People with coeliac disease often experience delays of many years before their condition is diagnosed and this can lead to years of suffering as well as long term health implications. AASMA DAY talks to Meg Kearns-Page who had her symptoms dismissed for years with excuses such as “it’s because you’re a girl” and “it’s your age” before eventually getting diagnosed
Sitting down for a rest during her lunch break at a children’s play centre, Meg Kearns-Page suddenly felt nauseous and sickly when one of her colleagues walked into the room with a fresh sandwich to eat.
Meg, who was 19 at the time and is now 27, recalls: “The smell of the fresh bread just triggered a really strange reaction and made me feel really sick. It was really bizarre.”
Meg, who lives in Coppull near Chorley and is engaged to production planner Chris O’Conner, has coeliac disease but she suffered for around seven years before finally getting a diagnosis.
Before her diagnosis which was confirmed on her 20th birthday, Meg’s condition had deteriorated so much, the 5ft 3ins young woman’s weight had plummeted to just six stones.
Describing how bad things were, Meg says: “I could count my ribs and the bones in my spine and there was nothing on me at all.”
That same day I had the bizarre reaction to the sandwich, I was due to see the doctor about something else.
Meg, who works as an administrator at Preston’s College, remembers: “I was quite poorly throughout my teenage years and was skinny, run-down and tired.
“I knew something was not right and I never felt 100 per cent.
“But whenever I went to see the doctor, I was constantly told it was because ‘I was a girl’ or down to my age. But the other girls my age at school weren’t experiencing what I was so I knew this wasn’t true.
“I was then told I might be anaemic and I wasn’t eating enough iron or that I may have problems with my thyroid.
“I had every excuse given to me under the sun but I never felt any better and it went on for years.”
Meg was a pupil at Wellfield High School in Leyland, followed by Runshaw College and then the University of Central Lancashire in Preston, where she studied psychology.
Meg found herself getting very stressed and poorly while at university and, while a student, she worked at a children’s play centre, which is where she experienced the strange reaction to the smell of someone else’s sandwich, which actually ended up bringing everything to a head.
Meg recalls: “That same day I had the bizarre reaction to the sandwich, I was due to see the doctor about something else.
“At the end of the appointment, he asked me if there was anything else and I just mentioned the severe reaction I had experienced earlier to the smell of the bread.
“The doctor I saw was new to the surgery and very enthusiastic. On a hunch, he told me he wanted to test my blood to see if I had coaeliac disease and his hunch changed my life.
“The results came back positive for coeliac disease and everything just snowballed from there.”
Meg underwent an endoscopy which revealed she had coeliac disease and her gut was damaged and that the coaeliac disease was the reason she was anaemic.
Meg says: “I had been treated for anaemia with iron tablets but they did not work as my gut was so damaged, it was not absorbing anything.
“Doctors had not looked to see why I was anaemic –they had just tried to treat it but it was actually the coeliac disease which was the root cause.”
Meg received a letter from the NHS confirming she had coeliac disease on her 20th birthday. Laughing ruefully, she says: “There was no birthday cake for me that year!
“However, I did have cake the following year for my 21st.”
Even though Meg had to drastically change her diet and lifestyle, she says the diagnosis of coeliac disease made her life a lot better and as she adapted to being gluten-free, it became easier.
Meg says: “Before my diagnosis, I could not sleep at night. My skin was really dry and my skin was painful with sores.
“Whenever I have gluten, I can’t sleep and it gives me insomnia as it makes my tummy uncomfortable so I can’t settle.
“But after changing my diet and lifestyle, I could sleep at night. It changed my life dramatically.”
Meg saw a dietician for the first few years after diagnosis but now, being gluten-free, is coping with coaeliac disease which is an everyday part of her life.
Meg says: “When I was first diagnosed, it was hard to make the switch to having gluten-free food. But it is a lot easier now as it is just part of my life - although I still have to plan ahead.
“My fiancé Chris is very supportive and he eats what I eat, apart from having his own bread.
“Friends and family have all been very supportive, too, and have made changes to accommodate me.
“There is a lot more support now for people with coeliac disease and the availability of gluten-free food is definitely on the increase.”
Meg wishes she had sought a second opinion after having her symptoms dismissed so many times during her teenage years.
She explains: “I wish now that I had gone for a second opinion when I was younger as it could have saved years of suffering.
“I was poorly all the time and I felt I was constantly fobbed off and told: ‘It’s because you’re a girl’ or ‘It’s your age.’
“Not only were my teenage years wasted feeling poorly, I still don’t know what long term damage has been done and it is a ‘wait and see’ game.
“Because coeliac is not a visible disease, people do not see it as life threatening as it doesn’t have an instant impact like with something such as a nut allergy.
“There is not an easily visible reaction but it causes a lot of damage and suffering to those affected.
“I am now much better and am a healthy weight but I feel sad that I was so poorly throughout my teenage years.
“My advice would be to always trust your instincts, to not give up and to seek more than one opinion.
“Also, keep a food log of what has been eaten and when, and if any ill affects were felt after, as they will send you away to do this anyway and you can speed things up.”