Since being diagnosed when she was 6, Alex and mum Kylee Douglas have discovered gluten is hidden in all manner of foods - including every other jelly colour.
She has had to cut out all foods containing gluten, which rules out wheat, pasta, oats and many other prepared snacks.
Alex said the toughest part was going to people's houses and shared lunches at school.
Ms Douglas and Louisa Roe, whose 10-year-old twins Jessica and Cameron have coeliacs, have formed a Rotorua support group for families with the condition which meets several times a year at Abracadabra.
"It's for the children to get together so they can eat anything there and aren't restricted."
Most of the families involved tell the same story - kids with stomach problems, general unwellness, lethargy and some with failure to thrive. They all speak of repeated doctors' visits trying to get to the bottom of the problems before the kids were eventually diagnosed.
Mrs Roe said a difficulty with coeliacs was that some thought it was the same as opting to go gluten free and that they were jumping on the bandwagon.
"It's not a trendy diet when you have no choice."
She said eating out was difficult, even with the increase in gluten free food available, as those with coeliac could not eat food that had been prepared on the same surface or cooked alongside gluten.
