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The story of how Annabel was diagnosed with coeliac disease.

Date: Friday 8th May 2015

Annabelle

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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Glutafin Customer

15/05/2015

This really touches me. My son, is now 2 and had a pretty much horrific experience to get a diagnosis. He was diagnosed aged 1.Four days later he was a pretty much transformed normal one year old something that we had yearned for for so long, pretty much like Annabel, since weaning.
Now totally transformed and really used to his gluten free life style, a huge change for us all. He even asks if food is gluten free ( this sounds hideously middle class!!!)
I am someone who had never experienced any type of intolerance, auto immune disease or allergy before and was pretty sceptical of them but now with first hand experience;17 trips to the doctors ( in 4 months) with a lethargic, bloated, sick and poorly boy and finally a 4 day hospital admission having taken him to casuality ( yet again trust your instincts) ... We finally had an answer.
Trust your instincts.

Glutafin Customer

12/05/2015

Such a lovely read, brought a tear to my eye! So glad you guys all have got the happy ending you so deserve especially Annabel. What I don't think was fair was that it took that long to get a proper diagnosis & the stress it caused having to keep going back time & time again. I think the message to all parents is to always trust your instinct & never give up or be fobbed off. You really can take strength from this as its only because of your persistence that everything is ok now. Really wonderful news love to you all. Xx

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