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What is it like to live with coeliac disease?

 

In the UK alone, 1 in 100 people have been diagnosed with coeliac disease. It’s estimated that a further 70% of the population have coeliac disease but are undiagnosed.

Coeliac is an autoimmune disease. This means that the genes of someone with coeliac are different to those of someone without the disease.

Gareth Ney, a student who has coeliac, describes the disease as – listen here.

 

Symptoms?

Symptoms of coeliac disease may include:

  • Constant mouth ulcers
  • Fatigue
  • Stomach pains
  • Bloating
  • Weight loss

There is a 7% chance of someone having coeliac disease.

However, this rises to 9% if you also have diabetes.

Gareth has diabetes, which contributed to his coeliac diagnosis – listen here.

 

How does your diet change?

Someone with coeliac disease has to abide to a strictly gluten free diet.

Gluten is found in wheat, barley and rye, which is used in a lot more food and drink than you would expect.

Anything flour-based, like bread and pizza, is out of the question.

Gluten is also found in soups, sauces, salad dressings, crisps, chocolate and sweets.

Gareth’s diet changed completely: “When bread’s out you have to replace it completely.”

But, he thinks it is manageable: “It’s a completely different diet, but there’s a lot of substitutes and, although it’s slightly more expensive, a lot of stuff is still available.”

There are a few companies which manufacture gluten free food. Gareth’s main ones are – listen here.

Gluten free food is usually more expensive than foods with gluten.

Gareth says that gluten free products in normal shops are expensive and limited – listen here.

Below is a comparison between gluten and gluten free foods in Tesco.

 

Gluten Free Gluten Price Difference
Breaded Chicken Goujons £8.34/kg £7.41/kg +93p/kg
White Rolls 46p each 25p each +21p each
Chocolate Mini Muffins 17p each 11p each +6p each
Branflakes 50p/100g 13p/100g +37p/100g
Digestive Biscuits 63p/100g 11p/100g +52p/100g
Chicken, Bacon and Lettuce Sandwich £2.80 each £2.50 each +30p each
Cheese and Onion Corn Chips/Crisps £1.20/100g 51p/100g +69p/100g

These prices were correct as of 21 March 2019 on the Tesco website.

 

Tina Thompson, a coeliac and the inspiration behind the website Gluten Free Ireland, confirmed that gluten free foods are: “very costly to buy compared with regular foods,” because smaller quantities are ordered, there is a short sell-by date and some of the ingredients are rare.

Francesca McKee

David Cooney, a representative from Coeliac Ireland, says that the added expense can be managed:

“If you adjust your diet to eat more balanced, healthy and naturally (gluten free) foods it can…be a massive money saver.”

It can also be difficult to find gluten free foods.

Tina believes that there is a lot of variety in supermarkets, but if something isn’t selling well, it’ll be pulled.

Francesca McKee, a travel blogger who was diagnosed as coeliac in October, stated that someone with coeliac disease is limited to larger shops.

Some people can receive help with food costs in the form of prescriptions, like Gareth – listen here.

Products available on prescription can include:

  • Bread
  • Flour
  • Pasta
  • Pizza bases

 

Eating Out

Although more options are becoming available for gluten free diets, it is still difficult to eat out.

Gareth says that he’s impressed by restaurants if they have gluten free bread available – listen here.

Tina said: “There is still a huge lack of knowledge in the catering end and it is still very difficult to eat out safely.”

However, she did note that some establishments just don’t have big enough kitchens or enough staff to avoid cross-contaminating gluten and gluten free products.

David responded that a larger percentage of caterers are untrained or unaware about gluten free diets.

However, he did explain that Coeliac Ireland is looking to combat this issue by establishing a training programme for restaurants, which would familiarise them with the requirements of a coeliac-safe meal and menu.

Do those who suffer with coeliac disease feel that restaurants take them seriously?

Francesca believes that restaurants don’t take the disease seriously. She pointed out that waiting staff will say that food is gluten free, but it isn’t, leaving her feeling unwell afterwards.

Gareth says that everyone has to compromise when eating out – listen here.

Another issue is if restaurants provide enough gluten free options.

