Celiac Facts for Patients

Children 

In general, younger children or those who have been diagnosed very young, cope surprisingly well with the celiac disease diagnosis and parents sometimes are more worried than they need to be. The younger a child has been when diagnosed or the more severe the symptoms are, the better the quality of life will be in most cases.

Without their parents, children may not always be capable of following the gluten-free diet in different social situations like kindergarten, school, leisure activities etc. The reason may be that they are not fully aware of the pitfalls of the gluten-free diet; they may not want to abstain from sweets or cakes at birthday parties or just want to be polite - and therefore eat what they are offered. The more self-confident the child is the better and easier it can withstand difficulties related to celiac disease in social life. 

Therefore, it is very important to support the child’s personality. Explain the disease in a way suitable for children and train the child stepwise on how to keep the gluten-free diet. If available, age appropriate books and gluten-free cooking or baking classes for children may break the ice.

There are some things that parents can do to support their child to deal with celiac disease:

Figure 3: Ways to support your child in coping with celiac disease (Source: FocusINCD own)

Adolescents

The most difficult age for diagnosis seems to be adolescence, when the desire to fit in and to be like all others is the highest. The gluten-free diet makes celiac disease visible and therefore all situations that involve food are especially demanding.

Adolescence in general is an emotionally difficult time and a phase during which most kids experiment and need to get to know their limits. The transition from being taken care of to being responsible for one self is a critical process in the life of adolescents living with celiac disease. During this period however, some adolescents may just not be interested to keep a diet at all and ignore the consequences.

Parents and caretakers should not overestimate and criticize dietary mistakes during this time – this may only enhance the denial.  It is more promising to try working together with their child, be supportive and understanding and try to find ways to avoid these situations in the future. If dietary non-adherence is substantial and already shows detrimental effects, it may also help raise awareness on potential positive short-term effects when going back on strict gluten-free (“you may feel fitter and perform better in football/basketball/running when you go back on gluten-free”, “your concentration problems may be solved”). Adolescents usually do not care about long-term or non-obvious complications, so pointing out that gluten may increase their risk for bone fractures or malignancies may not be successful. 

There are some things that parents can do to support their child to deal with celiac disease:

Transition into adulthood

For adolescents, who start socializing out of home, depart on trips on their own and eat out more often, it may be hard to carry the responsibility for their own diet and health. The transition from being taken care of to being responsible for one self is a critical process in the life of adolescents, because greater independence comes with greater responsibility. Parents need to let them take their own decisions. Making mistakes and learning from them is part of becoming an adult. 

Adolescents have to learn that their parents are not always there to make decisions for them and they need to learn to carry the responsibility by themselves. A balance between overprotection and insufficient support is crucial for a successful transition process. The transition is a process that involves the adolescent, the family and ideally a health care professional (HCP) who supports the family in keeping the balance between parental authority and the adolescent’s independence.

It has been suggested that the age when independence develops can be delayed in children with a chronic disease compared to their peers, but of course, it is also dependent on individual development, personality and maturity. Experts suggest that the discussions should be initiated at the age of 12-13. A transition plan should follow when the child is 14-15 years, so the actual transfer can start at ≥18 years.

The transition plan has the following aims:

• Maturation of communication and decision-making skills

• Responsibility for medical self-management

• Education and counselling to manage the gluten-free diet

• Knowledge on the consequences of non-adherence

• Recognition of psychological issues and where to seek support

• Becoming familiar with the healthcare system

• Knowledge of the disease and possible long-term consequences

• Establishment of good health habits

• Addressing the whole family’s concerns

Pregnancy

Having been asked about stressful life events, 20.5% of pregnant women with celiac disease perceived pregnancy as a stressful phase, whereas none of the women in the study without celiac disease did. Affecting their unborn child with potential dietary mistakes clearly adds an additional emotional burden to women with celiac disease that others do not have. 
Being well prepared in advance will help to ease the stress! Seeing a dietitian and testing for celiac disease specific antibodies before becoming pregnant can help to review the dietary quality and adherence to the gluten-free diet. This reassurance can help women to start pregnancy feeling better prepared. Celiac women should know that strictly following the gluten-free diet equilibrates the chance of a good pregnancy outcome to that of the norm.
There are no specific dietary guidelines for pregnant women with celiac disease. The most important thing is to maintain a gluten-free diet. If not followed strictly (or if celiac disease has not been detected before pregnancy), fertility might be impaired and the risk for adverse pregnancy outcomes, including low-birth weight and preterm birth, is increased.