Diagnosis of coeliac disease

Having written a lot of posts about restaurants, cooking and other experiences, I thought it was about time I shared my experience of becoming a coeliac- how I was diagnosed. My hope is that if anyone out there is wondering if they are a coeliac and not sure how the diagnosis procedure happens or where to start with the gluten free diet this will provide some useful information.

            I was formally diagnosed with coeliac disease inn June 2012, aged 19. Statistically, the average time to diagnose coeliac disease from onset of symptoms to formal diagnosis is a whopping 13 years. As I understand it, coeliac disease is not necessarily something you have from birth, but onset is caused by a variety of triggers in susceptible individuals. For example, strong antibiotics can trigger onset, which makes sense because they kill even the good bacteria in the gut, which leaves the body more vulnerable. I’ve also read that quitting smoking after smoking for several years can trigger onset, which is interesting, and probably not something you want to tell someone who’s trying to quit!

            For me, my main symptom of coeliac disease was nausea, which I experienced when I woke up or at other times through the day. Sometimes it would cause me to vomit. I also had some diarrhoea or constipation. Another thing that affected me often was general illness- I always had an infection of some kind, colds, chest infections, UTIs. I went to the doctors over Christmas time 2011, complaining of nausea. At the time I thought I might be lactose intolerant, because I eat a large amount of cheese. The doctor did a wide array of blood tests for all sorts of things, including coeliac disease. The test results take about 2 weeks to come back and I got letter saying they were positive just before I went back to uni.

            I now had the task of getting follow up advice back in Scotland. It’s people like me who are the victims of the confusion caused by Scotland having a separate NHS to England and Wales. In Glasgow I was able to persuade my surgery in England to fax the blood test results to my Glasgow GP. I was then referred to the gastroenterology endoscopy specialist. At this point my symptoms had more or less gone away, but I was still suffering from a long lasting chest infection.

            The second stage of diagnosis is a small intestine biopsy, which involves a tube with a small camera and other equipment being passed down the throat, through the stomach and into the first part of the small intestine. Or ‘swallowing the sword’ as my also coeliac Grandfather calls it. The reason this is done is to confirm the diagnosis of coeliac disease, as false positive blood results are possible and may indicate more rare conditions. Additionally, the biopsy is useful for revealing the levels of damage to the villi of the small intestine to help determine if any vitamin supplements are necessary. The procedure itself was not too bad really; you could choose whether or not to have sedation. I chose not to because it meant I didn’t need to be in hospital for as long. They spray a banana flavoured local anaesthetic into your mouth, which you’re told to swill with. I remember that it was banana flavoured because the nurse asked if I was allergic to banana (I’m allergic to several fruit and veg), and even if I was I’m pretty sure a banana had been nowhere near that spray! Then they pass the tube into your throat and you have to swallow it. They pump your stomach full of air so that they can see the stomach (it’s empty because you’ve not been allowed to eat) so you burp quite a lot. It sort of feels like you are being sick, but of course you’re not because you’re stomach is empty. Actually inside you can’t really feel all that much, and the whole procedure is over in 10-20 mins. Then they give you a piece of paper telling you not to eat for an hour and to go straight to A and E if you start vomiting blood (as if you wouldn’t anyway?!). I sat around for a few minutes until they were satisfied I wouldn’t pass out or anything and then I was free to go. Personally I get really grouchy if I skip a meal, so I started eating pretty much as soon as I left the hospital, and was probably eating a hearty lunch before my allocated hour was up. It didn’t do me any harm, and I’m not one for religiously following medical advice (of course I won’t drink when I’m on those antibiotics, but whisky doesn’t count- right?).

            No one told me how I would get the results, they only told me that I wouldn’t get it through the post, I wouldn’t get them over the phone and there was no way I could get them in person. What options does that leave? Semaphore?! Anyway it had been a long wait to hear anything, I rang my own GP and they’d heard nothing. At this point I was living back in England on the long summer break, which didn’t help with keeping up with what was going on. I’d more or less given up hope of ever knowing the results until I was living back in Glasgow. It must have been 6-8 weeks later when I got the results. It was a letter which said something short and to the point akin to ‘your recent biopsy confirms diagnosis of coeliac disease’. I cried. I’d almost managed to convince myself that I wasn’t coeliac; I was symptom free and healthy! I knew this would affect me for the rest of my life.

            I’ll tell you about how I came to terms with my diagnosis and slowly converted my life to be free from gluten in another post, because this one seems pretty long already!