A meeting of gastroenterologists in Wellington has been told more needs to be done to support the approximately 40,000 New Zealanders with coeliac disease.
Those with coeliac disease cannot tolerate gluten, the protein found in wheat, barley and rye flour. The conditions causes fatigue, bloating, weight loss, pain and other issues.
Dr Bob Anderson, a Melbourne-based expert on the disease, says all sufferers can do now is remove gluten from their diet, but he hopes that will some day change.
It's hoped a new drug he is developing will help.
Dr Anderson says the disease is most commonly diagnosed in adults at about age 40, particularly women, although in Scandinavia as many as one-third of children have been found to have the condition.
He says there is anecdotal evidence children and young people do better academically once diagnosed, though research on this is lacking.
He says tiny amounts of gluten can prevent healing and sufferers are more susceptible to other problems.
Dr Anderson says voluntary groups provide excellent help, but more support is needed from doctors.