What is Coeliac Disease? Is it like gluten intolerance?
My personal experience and common misconceptions
- Written by Shani Kaplan
We have touched on coeliac disease on the blog before in relation to auto-immune diseases and inflammation in the body. But what is it? The NHS describes coeliac diseases as ‘a condition where your immune system attacks your own tissues when you eat gluten. This damages your gut (small intestine) so you are unable to take in nutrients.’ [1] Coeliac disease affects 1 in every 100 people in the UK – keeping in mind that this is only an estimated figure as many go undiagnosed, either ignoring or confusing the symptoms with other diseases.
I found out I was coeliac 5 years ago, and I never could have predicted how much of a burden it would be on my life thereafter. I like to refer to the days of delicious, gluten-eating bliss and oblivion leading up to my diagnosis as PC (pre-coeliac). Before I found out, I was that girl that ate just about anything. With a fast metabolism and an insane love of food, I was the first one up for seconds at the breakfast buffet or cheese plate spread, and the last to finish piling on the plates at a sushi train dinner. I was always up for a cheeky dessert and had a love of all foods in moderation. I was never a fussy eater and was every parent’s favourite dinner guest.
However, despite this love of food, I do remember random bouts of stomach pains growing up, and after my teenage years, frequently feeling bloated. I went to the doctor after becoming slightly embarrassed by the bloating, and rattled off my symptoms, only to be told that I needed to go and buy some Metamucil fibre from the pharmacy. Years later, my mother was diagnosed with coeliac disease, prompting my own blood test, followed by an endoscopy to confirm the diagnosis. I soon learnt that it was all connected to the large number of auto-immune diseases that my mother’s side of the family seemed to have. My niece went on to be diagnosed at age 10 (which in hindsight, made me glad I didn’t get tested sooner…).
Let’s have a closer look at coeliac disease:
Symptoms:
- Diarrhoea or constipation
- Stomach aches
- Bloating
- Indigestion
- Fatigue (because of lack of absorbed nutrients)
- Unintentional weight loss
- Rashes
- Infertility
Causes:
-
Some conditions such as type 1 diabetes, as well as some autoimmune diseases such as thyroid disease, can put you at risk of developing coeliac disease.
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First-degree relatives of people with coeliac disease are also at a higher risk of developing it themselves.
Cure:
Unfortunately, there is no cure for coeliac disease. The only way to keep your symptoms at bay and prevent long-term health problems is by adhering to a strict 100% gluten-free diet. Symptoms range drastically amongst sufferers, but even if you have mild symptoms (like I do), you must still change your diet. If ignored, coeliac disease can cause much more serious health complications down the track; such as osteoporosis, anaemia, and less commonly, bowel cancer.
What people get wrong about coeliac disease:
#1 “Oh, so you’re intolerant?”
No, no, I have an autoimmune disease...
This assumption makes me cringe every time. Intolerances are frustrating, don’t get me wrong, and can cause many of the same symptoms as coeliac disease. But unlike intolerances, the health implications and the severity of adverse effects caused by gluten in those with coeliac disease is on a different level (as shown above).
I think one of the hardest parts of learning you are coeliac is the feeling of being a burden on others. We live in an era of alternative milks and endless gluten-free, dairy-free and vegan products readily available. And whilst for most, this is just a socially acceptable way of life now, I know that, like myself, some just don’t really enjoy feeling like they’re being “difficult”. It isn’t a choice and can be very limiting. You can’t just pop into your local Italian for dinner. Having this dietary requirement takes research before going to restaurants to make sure the kitchen can cater for you and ensure precautions for cross-contamination are taken.
#2 “But surely you can just have a little bite?”
As you have read above, unfortunately, that is just not the case. It is not just frowned upon, but seriously dangerous for your health. I have spoken to a few women who had struggled to fall pregnant, found out they’re coeliac and after refraining from gluten, have fallen pregnant. Complete elimination is necessary to heal your gut lining and make sure you are absorbing nutrients from all the foods you are consuming. You can’t just start again tomorrow. It can take months for your gut to heal again after consuming gluten (accidentally). So as stated above, even if your symptoms are minor and easy to manage, you cannot just pretend you’re fine and keep consuming all the bread!
#3 Gluten-free – you must be SO healthy!
I have had friends tell me that they are trying to lose weight so switched from gluten-filled foods to gluten-free foods. I can tell you honestly that trying to fill the void of gluten actually led me to consume more unhealthy foods than I ever used to.
Often the gluten-free foods are way worse for your health, as they are loaded with fillers and preservatives to make them taste better.
If you compare a loaf of sourdough bread, to a loaf of gluten-free bread, you will be shocked by the difference in the ingredients list. Even if you are consuming unprocessed, natural foods that are naturally gluten-free, like meats, nuts, fruits and vegetables, you can still over-consume!