“The simple answer is NO,” Tina stated when asked.

She went on to say that, because of limited options, “everything must be planned ahead” and quick meals, like fast food, is out of the question. Even simple things like sandwiches are out of the question.

Gareth says it’s more like you’re lucky that something is gluten free – listen here.

 

Social Life

Tina believes having coeliac disease can affect someone’s social life, because of the “restrictive nature” of it: “Any social event is a nightmare, but most coeliacs carry their own food or snacks with them because of this and then sit like lepers having their own picnic!

“It is an extremely anti-social disease. No sharing, no tasting each-others meals, and even at home, different toasters, different cutting boards…”

Gareth had a similar view – listen here.

 

Active Life

Before Francesca was diagnosed, she felt exhausted constantly and was unwell.

David agreed that before diagnosis, you will feel tired and unwell. However, if you follow a gluten free diet and a healthy lifestyle after you have been diagnosed with coeliac disease, there is no reason your active lifestyle would be affected.

Gareth’s life isn’t affected by his coeliac disease in anyway – listen here.

 

University Life

As a Coleraine University student, Gareth doesn’t think that the Students’ Union provides enough gluten free options – listen here.

There is also a canteen on the Coleraine campus, which Gareth would prefer – listen here.

Andrew McAnallen, the President of Ulster University’s Students’ Union, said in response:

“The students’ union is committed to ensuring the dietary requirements of all students are met. We have…lobbied the university for greater diversification of eating options – I know any time I’ve spoken to university catering, I have always raised the necessity for gluten free options.”

When asked about the possibility of a vote on the canteen gluten free option, Andrew responded:

“If the functionality existed to make a voter as accessible as possible – for instance, on an app – I think a voting system could be useful. But in the absence of such technology, I would encourage coeliac students to give feedback to catering outlets on campus of what recipes/options they’d like to see!”

 

Holidays and Travelling

Francesca, who travels frequently, said that, when she was first diagnosed, she worried about travelling with her new diet.

Although a gluten free diet is a struggle when travelling, she has learned how to be more prepared and brings her own food just encase.

Gareth was asked if he would worry about travelling – listen here. 

 

Undiagnosed Cases

It’s estimated that 500,000 people in the UK have coeliac disease but they don’t know it.

Listen here for Gareth’s thoughts on why there are so many undiagnosed cases.

David believes that the public, GPs and restaurants should be more aware of coeliac disease, because of the “severity of the disease if left untreated.”

An undiagnosis may lead to:

  • Malabsorption – when nutrients aren’t fully absorbed by the body, leading to a deficiency of vitamins and minerals, which can cause anaemia and osteoporosis.
  • Malnutrition – can lead to the body’s inability to recover from wounds and infections.
  • Cancer – very rare, but very serious. Small bowel cancer, small bowel lymphoma and Hodgkin lymphoma are all associated with coeliac disease.
  • Pregnancy complications – such as your baby being born with a low birth weight.

 

Public’s Thoughts of Coeliac Disease

31 people, two of which have coeliac disease, took part in a survey about their thoughts on coeliac disease.

Eight people didn’t know what coeliac disease was.

19 people felt that they hadn’t been adequately educated about gluten free diets, and 25 people felt that more could be done to educate the public.

It was suggested that public health services could raise more awareness about gluten free diets through advertising. Others suggested that the TV, radio and social media should advertisement about gluten free diets.

Francesca agreed and suggested that there should be more awareness of blogs which discuss coeliac disease.

She said: “Not enough is done especially whenever it comes to eating out as it is such a struggle and people need to actually consider that it is a disease. It is quite annoying how vegan is publicised so much yet it is a(n) option not a requirement.”

Most people thought that education would be the most effective route to raise awareness. One person suggested that caterers should take part in educational programmes.

23 people admitted that they wouldn’t think about gluten free diets when preparing food for family and friends.

Tina agreed that gluten free diets aren’t usually catered for at social occasions, like weddings and funerals.

26 people said that caterers should provide more gluten free options.

Only 28 people said they would go to the doctors if they believed they had coeliac disease.

 

Click here to listen to Gareth’s final thoughts about what it’s like living with coeliac disease.

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