top of page

Why undiagnosed coeliac disease is so awful

Were you able to listen?

Last week, I had a fab opportunity to speak with John Darvall on BBC Bristol radio about a topic that’s deeply personal to me: the horrors of undiagnosed coeliac disease.

John was brilliant; he really wanted to centre our talk about what it's like not to know what's wrong with you. We talked about multiple rubbish misdiagnoses I was given and why it was so terrible for my mental health.

The Unseen Coeliac Struggle

For those of you who aren't aware, coeliac disease is an autoimmune disorder (NOT an allergy) where eating gluten leads to damage in the small intestine. This gradually destroys the villi – tiny, finger-like projections lining the small intestine (responsible for absorbing nutrients). When these villi are damaged, the body's ability to absorb essential nutrients can be severely compromised.

The problem? Many people suffer for years without knowing the root cause of their ailments.

I know. I was one of them.


During my slot on BBC Bristol, John Darvall and I delved into the common misdiagnoses that plague coeliac sufferers. As you'll know if you've listened, I had several misdiagnoses which included an unnecessary operation under general anaesthetic. The delay in getting a proper diagnosis isn't just frustrating: it's dangerous.

The Overwhelming Symptoms

Undiagnosed coeliac disease is like the Hooded Claw - it can take so many disguises, making it a chameleon of illnesses. Here are some of the most common and debilitating:

  1. Gastrointestinal Issues: chronic diarrhoea, constipation, bloating, and wind are typical.

  2. Fatigue and Weakness: Due to poor nutrient absorption, sufferers often experience extreme tiredness and weakness, making daily activities a challenge.

  3. Skin Problems: intensely itchy and blistering skin.

  4. Mental Health Struggles: Depression, anxiety, and irritability are common (and why wouldn't they be when you have to deal with all of the above?)

  5. Unexplained Weight Loss or Gain: Malnutrition from poor absorption can lead to weight loss (although not in my case - I looked well-fed).

The Long-Term Consequences

Leaving coeliac disease undiagnosed and untreated can lead to long-term health issues, including osteoporosis and (in very rare cases) small bowel cancer.

Raising Awareness and Seeking Solutions

I'm hoping my conversation with John Darvall will not only help raise awareness about coeliac disease but also speed up people's diagnoses. The more people know, the quicker they can recognise the symptoms and seek appropriate testing.

Don't Stop Eating Gluten (Yet)

Think you might have coeliac disease? Make sure you get tested before making any dietary changes. If you're not eating gluten, the blood tests and biopsy may give a false negative.

Make Sure You've Listened (And Shared!)

By increasing awareness and understanding, we can help those suffering in silence to find their voice and get themselves to the doctor without being gaslit. If you missed my discussion on BBC Bristol with John Darvall, I urge you to listen to the replay, educate yourself, and then share it with someone you know who'll benefit. Here's the first minute to whet your gluten-free appetite!


Hi! Great to have you here...

My name's Ali and I help people on gluten-free diets have a better, easier and healthier lifestyle. 

  • Facebook
  • Instagram
  • Twitter
Ali Walsh pink dress.jpg
bottom of page