Understanding the Basics of Living with Coeliac Disease

It's probably not going to come as a shock. What isn't? That living with coeliac disease means making significant lifestyle choices and adjustments. In fact, you've probably just been diagnosed (or had a child diagnosed). Does it feel like you've peeked over a precipice? Please know it won't feel like this for long.

Did you feel frantic after your coeliac diagnosis? I promise things get better.

99% of the population will never experience what you're going through. Coeliac disease only affects about 1 in 100 people worldwide and only a third of them have been diagnosed. What's happened is a malfunction of the body - eating gluten leads to damage of the small intestine. If you've just been diagnosed, learning how to navigate daily life without going crazy may feel like an insurmountable challenge.

Thank goodness you found this page.

Coeliac Disease: A Brief Overview

Coeliac disease is not an allergy or a food intolerance; it is an autoimmune condition. When someone with coeliac disease consumes gluten—a protein found in wheat, barley, and rye—an immune response occurs that makes the small intestine think it's been attacked. Prolonged exposure to gluten can lead to long-term health issues, including malnutrition, osteoporosis, and, if left untreated (in very rare cases) cancer.

The good news (before you start despairing there isn't any) is that a strict gluten-free diet can help reverse many health issues (or prevent further damage).

This is me aged 20, an undiagnosed coeliac (hiding bloating).

Symptoms vary widely among individuals. I can't stress this enough. There's such a wide range of symptoms that many coeliac patients are misdiagnosed first, second or even eleventh time round. You might have experienced one or more of the following: bloating, diarrhoea, mouth ulcers, weight loss (although in my case I was actually overweight), fatigue, and joint pain.

Ranging from nothing (a silent coeliac) to severe, your symptoms probably led you to seek medical advice. With luck, you had a good GP who sent you for proper testing, leading to a diagnosis from a gastoenterologist via blood tests and an endoscopy (which is basically a 2 minute process to check the villi in the intestine - if they look damaged, it's probably coeliac disease).

Healthy villi are vital

Managing coeliac disease means adopting a strict lifelong gluten-free diet to prevent symptoms and intestinal damage. Yup - that word 'strict' hasn't been added unnecessarily. Unfortunately, for the foreseeable future, the only management of a coeliac diagnosis is being absolutely, totally gluten-free. For those newly diagnosed, understanding what this entails can seem overwhelming, but with the right information and resources, I promise it becomes manageable.

Navigating a Gluten-Free Diet

Transitioning to a gluten-free lifestyle involves more than just avoiding bread, cake and pasta. It requires vigilance about pretty much every food item consumed. Here are some practical tips for getting started:

1. Read Labels: Always check food labels for gluten-containing ingredients, especially on items you weren't expecting to contain gluten (like sauces). Look for certified gluten-free products, as they adhere to strict guidelines and reduce the risk of contamination.

   
   

2. Be Cautious When Eating Out: Inform restaurant staff about your dietary restrictions. Many places offer gluten-free options but they've not adhered to avoiding cross-contact (which basically occurs when people share things like cooking utensils, chopping boards or deep fat fryers). Look for establishments that specialise in or are certified for gluten-free food (you can do this via the Coeliac UK app). One of my favourites is the restaurant chain Pho.

   
   

3. Cook at Home: Preparing your own meals alleviates concerns about hidden gluten in your food. Start with whole foods like fruits, vegetables, fresh meat and fish, which are naturally gluten-free, and build from there.

   
   

4. Stock Your Larder: Fill your kitchen with gluten-free grains such as rice (both in its usual form and as noodles), quinoa, and buckwheat. This will make meal preparation easier and help you avoid temptations during times of hunger.

   
   

5. Experiment with Alternatives: Embrace the number of gluten-free products available today—from gluten-free flour mixes to pasta made from maize, the options get better and better each year. Explore recipes that use these alternatives like ones from Deliciously Ella or Laura Strange.

   
   

Overall, building a gluten-free diet may require some trial and error, but with practice, it can become second nature. Importantly, remember that avoiding gluten will not just ease symptoms but may help you with your overall health (you'll now be far more aware of what you're putting into your body). It didn't take long for me to read a few food packets before swerving UPFs (Ultra Processed Foods).

Living a Full Life with Coeliac Disease

Being diagnosed with coeliac disease can feel overwhelming, but it doesn't have to limit your life. I've been backpacking around Australia, savoured tagines in Morocco, enjoyed fresh gluten-free bread in a restaurant in Tuscany and even had brisket in Texas.

With a few adjustments, you also can have the time of your life!

1. Connect with Others: Seek out support groups (check Coeliac UK for local meet-ups) or online communities (like the Gluten-Free Haven) where coeliacs share experiences, recipes and coping strategies. It really helps to meet others who understand.

   
   

2. Educate Family and Friends: Help your loved ones understand coeliac disease. If they start telling you that you'll grow out of it or that it's psychosomatic, sit them down and go through this post with them.

   
   

3. Travel Wisely: Don't let coeliac disease prevent you from exploring the world. Look at gluten-free bloggers online and see where they've been that worked out well. Research destinations that cater to gluten-free diets (Italy is a great place to start), familiarise yourself with local cuisines, and carry safe snacks for emergencies.

   
   

4. Stay Informed: Make sure you have the Coeliac UK app. They'll let you know if there are any product recalls so you can stay as safe as possible.

   
   

5. Get Annual Checks: Every year you need to be getting blood tests to check your iron levels, magnesium, vitamin B12, calcium, vitamin D and so on. Your doctor may not contact you with a reminder so make sure you contact them for your annual appointment.

   
   

A travel guidebook alongside a selection of gluten-free snacks for travelling.

Embracing a gluten-free lifestyle becomes easier over time, even if it doesn't feel like it now. I really recommend keeping a diary of how you're feeling. Soon, you'll look back and realise how much you've learnt.

Empowering Yourself and Others

Basically, be loud and proud. It's vital when you live with coeliac disease - both for you and to help others facing similar challenges. Raising awareness about food choices in restaurants and workplaces can lead to larger conversations about accommodating those with dietary restrictions.

You can start by sharing your journey on social media. If you're good at taking photos, start with Instagram. Encourage businesses to understand gluten-free needs and offer support, reinforcing the fact that everyone deserves a safe dining experience.

When you see news stories advocating for allergen-safe meals, make sure you share them. That includes today's news story of the King backing the parents of Natasha Laperouse (whose death in 2016 was caused by a reaction to unlabelled food; had sesame been mentioned on the label, she'd never have eaten it). They've campaigned tirelessly for better awareness and a new allergy campaign in schools has been launched thanks to them.

You may not know it today but you could be the person helping thousands of others in the future. You just need to take a step in the right direction. Soon you'll be taking a lot more.

Adopting a gluten-free lifestyle will continue to require attention and care, but as you master how to navigate these challenges, the possibilities remain endless. You could be an Instagram queen, coeliac researcher or Masterchef hopeful.

What will you aim for? I'd love to know!