THE TRUTH ABOUT COELIAC DISEASE:
40 EYE-OPENING FACTS THAT WILL SURPRISE YOU.
If you’re reading this, chances are you or someone you know has (or might have!) coeliac disease. Here at The Food Crafters, we’re obsessed with food research. In particular, breakthroughs in gluten-free products. Along the way, we’ve learnt an awful lot about coeliac disease (pronounced seel-ee-ak). Read on for our top 40 fascinating facts about coeliac disease that will definitely surprise you!
WHAT ON EARTH IS COELIAC DISEASE?
What’s coeliac disease you ask? In a nutshell, when someone with coeliac disease eats gluten, their body’s immune system attacks the tiny, finger-like projections (called villi) on the lining of the small intestine. The villi become flattened and damaged. This reduces the amount of available surface area of the bowel and limits the amount of nutrients your body can absorb.
Did you know coeliac disease and gluten sensitivity are not the same?
Coeliac disease is an autoimmune reaction to gluten. Basically, the disease doesn’t attack the gluten, it attacks the lining of your small intestine.
If you have non-coeliac gluten sensitivity, you might have a lot of the symptoms of coeliac disease BUT the gluten doesn’t damage your small intestine.
The dark side of coeliac disease.
The long-term consequences of untreated coeliac disease are things like chronic systemic inflammation, poor nutrition and malabsorption of nutrients. Undiagnosed coeliac disease can also increase your risk of developing cancer. Luckily, with the right diagnosis and strict avoidance of gluten for life, any symptoms can be prevented and often reversed. To read more about this, click here!
SHOULD YOU BE FRIGHTENED ABOUT GETTING COELIAC DISEASE?
Coeliac disease can affect anyone at any age. Don’t worry, though, coeliac disease isn’t contagious! Instead, it’s hereditary.
The dormant coeliac gene can be triggered by environmental factors that can happen at any time of your life.
If you have a parent, child or sibling with coeliac disease, you have a one in 10 risk of developing coeliac disease.
30% of people carry the gene for coeliac disease.
While 30% of the population carry the genes for coeliac disease, only 1 in 30 of these people will actually get it. Interestingly, some experts believe that only five per cent of people with coeliac disease actually know they have it!
Are you at risk of getting coeliac disease?
The sad fact is that no one knows the precise cause of coeliac disease.
HOW DO YOU KNOW IF YOU HAVE COELIAC DISEASE? THE SYMPTOMS AND SIGNS YOU NEED TO KNOW!
There are hundreds of symptoms associated with coeliac disease BUT some people have no symptoms at all – which can make things tricky! Check out the list of some of the most common symptoms, below.
Some symptoms of coeliac disease in children
- bloating, stomach pain, diarrhea or constipation
- pale, nasty-smelling stools
- weight loss
- tiredness and irritability
- problems with tooth enamel
- failure to thrive or delayed puberty
- Attention Deficit Hyperactivity Disorder
Some symptoms of coeliac disease in adults
- iron-deficiency anaemia
- sore bones or joints
- arthritis, osteoporosis or osteopenia
- liver disease
- type 1 diabetes
- autoimmune thyroid condition
- anxiety or depression
- tingling, numbness or pain in your hands and feet
- missed menstrual periods
- infertility or recurrent miscarriage
- mouth ulcers
- easy bruising or an itchy skin rash
Help! How do I find out if I have coeliac disease?
Just because you feel better when you don’t eat gluten doesn’t mean you have coeliac disease. We wish it were that easy! No, the most common ways to diagnose coeliac disease are blood testing, biopsy, and gene testing.
Blood tests for coeliac disease
Blood tests measure your blood antibody levels in response to gluten. If you test positive, you won’t be automatically diagnosed with coeliac disease. Instead, you will need a small bowel biopsy.
Small bowel biopsy
For a small bowel biopsy, your doctor will insert a thin tube into your mouth and then into the first part of the small bowel to collect samples for testing. If the results are unclear, you might be asked to undergo a genetic test.
Genetic testing for coeliac disease
If the blood test or small bowel biopsy results are unclear, or if you didn’t eat enough gluten to ensure the tests were reliable, you might need to do a blood test for the coeliac genes HLA DQ2 or HLA DQ8.
A positive test on its own cannot confirm you have coeliac disease, however a negative result will rule out the possibility.
The dangers of untreated coeliac disease are all too real!
If you think you might have coeliac disease, please see your doctor! Left untreated, coeliac disease can lead to very serious long-term health complications. These can include:
- Iron-deficiency anaemia
- Early onset osteoporosis or osteopenia
- Lactose intolerance
- Vitamin and mineral deficiencies
- Central and peripheral nervous system disorders
- Pancreatic insufficiency
- Gall bladder malfunction
Will coeliac disease make you gain weight?
Does coeliac disease cause weight gain? The short answer is, yes in some people, and no in others. If your small intestine isn’t absorbing a lot of nutrients, the food will pass into the lower part of your small intestine and the colon. As the intestinal bacteria tries to digest the food particles further, excess gas is produced, causing bloating, constipation and weight gain.
Just to confuse things further, coeliac disease sometimes causes weight loss. This is because the small intestine won’t be efficiently absorbing carbs, protein and fats. That means you’ll be absorbing fewer calories and, as a result, you’ll lose weight. Less food absorption can also cause chronic diarrhea and loss of appetite, which also contribute to weight loss. Obviously, this isn’t a good way to lose weight though!
