This is a Special Blog : Meet Sarah who shares her personal experience living with coeliac disease
This month’s She’s Crushing It post is a little bit different to my usual. I love writing about good food, holistic well-being, mental health, and how they all tie in together. Looking after your body is important and I love to share my thoughts and research with all of you. However, today I want to share with you the experience of someone who lives with coeliac disease.
I’m going to hand her the controls of this entire blog so she can tell you about her experience of living with coeliac disease and a strict gluten-free diet. For example, what is coeliac disease, how coeliac disease affects someone and more …
So, over to Sarah! We hope to give you a little more knowledge on such an important topic. For those of you newly diagnosed with coeliac disease, or those who live with or know someone who is, I hope this really helps you.
Here's my friend Sarah, and her introduction to coeliac disease
Hi, readers of She’s Crushing it. I’m Sarah. I was diagnosed with coeliac disease over 20 years ago, when I was about 5 years old, back when it was barely known about and gluten-free goods weren’t a thing (or were disgusting). Since then, it’s been a crazy journey of strict gluten-free diets, people looking at me like I’m strange and unfortunate, and foods that have gone through a huge transformative journey. (By this, I mean biscuits no longer taste like chalk.)
I want to share a little more about what coeliac disease is for those of you who are a little confused about it, what it’s like to live with coeliac disease for so long, and other FAQs.
Please note that, while I’ll add in as much scientific fact as possible to help you out, most of this is intended to be a personal experience post. You can easily get the scientific fact online. What’s hard to find is what it’s truly like to live with coeliac disease and what everything means on a daily basis. So, much of what you’ll find here are my opinions and what I’ve lived with. I know I’d have loved to see such a thing growing up, so I hope it can help you.
What's coeliac disease?
I have a few bullet points with the science of what coeliac disease is firstly, to give you the super quick and official run down:
- Coeliac disease is a serious autoimmune disease.
- Coeliac disease is caused by a reaction of the body to ingesting gluten.
- It mainly affects and damages the villi in the small intestine in your gut.
- When a coeliac’s villi are damaged, they can’t properly absorb nutrients from food.
- Coeliac disease is hereditary, meaning that it runs in families.
- People can develop coeliac disease at any age.
- Left untreated (if you continue to eat gluten), coeliac disease can lead to serious health problems.
- Various symptoms include stomach pains, fatigue, and weight loss (see more below).
- There’s no known cure for coeliac disease. The only solution is to live a gluten-free diet.
(Links and references at the end of the article)
How many people suffer from coeliac disease?
The rough number of coeliacs in the UK is at least 1 in every 100 people (according to the NHS- see the link in the bibliography at the end of the post).
Experts also think this number may be underestimated, as milder symptoms go undiagnosed or may be attributed to other conditions, including IBS.
Relatives of coeliacs are at increased risk of developing coeliac disease (parents, children, siblings).
However, coeliac disease is not something that is routinely tested, so it’s difficult to know accurate numbers. The NHS website says that testing is only recommended for those with the family history of it or who have current relatives diagnosed.
Personally, I find this troubling. You’ll hear more about my family history with coeliac disease in a bit. But, many years ago it was barely known and my grandpa was scoffed at when he said something was wrong when he ate gluten. Even as recent as a few years ago, when my mum was trying to get diagnosed and doctors said it wasn’t hereditary and made it difficult for her. Research now shows that it IS hereditary, but due to lack of knowledge until recently, it may not be diagnosed in your family line.
So, even if there’s no clear diagnoses in your history but you think you recognise this in your family, my unprofessional opinion would be to get checked anyway. (I’m not qualified, but I DO know the pain of seeing family suffer because of this and would rather no-one else went through that.)
How does gluten affect a coeliac?
This is the question that everyone wants to know when they find out I’m a coeliac. And, it’s the important question when you’re newly diagnosed or know someone who is.
There are short and long-term problems.
In the short term, you get temporary pains and issues to your body reacting to what it considered a ‘poison’. I go into this a little more below, which are the usual symptoms that you can spot possible coeliac disease with. But, in short, these can include desperate bathroom trips (or the opposite- toilet troubles), awful stomach pains, sore throats, tiredness, mental health issues, and more.
