'I was violently ill for weeks - then I found out the real cause'

A woman who suffers from “silent coeliac” has spoken out about the difficulties of the disease.

Philippa Lee says she loved grabbing a bite to eat with loved ones, cooking up a storm and jetting off on holiday for fine dining experiences.

But after years of feeling that she never had “full health”, Phili, from Stockport, was eventually diagnosed with coeliac disease at 25 years old.

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It is a widely known gluten-related condition and causes the immune system to attack its own tissue and damage the gut when gluten is digested.

This then prevents sufferers from taking in vital nutrients from food and can cause a variety of unpleasant symptoms such as stomach pain, severe bloating, diarrhoea, indigestion, vomiting, constipation, and unexpected weight loss.

“I was diagnosed with coeliac disease back in 2019 and had to navigate learning to live gluten free.

“I also learned that my Dad’s stomach cancer, which he sadly passed away from, was likely a result of long-term damage caused by undiagnosed Coeliac disease,” Phili, now aged 30, said.

Though many people are aware of coeliac disease, Phili says it is less known that you could suffer from the condition given many people don’t manifest symptoms.

“I was surprised when I was first diagnosed. Like many others, I suffered from silent coeliac which is a reaction to gluten but where you may not manifest many symptoms.

“I didn’t experience some of the severe symptoms but I never truly felt like I was at full health,” she said.

According to Coeliac UK, 1 in 100 people suffer from the disease, however, only 36% of people have received a diagnosis, meaning that over half a million people in the UK are struggling with symptoms they don't know how to manage.

When the condition is treated, it involves following a strict gluten-free diet, which means giving up anything made with wheat, barley, rye, and oats.

“Whilst I personally found some changes easy to adapt to, I quickly discovered that eating out whilst following a strict gluten-free diet was particularly challenging,” Phili said.

Phili said she found it overwhelming trying to find places to eat with gluten-free options and a good understanding of the dietary requirements.

She says part of this struggle comes from misconceptions fuelled on social media that living a gluten-free life is just a “trendy lifestyle choice” and not for medical necessity.

"Vegan food has become quite popular in recent years so the internet has manifested the idea that being gluten-free is also a trendy lifestyle choice and is seen as a dramatic diet. It’s not, and makes being taken seriously very difficult

“Most people who go gluten-free do so because it could make them seriously ill and bedbound. It’s anxiety-inducing. I recently had a takeaway, unbeknownst that it contained gluten and was floored for a week,” she said.

Phili added that people thinking gluten-free diets are a lifestyle choice is also damning as people with coeliac disease may feel “embarrassed” about speaking up and instead opt for a more restricted life.

“I’ve seen people who have been diagnosed in the last year and just stopped going out because they don’t think it’s worth the embarrassment or worry when letting restaurants and even friends know your dietary needs.”

With the arrival of May marking the start of Coeliac UK’s Coeliac Awareness Month, Phili and her partner, Ranveer Sahota, have set up an online platform dubbed the ‘Tripadvisor for gluten free’ lives.

Gluten Free Glee is a platform set out to enable users to search, discover and review gluten free friendly (or not-so-friendly) places, helping the community eat out with confidence.

Phili said: “Gluten Free Glee will help you get the information you need and play a part in helping others in a community that understands exactly what you’re feeling.”

Whilst an early version of the app is being tested, their team has shifted focus to solving other problems faced by those living gluten free - such as shopping, travelling and more.

Working on this project full-time, the pair announced new tools for Glee users in May.

This includes the Gluten Free Directory, an online search engine to help people find gluten free brands, products and services. There is also the Digital Allergy Translation Cards to support people whilst travelling.

“We hope it will create wider awareness for restaurants people who are gluten free and help coeliac disease to be taken more seriously.”

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