Understanding Coeliac Disease and Living Gluten-Free

Jul 2
7 min read

(Altogether now) "It's NOT a fad!"

We need more people to hear that. If you didn't already know, coeliac disease is a serious autoimmune condition that affects millions of people worldwide - and if you've read my book - or, at least, my book cover - you'll know it's 80 million at the last count. Worse, nearly two thirds of them don't know and they're walking around in pain and suffering.

For a dictionary definition, when a person with coeliac disease consumes gluten, a protein found in wheat, barley and rye, their immune system reacts badly, causing damage to the small intestine. To explain this to a 4 year old, with coeliac disease you can't have lots of different foods like bread, pasta, biscuits, cake and pizza because they'll cause damage inside your body.

This blog post is here to help you understand coeliac disease, its symptoms, diagnosis and how to live a gluten-free lifestyle. And if you're reading this on Wednesday 2nd July, you'll know I'm holding a live masterclass on this at 7:30pm tonight - you've just time to get tickets - more on how later!

Gluten-free burger and bun with chips and salad — (Don't worry: this burger bun's gluten-free!)

What is Coeliac Disease?

Coeliac disease is not the same as a food intolerance or an allergy. Although you can experience unpleasant short-term symptoms with intolerances and life-threatening issues with allergies, an autoimmune condition like coeliac disease isn't just about short-term problems. It can lead to serious repercussions in later life if you don't adhere to a gluten-free diet.

When people with coeliac disease eat gluten, the body attacks the lining of the small intestine. Coeliac UK estimates approximately 1 in 100 people suffer from coeliac disease but in Italy they estimate it's more like 1 in 70 and many remain undiagnosed for years.

Symptoms and Diagnosis of Coeliac Disease

Identifying coeliac disease can be challenging due to its variable symptoms. The classic symptoms include:

Chronic diarrhoea
Weight loss
Bloating and stomach pain
Fatigue
Iron-deficiency anemia

Non-digestive symptoms can include skin rashes, joint pain and dental enamel defects caused by reflux.

Symptoms can vary significantly from one individual to another. Whereas symptoms used to be mainly gastrointestinal (like bloating, abdominal pain, or diarrhoea), it's now recognised the disease is expanding to include non-digestive symptoms like the ones I mentioned above, as well as fatigue, headaches or increased anxiety.

But whatever symptoms you have - or even if you have none and you're a silent coeliac - it's vital you seek proper medical advice.

Diagnosing Coeliac Disease

A diagnosis for coeliac disease typically involves a couple of blood tests to look for specific antibodies and a biopsy of the small intestine to check for damage (an endoscopy). Some people avoid the biopsy (particularly small children) but you'll need to talk to a specialist if this an option you'd prefer (they'll want to ensure it's definitely coeliac disease and not something else).

But here's the important bit:

If you think you might have coeliac disease, you must keep eating gluten until tests are complete...

That is, for the time being. Those rumours about new testing not involving having to eat gluten are true. Trouble is, the tests aren't yet on the market so the gluten challenge (as it's commonly known), which involves eating gluten for 6 weeks prior to testing with enough gluten in at least two meals every day (e.g. a slice of wheat toast or wholemeal pasta). Otherwise, testing can lead to a false negative.

Ali Walsh going for specialist testing at a cliinic — Make sure you get your diagnosis and management of coeliac disease with a specialist healthcare provider

What Helps with Coeliac Symptoms?

Once diagnosed, the only known and recommended treatment (note: not a cure) for coeliac disease is a strict gluten-free diet. Staying strictly on the diet is important but there can seem like an incredible amount to learn to begin with.

So here's a quick checklist...

