Hi Scottio19. Welcome to the forum.

We're not doctors and we can't make any diagnosis. I have no medical qualifications.

All of your tests have come back clear, which is excellent news, but I do wonder if you excluded IBS far too quickly. One month taking IBS medication simply isn't long enough to know that IBS isn't the problem. 

I suffered from IBS for 40 years so I know exactly what it's like. It started when I was about 24 and has been an unwanted companion ever since. I have a lot of personal experience. IBS is not a disease that sticks to a schedule, or plays by the rules of logic.  The only effective way to know if you have IBS is to stick religiously to a low FODMAP diet for many months (no cheating!) and see whether your symptoms improve. If they do then you can cautiously add back items one at a time to the diet to see if they cause reactions. In my case, baked beans and mushrooms, both of which I love, turn out to be triggers!  I can also tolerate only low levels of lactose, so I've adjusted my milk intake accordingly. No more lattes for me! 

Following a low FODMAP diet isn't something to be undertaken lightly - it's a massive, massive, commitment. Nor is it something you can do without the help of a trained dietician. There's no point making a half-baked attempt at it, because you'll waste your time, and probably decide it isn't working. 

If you're still on good terms with your GP then you can ask for a referral to a dietician for help to discuss your digestive problems.  If the dietician thinks that a low FODMAP diet will help, and you agree, then you can try it under supervision. 

I must emphasise that I'm not a doctor, and anything you do must be under the guidance of a properly qualified person. 

Thanks I've actually had IBS for 4 years and it's only flared a few times but buscopan has always done the trick. This feels different to the cramps sharp pains that those bring, this is a sickly uncomfortable dull feeling plus indigestion. I've not tried any diets and it will be something I would consider but I'm terrified this is much more serious given the length of symptoms and no sign of improvement.

Pancreatic cancer is so rare in a person of your age that it shows up as 0 incidence in the stats. Even if you were 10 years older, then there are still only 3 cases per year in the 40-45 age rate in the entire country. 

I remind you that I'm not qualified. I only ask the following question because I hope it will reassure you: 

- What part of your body was imaged by the CT scan? Was the pancreas included? Presumably it was normal.  

- Did your blood tests include CA19-9?

- Are you a drinker and/or a smoker? How much do you consume? 

It was an abdominal scan so the pancreas would have been included. Not sure how effective it would be at screening it as MRCP would obviously be the better option. 

I've not had any bloods done apart from liver and kidney ones from doctors. I paid for the bilirubin ones but not the CA-19-9. 

I don't smoke and now I don't drink (a casual drinker beforehand maybe one or two nights every month where I'd social drink). I've looked at stats and in my age group only around 5 or 6 people a year in Scotland are diagnosed so it's pretty small but then again why not me.

I think I'd ideally get the MRCP scan to know for sure but my doctor won't refer me for scans after the private CT was normal. I feel on the verge of a mental breakdown which is unfair on my kids and wife but the terrible thoughts won't leave when the pain is daily and constant. I think my GP thinks I'm nuts but I'd rather do anything else than go see them, I wish the pain would go and then the worry would too. I don't mind living with discomfort and pain , it's the not knowing if it's this disease or not. 

Thanks for taking the time to reply, it means a lot.

Hi Scottio19.

The problem with tests is that there isn't a test which will tell you that you're well. There are only tests which tell you you're ill.  So you can go from test to test to test, picking up clear results, but always believing (or hoping) that the next test will prove that you're ill, and when it doesn't - well, there's always another test you can try. 

You're worried you've got a disease which is already pretty uncommon as cancers go, and which at your age you have a less than one in a million chance of contracting, and for which you have no risk factors. You also have a clear CT scan, a clear bilirubin test, a clear liver function test, and so on.

Is there any test which would convince you that you don't have pancreatic cancer? 

An MRCP scan would be one that would end the fear of PC for me. I've read too many stories that CTscans haven't picked it up and the other tests due to the difficulty in diagnosing as it's one of the most difficult ones to diagnose. My fears seem irrational to most but my pain is very real and just won't leave in over 4 months. 

I don't think there's much more I can say. I did consider making some suggestions, but then I realised I would be acting as a unqualified surrogate doctor. So all I can do now is send all my best wishes and good luck. I really hope this works out for you. 

Had result of a Feceal fat test which was double the normal range showing possitive malbsorbation.

I'm pretty devastated right now and extremely scared as on the notes this indicates a problem with Gallblader or Pancreas.

I remind you that I'm not a doctor and I have no medical qualifications. 

I suggest you go back to your GP with the result of the Fecal Fat test and see what the GP suggests as the next step.  If the GP is open to suggestions then you might ask for a CA-19-9 test.

You're still too young for pancreatic cancer to be a serious contender. However, this test might indicate a non-cancerous problem with the pancreas or gall bladder, and that might explain your problems. 

Had a faecel elastase stool test and it was normal at 451 (above 200 is normal).

Still in limbo suffering with malsorbation with no idea why, I was given creon before the elastase test but not sure I should be taking it if that came back normal. My normal GP is of no use so need to wait till Wednesday to see gastro.