Jem’s Gluten Free Eats

The Life of a Coeliac

BEGINNERS GUIDE TO COELIAC DISEASE

I was diagnosed with Coeliac Disease in 2005. I was four years old and had been incredibly unwell for a while, but doctors were adamant that there were no issues and were reluctant to diagnose me although I was showing all the symptoms; I wasn’t developing at a rate that I should have been (very underweight, very small), I had constant bloating and stomach problems, I was fatigued, anaemic and essentially emaciated. My dad was diagnosed with Coeliac Disease as a baby in the 1960s and recognised all the symptoms, but the doctors were adamant that Coeliac Disease was not hereditary (my dad has four children, three of which are now diagnosed and the fourth also likely to have it but in denial).

But after multiple fights with the NHS, and several trips to hospital on a drip, I was diagnosed. But unfortunately, my issues didn’t stop after my diagnosis.

Up until my late teenage years, I have very much lived a life of misinformation. When I was diagnosed, Coeliac Disease was still very uncommon and unheard of. Medical professionals took no time to educate me on how to safely manage this diagnosis nor inform me of the consequences of not doing so. This was something I had to do myself. I didn’t even know Coeliac Disease was different to any other food allergy/intolerance until I was 19!

What I wish I had was someone to tell me the basics, someone to tell me where to start – it sure would have saved me a lot of anxiety and uncertainty. I wish I had someone to reassure me that safely managing my diagnosis wasn’t impossible and that one day I’ll get some control over my life back.

So what is Coeliac Disease? It’s not a food allergy nor intolerance. In fact, this excerpt from Coeliac UK is particularly helpful in understanding the severity of the diagnosis:

‘Coeliac disease (pronounced see-liac and spelled celiac in other countries) is a serious illness where the body’s immune system attacks its own tissues when you eat gluten. This causes damage to the lining of the gut and means the body can’t properly absorb nutrients from food. Coeliac disease is not an allergy or food intolerance.’

(Coeliac UK, n.d.a)

In short, it is an autoimmune disorder that can only be managed by a strict gluten free diet. And to outsiders, this may seem pretty minor and not a big deal. You just have to cut out certain foods and be a bit more careful with what and where you eat, right?

No, it’s so much more than that! When you are used to living a certain way, a diagnosis like this will really throw you off track. You may be half way through your life before you even get your diagnosis. Or you may be a parent/carer for someone who has just been diagnosed and it is something you have never had to cater for before. It’s a way of life that you’re not familiar with, and it’s rather terrifying.

So, I have created this beginner’s guide for you. I wanted to keep it as simplistic (and not daunting) as possible. Some of you may feel like I am teaching you to suck eggs, but I know that there are others who need somewhere to start, who need something to stop them from sinking into the oblivion.

Number One: Use BROWS

Now this isn’t as strange as it sounds… ‘BROWS’ is simply a helpful acronym which us gluten free folk should use as a guide for what to look for when reading food labels.

B – Barley. Often found in beers, lagers, breakfast cereals etc.

R – Rye. Often found in flours, breads and crackers.

O – Oats. Avoid oats unless marked as “gluten free” on the packaging. While oats themselves are naturally gluten free, they often come into contact with other gluten containing grains in the fields and/or as a part of the manufacturing process. Gluten free oats however are easy to pick up in most supermarkets and are perfectly safe.

W – Wheat. Our most common enemy. Often found in breads, cereals, pastas, baked goods, pre-made sauces and soups.

S – Spelt. Often found in flours, baked goods, breads etc.

If you’re checking a food label and none of the above appear in the ingredients or as a “may contain”, you’re good to go!

Please note that you may find a BROWS ingredient on a product that it labelled gluten free (such as wheat starch or barley extract etc). This may make things confusing, but if something is labelled gluten free, it will be safe for you to eat. This will mean that the gluten has been removed or is less than 20ppm (20 parts per million), so is now safe for you.

Number Two: Get into the habit of checking every food label

And I mean every food label. Even if you are 99% certain that the food product you have just picked up won’t contain gluten, check it anyway. Those ‘may contain’ warnings are pesky and you will find them appear on the most bizarre things, such as prepackaged salads, bags of stir fry vegetables, ice lollies… Although it is not so much of an issue for those with an intolerance or sensitivity to gluten, us Coeliacs however should avoid any foods that say ‘may contain gluten’ (or ‘may contain’ any of the BROWS ingredients). Although likely to be a small risk, the manufacturer has deemed there to be a high enough risk of cross contamination that it needed to be included on the packaging.

Number Three: Don’t skip your yearly check-ups

If you live in the UK and have Coeliac Disease, you are entitled to yearly check ups on the NHS. Therefore, make sure you go to them! As a child, I remember receiving reminders from my GP surgery every year to book in for my check up but then when I was 10, they just stopped contacting me. Me and my family just assumed I didn’t need them anymore or wasn’t entitled to them anymore. But whether you’ve been diagnosed with Coeliac Disease for a few years or fifty, you are entitled to your check up and you must always find time to go. They are so important.

