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Alternative diagnosis to IBS?

Hi all, have struggled with accepting the IBS diagnosis as it’s so hard to believe that IBS can be so severe. I’ve tried all IBS medicines under the sun: mebeverine, peppermint oil, buscopan, silicol gel, probiotics, digestion tablets, charcoal tablets, citalopram, and finally amitryiptaline which I’m now at the highest possible dose for IBS. None have worked for me sadly. Have been tested for IBD, coeliac, and even endometriosis (because of the pain) and all negative. I don’t believe it is diet related as no matter what I eat, even if it’s a small amount, I flare up. Now on FODMAP but don’t have much hope. Are there any possible alternative diagnosis’?

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Could your problems be part of an underlying condition they haven’t yet tested you for perhaps?

For example many with autoimmune diseases such as Hashimoto’s Hypothyroidusm, Graves, Psoriatic Arthritis, Lupus, Rheumatoid Arthritis, Sjögren’s, Scleroderma, Ankylosing Spondylitis and Vasculitis will have digestive problems. Sometimes this is the first way these conditions show up.

Basically the autonomic nervous system is regulated by the vagus nerve, which is the longest nerve in our bodies and runs all the way down from our heads to the stomach. So many people with these diseases will have some GI involvement. For some it will be very severe and can be misdiagnosed as IBS but actually be part of a systemic process.

It may be worth asking to be tested for these autoimmune diseases - which should include antibodies, thyroid panel and inflammation markers.

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Ps the low fodmap diet and gluten free would probably still help a lot even if there’s an underlying cause - certainly won’t harm.

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Diverticulitis (https://www.nhs.uk/conditions/diverticular-disease-and-diverticulitis/)? GP's think this is more linked to age! But have a look on the NHS website. However, I would keep a symptom diary for a week (including food, work, exercise, stress etc) and take that to see a GP. But do go and see your GP and talk though the impact on your life.

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Stress can make it flare up big time.

Good thing for ibs is exercise. Helps your digestive system to work properly and relieves stress also.

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I have ankylosing spondylitis and my first symptoms were mistaken for IBS. I continually questioned this as didn't feel my symptoms matched IBS for example I would often have terrible diarrhoea at night and IBS is supposed to stop at night... Once I was finally taken seriously and referred to rheumatology I was put on naproxen with omeprazole and my IBS symptoms disappeared literally overnight. Googling showed that years ago my IBS symptoms (basically diarrhoea every day, very urgent) would have led my GP to investigate stomach acid, which makes sense as the omeprazole stopped the symptoms. I've discussed this with my rheumy and she's recommended to my GP that I be referred to gastro just for confirmation and a treatment plan. I'm due to start biologic therapy so will be coming off the naproxen and omeprazole and don't want the constant diarrhoea back thank you! I think it's worth asking GP about acid production as seems it's not something they think to look at anymore, the focus being on ruling out cancer and ibd.

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Hi, just a small note- on the Fodmap diet, you must be strict. Read the ingredients of everything. It has made my life worth living again. Read the book also as it explains why it works. Good luck

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Hiya xx

I have literally only this morning looked at the symptoms of Bile Acid Malabsorption (bam) and they all fit for me having either type 2 or type 3. I am going to get my gp to look further into this but everything fits. I have battled for 20 years with ibs and had it relatively under control until I had a stomach infection 4 years ago which left me, in some circumstances, unable to stop my diarrhoea which left me housebound with anxiety. Now I’ve got my meds balanced and seem to be ok for now but I still have these bouts of eating any foods and then within half an hour having to rush to the bathroom with violent d passing. However due to the meds it’s not as often.

This read this morning has proved very informative and interesting to me and has never come up before.

I will be getting this tested and if confirmed then I’ll be on another meds but it would be nice to actually feel like I’ve finally got a label for an illness that has been passed of as extreme Ibs for the last 4 years.

Take a look and see if it fits, I hope you get some answers xx

uhcw.nhs.uk/bam/what-is-bam/

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Have you been test for SIBO? I've had IBS on and off for years, but since a recent bout of gastroenteritis, it has been worth. My doctor ordered a breathe tests, and my SIBO numbers are off the charts. I start the treatment this week. My pain has been constant and I was going back and forth between diarrhea and constipation. So glad to finally have a diagnosis.

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I would add Candida to the list of things to look into, Sophie.

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I had candida oooh it was nasty !! Had it for 5-6 months before anyone spotted what it was , i felt awful.

I killed it off with no sugar no processed food no yeast gluten or dairy .... six week of eating veg and chicken and loadsa probiotics and it died off, that was a nice experience!

Still stick to no yeast gluten and dairy!

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hi sophie

I have had pain based so called ibs for years. it's like menstrual cramping. endometriosis had been suggested by I wasn't given a laparoscopy. what other symptoms do you have ? I like you question the ibs diagnosis for the same reasons as you but have had not luck getting any other diagnosis

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(Sorry if this is TMI) Soo I’ve had IBS for 5 years (was 15 when diagnosed) started out with just being bloated and wind every evening then gradually over the years pain became a massive problem, with pain after anything and everything (inc just a cup of herbal tea in the morning) also constipation, wind, pain on intercourse, massive abdominal distension after anything I consume, I have since lost my appetite, and it gets to the point where I make myself vomit because of the pain. Nothing helps! :( and no GP wants to refer me on any further than a dietician, so not getting much luck but I’m determined to get something more out of it than IBS!

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Im sorry to hear your story. I get a lot if wind and pain but not caused by anything specific. I am way older than you and have had this on and off for years. I hope you get some luck trying to sort it out

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I was given amitryiptaline as part of my pain relief treatment for sinusitis. It didn't work. When my GP suggested it for the pain in my hand, road accident, I politely told her where she could shove it. So before she even thinks of giving it to me for IBS, she had better think it out again. She reckoned being spaced out (half a tablet) was better than the pain. Me, give me the pain anytime.

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Have also tried citalopram, which was equally as useless.

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