Learn to Read Labels: in the UK, food manufacturers are required to label their products for "cereals containing gluten". So if you see BROWs (Barley, Rye, Oats and Wheat) on a product, check to see if it's had the gluten removed and always avoid products that 'may contain gluten'. Note: they don't have to specify gluten but the cereal that contains it - e.g. wheat. And it must be emphasised on the packet in a different way from other ingredients - e.g. in bold, italics, underline, CAPITALS or highlighted.
Cook at Home: it might be a faff but preparing your meals allows you to control ingredients. Filling your kitchen with gluten-free grains such as rice, quinoa, and buckwheat can help you create delicious meals without the risk of gluten. You can also have potatoes so if you're a mash lover, you're safe!
Seek Professional Help: getting a registered dietitian who who actually knows something about coeliac disease is a wonderful pot of gold at the end of the rainbow. They'll be able to give you specific guidance in a way that many dietitians aren't able to. If you can't get an appointment quickly (many people wait months just to receive a generic leaflet) then it's worth messaging me for people I recommend.
Join Support Networks: It's a wonderful thing when you find others who are going through the same issues as you are. But not all groups are the same. Take Facebook. You'll find plenty of coeliac groups (yay) but many encourage fierce debate. I've removed myself from a few where people weren't the kindest and set up my own lovely group called The Gluten-Free Haven. You'll be welcome to join us - just click here!
Stay Informed: There is SO much information circulating about the latest advancements in coeliac disease, both for the test I mentioned earlier and for therapies that may mean we coeliacs will get to eat gluten again (but don't get too excited - it's early days!). Being a member at Life on a Rice Cake, having a 1:1 session with me or just by reading this blog, you'll learn lots about what's going on in the world of gluten-free.

Living a Gluten-Free Lifestyle

At first it seems like a crazy uphill struggle. And how long you continue to struggle will depend on how much help you get. Thankfully, with a spot of good planning and education, it can get a lot easier quite quickly. Here are key strategies to help you navigate this lifestyle:

Stock Your Kitchen: Get some staple products in that you really enjoy. This might include small things like gluten-free stock cubes or big things like potatoes, rice puffs (Kallo do a gluten-free version), yogurts, tinned tomatoes, frozen chicken pieces, potato waffles, frozen peas, plain rice, eggs, milk and so on. That way you'll get home and be able to make a meal quickly without fear.
Explore Gluten-Free Alternatives: I'd recommend doing this after a few months of being naturally gluten-free. Many traditional recipes can be ruined using gluten-free grains and flours because they don't adapt. Take coconut flour, for example - it needs a lot of moisture to make it work in a recipe. So only try baking with almond flour, coconut flour, or gluten-free baking mixes when you have a specific gluten-free recipe to hand.
Dining Out: Start with something easy, like a curry, which is usually naturally gluten-free, and pair it with boiled rice. Then get more adventurous and try to go to some Coeliac UK accredited places. But always, regardless of where you are, tell them you must have a gluten-free dish. And if they don't understand or start talking about the vegan menu (as though it were the same thing) then it may be better to avoid eating there.
Communicate with Friends and Family: Sometimes they'll be great...and sometimes they just won't understand. It can be tricky at first but as soon as you set some boundaries and they truly realise this is your diet for life, things should get easier.

Delicious gluten-free sushi in South Africa — A delicious plate of sushi I enjoyed in Johannesburg!

Managing Coeliac Disease Long-Term

When you've got to grips with the gluten-free diet, it can be depressing to think you'll have to live by your new rules for life, especially when you know you have to be careful about your future health to avoid bigger problems like osteoporosis (coeliacs are more at risk). So take my advice and ensure you:

Monitor for Nutritional Deficiencies: In the UK you're entitled to annual blood tests to check you're not deficient in vital nutrients, including iron, calcium, and certain vitamins like vitamin D. You probably won't get an invitation from your GP so make sure you get in touch with them yourself.
Educate Yourself: Keep on top of the latest news by making sure you engage with competent people on social media - following Life on a Rice Cake on Instagram is a great start!
Travel with Confidence: Going away when you have coeliac disease means a bit more planning and preparation but it's really worth it when you get to go on some amazing adventures. I've been diving at the Great Barrier Reef, climbed Sydney Harbour Bridge, eaten brisket in Texas, had fresh crab from a coastal town and hit a (small) jackpot in Las Vegas. If you need to start somewhere easy, try Italy or Australia, and always take a gluten-free restaurant card in their language (even English).
Stay Resilient: It's easier to understand how much you've learnt when you keep a journal. It doesn't need to be War & Peace - just write how you feel each day. In 6 months' time you'll be amazed at how far you've come!

Living Life to the Fullest

Living with coeliac disease is a different life but it doesn't have to be dull. With an understanding of your condition and the right resources, you can still have a great time. It's really worth finding some local places that understand your needs so you can be spontaneous if you wish.

Use Trip Advisor and enter keywords such as "gluten-free" and "coeliac". When people upload their experiences, you'll be able to benefit. Likewise, if you have a safe and delicious meal out, make sure you leave a review using those keywords.

You deserve to have a fantastic life; it doesn't have to be ruled by gluten. Just remember in the beginning it's bound to feel more difficult, so go easy on yourself if you're having a tough time.