Coeliac Disease — a diagnosis

Getting my head around what this means for me and my family

The ‘Free From’ aisle

I’m standing in front of the Free From range in my local Sainsbury’s. It looks small and unappetising. Strange, that. In the past I’ve always thought that the range looked pretty extensive and have thought that those people who needed a gluten free diet were lucky to have such choice.

But actually the range is not really very big.

It’s actually not that big at all.

Not when compared with the vastness of the in-store bakery section, or the plethora of dessert choices in the chilled aisles.

Not when you are looking at the limitations of your eating possibilities for the rest of your life.

Diagnosis

I was diagnosed with Coeliac Disease this morning.

This is an autoimmune disease when the body tries to fight against gluten and damages the villi in the small intestine, causing the body to stop absorbing nutrients from food properly. It has serious implications if undiagnosed, like Osteoporosis or even bowel cancer. The effects can be corrected with a gluten free diet, but if you have it, you have it for life.

I wasn’t expecting this and I’m trying to process the implications.

Here’s my story.

Feeling tired

Over the past few years I have felt tired. Sometimes it has felt like a mild ‘oh, I can’t really be bothered’, other times it has felt like I have had to drag my body around and force myself to put one foot in front of the other. I had Glandular Fever as a student and at times it felt like that was recurring.

I have four children, four jobs (all interrelated music work) and I try to fit in exercise when I can, so I assumed it was just life making me tired. I didn’t really have time to go to the doctor and I didn’t want to make a fuss about it all. I have also had a history of anaemia throughout my life and partly put the lethargy down to that, taking a few supplements every now and then to keep me going. After all, that’s what the doctors told me to do whenever the blood tests came back with a low iron count. I had a couple of unexplained episodes when I fainted through experiencing severe bowel pain, but these quickly passed and life went on.

I suppose, in retrospect, the bloating and stomach discomfort I was beginning to feel on a regular basis should have alerted me to something. I was increasingly needing to take painkillers, but I could nearly always put this down to something else like stress in my new job, an upcoming concert etc. My mum was diagnosed with Ulcerative Colitis a few years back and she was extremely ill with this before it was diagnosed: food passed straight through her and she lost loads of weight. I was never anywhere near as ill as she was and so assumed my symptoms were nothing, even if I had mornings when I seemed to spend my time going to and from the toilet before leaving the house. I hadn’t experienced constant diarrhoea and weight loss, and I didn’t feel ill as such…

Fed up with exhaustion

We had a wonderful family holiday in the summer 2018. It was everything you could ask for in a holiday: great weather, wonderful accommodation, delicious food cooked by a loving husband. We had crunchy French baguettes and fresh pastries from the nearby boulangerie every day. So relaxing. So stress-free.

But I came back exhausted. Oh so tired. The worst sort of lethargy where I felt like crying all the time because everything was so much effort.

I couldn’t go on. I knew I had a problem if I felt that tired after such a wonderful holiday. I finally made an appointment to see the doctor.

It was a quick consultation with me saying I was tired and a blood test being arranged. As a last-minute thought, I mentioned that I did get a bit of bloating sometimes, so could I have the Coeliac test. There was no particular rush and I couldn’t make another appointment for a month so finally had the blood test at the end of September.

Another month went by before I got the results and I was called back to the surgery. I was simply expecting the usual: you’re a bit anaemic, take iron tablets.

Complete shock

It was a complete shock when the doctor said that I had a positive result for Coeliac Disease. I couldn’t quite believe what I was hearing. I immediately thought about all our family meals and how awkward it would be to have to eat differently. What would my husband think? He cooks most of our food and this would have a direct impact on him. How annoying for everyone to have me say I had to be gluten free. How intolerant I had been in the past of other people who needed special dietary requirements. Surely I wasn’t going to be one of them myself?

I had to get a copy of the results and go over them with a GP friend to really begin to process what I had just heard. My Anti-tissue Transglutaminase Antibody (tTG) was high, showing that my auto immune response was fighting the gluten. I was also deficient in other vitamins, such as vitamin D, and yes, slightly anaemic.

I gradually began to accept that something may be wrong and the strange thing after receiving this result was that I began to notice the symptoms more. I realised that I had discomfort in my stomach with bloating and bowel pain most days, not just on the odd occasion. I felt run-down and lethargic. It was as if I now had permission to acknowledge the aches and pains. Maybe the news was not so bad after all: a definite result would mean that I could change my diet and begin to feel well again. That sounded good!

I decided to make the most of eating as many foods as I could. The doctors all said I had to maintain an ordinary diet so that further tests would show a clear result. Christmas was a particularly joyous affair when I ate whatever I liked, regardless of the consequences.

Confirming tests

To completely confirm Coeliac Disease it is necessary to take biopsies of the small intestine to see if there is damage to the villi in the gut lining. I saw a consultant at the Queen Elizabeth hospital, Birmingham, just before Christmas and an endoscopy was arranged for the new year. Four months after having the first blood test results I found myself in a hospital room with a tube down my throat. An endoscopy is not a comfortable experience, but at least it is quick.

Three weeks later I was told that the biopsies showed damage and it was definite that I had the disease. Five months of waiting and wondering were over.

In retrospect, my last five months of feeding freedom!

Processing

I’ve started the new diet now and feel as if I am daily processing the implications.

Gluten free bread is really not very tasty. It’s the texture that’s different. I’m going to try to eat alternatives I think. I keep fantasising about the fresh seeded wholemeal loaf I used to love eating with butter and marmalade for breakfast.

And chocolate tiffin squares.

And croissants…

I’m going to have to make sure I’ve got a few handy snacks around. Funny really: I didn’t think I snacked that much but I’m having to stop myself picking at things around the kitchen far more than I expected. And removing bread crumbs from the surfaces has already become an obsession. Apparently even the wrong crumbs can cause damage.

What I’m finding hardest to process is the fact that this change is for life. It isn’t just a ‘dry January’ month, or a ‘give up chocolate for Lent’ kind of thing. I really am not ever going to have that lovely seeded wholemeal bread again.

But I will feel better.

And that’s the key thing. I have to keep reminding myself that it is a very good thing that I have this diagnosis. In a few months’ time I hope I will feel like a new woman. All that wonderful energy I used to enjoy. No more discomfort and bloating. These are good things to focus on.

I keep thinking about my gut and how it was damaged over the years. Weird how things can be going on internally without us knowing about it. I wake up and think “I’ve got Coeliac Disease”, and picture my gut lining looking like the grim pictures I’ve seen online. I wonder how long I’ve had the disease, and whether it’s been a recent thing or actually something that has gone unnoticed for years.

Of course it will get easier. I’ll get used to which foods are ok for me to eat and which ones I need to avoid. I’ll get used to having different menus and my own variation of meals. There are companies who are trying really hard to make tasty gluten free foods and I am very grateful for that.

It just takes time to adjust and get used to the change.

For more information on Coeliac Disease : Coeliac UK