Positively Coeliac: Guest post from Claire Tulloch about the ins and outs of Coeliac Disease

Coeliac Awareness Week runs from the 12th to the 18th of May.  With Coeliac disease currently affecting 1 in 100 people in the UK, the chances are you know someone living with the disease. With an estimated 500,000 people thought to have not yet been diagnosed, raising awareness is really important in giving those people and their families a helping hand  through the process of diagnosis and treatment. We’ve been in touch with Claire Tulloch, who blogs on her experience with the disease and how it has affected her life. To hear more from Claire, including gluten free recipes and her work in the “free from” sector, check out her website.

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Claire’s Story

I first started being ill shortly after returning from honeymoon in October 2003. We’d been to Verona in Italy and enjoyed a wonderful week of pizza, pasta and passion. But I came crashing back down to earth when I was constantly nauseous, bloated and running to the loo within a week or two of arriving home. After a negative pregnancy test, the doctor thought I may have picked up a parasite while we were away. But a blood test quickly ruled that out.

The second thing my doctor suggested was coeliac disease. I’d never heard of it. I even had to ask him to write it down for me so I could go home and research it online. Then came the tests to find out if I had it. During this time I was so lethargic. I’d lost almost a stone in weight and just felt rotten from the moment I woke up in the morning to when I went to bed at night. I was constantly on the toilet and feeling sick. It was awful. And my belly was so swollen and bloated I looked like I was four or five months pregnant! Looking back now, I think I was depressed too. It’s hardly surprising really. I just used to cry all the time about how terrible I was feeling. But I somehow managed to keep going and didn’t even take any time off work while they were trying to find out what was wrong with me. After a positive blood test for the two types of coeliac antibodies, a gut biopsy carried out by endoscopy confirmed what my doctor had suspected: I was indeed a coeliac.

That was around six months after I first became ill, which sounds a long time and it certainly felt it when I was living through it. But I know it’s much shorter than most people’s diagnosis time: Coeliac UK reckon the average length of diagnosis is a staggering 13 years! So all in all I don’t feel too hard done by.

What to do if you suspect you’re coeliac

First of all, it’s important to say that the symptoms of coeliac disease vary from person to person and can be mild or very severe. The most common symptoms include bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness and anaemia. But not everyone with coeliac disease experiences gut-related symptoms and any area of the body can be affected. Other coeliac disease symptoms can include headaches, mouth ulcers, recurrent miscarriages, weight loss (but not in all cases), skin problems, depression, joint or bone pain and nerve problems.

The first thing I’ve done when hearing about friends’ or their relatives’ symptoms is to advise them to get straight to their GP to get checked out. But I’ve explained to them the need to continue eating gluten while waiting for an appointment or for tests, no matter how rotten they’re feeling. Diagnosis is made with a blood test that looks for two types of antibodies. If you eliminate gluten from your diet before this blood test is done, you can get a false negative result – that is, the antibodies won’t show up because you’ve not been eating gluten and your doctor will tell you that you aren’t coeliac when indeed you could be. If the antibodies are present in your blood, a diagnosis will be confirmed with a gut biopsy, a simple, day clinic procedure done under sedation.

If you’ve previously been diagnosed with Irritable Bowel Syndrome (IBS) but still have that feeling that something else is wrong in your gut, it’s particularly importantly that you speak to your doctor about coeliac disease. Guidelines issued by the National Institute for Health & Clinical Excellence (NICE) state that people with IBS symptoms should be tested for coeliac disease first. But research has shown that some GPs are just too quick to diagnose people with IBS rather than arrange for a coeliac blood test. This means that there are people out there who do have coeliac disease but have received a false IBS diagnosis. And with the complications of undiagnosed coeliac disease including osteoporosis and bowel cancer it’s important to get the diagnosis right.

It’s important to be alert to the link between coeliac disease and other auto-immune diseases diabetes and thyroid problems. If you or a close relative has either of those conditions and you have gut symptoms yourself, then you could well have coeliac disease and need to get checked out.

So we’ve heard all about the negatives- But what about the positives?

My coeliac diagnosis meant that I took a closer look at my diet. With the help of my dietitian, I focused on all the foods I could eat, all those naturally GF, non-processed foods. I learnt to cook better – and I also learnt to love creating my own GF dishes from scratch. If you’ve read other posts on my blog, you’ll know that I don’t mind having this condition and having to follow a GF diet. Discovering a new way of cooking and eating is where I began to feel positive about being coeliac.

In fact I came to realise that being diagnosed with coeliac disease could be a blessing in disguise. As I overhauled my own diet, my husband’s diet improved too since he would eat what I was cooking for the both of us, instead of the convenient ready meals we’d previously bunged in the oven after a long day at work. And once our daughter arrived a few years later, she too was introduced to a diet with few processed foods and far less wheat-laden foods than a lot of children growing up in gluten-eating families.

The biggest change of the last 10 years, since I was diagnosed, has got to be availability and choice in free from foods. 10 years ago free from sections in supermarkets were tiny with choices limited to bread and crackers, a couple of types of biscuits and cake, and just one or possibly two kinds of GF flour. Now I can get a whole lot more from even my local deli!  And the quality has improved so much too. Free from brands and even mainstream brands have realised that those of us who’ve cut the gluten out of our diets aren’t satisfied with inferior products. Lots of very dedicated people, particularly in the smaller brands, have been working very hard to get their free from products up to a standard that rivals regular, gluten-containing foods. Hurray to them, I say!  Eating out and food on the go has improved vastly too. Where once I had to make a 120 mile round trip for a gluten free meal out in a specialist eaterie, I can nip to a number of cafés and restaurants within a 10 mile radius of my home and dine on sandwiches, soup, cake, pizza and pasta.

The important take away message we want to leave you with today is that being diagnosed as Coeliac is not a death sentence.  You can still enjoy the food you love, with the people you care about. Like Claire, we should all be “positively coeliac”

We’ve also written a feature on the science behind Coeliac disease, take a look if you want to know more about this common disease!

Some resources you might find helpful:

https://www.coeliac.org.uk/home/

http://www.nhs.uk/conditions/Coeliac-disease/Pages/Introduction.aspx

Image from: http://www.flickr.com/photos/whatshername/540926535/

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