The life and times of a Swindon Coeliac

Food and Drink Focus: Amanda Wilkins reveals the ups and downs of being coeliac

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The overwhelming foodie rollercoaster of Coeliac Disease

By Amanda Wilkins

Coeliac Disease is an autoimmune condition in which the body’s immune system attacks its own tissues when gluten, a dietary protein found in wheat, barley and rye, is eaten. Many Coeliacs are also sensitive to oats. The condition affects 1 in 100 people in the UK, however only 36% are medically diagnosed. This means that there are an estimated 500,000 people living in the UK who are currently undiagnosed.

Symptoms range from mild to severe, and general symptoms may include:

• tiredness (fatigue) as a result of not getting enough nutrients from food

• malnutrition

• unintentional weight loss

• an itchy rash

• infertility

• nerve damage

• disorders that affect co-ordination, balance and speech

I was diagnosed with Coeliac disease following a blood test back in 2020, and it came as a complete shock. My only symptoms were extreme tiredness and a persistent skin rash. I had never heard of Coeliac Disease, I always thought that people who avoided gluten were the fussy, hippy type. I certainly didn’t realise that it was a serious condition that would affect my life quite so drastically.

After Googling the disease I was left with more questions than answers. The support from the GP surgery was significantly lacking; I waited a year for an endoscopy and even longer to speak to a dietitian.

Once Coeliac Disease is flagged up via a blood test, the advice is to continue eating gluten until the diagnosis is confirmed via an endoscopy. As we were still in the depths of Covid and lockdowns at the time I knew I was in for a significant wait, so I cut out gluten completely with a view to re-consuming it six weeks prior to an endoscopy.

This is not advised as symptoms can return ten-fold once you start eating gluten again. ( I did see a rise in my symptoms when I re-introduced gluten, which now included brain fog and numbness in my fingers, which was concerning, although I did enjoy being able to eat good bread and Wheat Crunchie crisps again.)

I vividly remember my first trip to the supermarket after the initial blood test results, and feeling completely overwhelmed at the prospect of buying food.

The ‘free from’ aisle was one that I had never ventured down and I was shocked and dismayed at the high prices, especially given the teeny, tiny loaves of bread which are generally more hole than bread!

Foods that ‘may contain’ gluten are also off limits for Coeliacs, so I very quickly become an expert in reading and understanding food labels. Many foods are naturally gluten-free and this tends to be my go-to due to a limited budget.