As friends and family will know, I’ve been going through seemingly interminable tests and examinations in a bid to work out what on earth has been wrong with my gut for the last decade and a half.  I’ve had the nice little coverall of IBS applied for most of that period, and I have pushed every five or so years to get another referral to a consultant who might have a new take on the problem.  Medical science does, after all, advance, and I’m ever hopeful that I will not have to live the rest of my life with these unpleasant symptoms.

So a couple of years back, in 2007, I had one of my periodic efforts to get the situation looked into once again.  I was referred to St Bart’s and the lovely doctor who saw me confirmed that there had been some advances and she was hopeful they could at least try and nail things for me this time.  Since the other reason for me trying to sort things out was a desire to lose weight, which is difficult to do healthily when fibre makes your gut go nuts, we also agreed to a dietician consult after all the tests were through.

Fantastic, thought I, and cheerfully attended outpatient appointments for a colonoscopy, a SeHCAT scan, blood tests, fecal and urine samples… you name it, we tried it.  The one test to reveal anything interesting, though, was the SeHCAT scan.  It was also the most pleasant by far, as all it involves is lying fully clothed in a scanner so they can get a baseline reading, taking a capsule, coming back a couple of hours later to take another reading, then coming back a week after that for the final reading.  Non-invasive and utterly relaxing: you’re even allowed to fall asleep if you want.

What the SeHCAT scan showed was that I had severe bile salt malabsorption.  Googling it back then didn’t really help, however, as it simply brought up lots of very vague stuff and statistical analyses.  But I duly went back to St Bart’s, was seen by a different doctor who told me that the cause of all my ills was my bile salt malabsorption, and all I needed to do was take a certain drug, cholestyramine, and all would be well.  I did think to ask what the causes of the malabsorption were, since I knew from past experience cholestyramine did nothing for me, and he mumbled something about maybe getting me tested for diabetes but that, I’m afraid, was that.  Pushing hard to make sure that the dietician referral was made, I went off and got my prescription for cholestyramine filled.  Let’s just say I still have 2 weeks’ supply of the stuff left and I probably ought to take it back to the pharmacist.

Fast forwarding on a bit, I eventually - after having to kick when they didn’t make the referral - got to see a dietician at RLH.  On her advice, I started an exclusion diet to see, first of all, whether it made a difference to my symptoms and, if it did, to work out what the triggers were.  The good news was that going on the exclusion diet really did make a difference, and I started feeling human again.  The even better news was that we managed to identify four triggers: oats, rye, wheat and barley.

Of course, at this point the alarm bells started ringing, for my dietician and for me.  It’s not uncommon for people to be intolerant to one food.  It’s somewhat less common for them to be intolerant to two foods.  But there’s only one thing that brings up a reaction to the four foods I identified as triggers: coeliac disease.

You’d have thought that, in all this time, they’d have tested me for coeliac disease.  And you’d be right.  I’ve had the bloods done for coeliac disease on several occasions and each time they’ve come back normal.  However, there is a small minority of people who don’t show positive on the blood tests, and diagnosis in those cases is often a lengthier process, largely due to inexperience of the doctors concerned.  So I trotted off to my GP and told her what we’d found, and agreed to start eating gluten again for at least 6 weeks so we could conduct blood tests under the ideal circumstances, since I’d been off the gluten for some 3-4 months by that point.

And there began the most unhealthy relationship I’ve ever had with food.  Knowing that you’re eating something that makes you ill does not make you feel good.  My depression, which had improved greatly while I was off the gluten, took a complete nosedive.  For six long weeks I ate gluten until my blood test.  Then I had to keep on eating gluten because the next step, whatever the blood test result, was going to be a gastroscopy.

Eventually, I was able to make an appointment to see a doctor about my test results, only to see the practice bully, who was utterly vile to me for daring to make an appointment with him because my normal GP was absent for 3 weeks and I needed to get thing actioned sooner than that.  Rather than carrying out what the other doctor had promised, he insisted on making a new referral for me back to St Bart’s, where they would ‘order a gastroscopy if they thought it necessary’.  Charming.  Still, hopeful that the Choose and Book system would be my friend and get me a swift appointment with the gastros, I was in for a shock.  No appointment until the middle of January this year.

And so I came to meet my current consultant, the lovely Prof Kumar.  Having had a very thorough first appointment with her, she ordered a joint gastroscopy and colonoscopy so we could see what was going on.  The colonoscopy I don’t expect to show us all that much.  The last one was fine, after all.  But the gastroscopy is a different matter entirely.

I’ve had three gastroscopies to date, but all have been in relation to gastric ulcers, which I also suffer from.  Not once have we actually checked the small intestine to see whether there was anything wrong there, but then, there was no need to investigate that if everyone thought I had IBS.  So this is make or break time.  Either the investigations will show I have coeliac disease or they won’t, but this is the closest I’m ever going to get to an answer.

What do I think the answer will be?  Well, if one looks at risk factors and other boxes to tick, here’s where we’re at:

• Documented bile salt malabsorption that doesn’t respond to cholestyramine
• Reaction to wheat, barley, rye and oats
• Irish ancestry
• Documented psoriasis
• Chronic depression
• Recurrent miscarriage

Broadly, if there’s a risk factor or indicator for coeliac disease, I seem to have it.  

But back to tomorrow.  I’m due this wonderful dual investigation at 1.30pm.  Naturally, knowing that I was supposed to be taking various laxatives and so on beforehand, I eventually got round to reading the leaflets and so on at about 5pm.  To be fair, I’ve had hideous sciatica for the last three days and hadn’t really had my mind focused on anything much beyond the pain, as I’d run out of tramadol.  It was only getting out to the out of hours GP for a prescription that allowed me to be clear-headed enough to even think about preparing for tomorrow.

So at 5pm, I learnt that I should, yesterday, only have eaten foods from a given list.  On reflection, I think I probably did only eat foods from that list, so that should be OK.  However, what I hadn’t sussed was that I was supposed to have had a breakfast from the approved list at about 7 am, nothing but clear fluids for lunch and then laxatives for afternoon tea and dinner, along with plenty of fluids.  Having only just had breakfast before reading the leaflet, this was not good news.

The rest of the problem almost certainly falls into the realms of TMI, so I’ll spare you the details.  Let’s just say that, if you’re ever in the situation of waiting for a similar investigation, make sure you dig out the notes at least a couple of days before the big day.  It’ll save you the rather unpleasant night I have ahead of me.

But it should be worth it.  I may be sedated but I should still be conscious.  And while it may sound strange to some, I think a diagnosis of coeliac disease would be a relief: I’d actually be able to treat my condition and heal.  Whatever the outcome of the investigations, gluten-free life is where I’m heading, if only because I know that’s what made me feel better for that brief period last year.  If anybody’s out there reading this tonight, keep your fingers crossed for me tomorrow.  This could be the start of a healthy new life.