My check ups used to always flag up low levels of Vitamin D and C in my diet, so now I take daily supplements and my last blood test came back completely clear. I have also been feeling so much better in myself, less fatigued and not so many mouth ulcers (which are another joy which come hand in hand with Coeliac Disease).

‘During your review, you should have:

  • your weight and height measured
  • your symptoms reviewed
  • your diet and adherence to the gluten free diet assessed and the need for specialist diet and nutrition advice considered’
(Coeliac UK, n.d.b)

It is also important to make the most of the doctor/GP/consultant’s (whoever is doing your check up) time. Don’t let them just take your blood and push you out the door. Ask your questions, voice your uncertainties. If you’ve been experiencing any strange symptoms, tell them.

On a similar note, don’t forget that you are also entitled to certain vaccinations on a yearly basis (again, in the UK), such as the flu and Covid-19 jab. And some other vaccines but on a less regular basis, such as the pneumonia vaccine which is given every five or so years. This is because us Coeliacs may have reduced spleen function and are at a higher risk of infection. If this is news to you, contact your GP surgery and ask to be given information about what vaccinations you’re entitled to.

Number Four: Fail to prepare, prepare to fail

Now, I have endured far too many social events with a rumbling stomach to not bring this up… Your diagnosis does not mean it’s okay for you to go hungry!

Always take a snack wherever you go – I have gotten into the habit of taking a gluten free cereal bar/flapjack and a packet of crisps with me to most places I go! Whether you’re going shopping, to the airport, to a party or to one of those dreaded buffets, take those emergency snacks. It is a far better scenario to have your emergency snacks but not need them (because by some miracle some kind human or venue has taken your dietary needs into account and catered for you in abundance) than to have no snacks and spend the evening hangry! When I am hangry, I am at my worst – so, I made sure to learn from this pretty quickly.

Also, if you’re someone who likes a night out but now ends the night having to watch your friends from outside the kebab shop window, get yourself a frozen pizza or a ready meal (before the night out obviously) for when you get home. It’s a game changer!

Number Five: Don’t assume people understand

In an ideal world, everyone would know about Coeliac Disease and how to cater for it. But we have to be realistic and understand that if someone has never had to (i.e., are not Coeliac themselves nor have never had to cater for someone who is), then we can’t expect them to know.

People commonly make the assumption that ‘gluten equals carbohydrates’, which is why we are often asked whether we can eat rice and potatoes. As above, if people have never needed to avoid gluten, they aren’t likely to know what it is. To be honest, I still wouldn’t be able to tell you what gluten is without looking it up first. Coeliac UK can though:

‘Gluten is a protein found in the cereals wheat, barley and rye.’

(Coeliac UK, n.d.c)

Therefore, take it on yourself to educate them the best you can. Correct them when they get it wrong and offer your help. I am a big believer in catering for people’s dietary requirements, as I know I appreciate it when people do it for me. But I always offer to bring my own gluten free food to help out as it can be daunting catering for someone with strict dietary needs.

Number Six: Look after yourself

Getting glutened: a phrase commonly used by us Coeliacs when we accidentally consume gluten

Sometimes I will go almost a year without getting glutened, but then other times it seems like I am doing it multiple times a month. It is so important not to be too hard on yourself, it happens to the best of us. Sometimes it is out of our control (being glutened by a restaurant or someone else cooking for us) and sometimes it’s down to ourselves (not checking a food label properly). But what should you do when you get glutened? Just look after yourself. Accept it, learn from it and take care of yourself.

‘If you’re experiencing vomiting or diarrhoea, it’s really important to stay hydrated. Some people find that taking medication to treat painful stomachs or headaches can ease symptoms, but it’s best to check with your pharmacist or GP. If your symptoms are very severe or do not improve, speak to your GP.

Some people find that taking it easy and getting plenty of rest can help them recover after being glutened. Listen to your body and do what’s right for you.’

(Coeliac UK, n.d.d)

Sometimes you may not get any external reaction, whereas other times you might be out of action for days. It can be hit and miss but give your body time to rest and repair: get plenty of sleep, keep hydrated and take it easy.

Please note that even if you don’t appear to get a reaction, it doesn’t mean it’s not doing any damage inside. This is why it’s so important not to “chance it” with gluten. It must be avoided at all costs.

Number Seven: Consult Coeliac UK

I am very thankful for Coeliac UK. They have been a big part of my journey and have helped me gain control back over my life. Their website is full of information and advice, you can buy recommend gluten free cook books and use the online chat service for any other queries you may have. I often turn to Coeliac UK for clarity on certain products and they never fail to pull through.

Jems Gluten Free Eats

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