Diagnosis

This week, someone asked me how I found out that I have coeliac disease. Well, this is what happened…

In March 2013 I agreed to power-walk the New York Marathon with Caralyn.  I had not done much exercise for a long time so I developed a training programme, gradually building up from 5 miles, to 8, 12 and then 16 mile walks. Despite managing to go the distance, I found it hard to walk as fast as I’d done when younger and also found it really difficult going up hills. I blamed this on a combination of age and lack of fitness and didn’t take it seriously until Paul pointed out that with all the training, I really should be able to walk upstairs without getting out of breath. I did some googling and wondered if I might be a bit anaemic.

It turned out that I was severely anaemic (Hb of 7.6 and Ferritin 4). To cut a long story short, I ended up in Hospital having a blood transfusion. From that point, I had a thrice-daily dose of iron tablets plus an iron-rich diet, making sure I did all the right things for maximum iron absorption (red meat, green veg, no tea/coffee with foods containing iron, etc). I also had a colonoscopy and gastroscopy in October, both of which showed no obvious problems. They took a biopsy and told me I would have a follow-up at the Hospital within a few months. The general medical opinion was that the anaemia was caused by my semi-vegetarian diet, combined with me being a pre-menopausal woman. I was very glad that there was no catastrophic cause of the anaemia, though I felt a bit defensive too.

If you’re wondering why “defensive”, it’s because I know from both personal and professional experience that once you have had an eating disorder, there will always be some who are suspicious about your recovery.  I will probably write more about recovery from eating disorders as time goes on, but for now, suffice to say that many people believe that once you’ve had anorexia or bulimia, you will always be a bit neurotic around food and susceptible to relapse. My eating disorder feels like ancient history to me, but when I told old friends about the anaemia, I was pretty sure that at least a few were wondering how “good” my diet really was and were viewing this news, combined with the fact that I was obviously doing a lot of exercise, as a worrying sign.

I got my iron levels back to normal just in time to take part in the NY marathon. It was an amazing experience and worth a blog post on its own, but to be succinct, I’ll stick to the current story. The Hospital sent me a follow-up appointment for January, but then they cancelled it. They then made and cancelled 2 further appointments so I didn’t actually get to see the Gastroenterologist until April. He was a friendly chap who spent about 15 minutes asking questions and prodding my stomach. He concluded that I was very fit and healthy and he wouldn’t need to see me again. “But before you leave, take a seat in the waiting area. I’ll just check the biopsy results on someone else’s computer, as mine’s not working”. This was when things went downhill.

I got called back in and he breezily told me that actually, I had coeliac disease. He drew a few squiggly pictures of my intestine lining, explaining how gluten had damaged it, preventing the absorption of iron, calcium and other nutrients. The only treatment was a life-long gluten free diet. If I didn’t follow this diet, I would be at risk of all sorts of physical problems including cancer. He said he’d arrange an appointment for me with a dietitian and also that I needed a bone density scan to test for osteoporosis. And that was that.

My initial reaction was total disbelief. How could it be true that I had coeliac disease? Didn’t that involve lots of IBS symptoms? Diarrhoea? I’ve only had it three times in my whole life. I’ve travelled a lot and taken all sorts of risks with food and drink because of my cast iron bowels. Paul was incredulous when we went to India and, after several weeks of eating street food, the most I complained of was a bit of constipation because of the lack of fibre. No Delhi Belly for me! But when I read more about coeliac, a number of things began to fall into place. I’d been having bloating and stomach discomfort for months. Maybe that wasn’t just due to the iron tablets? I’d also had a few weird chicken-pox-like spots and my hair had become a lot thinner and straighter than usual. All these were signs of coeliac disease, but I’d dismissed or ignored them.

The thing is, I find it very easy to ignore my body. This, I concede, is a legacy of the eating disorder years. Anyone who has been there will know that you become engaged in a battle between the mind and the body. The body becomes a thing to be controlled and subdued. It tells you it’s hungry: you ignore it and eat less. It tells you it’s tired: you ignore it and work harder. It can’t be trusted. It is loathsome. It is the enemy. You learn to cut off from anything below the neck and you live inside your head. Now, all that was a long time ago and I can assure you that I no longer hate my body AT ALL. I am rather fond of it actually and thankful for all the things it has done and continues to do. I believe that “I am fearfully and wonderfully made”. It’s just that I can easily slide back into living in my head, so symptoms often have to be really obvious or painful for them to register. That’s why the anaemia went on so long without me doing anything and it’s also why I’d ignored the cluster of coeliac symptoms.

For the first two weeks post-diagnosis, my first thought on waking was: “Is it really true that I can’t eat gluten, or was it a dream?” In fact I had a whole series of questions as my mind began to adapt to the truth: “Given that my symptoms were quite mild, do I really have to follow a strict gluten free diet?”, “Would it be so bad if I had some gluten by mistake?”, “Can’t I have the odd evening off?” I began to trawl the web, alarmed by the huge amount of information out there, the dogmatic views, the horror stories, the conflicting advice.

Now, three weeks on, I have reached a sort of peace. I feel like a coeliac-expert already, though I also have a thousand more questions. My next few posts will be about walking, as the two main events are just around the corner, but I will return in time to the challenges of this diagnosis and how I’m coping with it. For now, I take some comfort in having found the cause of the anaemia and knowing that I’m on the path towards better health. I’m also thankful for the reminder to live more fully in my body. To appreciate it and to listen to it a bit more.

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