When I was first diagnosed with coeliac disease, I knew nothing about it therefore I had to quickly learn as much as I could. Along the way, I discovered that there were a lot of myths about the condition. Worrying myths which, sadly, some people believe to be true. Since it’s Coeliac Disease Awareness Week, I decided to write this post about some of those myths and give the correct facts instead.
Myths About Coeliac Disease – And the Correct Facts
When you are diagnosed with a new illness, you expect doctors to give you a wealth of information about it. Unfortunately, this doesn’t happen for many people who live with a chronic illness. I don’t want to criticise all doctors here, because some do pass on knowledge or refer their patients to another professional who can help. However, sometimes doctors give virtually no information and sometimes they even give wrong information. Patients are often left to research the condition themselves and, in a bid to find facts, they often find the myths too. The problem is that it is difficult for them to sort out the facts from the fiction.
So here are a few of the myths about coeliac disease along with the correct facts.
Myth Number 1 – Coeliac Disease is a Food Allergy or Intolerance
This is probably the biggest misconception. Coeliac disease is not a food allergy or intolerance.
Fact
Coeliac disease is an autoimmune condition.
The lining of the small intestines has small protrusions called villi which help people to digest food and help to absorb the nutrients from the food. But if a coeliac sufferer eats gluten (wheat, barley, rye or oats, unless the oats are labelled as gluten-free), the body attacks itself and flattens those villi. When that happens, a sufferer can become extremely unwell and they often develop nutritional deficiencies.
There’s no cure for coeliac disease but changing to a strict gluten-free diet will allow the villi to heal. However, healing can take time. It could take a few months or a few years before the villi recover.
Myth Number 2 – It’s Just a Fad Diet
No. It’s not.
Fact
For a coeliac disease sufferer, a gluten-free diet is a necessity. It is not a choice.
Myth Number 3 – It’s the Same as Being Vegan
No, it’s not this either but restaurants often show us their vegan menus when we ask for their gluten-free menus.
Fact
A vegan eats no animal produce. A coeliac eats no gluten.
Myth Number 4 – Coeliac Disease Only Causes Diarrhoea
This myth about coeliac disease is so so false.
Fact
Coeliac can cause a multitude of symptoms. It can also be a silent disease which means that there are no outward symptoms, however, the damage is still being done internally.
Many symptoms are caused by nutritional deficiencies as a result of malabsorption due to the flattened villi. This is why it is imperative to eat a gluten-free diet.
Some symptoms of coeliac disease include:
- diarrhoea
- constipation
- bloating
- nausea
- wind
- mouth ulcers
- fatigue
- tiredness
- brain fog
- cognitive impairment
- depression
- headaches
- joint pain
- muscle pain
- neuropathy
- delayed puberty
- weight loss
Another condition linked to coeliac disease is dermatitis herpetiformis. This causes a painful, itchy rash and is also caused by the same autoimmune reaction when gluten is consumed.
People with coeliac disease or dermatitis herpetiformis may also suffer from reduced spleen function and are more at risk of developing osteoporosis, type 1 diabetes and thyroid disease as well as other autoimmune conditions. Infertility, small bowel cancer and lymphoma are also more prevalent, however, they can normally be avoided by following a strict gluten-free diet.
Myth Number 5 – You Can Grow Out of Coeliac Disease
Unfortunately, this is not true.
Fact
Coeliac disease is a life-long autoimmune condition.
Myth Number 6 – After a While, You Can Gradually Reintroduce Gluten
Definitely not true.
Fact
Since it’s a lifetime condition, gluten can never be reintroduced.
Myth Number 7 – Gluten Can Be Burnt Off In the Cooking Process
No, it can’t but some restaurant and takeaway staff seem to think it can.
Fact
Gluten is a protein. Even if you burnt it to a cinder, the gluten would still exist. It wouldn’t disappear and it would still do harm. If a restaurant or takeaway ever tells you that gluten can be burnt off, walk right back out of the door.
Myth Number 8 – A Little Bit of Gluten Won’t Do You Any Harm
It will.
Fact
Gluten, even the tiniest amount, can cause damage to people with coeliac disease. Even if they have no outward symptoms, it will affect the body in some way.
Sometimes people eat something believing it to be safe when it’s not. Or they might accidentally eat something which has been contaminated with gluten. These accidents can be painful. But if someone knowingly eats gluten regularly, they could damage their future health, even if they have no symptoms straight away.
Myth Number 9 – You Can Eat Products With a ‘May Contain Gluten’ Warning
Some people believe that this is ok but it’s not.
Fact
In most countries, there are strict food labelling laws. This means that manufacturers must declare gluten if it’s used as an ingredient. ‘May contain’ warnings are slightly different here in the UK. Here, a manufacturer does not legally have to declare may contain warnings, however the Food Standard Agency request that they do this if there is a risk. The risk could be from cross-contamination due to other gluten-containing products being on the same production line or from flour floating about the air.