In the long term, if you don’t follow a gluten-free diet for preventative measures, there’s the scary thing of cancer, increased mental health issues, weakening of the bones, anaemia, problems with pregnancy, and more (see here for a little more info).
Here, some people tell me ‘but you can get cancer with almost everything now’. Which is true in a way. Humans live long enough now we’re getting more and more issues we never would have tracked before. But, then, I look back in my family tree and see an awful pattern of family members in that line dying young with the same symptoms. Eek.
My grandfather went to the doctors many times in his middling years, complaining of symptoms like you’ll see below. He’d narrowed it down himself and said it was either gluten or meat (both of which they barely ate due to old-fashioned wages meaning they were a once-weekly thing. He could tell it was on those days he felt bad). The doctor said there was nothing like that. Back then, that was the truth- there was nothing like that they knew of. It was never caught and he died with cancer all over his body.
Thirty years later, my mum had the same. From raising me as a diagnosed coeliac, she started to recognise her own symptoms and tried to go gluten-free. But, by then for her, it was too late.
So, sadly, when I say cancer is a long-term problem, I mean it. Not one of those, ‘oh, you may get it from looking at a lamppost’ style things you see in the ‘top five things that you should stop doing now because cancer’ posts. But a ‘I don’t want to see you go through what my family did’ style warning.
That’s our long-term risk.
But there is a way to stop it, so please don’t worry. It can be helped:
If you cut the gluten and live with a strict gluten-free diet, then within 3-5 years (according to the NHS) you’ve cut down your cancer risk to about the same level as a ‘normal’ person. However, just because you’ve been gluten-free for 3-5 years, doesn’t mean you can risk it and start again. Keep going and look after your long-term health.
(And when I say that to people, there’s always the ‘thanks for dropping that bomb-shell’ response. So, sorry for dropping the bomb-shell, I guess?)
What are the symptoms of coeliac disease? How do you know if you could be a coeliac?
Oh, the symptoms. Wow. This is the place a woman never wants to admit to such things. But for the good of education and health, I will share.
If you experience many of these and eat a gluten diet, try cutting the gluten and seeing if the symptoms reduce, too. If so, talk to your doctor. It could be a sign of some form of gluten intolerance or coeliac disease.
Common symptoms of coeliac disease include:
- Diarrhoea (the website I’m looking at says ‘which may smell particularly unpleasant’, but of course it doesn’t smell great. Such a thing never does. But I get what they’re saying: factor in a damaged stomach rejecting food.)
- Stomach aches (serious ones. At some times of accidentally eating gluten, for whatever reason, I’ve had insane stomach aches, some of which feel like my stomach is being cut open by a burning-hot knife. Sometimes it’s not that extreme, but if you ever get that feeling it may be because of this.)
- Bloating and farting (all the glamorous stuff and, yes, it’s entirely true. Imagine eating tonnes of broccoli and baked beans every day. Cut out the gluten and it happens LESS, but after gluten permanently damages your stomach this may be an ongoing issue that takes years to find some form of solution for. I love mint tea and eat fermented foods to try calm my gut – in fact, you can read more about gut health on a previous blog here).
- Indigestion (I think? Maybe? I get this one less, but I eat my food so quickly maybe I get the two causes confused. This could be an ‘everyone gets different symptoms’ thing.)
- Constipation (because diarrhoea isn’t bad enough, we get the weird combo of the two.)
- Fatigue, as a result of your body not properly soaking up the nutrients from food. (This is a thing, definitely. I have multi-vitamins every day and have to eat double the amount of some vitamins and nutrients to make sure my body gets the equivalent to ‘the normal’.)
- Unintentional weight loss (I’ll also add unintentional weight gain, because my mum gained weight with gluten, and then lost weight and became a ‘healthy’ bmi on her gluten-free diet. However, as a child, I seriously lost weight and then became a ‘healthy weight’ by gaining it when I went gluten-free.)
- Nerve damage (Not sure about me, but my mum had issues before being diagnosed and now this makes sense, upon reading it. They discover new things each year. Amazing.)
- Children with coeliac disease may not grow at the expected rate and may have delayed puberty (I can confirm both. I was a late grower and had late puberty.)
