Dana’s Story

Dana Cukier 47, runs her own public relations business and lives in London with her 3 sons Ashley 16, Martyn 14 and Lyall 8.

Lyall has been diagnosed with Celiac Disease.

Dana says: “On Lyall’s first birthday he was walking and talking and I remember thinking what a real bright spark he was. But by 15 months he was lethargic and pale and suffered vomiting and diarrhea about 3 times a week. His buttocks and thighs were wasting, while his tummy protruded and he’d stopped walking and talking.

We’d been to Israel on holiday the Christmas before Lyall’s symptoms became really bad, so I thought he’d picked up a stomach bug out there. I tried him on soya milk instead of cow’s milk, but that didn’t help. By March we went to see our doctor who referred us to the pediatric gastroenterology department at the Royal Free Hospital in London. After a biopsy they diagnosed Lyall as suffering from Celiac Disease – an intolerance to gluten.

For the next fortnight I devoured all the information on Lyall’s condition that I could. I read books and magazines and watched videos, and learnt how I must adapt his diet.

Before the diagnosis he ate Weetabix, bread, macaroni cheese, chicken nuggets, and fish goujons regularly but these were all harmful to Lyall now. It seemed gluten was in all the processed foods that area a big part of our lives today.

I discovered Lyall could have fruit, vegetables, fish, meat and eggs but with no sauce and no gravy. We had to use gluten-free bread to make breadcrumbs for the chicken nuggets and fish goujons. There are some cereals he can have, such as cornflakes and coco pops, and he can have gluten free toast. In general his meals are chicken poached in water, or pan fried fish with fries and vegetables or salad. Gluten-free pasta with a Bolognese sauce or shepherd’s pie are 2 main favorites.

I learnt to be resourceful and I found companies that make gluten-free bread, cakes and rolls to order. Stores have also improved and have a better range of gluten-free food.

I used to fear Lyall would never get invited to friends’ homes for tea or be able to go to children’s parties, but his friends parents always check what he can eat, and I often send him with a little bag of his own food. Most of my friends have a packet of gluten free biscuits in the house.

Lyall was lucky to be diagnosed at 15 months old. Celiac disease is rare in young children so the hospital retested him last summer.

He underwent a biopsy, which revealed his colon was 100 percent free of damage. Then for 3 months he was able to eat whatever he liked. After only 3 months, the second biopsy showed 85 percent damage to his colon. The test confirmed Lyall is now Celiac for life.

We’ve learned to live with his condition – and for Lyall choosing his own salad is a special treat!

I feel responsible for everything that Lyall eats, but he’s had a healthy diet so far. Because he was diagnosed quickly, his physique didn’t suffer.

I’m determined to do whatever I can to avoid Lyall having a colostomy bag, which would happen if he damaged his colon 100 percent. This summer proved we can’t take any chances.”

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