Medical Disclaimer
The information provided in this article is for educational and informational purposes only and is not intended to replace professional medical advice, diagnosis, or treatment.
If you are experiencing symptoms that may be related to coeliac disease or another health condition, you should speak with a qualified healthcare professional, such as your doctor or a registered dietitian, for personalised advice.
Do not start a gluten-free diet before being tested for coeliac disease unless advised by a healthcare professional, as removing gluten can affect the accuracy of testing and may make it more difficult to receive a correct diagnosis.
The symptoms mentioned in this article are not exclusive to coeliac disease and may also occur with other medical conditions. Always seek professional medical guidance if you have concerns about your health.
Information in this article is based on reputable health organisations and sources available at the time of publication. Medical guidelines and recommendations can change, so readers should consult current advice from trusted healthcare providers and recognised coeliac disease organisations.
What Is Coeliac Disease?
Coeliac disease is an autoimmune condition where the immune system reacts abnormally to gluten, a protein found in wheat, barley and rye. When someone with coeliac disease eats gluten, it can cause damage to the lining of the small intestine, affecting the body’s ability to absorb important nutrients.
Unlike a food intolerance, coeliac disease is a lifelong medical condition that requires a strict gluten-free diet after diagnosis. Even small amounts of gluten can trigger inflammation and intestinal damage in people with coeliac disease.
One of the biggest challenges with coeliac disease is that symptoms can look very different from person to person. Some people experience obvious digestive problems, while others may only have mild symptoms or symptoms that seem unrelated to their gut.
Many people go years without a diagnosis because their symptoms are mistaken for other conditions such as irritable bowel syndrome (IBS), stress, food sensitivities, or simply “normal” digestive problems. It took about 3 years and multiple doctors until I finely got my diagnosis.
Common Symptoms Of Coeliac Disease
Coeliac disease has a long list of possible symptoms, and not everyone will experience the same ones. Some people have many symptoms, while others may have very few. I have 13 symptoms out of the lists below.
Digestive Symptoms
Common digestive symptoms can include:
- Bloating
- Stomach pain or cramps
- Diarrhoea
- Constipation
- Excessive gas
- Nausea
- Vomiting
- Changes in bowel habits
- Feeling uncomfortable after eating
- Poor appetite
- Weight loss or difficulty maintaining weight
These symptoms can occur because damage to the small intestine affects digestion and nutrient absorption.
Non-Digestive Symptoms Of Coeliac Disease
Many people are surprised to learn that coeliac disease can cause symptoms outside the digestive system.
Possible non-digestive symptoms include:
- Ongoing tiredness or fatigue
- Weakness
- Iron deficiency anaemia
- Low vitamin levels
- Headaches
- Brain fog or difficulty concentrating
- Mood changes
- Bone problems caused by poor nutrient absorption
- Joint or bone pain
- Skin problems
- Tingling or numbness in hands and feet
- Fertility problems
- Delayed growth in children
Children may also show signs such as poor growth, delayed puberty, irritability, stomach problems, or weight concerns.
Skin Symptoms Linked To Coeliac Disease
Some people with coeliac disease develop a skin condition called dermatitis herpetiformis. This can cause:
- Extremely itchy skin
- Small bumps or blisters
- Rash, often on elbows, knees, buttocks, or scalp
Dermatitis herpetiformis is strongly associated with coeliac disease and should be discussed with a healthcare professional.
Who Should Consider Getting Tested For Coeliac Disease?
Anyone experiencing ongoing symptoms that could be linked to coeliac disease should discuss testing with their doctor.
Testing is especially important if you:
- Have ongoing digestive symptoms
- Have unexplained iron deficiency
- Have a close family member with coeliac disease
- Have another autoimmune condition
- Have symptoms that improve when avoiding gluten
- Have unexplained fatigue or nutrient deficiencies
Having a close relative with coeliac disease increases your risk. People with a first-degree relative (parent, child, or sibling) have a higher chance of developing the condition.
How Is Coeliac Disease Diagnosed?
A common mistake people make is removing gluten before getting tested. This can make test results inaccurate because the immune response may decrease when gluten is removed from the diet.
If you suspect coeliac disease, it is important to speak with your healthcare provider before starting a gluten-free diet.
Step 1: Speak To Your Doctor
Your doctor will discuss:
- Your symptoms
- Your family history
- Your medical history
- Any nutrient deficiencies
- Whether coeliac disease could explain your symptoms
They may arrange blood tests if coeliac disease is suspected.
Step 2: Blood Tests
The first stage of testing usually involves blood tests that look for specific antibodies associated with coeliac disease.
If blood tests suggest coeliac disease, further testing is usually required to confirm the diagnosis.
Step 3: Endoscopy And Biopsy
In many cases, confirmation involves a gastroscopy where small samples (biopsies) are taken from the small intestine.
An intestinal biopsy has traditionally been considered the gold standard for confirming coeliac disease because it allows doctors to check for damage to the intestinal lining.
I have had a few of these done to confirm I have coeliac disease and some for a new drug trial, there not as scary as they sound.
Why You Should Not Start A Gluten-Free Diet Before Testing
Many people feel better when they remove gluten, but this does not confirm coeliac disease.
Starting a gluten-free diet before testing can make blood tests and biopsies harder to interpret. If you think you may have coeliac disease, talk to your doctor first about the correct testing process.
A confirmed diagnosis is important because untreated coeliac disease can increase the risk of complications, including nutrient deficiencies and bone health problems.
Where To Get Help With Coeliac Disease Around The World
If you have been diagnosed with coeliac disease, or you are looking for reliable information, support organisations can help.
New Zealand
For people living in New Zealand, a great place to start is:
They provide information about diagnosis, gluten-free living, food safety, support, and resources for people with coeliac disease.
You can also find health information through:
Health New Zealand – Coeliac Disease Information
Australia
Support and information are available through:
They provide education, food information, and support for Australians living with coeliac disease.
United Kingdom
People in the UK can find information and support through:
They provide guidance on diagnosis, gluten-free living, eating out safely, and managing coeliac disease.
United States
In the USA, helpful organisations include:
They provide information about symptoms, diagnosis, research, and living gluten-free.
Another useful resource is:
Canada
People living in Canada can find information through:
They offer education, resources, and support for people affected by coeliac disease.
What To Do If You Think You Have Coeliac Disease
If you recognise several symptoms of coeliac disease, the best first step is to make an appointment with your doctor.
Before your appointment, it can help to write down:
- Your symptoms
- How long you have had them
- Foods that seem to trigger symptoms
- Any family history of coeliac disease
- Any previous blood tests showing low iron or vitamin levels
Getting the correct diagnosis can help you understand what is happening in your body and get the right support.
Coeliac disease can feel overwhelming at first, but with the right information, medical guidance, and support, many people go on to live healthy and happy gluten-free lives.
Disclaimer:
This article is for educational purposes only and does not replace medical advice. If you think you may have coeliac disease, speak with a qualified healthcare professional for testing and diagnosis.
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