Sunday, 20 November 2016

Coming to terms with the long journey of gluten intolerance.

There comes a day when you get sick of waking up feeling like a boa constrictor is squeezing your stomach every morning, not to mention the unpleasant sounds that seem like your body is tuning up for an experimental industrial noise album... For some this is far too often an occurrence, one that finally became enough for me in the past few months, that led me to start what's going to be an awfully long journey of discovering if I'm coeliac.

You don't tend to read much about the journey along the way of discovering if you're coeliac, sure the symptoms are discussed enough, but what is it actually like trying to get to the bottom of your never-ending gastric symptoms and persistent health issues, that often leave you feeling like you should be living in a protective bubble. Over the next year I'll be sharing my long, bloaty journey with you.

For me, I've always had problems with my health, from persistent colds every winter to horrendous bouts of ibs, issues that you often wouldn't think were connected. But how many people would think to put two and two together, you often see constant anemia and abdominal pain for instance listed amongst the many symptoms of gluten intolerance, but how may gp's would think to check for coeliac disease when they're prescribing you with another round of buscopan for those pesky bowel issues?

After years of being plagued with symptoms it finally took a horrific case of food poisoning last summer that left me lovingly recreating that scene from Team America to realise that it might just be something else that's wrong, as I was left with more than just a sore stomach afterwards, symptoms that I didn't put together until recently as possible coeliac disease.


Now, you may think that it's just me being a bit over cautious, sure I've been suffering with constant bloating, cramping, and chronic gas since my bout of food poisoning over 16 months ago, but surely my body should have long recovered from those two weeks of feeling like I was undergoing an exorcism... After getting nowhere with my gp, I finally ended up self diagnosing myself as having lactose intolerance in the months following my food poisoning, after dairy left me feeling constantly gassy and ill afterwards. Sure for a few months the symptoms seemed to calm down, but they always came back to haunt me, it was as if my stomach was constantly tuning up an orchestra! Leading me to wonder if perhaps it was something else that might be causing my health problems. 

I'll spare you the long story of months of hilarious chronic flatulence, but after a very long summer of symptoms that refused to stop I finally had enough and paid my gp a visit, hoping to get to the bottom of it.

I was almost relived when my gp agreed to have me come back in the following week for blood tests to check for coeliac disease, those pesky symptoms that refused to stop were finally being taken seriously, somewhat helped along by the diagnosis of a family member as coeliac in recent years.

A weekend of binge eating cake and bread followed suit, sure I felt horrendous, but it was all in the name of progress, and heck any excuse is good for more cake, right?! Days later I was having my arm punctured to take several vials of blood, with an appointment booked in a week later to follow up on those results that I was almost dreading and looking forward to at the same time.

You'd think that the week long wait is bad enough to find out your results, but the long journey hadn't even begun for me yet. Returning to see my gp and go through those results was somewhat of an unusual experience, my gp glossed over most of the results, informing me that the initial blood test came back negative, but my IgA deficiency results came back positive as high risk of developing coeliac disease, which was enough to have me referred to see a consultant at my nearest hospital for a biopsy. At this point I was somewhat relieved, at least I'd finally be able to see a consultant who'd help me to get to the bottom of my problems, but that was before I'd received the unfortunate letter about my referral.

Reading up on biopsy's whilst I waited for that referral letter to drop through the letterbox I was anticipating a couple of months wait at least for my consultant appointment, then that fateful letter arrived.. 40 weeks... I thought I'd misread it at first, 40 weeks is an awfully long time to wait to even see a consultant, let alone have my biopsy.

As I type this up in early November there's still 36 weeks to go, by that time I could have self diagnosed but as much of a pain in the (metaphorical) balls the wait will be, I'll be doing it properly and waiting for the biopsy results to confirm or deny coeliac disease. For now, I'm getting used to having Schroedinger's gluten intolerance, but just how do you cope whilst waiting such a long time to even talk to a consultant about your problems?

Some would call it misguided advice, others would say that there's no harm in trying it, so under the advice of my gp (and gluten intolerant relatives) I'm having a couple of gluten free weeks to see how my symptoms are without any pesky gluten in my diet. Given that I have such a long wait, with no cancellations looking possible at this point to be seen earlier, there's no harm in trying it out - especially since I'll have 6-8 weeks notice prior to my consultant appointment, plenty of time to get gluten back in my diet if it is coeliac disease that's been causing all of my problems.

The wait for me is the worst part of it all, knowing that I won't be any closer to improving my health for several months at least. Whilst I eagerly await the day when I won't have to blame my chronic gas on friends dogs, covering up the loud swishing, squeaking sounds coming from my stomach, a winter without tissues constantly tucked into my pockets and the embarrassment of chronic chilblains that refuse to leave my hands every winter. I've already put up with so many health issues over the years that what's another year to wait for progress? At least I have a gluten filled cake binge to look forward to before my biopsy, whenever that may be.