- I’m going to add something about pregnant coeliacs and premature births. I read it somewhere ages ago and can’t find the link now to show you the science here, so I’m sorry- you may have to take this one as less scientific as I can’t ‘prove’ it. But it’s apparently normal for coeliacs to have premature births. Both my sister and I were very early (5&6 weeks early respectively). If you’re a coeliac and want to have a child, or know someone in that situation, apparently you need to (now) be closely monitored to ensure everything is safe and the right nutrients are getting to mamma and baby.
Again, it’s tricky. These things pop up almost anywhere. Baked beans give gas. Spicy curry gives toilet troubles if you’re a fragile westerner like me. Indigestion could be that you just ate too quickly. But, the trouble lies when you get multiple of them, regularly.
If you’re experiencing multiple of these, almost all the time, then look at the food you’re eating. It could be something you really need to get checked out. Better to check and be safe, than sorry, right?
When does someone usually start showing the symptoms of coeliac disease?
Any age. As a short answer.
I got it as a really young child, before I was five, and diagnosed at five. My mum started showing signs in her late forties, and my grandpa realised something was wrong in his fifties. But he didn’t get diagnosed because it wasn’t a ‘known thing’ back then, so I can’t give you a 100% answer on that.
When my mum found out she could be, that was when she discovered coeliac disease was inherited. Before then, we didn’t know. We just thought I was the only one. Now we know it’s an inherited illness coming from her family line and dots were connected all through a line in her family, and it explained how my grandfather died. So, she immediately stopped my sister from eating it (who was about 18 at that time and moaning a bit about experiencing some of the symptoms above). While my sister was never formally diagnosed, it was a risk (after our family history) that we didn’t want to take. So, we’ll say eighteen years old for her.
It just goes to show how, even within one family, it can be at drastically different ages!
Can you treat or recover from coeliac disease?
Sorry. No. There’s no cure and I really wish there was, or at least something to ease the symptoms. The idea that my body is permanently damaged due to the things I ate in the first four years of my life is really frustrating. And there are such strong consequences, as we spoke about above. And, it must be even worse if you discover it late. The feeling of ‘if only I’d known, I could have stopped my body hurting or suffering so much’. Because the ‘preventative’ method is so easy:
NO GLUTEN. EVER.
By following a gluten-free diet you can help control the symptoms and prevent long-term complications. And by gluten-free diet, I mean a really strict one. Not a light gluten-friendly one. Not one where there’s gluten-free wheat in those biscuits you like (because that’s still wheat and only there to help the gluten intolerant people. For us coeliacs, even the gluten-free wheat is a no). And strict restaurant standards, too. Put croutons in my salad and then say, ‘it’s okay to just take them out’? Nah. New salad needed!
It’s a pain. And can be embarrassing, awkward, and you’ll feel like you’re the bad one at times. But, that vs the result of eating it … let’s force people to understand.
Eating gluten-free properly, to a coeliac level, has become much easier over the years. So don’t worry. Finding food, full healthy food that provides the nutrients you need, is okay. Plus, it’s so much tastier now.
Is there much support available for coeliacs or people who live with coeliacs?
These days, there are countless organisations and groups (official and community) to support coeliacs and people who live with coeliacs. There are more specialists to see for official support, and many online websites like this one:- https://www.coeliac.org.uk/home/ to give you information and any help you need.
And, more and more now, there are blogs with communities and forums to share ideas and experiences, and social media groups dedicated to coeliac living too.
I moved to Australia recently, from England via Japan. I’d found living in Japan a little tricky as a coeliac and realised I didn’t use support groups and social media as well as I could have. So, not wanting to make the same mistake twice, I checked out the social media groups available for living with coeliac disease in my state in Australia. There’s a great Facebook group here that many people talk on, share experiences, and ask about local cafes and restaurants that are good/bad at dealing with strict gluten-free and coeliac diets. It’s so much easier this way.
Photo of a home-made “don buri”/ buddha bowl of nattou (fermented soy beans), daikon radish, and salad grown by an ex-neighbour of ours, including nasturtiums, yum!
