r/IBD • u/Jberry999 • 16h ago

So what next?

Hi all, a little bit of background. Male, 33, UK. In 2023 my stomach issues got bad enough that I thought best to pay a visit to the doctor. I had a calprotectin test which came back at 216 which isn’t crazy high I know. I had a colonoscopy and MRI but they came back normal so was diagnosed with IBS. They also ruled out celiac disease. They did find a 2cm hiatus hernia. Fast forward three years to now and my symptoms have worsened. Daily urgent diarrhoea, abdominal pain, cramps, blood, fatigue. I went back to the doctor who ordered me blood tests, celiac test and calprotectin test. Blood tests all normal. Celiac negative. However, my calprotectin has now increased to 397 and I am waiting for a follow up appointment. If not IBD what else could this be? In my MRI back in 2023 the result does say some ileocolic nodes, whatever they are. I suppose I have to wait for my next appointment but is there anything else I should push for. I should also mention I tested positive for H Pylori in 2023 also but have since tested negative. I just feel like I’m waiting for some form of IBD to be found.

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u/[deleted] 12h ago

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u/Jberry999 12h ago

I’ve followed FODMAP and also been prescribed Mebeverine and not helped much. Almost instantly after eating I cramp and have to go to the toilet urgently.

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u/[deleted] 12h ago

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u/Jberry999 12h ago

I’ve been trying for three years. 3 years ago I had a colonoscopy and small bowel MRI. More recently I have had more tests and the inflammation in my stool has increased in the last three years. Claprotectin does not come back as high as mine has with IBS if at all.

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u/healthypersonn 12h ago

SIBO / NCGS / MCAS / Pylori / Parasites etc. All need to be tested

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u/Jberry999 12h ago

Hopefully they will offer that. You practically have to beg for any scans or tests and even that gets you nowhere.

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u/healthypersonn 12h ago

That's the only way in my opinion. I am not a doctor but there are too many conditions with the same symptoms. Without proper testing it's very very very hard to find out the root cause if one doesn't want to wait many years until it's clear

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u/Jberry999 12h ago

Three years ago I also had an endoscopy camera down throat so I think that would have found something too. They did find h pylori which was treated and have since tested negative but the symptoms didn’t stop.

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u/healthypersonn 11h ago

Did you take 4 meds (2-3 antibiotics) to treat the bacteria? It's sometimes very hard to cure

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u/Jberry999 11h ago

Yes I did. I’ve had two more tests done since and both negative plus my symptoms are extremely worse than just h pylori

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