Since manufacturers are not legally obliged to add a may contain gluten warning, it means that when they add one, they really do believe there is a risk. Why else would they add a warning which will potentially stop sales of their product?
Some coeliac disease sufferers do eat products with a ‘may contain’ warning and say they have no ill effects. But if they are consuming gluten, the damage can be done without showing any symptoms. That damage could be serious.
The advice from Coeliac UK is to avoid ‘may contain’ warnings. Personally, I don’t believe it’s worth the risk. If someone handed me a bar of chocolate and said it may contain rat poison, I wouldn’t eat that. I look on gluten in the same way.
Myth Number 10 – Coeliacs Can’t Use Shampoo or Cosmetics Containing Gluten
They shouldn’t cause a problem.
Fact
If you have coeliac disease, you need to ingest gluten before it can cause a problem. Being on your hair or skin will not affect you unless they find their way into your mouth.
However, if you also have a gluten allergy, those products may cause a problem for you.
Myth Number 11 – All Gluten-Free Food is Disgusting
It doesn’t have to be.
Fact
There are lots of nice gluten-free products in the shops and most taste much the same as normal food. Finding nice bread is often a problem for people but there are some nice finds out there. I love gluten-free tiger loaves, sourdough bread and seeded breads from various supermarkets. A few years ago, I would never have believed that I’d use the words love and gluten-free bread in the same sentence, but there you go. It took time, but eventually, I found several types of bread that I really enjoyed.
I cook and bake when I’m able to and, really, if you have coeliac disease, it’s worth doing that rather than trying to buy lots of food from the gluten-free aisles of the supermarkets. That’s an expensive way to shop and there’s not always a great deal of choice.
If you’ve never baked before or you don’t feel confident about cooking, there’s plenty of help online. There are groups on Facebook with gluten-free recipes and loads of advice. Another blogger, Becky Excell has recently published a cookbook, How to Make Anything Gluten-Free. It covers everything – main meals, savoury snacks and lots of cakes and biscuits. People rave about Becky’s book so you might find it helpful. She’s also about to publish another cookery book called How to Bake Anything Gluten-Free which can be pre-ordered on Amazon just now.
So if you believe that all gluten-free food is disgusting, roll up your sleeves and get your mixing bowls out and you’ll discover that it doesn’t have to be.
Ignore the Myths About Coeliac Disease
If you’ve been diagnosed with coeliac disease, please ignore the myths about the condition and take only the facts on board. Get information about the illness from reputable sources like Coeliac UK or the equivalent in your country.
This was so interesting, I learnt far more about Coeliac disease than I knew .
It is so good to get the facts out there .
People shrug these things off .
I have heard people say things like
Oh she is just fussy
Would be insulting if their ignorance was not taken into account .
Restaurants are taking things more seriously now .
However it must be hard to trust when the consequences can be so dire .
Well done Liz ,we all need more understanding about conditions others are dealing with.
Thank you, Lyn. It can be annoying when people think we’re just being fussy.
Thanks for your comment.
You’re right. So many people, myself included, have had a diagnosis but no information or support. It’s ironic because there’s the assumption I suppose that we’ll find that information for ourselves, yet they don’t usually like it when we do!
This is a fantastic way to explain what Coeliac is and is not. I think ‘gluten free’ has become more of a ‘fad’ and ‘trend’, totally confusing the issue of how coeliac disease is a debilitating autoimmune condition! I suppose diet preferences and sensitivities and such can get stereotyped and Coeliac gets incorrectly lost in the blur. You’ve also made a really good point on body products and the issue of gluten allergy being different in that aspect.
While I had some symptoms, quite a few actually, Coeliac wasn’t found for me. They don’t know what made my large bowel die in the end but I had years and years of no help, no diagnoses, nothing. So while I don’t know as much about Coeliac, which is why I love posts like this, I get how awful some of these symptoms are. Like you say, it’s not just bowel-related either, there can be much wider knock-on effects.
Some restaurant staff think gluten can be burnt off during cooking?? 😂
I’m sure there are plenty of people newly diagnosed with Coeliac who would benefit from reading this! xx
It is so frustrating that there are so many myths and people who assume they know it all when it comes to a health condition or disability. The best understanding and knowledge comes from the people with experience that live the life. Great, insightful and educating post.
Thanks for the info. Our granddaughter was suspected of it but later cleared. And I’ve been curious abut it. I knew a girl in high school who was diagnosed with it – decades ago when it was very difficult to be gluten-free. But it literally saved her life. And good friends had several grandchildren with it. They had difficulties going out to restaurants; in fact, after some bad experiences there are only two they will go to. Good luck with your life.
Thank you for this informative post. It still amazes me how many misconceptiions there are about those of us with this diagnosis and gluten free lifestyle.