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Yale Pediatric Celiac Program

Mission

Photo by Robert A. Lisak

The Yale Pediatric Celiac Disease Program is a comprehensive, family-centered clinic providing medical and supportive care for children with Celiac disease and gluten-related disorders and their families.

Criteria for referral into the program include children with the following diagnoses and/or conditions:

  • Celiac disease, diagnosed via biopsy
  • Probable Celiac disease, noted by elevation of Celiac serologic markers
  • Possible gluten sensitivity, based on improvement in symptoms on a gluten-free die
  • Asymptomatic children with a family history of Celiac disease
  • High-risk groups including children with type I Diabetes Mellitus, Down syndrome, Turner syndrome, IgA deficiency and autoimmune liver and thyroid disease

The primary purpose of the program is to assist the family and child with Celiac disease and other gluten related disorders and to ensure that each child is growing and developing well.

Resources

What is Celiac Disease?

Celiac disease is a common immune-mediated disease that occurs in genetically predisposed individuals and is associated with a permanent intolerance to gluten. Gluten is a protein found in wheat, rye and barley. The Celiac Disease foundation estimates that Celiac disease affects 1 in 100 people worldwide. Celiac disease can lead to a variety of obvious and more subtle symptoms that can vary by age. Some common pediatric symptoms include:

  • Poor weight gain
  • Diarrhea
  • Constipation
  • Short stature
  • Rashes
  • Vomiting
  • Abdominal pain and bloating
  • Fatigue or low energy
  • Delayed growth and puberty
  • Micro-nutrient deficiencies
  • Behavioral and psychological issues

Children with the disease are predisposed genetically with the presence of one or both of the genes associated with Celiac, HLA-DQ2 and HLA-DQ8. People with a first-degree relative (parent, child or sibling) with celiac disease have a 1 in 10 risk of developing celiac disease. Despite the genetic predisposition, it is not uncommon for children to be the first one diagnosed in the family, as family members may not yet be diagnosed.

Currently, the only treatment available for Celiac Disease is to remain on a lifelong gluten-free diet. If Celiac Disease is left untreated there is an increased risk for developing long term health complications. Due to the increased risk for micro-nutrient deficiencies in children with Celiac Disease and the restrictive nature of the gluten free diet, close follow-up with your child’s medical team is recommended. Some deficiencies may resolve over time with adherence to the gluten free diet, however some patients may require vitamin supplementation.

Adjusting to a new diagnosis and lifestyle takes time, guidance and oversight. Your family is not alone during this process.

Program Services

Program Services Include:

  • Celiac Genetic Testing via cheek swab or blood test as indicated
  • Coordination of sub-specialist care
  • Nutritional evaluation and education
  • Social work assessment and assistance
  • Referrals for intervention and community services including local support groups
  • Same day appointments for children with Celiac disease and type I diabetes with the Celiac and diabetes team

Team Members