having constipation problems, even though I haven't been constipated for nearly 6 months now. She explained in a very long way that I'm constipated.. I told her I'm not but she prescribed 6 sachets of Macrogol to take it for 3 days and said give it a try (which I will). She also referred me for colonoscopy and small intestines scan and I also have a normal abdominal scan next week.

I feel confused as I was told by doctors for months and years now that I have IBS but this doctor said I'm simply constipated which is mind-blowing for me. I respect her as she went for uni, etc. but at the same time I don't think she is right.

I just wanted to ask people's opinion about the situation and if you have experience with Macrogol before. Instead of going out with friends I'll spend the weekend in the house and taking them. The doctor said it's good to do it anyway as I'll have colonoscopy within the next few weeks and a pre-cleanse helps them to see better as for some people the normal prep not as effective.

I'm open to everything and anything so please share your thoughts and opinions.

Many thanks.

[xjrs]

It might be worth waiting the results of tests first. IBS is diagnosed when all tests come back clear, but you still have gastrointestinal symptoms. IBS is often accompanied by pain.

You are getting a colonoscopy since you have high calprotectin and they need to check for other things. You can still come back with an IBS diagnosis after colonoscopy - statistically this is more likely.

One thing that can cause high calprotectin without it being inflammatory bowel disease etc is diet. High protein, low carb/fibre diets can cause elevated inflammation in the body. This is because fibre is needed to feed the microbiome and a healthy microbiome is needed to reduce inflammation, plus high animal protein diets are pro-inflammatory. I'm wondering if you are getting enough fibre due to your coeliac restrictions and you may need to up your fibre intake without introducing gluten?

There are various sections on the below page that you might find of interest:

ibsresearcher.com/diet/

Smelly wind could also be connected to diet too (e.g. high animal protein).

There is also this about gas and bloating:

ibsresearcher.com/gas-bloat...

Another thing to consider is a good probiotic like Alflorex which has been scientifically studied for IBS. If your microbiome is a bit compromised it might help bring things back in balance and it also helps to suppress gas forming bacteria in the gut.

However, I would hold off until you get your results back so you have a better idea of how to proceed. Good luck.

[Rose92 in reply to xjrs]

Thank you so much this was extremely helpful! 🙏🏻

[NatureSoul]

I am experiencing similar to you and I’m waiting to have stool & blood tests done. I hope you can be on the mend soon 🫶🏼

[Rose92 in reply to NatureSoul]

Thank you so much, I wish you the same.

[NatureSoul in reply to Rose92]

Thank you lovely 🫶🏼 literally feeling nauseous bringing up bile all the time, it’s not fun 🥲

[Mosey1702]

Hi Rose92, I understand your confusion as I have been there myself and am continually reading up about IBS. xjrs is extremely knowledgeable about IBS and is the author of the ibsresearcher.com website (link in post above). It is well worth referring to it to get an overall understanding of IBS.

IBS (Irritable Bowel Syndrome) is an umbrella term for patients with bowels issues that physicians can't explain yet. In my case nearly all the tests came back clear but it was not until I did the FODMAP elimination diary that I realised that all my episodes of diarrhoea coincided with ingesting fructose. My gastroentrologist then said I had dietary fructose intolerance which means I can't eat any fruit or vegetables. I replace them with multivitamins and fibre tablets. While this is inconvenient it sure beats rushing to the loo.

Good luck getting your diagnosis.

[Rose92 in reply to Mosey1702]

Hi, Thank you for your comment and sharing your experiences, I appreciate it a lot.

I'm glad the Low Fodmap diet helped you and helped to find out your trigger food/food group and now you're feeling better.

The Low Fodmap diet worked for me at the beginning for a very short period but after a while it didn't. Even if I eat plain chicken and rice I could still have flare ups. And I can have the same food all week every day and one day I feel completely fine and the next day I'm bloated and in pain.

But yes, I look forward the results of the tests and that'll be the best to rely on.

[casares8]

I have had similar comments about it being just constipation now, but have been told IBS for many years before this. I always thought it was not necessarily ibs, but it seems since a colonoscopy i have a loopy bowel and i assume stools get stuck round the bends and become hard. I dont like to take much in the way of laxatives as i find diarhoea is worse! I have to somehow manage, but the pain is the worst thing.

I have recently been diagnosed coeliac too.

[Rose92 in reply to casares8]

Aww, I'm sorry to hear about this, I know how hard and painful it can be.

Did you also have high calprotectin in the stool and at the end it wasn't anything significant on the colonoscopy? That's my worry a little bit as the calprotectin is really high for me for months now and not sure if that can happen only due to constipation or it's something else there.

[casares8 in reply to Rose92]

No there was nothing apart from a small polyp on the colonoscopy, which they removed and it wasn't a problem. The main problem was my dilated and loopy bowel after which they said i should not have another colonoscopy, unless anything was found through other tests. I did not have high colprotectin as far as i know. That is usually because of inflammation, and that can be for any reason

[Rose92 in reply to casares8]

Thank you for sharing this with me, I appreciate it. 🥰 I will have my first scan tomorrow morning.

[casares8 in reply to Rose92]

Good luck with it, i am sure it will be fine