My guts are still a mystery!

[Boredofmyguts]

I have posted a few times under this user name about my awful digestive system.
In recent months I've had:
v high calprotectin test of over 1600 (3+ years ago it was over 2000 - investigatioms then didnt' find anything either, but symptoms slightly changed hence being tested again).
Fit test, normal

The high calprotectin led to a colonoscopy which showed some mild inflammation and a slightly dilated caceum (part of bowel) - they followed up with an abdo CT which showed some thickening of part of the bowel (right ilac fossa) and an enlarged lymph node. They suspected chrons so I had small bowel CT enterography which showed no abnormalities. Terminal ileum was normal.
Also had a gastroscopy where they found some mild gastritis.

Had a follow up GI consult today and still no definitive diagnosis as I am essentially well - I do occasionally have a bit of diarrhoea but it's not persistent and my poo can vary from pretty solid to a bit more mushy depending on what I've eaten. I am also very windy, but am trying to keep a food/symptom diary to see if there are obvious triggers.

GI wants me to do another stool sample for calprotectin and has prescribed PPIs again (was on them for GORD but came off about 2 years ago as they weren't really making much difference to my symptoms). Currently control GORD symptoms with lifestyle and diet changes, although not always that well controlled! That's also been investigated throoughly. I had h pylori but it was eradicated. Recent gastroscopy didn't pick any infection up.

At my last blood test in July for something else I was slightly anaemic, had low vit D and folate, and my inflammation markers were high in the 30s, usually they are between 3-8 looking at my previous results over the past few years on the NHS app.

So I just feel very frustrated as have inflamation and GORD with no root cause. I will have repeat bloods soon after supplmentation so will see what they say as well. In myself I feel well apart from the reflux symptoms and wind which can be embarrasssing.

I would like an explanation of why you can have high calprotectin without a diagnosis of IBD, but no-one is forthcoming with an answer.

Assuming you’ve been tested for coeliac disease? I wasn’t diagnosed until I was 30 because “nobody had it” then. Now they know how wrong they were. There are some people who develop symptoms in their small intestine or beyond the duodenum, and the only way that is diagnosed is via balloon-assisted enteroscopy. (Ask me how I know….) Aside from that, your raised calprotectin levels are evidence that your body is reacting to something and maybe you need follow-up colonoscopies in the future so they can catch any pre-cancerous changes asap - especially if you have a family history of bowel cancer. Despite being strictly gluten-free, I struggle to maintain iron stores and sometimes B12. My GP organises an infusion to top up the iron and B12 shots and that sorts it out for a while. (Oral supplements cause more bowel problems and don’t have an impressive effect.) One of the good things about this is that since having a more proactive GP, my hair has thickened up and started growing at a normal pace for the first time in over 30 years. Who knew?

Thanks @Francestein - I have been tested via endoscopy and bloods and they were clear. I don’t have the symptoms after eating gluten(I have a friend who is coeliac and she gets very ill if accidentally glutened). I assume you were diagnosed via the balloon assisted enteroscopy. Is that a CT scan? I have just had a CT enteroscopy w contrast and no inflammation in the small intestine.
No family history of bowel cancer at all. More strokes/heart issues.
I have to admit I didn’t carry on with the iron supplements as they don’t agree with me so will talk to GP re infusion if iron still low. B12 is in the middle of normal levels.
Will see what the next Calprotectin test shows. A bit annoying as I have to take it to the hospital rather than GP but nvm. If it’s still high I’m going to push for more investigations but not sure what else they can do re the large bowel after Colonoscopy and CT,
Was thinking of getting a GI map done which is about 300!

I figured you’d know if you had coeliac disease…. The balloon assisted enteroscopy is just a scope. I imagine yours was just as, if not more thorough. I recommend telling the GP that you continue to take iron rather than telling them it disagrees with you. They are more likely to be proactive about infusion.