When Tracey Calvey’s little boy Tobias was suddenly diagnosed with coeliac disease at the age of just two, it was a steep learning curve for the family.
She tells AASMA DAY the measures she has to take as a parent to protect her son by giving him a gluten free lifestyle.
When Tracey Calvey’s son Tobias started being sickly after eating and began losing weight, all sorts of horrible thoughts raced through her mind.
At first, she though he had just picked up a bug as children are prone to do, but when his symptoms persisted, she sought medical advice and was referred to see a paediatrician at hospital.
Tracey, 38, who lives in Fulwood, Preston, with husband Christopher, recalls: “Tobias was weaned on to food as normal and everything was fine.
“However, just before his second birthday, he started to be sick and lose weight.
“Tobias was never a sickly baby before, so it was a bit strange, but at first I thought he’d just picked up a bug.
“It then became more frequent so we went to see the GP and were given a referral to see a paediatrician.”
While the family were waiting for the appointment, Tracey went away for 10 days and when she returned, she realised how poorly Tobias was.
She explains: “With not having seen Tobias for 10 days, when I saw him again, I realised how poorly he was and that evening, he started being sick again.
“I was worried so I called 111 and was told to take him to the hospital.”
Tobias was admitted for blood tests and they came back showing he had coeliac disease, an auto immune condition where a person has an adverse reaction to gluten.
Tracey, who works for the NHS, admits she was relieved when she they received the results that it wasn’t anything worse.
She says: “Tobias was only two and a half and was losing weight so all sorts of horrible thoughts go through your head.
“However, I did not know anything about coeliac disease so once we knew Tobias had it, we looked into how it could be best managed.”
Tracey and her husband were tested to see if they also had the condition but both tested negative.
They don’t know of any other family members who have it so Tobias’s diagnosis is just one of those things.
As a parent, Tracey says she went through a stage of feeling guilty for having fed Tobias food that was making him poorly before his diagnosis.
She recalls: “When Tobias was not well, I was giving him toast as I thought that was bland and would settle his stomach. But in reality, I was giving him gluten and was probably making him worse.
“Even though I didn’t know, I went through a stage of feeling very guilty.”
Since Tobias’s diagnosis, Tracey has educated herself on the best way to ensure a gluten free diet for Tobias and says it has been a big learning curve.
She explains: “It is not just the obvious foods that have gluten but some foods are naturally gluten free, but have gluten added to them.
“It is about reading food labels and understanding what contains gluten and I have had to educate myself and educate extended family.
“Tobias goes to pre-school so I have had to make them aware as well.
“It is not just food, as play dough has wheat in it, too.
“I don’t know how sensitive Tobias is to gluten so touching play dough and then putting his fingers in his mouth might affect him.”
At home, Tracey has a separate food cupboard for Tobias to avoid cross contamination with foods containing gluten.
Tracey says the family now often eat gluten free food themselves and she carries gluten free food with her for situations where Tobias will need it, such as children’s parties.
Tracey says: “It is very important to me that Tobias feels normal and a part of everything like other children.
“We are currently waiting to find out which school Tobias will be allocated in September and, when we do, we will have to have discussions with the school.
“At the moment, what Tobias eats is quite controlled but when he starts school, it will mean trusting other people to look out for him every day.
“Tobias is very good and asks if he is allowed things before eating them.”
Tracey has found the Coeliac UK support group and its Preston branch is very helpful in advice on coeliac disease and how to manage it.
Tracey says: “Some people think coeliac disease and being gluten free is a fad but it is not a choice for Tobias.
“It is an auto immune disorder and if it is not managed properly, it could shorten his life and there are ultimately links with cancer.
“You have to be extra vigilant and I do worry more.
“However, we are lucky that Tobias’s condition was discovered so early as the average diagnosis of coeliac disease takes eight years.
“At least Tobias was young and only ate gluten for a very short time.”
• The Preston and Lancashire and the East Lancashire support groups of Coeliac UK have joined forces to organise a Gluten Free Food Fair.
The fair will be held on Saturday April 16 and will be held at the Canberra Club at Samlesbury Aerodrome.
It will feature 20 of the North West’s best gluten free food producers, dietician advice, children’s activities and a tombola.
Kirsty Henshaw from Dragon’s Den fame and Sharon Loving from The Ginger Baker will be among those at the event.
For more information, visit the events section at www.coeliac.org.uk or e-mail: firstname.lastname@example.org