Plus, joining a support group like this makes you feel a little more normal and less alone. When I was diagnosed, many people around me hadn’t heard of my condition and sneered at me and my family (not what a child wants when growing up!). They thought I was being fussy so I grew up being treated as abnormal and judged on the food-front.
However, now it’s more known and more and more people are living with and talking about it, it’s great to interact with others like me and finally feel more normal!
Seriously, if you’re a coeliac (old or new), or are living with a coeliac, check out the websites, blogs, and social media groups. The support and sense of community is so important.
And you can also ring this hotline (UK only): Coeliac UK helpline 0333 332 2033, open Monday to Friday from 9am to 5pm.
What advice do you have for living with a coeliac?
I had to ask my partner for this! I’ve lived as a coeliac for so long for pretty much all of my memorable life that I really don’t know much else. As for him, he just joked about bathroom etiquette and learning when to ignore the awful whale noises my stomach sometimes made. I’ll explain below:
I spoke above about how eating gluten damages the lining in your stomach when you’re a coeliac, and how some of the symptoms were awful stomach noises. Well, sometimes they never go away. And now and again my stomach will just randomly decide it didn’t like what I ate, even though everything I ate was fine in my strict gluten-free diet. The noises can be awful, like a whale trying to yell to a pod on the other side of the ocean.
White and Black Killer Whale on Blue Pool by Pixabay
(You may recognise that if you have the same reactions to food as a coeliac.)
Try out gluten-free food for shared meals, too. I’d hate to eat separate things to my loved ones all the time. My partner’s been great at sharing and adapting to my diet, which is great and makes me feel included and not strange. Find yummy recipes to eat together and don’t rub in that you can eat all the gorgeous wheaty fruit pies (make gluten-free pies instead!).
If you don’t turn gluten-free with them for a 100% gluten-free household, then you should have really strict kitchen space. You’ll need separate toasters and chopping boards and pans and spoons and everything you never thought of.
My partner eats pretty much a gluten-free diet anyway. Being Japanese, he’s a ‘rice for every meal’ kinda guy and we use gluten-free soy sauce and miso soup. So, I don’t have much of an issue with kitchen stuff any more.
But, my dad still ate gluten in small amounts when I lived at home so we had a strict split kitchen so that I could eat safely.
What good coeliac recipes are there?
There are so many gluten-free, coeliac recipes out there now. Having grown up in a time there were none, my family and I just got used to ‘adapting’ regular recipes. E.g. swapping flour in a recipe for gluten-free flour.
But now, there’s a whole internet and countless cookbooks- it’s incredible. They even tell you which things can help the gluten-free recipe work better. In the time of straight swaps, pastry or cakes would be crumbly, dry, breaking, or not rise. New recipes experiment more and tell you to add in things like Xanthan gum or other magical items that make cakes soft and rise and pastry taste like ‘normal’ pastry. It’s amazing.
Here’s some foods that I love and that work well in gluten-free:
- Banana loaf (bananas add extra moistness to dry g-f stuff)
- Don buri recipes (rice bowls) (no gluten needed)
- Sushi (just check the vinegar and soy sauce they use)
- Soups (get a gluten-free soup stock and soup away!)
- Quinoa flakes for safe muesli and porridge
- Gluten-free pies and tarts (making the pastry is easy now)
- Gluten-free pizzas (they even sell gluten-free pizza bases now you can add you own toppings to, or make your own)
- Risottos and paellas (again, check for a gluten-free stock)
- Sweet potato/potato things
If you’re a new coeliac or know someone who is, have a bit of fun trying out new recipes and expanding the options. Before you know it, you’ll have amazing foods you never thought would be suitable for a coeliac diet.
Honestly, I’m really happy with my diet and wouldn’t ask to change it for the world.
- Coeliac disease is a hereditary autoimmune disease whereby the body considers gluten as a threat.
- As there is no cure for coeliac disease and there are severe symptoms and long-term risks, it is advised that coeliacs follow a strict gluten-free diet.
- If you’re the only person at home on a gluten-free diet, keep your own kitchen items separate. Cross contamination is a risk we can’t take.
- Gluten-free food is actually much easier to cook than most people think. Have fun and experiment with foods to see what you can cook for a coeliac diet.
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Read more about the science at these links, which I took the science information from: