The Coeliac Explainer: Talking to family and friends about coeliac disease￼
Having coeliac disease is pretty tough. It usually starts with feeling really unwell. Then having lots of tests. Then being told you can’t eat many of your favourite foods and you have to be really, really careful about every mouthful. And not for a little while but for the rest of your life. You might have been diagnosed soon after symptoms appeared or it may have taken 10 years or longer before you knew what was going on. Then, after you have been sick, been diagnosed and are trying to navigate a whole knew way of eating, you find you have to deal with family and friends who think you are going through some kind of fad or are being more than a little over the top with your restrictions.
Although most people find that family and friends can be a great support, there is always one (or two…) that can be hard to manage. Even well-meaning people can struggle to understand why you have to be so strict or to separate a strict gluten free diet from any other diet fad that’s passing. So what can you do?
This is such a big problem for members that we have put together this booklet to help you find was to explain coeliac disease to family and friends. You can dip in and out of it or hand it over for them to read (hello!).
I’m Coeliac – what does that mean?
I have a genetic condition that causes my body to react abnormally to gluten. Gluten is a type of protein found in wheat, rye and barley. When I eat gluten my body reacts very badly causing damage to the lining of my gut. This damage makes it harder for me to absorb the nutrients that I eat.
Being a genetic disease, coeliac disease does run in families. In fact, my first-degree relations (parents, children, sisters and brothers) have a 1 in 10 chance of being coeliac as well.
Being coeliac is not a choice. It is not part of any “fashion” for going gluten free. There were people with coeliac disease long before social media discovered gluten and we will still be here long-after they have moved on to something else. It is a lifelong condition that most coeliacs would prefer to do without.
The damage that gluten causes my gut can lead to several problems:
Problems that can show up soon after eating gluten:
- I can have vomiting, diarrhoea, indigestion and severe stomach cramps. (Not everyone with coeliac disease will have this reaction when they eat gluten – this doesn’t mean they are faking being coeliac or are only “slightly” coeliac).
- I could also develop severe bloating and constipation (which might sound funny but really isn’t).
Problems that might take a few months or years to show up
- Osteoporosis: People who are coeliac are more likely to develop osteoporosis. This means my bones can lose strength and may break more easily as I get older. This happens because even a tiny amount of gluten makes it hard for my body to absorb calcium.
- Anaemia: My body can struggle to absorb iron if my intestine is damaged by gluten. This leaves me feeling very tired, low mood and struggling to concentrate.
- Infertility: Damage to my gut means that I don’t absorb all the nutrients I need. This can make it more difficult for me or my partner to become pregnant. Women with coeliac disease who eat gluten are more likely to have repeated miscarriages when trying to become pregnant.
- Nerve Damage: The reaction my body has to gluten can lead to damage to my nerves called Ataxia.
- Skin rashes: People who are coeliac can develop an itchy skin rash called Dermatitis Herpetiformis.
- Other problems can include: migraine, poor enamel on teeth, mouth ulcers, skin rashes, difficulty concentrating at school or work
How Do I treat Coeliac disease?
The only treatment is a strict gluten free diet for life. With the emphasis on strict. I can’t “have a little bit, go on, it won’t do you any harm…”; I can’t “come off” the diet for a few weeks when I am on holiday. I can’t eat gluten in a restaurant “to avoid causing a fuss”. Gluten really does harm me every time I eat it. I have to avoid it all the time, forever.
Which foods contain gluten?
The main foods that contain gluten are wheat, rye, barley and any foods made with these ingredients. This means that I cannot eat normal bread, biscuits, cakes, pasta, noodles, couscous and many packaged foods. I also cannot eat spelt bread or sourdough bread as they contain gluten too.
Oats do not contain gluten but they pick up lots of gluten during harvesting and processing due to coming into contact with other cereals like wheat. Most people with coeliac disease can eat gluten free oats. Gluten free oats have been carefully grown and processed to ensure they do not pick up any gluten.
However, about 5% of people with coeliac disease will react badly to oats, even gluten free oats. Some gluten free foods will have oats listed on the label so you need to check if the person can eat oats too.
When I am buying foods like bread, sauces, soups, sweets, chocolate, packaged meats, breaded chicken or fish and so on, I have to check labels carefully to see if they are gluten-free. There is a difference between not having any ingredients that contain gluten and a food fully being gluten-free. This is because cross contamination can add gluten to a food. So if someone is making gluten-free bread but there is ordinary flour around from the last thing they made, then the gluten can get into the gluten-free food. And yes, that is enough to damage my gut. For me to be able to eat a food it must have less than 20mg of gluten per kilogram of the food. Also known as “20 parts per million”. Food manufacturers can only say a food is gluten-free if they have a laboratory test showing the actual level of gluten is below 20mg per kg of if there is never any gluten on site when they are making gluten free foods.
So how do I work this out? The Coeliac Society of Ireland produces the Gluten Free Food List every year with all of the gluten free foods that are available in Ireland. The foods in this list have all been checked to be sure that they really are gluten-free. If it is not in this book, I probably can’t eat it.
Another place where I can accidentally eat gluten is when gluten-free foods or meals are contaminated during cooking. There are lots of ways this can happen:
- Crumbs from ordinary bread getting into butter, jam or spreads.
- Not washing hands well before preparing gluten-free foods
- Using a deep-fat fryer that was already used to make something with gluten. The gluten stays in the oil and contaminates the gluten-free food being cooked next
- Toasters are a problem. People who are coeliac either use a separate toaster or use toaster bags instead
- Not cleaning down a kitchen really well after ordinary flour has been used. We all know that if we open flour some of it goes up into the air. If this is still around when my food is being made, then it can contaminate what I eat.
- Foods that are gluten-free touching foods that contain gluten e.g. gluten-free scones beside ordinary scones.
I would still like a normal life including visiting you at home and going out with you for lunch or dinner
Sometimes people don’t want to eat with me or prepare a meal for me because they are uncomfortable or nervous about it or it just seems like too much hassle. It is hard for me to be left out of events or struggling to eat because of a genetic disease that I didn’t choose. Please ask me about what I need – I know sometimes people are shy about asking but I am very happy to help.
If we are eating out together please remember:
- I will ask about gluten-free options. Not because I want to, but because I have to.
- I will ask about the restaurant we are going to so I can look up menus or call them in advance to make sure they have something I can safely eat.
- I may ask to change the restaurant if I know from past experience that I can’t trust the food.
- I am not trying to be difficult, believe me, I would prefer to be able to just go out and not think about it!
If I am going to your home:
- Do ask me what I can have. Tell me what you are planning to cook and we can see what works. It is safest for me if the whole meal is gluten free, but I know that’s not always possible.
- We can use the Coeliac Society’s Gluten-Free Food List to see which bought foods are best to use.
- We can talk about cross contamination .
- We can check if I can eat gluten free foods that contain oats.
Just remember I will be absolutely thrilled that you have included me and it will be appreciated more than you can imagine.
And if, someday, it turns out that you have coeliac disease too, I will be there to help you.