Does coeliac disease make you tired?
If your body isn’t absorbing nutrients properly, you can definitely feel tired. Coeliac disease can also lead to iron deficiency, which will cause you to feel tired. Worse, the active disease can give you insomnia.
Does coeliac disease cause stomach pain?
It can. Food that isn’t absorbed in the small intestine passes into the lower digestive tract. As your digestive system and bacteria try to digest the food, excess gas is produced. This can cause bloating, constipation, diarrhea and, yes, stomach pain.
Did you know 32% of coeliacs have an iron deficiency?
You heard right! An estimated 32% of people with coeliac disease have iron deficiency anaemia.
The jury is out on whether coeliac disease affects fertility.
A number of studies over the last couple of decades have suggested a link between coeliac disease and female and male infertility and/or miscarriage. However, other studies have not found a link. In other words, the jury is still out.
IS COELIAC DISEASE A LIFE SENTENCE?
Unfortunately, if you have coeliac disease, it’s with you for life but that doesn’t mean it can’t be managed. At the moment, the only recognised medical treatment for coeliac disease is a strict, lifelong, gluten-free diet. Let us break it down for you!
What foods should you avoid if you are coeliac?
If you’re a coeliac, avoid the following foods:
- Wheat germ
- Wheat flour
- Wheat bran
- Icing sugar mixture
- Brewer’s yeast
- Malt/malt extract
- Malt vinegar
- Oat bran
- Triticale (a hybrid of wheat and rye)
Where unexpected gluten SOMETIMES lurks.
The following ingredients may contain gluten, depending on the grain they are made from.
- Starch/modified starch thickeners
- Textured vegetable protein
- Yeast extract
- Vegetable extract
- Hydrolysed vegetable protein
- Baking Powder
- Soy sauce
- Some soy products
Did you know not all ingredients from wheat contain gluten?
Some ingredients made from wheat are so highly processed that all the gluten has been removed. This includes ingredients like glucose, glucose syrup, caramel colour (150b) and dextrose.
What sort of diet is best for someone with coeliac disease?
Just because you have coeliac disease doesn’t mean you’ll need to eat boring food for the rest of your life. There are many gluten-free alternatives to traditional staples, like bread and pasta.
Bear in mind that a healthy, gluten-free diet includes fresh foods that are minimally processed, such as plenty of vegetables, fruit, nuts, seeds, legumes (beans, lentils, chickpeas) and, if you choose, meat, poultry, fish, seafood and/or dairy as well.
Tiny amounts of gluten can be enough to damage intestinal lining. Therefore, care must be taken in the kitchen to avoid cross contamination with gluten. It is important to store, prepare and cook gluten free foods separately from foods that contain gluten.
If you’re coeliac, these foods are your friends!
Naturally gluten-free food groups
- Fresh fruits and vegetables*
- Meat and poultry
- Fish and seafood
- Milk, cheese and most yoghurts
- Legumes (beans, lentils, chickpeas)
- Nuts and seeds
Gluten-free grains and starchy foods
- Corn (maize)
- Buckwheat groats
- Gluten-free oats
- Nut flours
Important: Some naturally gluten-free grains may contain gluten from cross-contact with gluten-containing ingredients through harvesting and processing. Make sure you only buy grains that are gluten-tested and contain less than 20 ppm.
Coeliac disease Ingredient List Booklet
If you’re interested, you might like to check out Coeliac Australia’s Ingredient List Booklet. It lists more than 800 ingredients and 300 additives used in Australia.
What to look for on the labels?
Australian food laws require all ingredients to be listed on product packaging. If you have coeliac disease, even small amounts of gluten can damage your small intestine, so it is important to read the labels carefully.
The label will often say either ‘gluten free’, ‘contains gluten/contains traces of gluten’ or ‘may contain traces of gluten’ but what exactly does that mean? Here’s a breakdown.
A product can only be labelled as ‘gluten free’ when it has no ‘detectable’ gluten, i.e. less than 0.003%. It’s the law. If you’re on a gluten-free diet, these products are safe to eat.
Contains gluten/contains traces of gluten
Even if the ingredients list doesn’t mention a source of gluten, this product has gluten lurking somewhere. If you’re on a gluten-free diet, avoid this product.
May contain traces of gluten
Avoid this product.
Questions to ask when dining out?
If you have coeliac disease, there are still many restaurants that cater to your needs. You just have to look a little harder and ask a few more questions.
Do your research
Go to the restaurant’s online menu and, if you don’t see any gluten-free options, it’s worth giving them a call to see if they can cater for your needs. Coeliac Australia also has an accredited restaurant directory available to its members in every State.
Making a booking
When you make your booking always mention you will be ordering a gluten-free meal due to coeliac disease. You want them to take you seriously, so they need to know this is a medical issue not a lifestyle choice.
When you arrive
Let the waiter know you don’t eat gluten due to coeliac disease, then ask them to take you through the gluten-free menu items. If you’re with people, place your order last. That way, the details are less likely to be forgotten!
TOO MUCH INFO IS NEVER ENOUGH!
At The Food Crafters, we’ve made it our mission to spread the word about living with coeliac disease. While we really hope this article has answered a lot of your questions, it’s such a huge topic it would come as no surprise if you wanted to know more – or even if you have some information you’d like to add. If you do, shoot us an email and let’s start a conversation!