Date: Friday 8th May 2015
We first started to notice something might be wrong around Annabel's first birthday. I took her to our GP and explained her constipation, diarrhoea and swollen tummy, which had subsequently caused a hernia around her belly button. Annabel was a very healthy weight and had a good appetite, so i was informed it was nothing to worry about.
Over the next few months Annabel changed. Once a happy, interactive baby she became a sullen and miserable toddler. Refusing to smile for pictures, refusing to be comforted by anyone other than me, insisting she be carried everywhere. She cried and screamed all the time. She hated grass, she hated sand, she didn't want to play with toys. If I put her in her room to play she would crawl into her cot bed, regardless of the time of day. Our children’s centre attributed her behaviour to separation anxiety but really she was in pain. Annabel also started loosing weight but our local health visitors said that was normal when children start walking.
Things didn't improve and I took her back to see a different doctor for a second opinion. She referred her urgently to our paediatric department and within two weeks her biopsy results were back and we could start her on a gluten free diet.
Altogether it took about eight months to get diagnosed, my advice to other parents is to follow your instincts and seek a second opinion. GPs and other health professionals aren't routinely checking for coeliac disease in babies and young children. I can't tell you how many times we were asked; 'does she have a temperature?' and 'does she have a healthy appetite?' These answers don't always give a true reflection of a child's health.
After a couple of appointments with a dietitian, changing Annabel’s diet was surprisingly easy. Food labels and eating establishments have to be so clear now on ingredients. We also found a wealth of information on the Coeliac UK website. She gets some gluten free food on prescription, the rest I can buy in the local supermarket like sausages and her favourite, fish fingers. Annabel has her own toaster and utensils at home to reduce contamination. At nursery and at her grandparents she has toaster bags for her bread. Everyone was really supportive once they understood exactly what coeliac disease was. Our local toddler group now makes gluten free play dough for the children, so Annabel can join in and when her nursery does a baking activity.
In four and a half months we have seen such an amazing change in Annabel. She had initially been described by doctors as malnourished, thin and wasted. Since diagnosis we have seen a fifty per cent weight gain. She climbs the stairs, she loves the park and is so happy. She has started talking and is developmentally catching up fast. Her eyes have their sparkle back and we have our daughter back, this is the real Annabel and we are so excited to meet her!
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