I have often wondered whether I would ever see this day.  Not specifically Jan 29 2010, which is not an especially significant date for me.  But it has been very significant in that I have picked up my first ever prescribed gluten-free food.

Not that we have an official diagnosis or anything like that, but I have finally found a consultant at Bart’s who understands the important thing here is not a label to attach to a condition, but an appropriate treatment for whatever the underlying condition may be.  So, at the beginning of December, he promised me he would write to my GP recommending a gluten-free prescription.  Phew.

Needless to say, I’ve been checking with the GP ever since to see whether they’d received the letter.  Up until last week there was no joy, but since I had pre-booked an appointment for yesterday with the GP, on the basis that a month and a half was quite sufficient time for the consultant to have written, I chased the department last week.  They apologised, wrote the letter and posted it last Thursday.  By Wednesday of this week it had failed to arrive, probably because the postal deliveries in our neighbourhood can be something of a lottery.  Booted the department again, who said they would fax a copy over to my GP, and turned up to see her yesterday morning as planned.

Not that the fax had been seen by her but, thankfully, she trusts me not to fib about these things and was prepared to start the gluten-free prescription right away, while she waited to see what the letter might hold.  We picked three products at random - white flour mix, multi-grain bread and pizza bases - and decided to leave the rest until we were both more clued in on what we should or shouldn’t be doing.

For some reason, it didn’t occur to me to check whether the things we were ordering were lactose and/or soy free.  I doubt it would have done us much good anyway, as each product appeared as a line on her computer and didn’t have additional information to assist us, but I probably should have given it more thought.

And, today, my first gluten-free prescribables arrived at the pharmacy.  These were the white flour mix and the pizza bases.  Unlucky for me, the flour mix contains both lactose and soy, so I shall probably be keeping that for some time when I’m catering for a group, or maybe Freecycle it out to someone else who can use it.  I suppose it might be handy in an emergency, but the kind of emergency that will make me want to make myself ill would probably preclude taking the time to bugger about making bread, cakes or pastry.

Just as well the pizza bases look OK, then

However, this did get me wondering: how many of the gluten-free prescribables are also lactose and soy free?  In the mainstream shopping environment, this is a pretty tall order, and I have regularly been frustrated to see things containing either lactose or soy for no obvious culinary reason.  If Montezumas can make amazingly good chocolate without either, I don’t see why certain other manufacturers can’t.  For example.  So for a while I had a bit of a wobble, as it seemed like I might not find this whole prescription process as helpful as I’d hoped.

My 2010 Coeliac UK food directory hasn’t arrived yet, so I couldn’t check all the manufacturers in there, but the lovely Kathryn I reached on the hotline emailed me a list of them, complete with email addresses, so I’ve started the process of contacting them all to ask what they have that might work.

My first email left at 16:06.  If I’m honest, I didn’t expect any answers on a Friday afternoon, but hoped to get some in on Monday and Tuesday, by which time the doc should have sorted out what number of products I should be having each month.

So far, I’ve had emails from two of the manufacturers contacted, which is an encouraging start, and at least one has promised to send me a sample so I can see whether their food is worth eating, as well as being safe so to do.  Fingers crossed next week brings in some more responses and I can finally get myself sorted.

Two hours to go before the gastroscopy/colonoscopy and I’m getting seriously nervous.  Which is daft when you consider I’ve had both procedures before.  In fact, I’ve never before been sedated for a gastroscopy, so it should be easier this time.  So why am I so bloody twitchy about it all?

H is due into pre-school this afternoon: I’ll be dropping him off on my way to the hospital, since it’s just 5 minutes away from there.  And S will pick him up again at the end of the session on his way to collect me, so nothing to worry about on that front.

And, let’s be straight, I’ve been waiting for this for quite some time now, as it’s the only way we’re going to get a clear answer about what’s wrong with me.  And I do want that answer, I really do.

What I’m most scared of, I think, is the idea that we may not get an answer.  I don’t know how much longer I can go on without some kind of diagnosis beyond the accurate, if not very helpful, “well, we know there’s something wrong with you”.  I don’t want to be the poster girl for some mystery gastric condition.  After 15 years what I really want is to know what the hell is wrong with me.  I’d like to know what it’s like to leave the house and not wonder where the nearest toilet will be.  On Saturday, I’d have liked to eat some breakfast before doing our stint for Marie Curie, but I didn’t dare because I had no idea where the closest loo was, and also didn’t want to run the risk of having to run off in the middle of our set.

If you’ve never suffered anything like this, the whole idea of life like this must be quite odd.  But when you’ve had diaorrhea for 15 years, 7-25 times a day, depending on how well it’s going, this is how life is.  The only thing that has ever helped is going gluten-free, which is the biggest clue we have as to what’s wrong.

Since last October I have been making sure I get enough gluten in my diet to give me a positive blood test, should I be one of the llucky ones who do show up on a blood test.  I’m not.  But I have carried on eating the gluten because the only way to get a diagnosis is for there to be sufficient damage to my gut when they stick the tube down my throat today.  I’m just hoping I’ve eaten enough gluten for it to show.  I’ll be royally pissed off if there’s nothing there to see, having gone through hell over the last 6 months.

Arguably, a diagnosis is not all that important, since we already know the way to cure me is to cut gluten out of my diet.  Both S and my psychiatrist are desperate for me to get off the gluten, because we know it’s causing problems with my depression.  But if I do have coeliac disease, the diagnosis is actually very important.  For one thing, I’ve had it for some time, which means I’ll need a bone density scan to check on the effects of calcium malbsorption.  For another, I’ll be able to get hold of gluten-free foods on prescription, which is worthwhile considering the cost of the stuff in the supermarket and the fact that, should we move up north, availability of such foods may be limited.

Then there’s the fact that we may want to give H a sibling, and my history of recurrent miscarriage means that will be difficult… so a diagnosis of coeliac disease will mean getting help sooner rather than later, which is not to be sniffed at when you’re already 37 and know your chances of getting pregnant are slimmer by the year.

And finally, it’s a whole lot easier to tell friends and family you have coeliac disease than to try and explain that a mere intolerance should be treated in the same way.  I’ve had too many people suggest that just a bit of gluten won’t do me any harm when I was on the exclusion diet, that I know the difference a positive diagnosis will make on that front, too.  It doesn’t matter that my future is gluten-free, whatever the diagnosis proves to be.  I still have to function beyond the confines of my own home, and that’s easier if I can simply give people a label: it seems it’s the only thing some people will either accept or understand.

Anyway, time to get H ready for pre-school, and then we’re off.  Wish me luck.

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.