Shock for mother and daughters at coeliac diagnosis

Hannah , Jess, Sally and Bethany (L-R) (Andrew Cawley / DC Thomson)
Hannah , Jess, Sally and Bethany (L-R) (Andrew Cawley / DC Thomson)

But once back in Scotland and at Aberdeen University the pounds kept falling off. And with an upset stomach too – a problem she’d been dealing with off and on for years – she was forced to see a doctor.

And so began a journey to a diagnosis which has radically changed her life – and that of her whole family when it was discovered that she, her two sisters and her mother were all sufferers of coeliac disease.

While it’s become fashionable for people to avoid gluten – claiming intolerance to the two proteins which give dough its elasticity – coeliacs like the Lloyds know all too well that it’s not just a trend. While they battle with migraine, nausea, diarrhoea, tiredness and hair loss among other symptoms, if the auto-immune disease isn’t treated by a gluten-free diet it can lead to osteoporosis, lymphoma and small bowel cancer.

Hannah, a lettings agent from Colinton in Edinburgh, was 18 when she received her diagnosis. “When I was in South Africa I thought I’d caught a tummy bug. I lost a lot of weight, I’m 5ft10 and I was a size 12 but I dropped to a size eight. Even at university it never cleared up. I had diarrhoea but I never thought that was odd, that had always been normal to me . . . at one time it was thought I had irritable bowel syndrome. But I was looking rather anorexic, I was down to a size six, so I finally went to the doctor.

“I moved back to Edinburgh and it was on Christmas Eve 2009 that I had an endoscopy. The results were so clear that I have never eaten gluten again.”

The endoscopy showed that instead of a healthy gut lining, which should be undulating, Hannah’s was smooth because it was swollen as her body reacted to gluten – and it was this which was stopping her from absorbing vital nutrients.

As a result she now has to take calcium and vitamin D supplements to ward off potential osteoporosis in later life.

“Back then gluten-free food wasn’t what it is now – Tesco certainly wasn’t advertising it’s range as it does now. It’s definitely improved and while we make a lot of our own food, it’s much easier to get gluten-free food from supermarkets.”

Now 23 and back to being a size 12, Hannah was the first of her family to be diagnosed. But as one in 10 close relatives of people with coeliac disease can also be sufferers, the rest of her family were tested.

The Lloyds broke the statistical rule book. All the women in the family were discovered to be coeliacs.

“It was a real shock that it was all of us,” says Hannah. “My sister Bethany, who was 16, was off the scale and Jess who was 12 also came back positive.

“Our sensitivities to gluten are all different – if mum eats any she will have mouth ulcers within minutes as will Beth, as well as stomach pains.

“Jess and I are similar in that problems take longer to show but they include vomiting and diarrhoea.

“When you’re first diagnosed it can take three to six months for your gut to heal by cutting out gluten and then if you accidentally eat any the reaction of your body is stronger and it takes months again to go back to normal.

“We were always a family who just got on with things, ate all the food on our plates etc, and now we’ve got to be a family watching everything we eat and making a fuss about it when we’re eating out. We have to know what’s in everything – down to the types of stock cubes.”

She adds: “I would encourage anyone who has a constant upset stomach or diarrhoea or even unexplained fatigue to ask for a test and see if they are coeliac. It has changed our lives.”

Jess, now 18 and a mechanical engineering student at Strathclyde University, agrees. “I would get terrible migraines, at least two a month and I also used to feel sick all the time. So all I would eat was bread, which of course was making me more ill. I used to think that was just the way everyone felt and I would miss a couple of classes every week at school.

“If Hannah hadn’t been diagnosed I suppose I’d have carried on feeling like that. As I was a child my diagnosis happened pretty fast and while my recovery was gradual I’d say a year on from going gluten-free I had no migraines, wasn’t feeling sick and felt more able to do things. It has made a huge difference.”

As coeliac disease is a chronic illness, sufferers can get some bread on prescription to deal with the financial hit of being gluten-free. “A loaf of bread can be £3 so it could be very expensive to buy without prescription,” she says. “Gluten free food has more sugar in it though as it doesn’t taste very nice otherwise so everything in moderation.

“I get 18 units a month to cover bread, rolls, pasta, flatbreads that kind of thing. But on my next birthday that will drop to 14 units because I’m no longer classed as ‘growing’ and apparently don’t need to eat.”

She laughs, adding: “It doesn’t interfere too much with socialising, I just don’t drink beer.”

As well as their doctors the Lloyds also turned to campaigning charity Coeliac UK for help and information on managing their illness. The Scottish branch of the charity believes that there are around 40,000 people in Scotland suffering from coeliac disease but who remain undiagnosed.

Myles Fitt, Scotland lead with charity Coeliac UK says: “Those with a close family member with coeliac disease are at greater risk and should visit a GP for advice and testing.

“Too many Scots are living in the dark with this serious condition and our campaign ‘Is it coeliac disease?’ aims to increase awareness of signs and symptoms.”

For mum Sally, a GP herself, her family’s diagnoses has affected her diet, health and also her job. “To have one daughter coeliac was a shock, to have all three diagnosed has been unbelievable. I certainly know much more about it all now and I am making more diagnoses of coeliac disease in my own work – it’s much more simple now with a blood test.”

She adds: “When Hannah was in South Africa I thought her upset tummy was just one of those things – though she had had issues with her stomach since she was a toddler. When she was diagnosed I was surprised and felt really bad.

“We were rather naive when she was diagnosed and we went off after Christmas to France to go skiing and in France they have flour in everything so she could barely eat – I went gluten free to support her but I’ve been tested since too.

“My doctor thinks I am coeliac as I have many symptoms, but I also suffer from autoimmune arthritis so it’s more complicated. I was anaemic but on going gluten free my iron levels shot up to normal levels. And if I eat gluten now, within minutes I’ll have mouth ulcers and I can have a rash like hives and of course migraines and inevitable fatigue.”

The diagnoses means the Lloyds cook from scratch much more and says Sally there are “swathes of supermarket aisles we no longer go down” while snacks like gluten-free crisps are a rarity as they’re much more expensive. “The girls can at least get food on prescription,” she says.

“People don’t see coeliac as a serious illness but it is. If someone comes to me complaining of tiredness or migraines I will test them. It is a serious problem and deserves to be taken seriously.”

One in every 100 have it

Coeliac disease (pronounced see-liac) is a lifelong autoimmune condition where the body’s immune system reacts to gluten, a protein found in wheat, barley and rye.

Symptoms can include frequent diarrhoea, nausea and vomiting, stomach cramps, bloating, on-going fatigue, anaemia, and regular mouth ulcers.

It is estimated that one in every 100 people have coeliac disease but if a close relative such as a mother, father, sister or brother has it, then the chance of having the condition increases to one in 10.

It is most commonly diagnosed between the ages of 40 and 60.

Coeliac UK, the charity for people affected by coeliac disease, estimates there are around 52,000 people with the illness in Scotland – but only a quarter, 13,000, have a diagnosis.

Untreated and undiagnosed coeliac disease can cause infertility, osteoporosis, and in some rare cases small bowel cancer.

Once diagnosed a strict gluten-free diet has to be followed for life.

For more information and an online assessment of symptoms visit www.isitcoeliacdisease.org.uk

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