#2 “But surely you can just have a little bite?”
As you have read above, unfortunately, that is just not the case. It is not just frowned upon, but seriously dangerous for your health. I have spoken to a few women who had struggled to fall pregnant, found out they’re coeliac and after refraining from gluten, have fallen pregnant. Complete elimination is necessary to heal your gut lining and make sure you are absorbing nutrients from all the foods you are consuming. You can’t just start again tomorrow. It can take months for your gut to heal again after consuming gluten (accidentally). So as stated above, even if your symptoms are minor and easy to manage, you cannot just pretend you’re fine and keep consuming all the bread!
#3 Gluten-free – you must be SO healthy!
I have had friends tell me that they are trying to lose weight so switched from gluten-filled foods to gluten-free foods. I can tell you honestly that trying to fill the void of gluten actually led me to consume more unhealthy foods than I ever used to.
Often the gluten-free foods are way worse for your health, as they are loaded with fillers and preservatives to make them taste better.
If you compare a loaf of sourdough bread, to a loaf of gluten-free bread, you will be shocked by the difference in the ingredients list. Even if you are consuming unprocessed, natural foods that are naturally gluten-free, like meats, nuts, fruits and vegetables, you can still over-consume!
#4 So you just get a bit of stomach pain?
Everybody's symptoms are different. For some it could be a quick, uncomfortable trip to the bathroom, or, like myself, you could be mistaken for a pregnant woman in her third trimester. But for others, it could mean a trip to hospital with severe pains and/or chronic fatigue for days afterwards! I think if only the temporary symptoms were involved, I may sneak gluten in my diet and put up with the bloat. But the damage to your body, in the long run, is enough to put most off a little sneaky indulging.
The other side of the effects of coeliac disease is the mental issues it can cause. Some of the day-to-day problems I encounter:
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Not being able to easily travel to countries with a foreign language and communicate my dietary requirements.
-
Being scared to consume foods that are made for me by family/ friends out of pure kindness, in case they’ve unknowingly used products I can’t have (FYI- gluten is hidden in most Asian sauces, stocks and even in obscure items like some jars of pickles!).
-
Having to be THAT person at an event like a wedding to triple check the food, is in fact, gluten-free.
-
Missing out on some of my old favourite foods and dishes that I used to enjoy with loved ones.
#5 Everybody knows what coeliac disease is these days (and is accommodating) right?!
Not in my experience. When I have gone to order my meal or enquire about menu items, I have often been faced with a combination of a lack of understanding or plain irritation, like I am really putting the staff out.
I have had waiters dismiss me, informing me that their head chef “won’t be doing that gluten-free thing”; and waitresses tell me that food is definitely gluten-free, only to come back after i'd started eating and say whilst laughing, “oops, the chef told me it actually isn’t, I hope it isn’t serious?!”.
Whilst I feel extremely lucky to be living in a time that does have SO many options available, the amount of “intolerances” surfacing, and people choosing to be gluten-free, really downplays the severity of coeliac disease. It’s safe to say, there is a lot of confusion. Not to mention a lot of chefs that aren’t loving this shift in demand.
#5 Everybody knows what coeliac disease is these days (and is accommodating) right?!
Not in my experience. When I have gone to order my meal or enquire about menu items, I have often been faced with a combination of a lack of understanding or plain irritation, like I am really putting the staff out.
I have had waiters dismiss me, informing me that their head chef “won’t be doing that gluten-free thing”; and waitresses tell me that food is definitely gluten-free, only to come back after i'd started eating and say whilst laughing, “oops, the chef told me it actually isn’t, I hope it isn’t serious?!”.
Whilst I feel extremely lucky to be living in a time that does have SO many options available, the amount of “intolerances” surfacing, and people choosing to be gluten-free, really downplays the severity of coeliac disease. It’s safe to say, there is a lot of confusion. Not to mention a lot of chefs that aren’t loving this shift in demand.
Nevertheless, hopefully this article can alleviate some of that confusion and help you understand a little bit more about coeliac disease. And now that we’re officially acquainted, stay tuned for the upcoming blog that will teach you how to be well-prepared as a coeliac, and give you some great food options when dining out!
Shani Kaplan
Shani Kaplan is a contributing writer for Truth Origins. She combines her knowledge gained from working within the fitness/wellness industry in Sydney and London for the last seven years as a Personal Trainer, and class instructor, with her addiction to research due to her BA in Business Marketing. Shani loves martial arts, resistance training, dance and yoga, nutrition, travel, design, photography, and art.
References
[1]nhs.uk. (2020). Coeliac disease. [online] Available at: https://www.nhs.uk/conditions/coeliac-disease/ [Accessed 3 Feb. 2020].
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