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There are many ways you can help children and their families get the care they need.
All family members may struggle in adjusting emotionally to the diagnosis of celiac disease. Hear information from a licensed social worker on how to cope:
It's okay to feel overwhelmed or resentful about your child's diagnosis. Many parents grieve over the loss of their child's normal lifestyle. Setting short-term goals is a helpful step in adjustment.
Give your child permission to express his/her own feelings of anger or frustration when they learn about the disease.
Avoid a potential crisis by anticipating the need for emotional support and seeking help from a mental health professional.
Remember that a childhood medical condition is a family medical condition. Involve the entire family in household discussions and major decisions regarding diet management and lifestyle changes. Set limits regarding what aspects are negotiable and what aspects are necessary to insure your child's health.
Understand that parents may have different coping styles. Good communication is the key to working as a family.
Children may cope and adjust to the demands of the celiac diet and lifestyle differently at different developmental stages, regardless of how long they have had the illness. Younger children find that re-establishing routines is comforting. Create a gluten-free version of your child's routine.
Siblings may be confused or be jealous of the attention the newly diagnosed celiac is receiving. Educate siblings about celiac disease, give them an opportunity to discuss their own concerns. Provide siblings with some special time with parents.
Understand that for teenagers, other people's opinions are of paramount importance. Therefore, fitting in with peers may seem more important to a teen than dietary compliance. Also, teens may have difficulty understanding the long-term consequences of not following the gluten-free diet.
Let children make choices where they exist. Teens will want to decide whom they tell about their celiac disease.
Always answer all of your child's questions honestly, and provide age-appropriate responses.
Children with Down syndrome who have celiac disease often have difficulty understanding and adjusting to a gluten-free diet. Many already have behavioral issues related to eating. Consultation with an expert on child development may be helpful.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”