Advice for Babies Who Have Siblings with Celiac Disease

Published on in Children's Doctor

A 2-month-old girl presented to her pediatrician with her mother. Mom is concerned about her newborn baby developing celiac disease, as the baby has a 4-year-old sibling with biopsy-proven celiac disease. She also has a 2-year-old sibling with negative serology, on a regular diet. The baby is being nursed and thriving at this time, and she has no other significant past or current medical history. The pediatrician is unclear about current recommendations and calls the Center for Celiac Disease at The Children’s Hospital of Philadelphia.

Discussion

The Center for Celiac Disease at CHOP reviewed the current recommendations for each of the children with the pediatrician, which are as follows:

  • Breastfeeding is the ideal source of nutrition for newborn babies, and the current recommendation is to follow the same nutrition guidelines for the newborn as if she did not have a sibling with celiac disease. Previously, the recommendation was to introduce gluten gradually between 4 to 6 months of age, but 2 new studies have recently refuted this idea. It has been found that the greater susceptibility to developing celiac disease comes from the presence of the HLA-DQ2 gene, and that the timing of gluten introduction is not as significant of a factor.
  • The 2-month-old baby should be screened with a celiac panel after 2 years of age, after having been on a regular, gluten-containing diet. The only exception would be if she begins to become symptomatic, at which point it would be acceptable to screen earlier.
  • The 2-year-old sibling with negative serology is additionally advised to have yearly celiac serology until puberty, and every few years beyond, so long as the child is on a gluten-containing diet. Celiac serology includes the total IgA level, tissue transglutaminase antibody, and an endomysial antibody. In the younger age groups, deamidated gliadin may be advisable. In children who are IgA deficient, the routine celiac serology may not be helpful. It is extremely important that children are on a gluten-containing diet when they are screened and remain on the gluten-containing diet until an endoscopy is performed to confirm a diagnosis of celiac disease. Genetic tests for HLA-DQ2 and HLA-DQ8 are not advisable as screening tests, as almost 30% of the general population have HLA-DQ2 and/or DQ8 and do not develop celiac disease. Family screening is critical regardless of symptoms because of long-term risks of undiagnosed celiac disease.
  • The 4-year-old sibling with biopsy-proven celiac disease is advised to maintain a lifelong gluten-free diet, including avoiding any risk of cross contamination. We also recommend a visit to the Center for Celiac Disease at Children’s Hospital, since we have qualified dieticians and education sessions to help patients and families adhere to a gluten-free diet. It is also useful to seek out a support network for the child through opportunities like support groups, such as those run through the Celiac Center, and gluten-free camps.

Finally, the family—as well as the primary care pediatrician—were all invited to the next annual Celiac Education Day, held at CHOP each spring, where there are opportunities to sample gluten-free products and attend educational sessions about celiac disease and the gluten-free diet.

References and Suggested Readings

Vriezinga S, Auricchio R, Bravi E, et al. Randomized feeding intervention in infants at high risk for celiac disease. N Engl J Med. 2014;371:1304-1315.

Lionetti E, Castellaneta S, Francavila R, et al. Introduction to gluten, HLA status, and the risk of celiac disease in children. N Engl J Med. 2014;371:1295-1303.

Fasano, Alessio. Surprises from celiac disease. Sci Am. 2009;301(2):54-61.

To refer a patient to CHOP’s Center for Celiac Disease, call 215-590-3076 or email celiaccenter@email.chop.edu.