Why Coeliac Disease Goes Undiagnosed — A Personal Story and Call for Better Awareness

This article was originally published on Medium. You can read it here.

I was in my late teens when I finally received a diagnosis for coeliac disease after years of unexplained sickness, unsuccessful medical appointments, and being told my physical symptoms were “just anxiety”. I’m far from alone. In the UK today, an estimated 64% of people with coeliac disease remain undiagnosed, battling through a huge range of symptoms and unknowingly risking long-term complications.

The consequences of delayed diagnosis can be devastating, yet they are preventable with earlier screening. But sadly, public awareness of coeliac disease is still low.

This Coeliac Disease Awareness Month, it’s time to talk about why early diagnosis is crucial, what’s standing in the way, and how we can ensure more people get screened for coeliac disease. In the following article I weave personal memoir with investigative insight and research to bring this overlooked crisis to light.

Melting butter on a soft fluffy baked potato split open down the middle. Grated cheddar stuffed in followed by dollops of baked beans. The way the crisp cool lettuce and cucumber contrasts against the warm liquid tomato juice of the beans. It’s comfort on a plate. There are no surprises, I always know where I’m at with this loyal meal, one of the few that has never made my belly squirm with nausea. 

My entire childhood, I had one set meal that I ordered when we went out for lunch: a jacket potato with cheese and beans, accompanied by a simple green side salad. This order never changed. We didn’t eat out much, only as a special treat like on birthdays or on the drive up to Scotland from Newcastle in the school holidays. As an adult living and working abroad in far away places, it was always the meal I longed for when I was homesick and the first one I ate upon returning.             

Looking back at food from my childhood is a strange kind of nostalgia. So many of my favourite meals, unbeknownst to me, were causing damage to my small intestine and making me sick. It was the kind of unwell that can slip between the cracks, and go unnoticed for years. Lots of seemingly unrelated smaller symptoms built up over time until it became clear that there was something seriously wrong. 

Due to a lack of cultural awareness and education, my parents didn’t know the signs to look out for of the systemic autoimmune disorder that I was showing, nor did the school or the doctors. 

Eventually, my mum took me to the doctors when I was a teenager. The GP noticed I was underweight and assumed I had an eating disorder. I loved food but I was malnourished because I had a disease that was making my body attack itself so that I couldn’t fully absorb nutrients from food. In a separate appointment seeking help for fainting I was told  ‘it's normal for teenage girls to faint’.

 I knew there was an urgent issue out of sight beneath my skin, but it wasn’t until 4 years of trying different GPs that one finally believed me. It’s only in recent years that I’ve fully understood how damaging it is psychologically to be repeatedly turned away by the people who are supposed to be there to help you.

Medical providers dismissing a patient's concerns is an all too common story for women and AFAB people seeking diagnosis and treatment for chronic illnesses. 

Women are disproportionately affected by autoimmune diseases and account for nearly 80% of all cases in the UK, yet it takes around four years for women to be diagnosed with an autoimmune condition. 

Even then, it takes seeing an average of five doctors before a diagnosis is finally made. Chronic underfunding of the NHS means that the system isn’t fit for purpose. Many caring and compassionate healthcare professionals simply do not have the resources or time to give patients the level of care required.

Furthermore a medical system drenched in bias has long overlooked the female sex, seeing us as hysterical women who don’t know our own bodies and minds. This bias undoubtedly affects our care. In an article for the Autoimmune Association Lily Stairs says “The dismissal and disbelief of women living with autoimmune diseases significantly impacts time to diagnosis and proper treatment.”

New research also shows a link between endometriosis and immune conditions “Women with endometriosis were found to have a 30-80% increased risk of developing autoimmune diseases like rheumatoid arthritis, multiple sclerosis, and coeliac disease, as well as autoinflammatory conditions like osteoarthritis and psoriasis.”

The days stretch out to be painfully long when you’re juggling multiple symptoms with no end in sight and no advocate in your corner. Every second of delay to diagnosis has an impact. 

I’ve kept journals my whole life. This means that I can look back and create a timeline around my health, highlighting what I now know to be signs and symptoms. Based on this, I reckon I’d suffered at least a decade of damage to my insides before getting answers, and what I believe to be a life saving diagnosis. 

Aged 18, I was finally diagnosed with coeliac disease, a serious genetic autoimmune disorder where the body's immune system attacks the small intestine after eating gluten. 

Gluten is a protein found in wheat, rye, and barley and currently, the only treatment for coeliac disease is to follow a lifelong strict gluten free diet. 

Avoiding cross contact with gluten is important too, because even small amounts of gluten in our food, say from crumby butter, can cause a reaction. It took time to heal and caused me all kinds of complex issues long after starting treatment. It didn’t have to be that way, with more awareness of coeliac disease and earlier testing I could have had an entirely different childhood, adolescence and young adult years. 

Research into the mental health impacts of celiac disease is often underrepresented compared to other chronic conditions. Many of the symptoms for undiagnosed coeliac disease can be physical such as bloating, abdominal pain, diarrhea, mouth ulcers and unexpected weight loss. But of course being malnourished and fatigued can lead to all kinds of emotional difficulties too. Psychological symptoms of coeliac can include anxiety, depression and sleep difficulties.

There are over 200 known symptoms of coeliac disease, and everyone experiences it differently. 

One person might have chronic migraines, another person could be more impacted by gastrointestinal symptoms, and for someone else it could be ongoing fatigue or low iron levels. This can make it really hard for a person to even know something is wrong if they're experiencing a lesser known symptom of coeliac disease.

I believe coeliac should be screened for everyone, but currently an estimated 500,000 people in the UK are living with this serious condition undiagnosed and untreated. The NHS says “Coeliac disease is a condition that affects at least 1 in every 100 people in the UK. But some experts think this may be underestimated because milder cases may go undiagnosed or be misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS).”

There are also many associated conditions with coeliac disease. 

Coeliac UK says “Coeliac disease is more common in people with Type 1 diabetes and autoimmune thyroid disease” so if you have either of these then it can be worth getting screened for Coeliac disease too. Undiagnosed and untreated coeliac disease can lead to a greater risk of developing osteoporosis, anaemia, bowel cancer, infertility, miscarriages and more.

The potential consequences of living with undiagnosed and untreated coeliac disease can be fatal and I can’t fathom why this disease isn’t taken more seriously with better screening in place to detect and treat it earlier. Given the initial screening process is a simple blood test, I see no reason as to why it isn’t more routinely offered.

Italy has become the first country in the world to pass a law requiring all children under the age of 18 to be screened for coeliac disease. This is amazing news and something I hope to see here in the UK as a matter of urgency. 

The relief I felt to finally have the right diagnosis instead of being sent away with the same old brush off of “it’s just anxiety” is akin to the relief I still feel to this day when I sit down to  eat my safe food. That loyal warm jacket potato with cheese and beans accompanied by a simple green side salad. It’s the meal I crave when I need comfort and thankfully, it’s naturally gluten free so I never had to give it up.

A message from Coeliac UK for Coeliac Awareness Month this May

“With only 36% of people with coeliac disease currently medically diagnosed in the UK, there are an estimated 500,000 people experiencing unexplained and often debilitating symptoms. 

For this year’s Coeliac Awareness Month (1-31 May), Coeliac UK is urging the public to ask, “Is it coeliac disease?” and take the charity’s free online self-assessment to find out. 

People can check if they are experiencing symptoms associated with coeliac disease and if they are recommended or should be considered for testing for the condition based on published clinical guidelines.  Our mission is to find the estimated 500,000 living with undiagnosed coeliac disease and guide them on the road to recovery.”