Maybe not—but it can’t hurt
Ritu Verma is a pediatrician and mother of three. Two of her children have celiac and one does not. She was unable to breastfeed one of the three.
“There were a lot of people making me feel very guilty that I could not nurse,” says Verma, MBChB, director of the Center for Celiac Disease at Children’s Hospital of Philadelphia. “Being a pediatrician, I know how important it is to breastfeed, but if you are not able to do it and you have given your all, it is not fair to the mom to make her feel guilty.”
Fortunately the child she had trouble breastfeeding is the one who does not have celiac, otherwise she says she would probably feel guilty anyway. For years experts theorized that breastfeeding and timely introduction of gluten could protect children from celiac. Early research hinted that introducing gluten while still breastfeeding between 4 and 6 months of age might prime a baby’s immune system to tolerate gluten. However, the evidence was weak, often relying on past data that did not study effects of breastfeeding directly.
More recent research
Two studies published in The New England Journal of Medicine in 2014 compared different approaches to early nutrition in children at risk for celiac. They recruited infants who had a parent or sibling diagnosed with the disease. One study randomly assigned 832 newborns to be introduced to gluten at 6 months of age, the normal age for solid foods, or at 12 months. Fewer of the late group had been diagnosed with celiac by age 2 but they caught up by age 5. At age 10, one-quarter of the study group had been diagnosed with celiac. Delaying gluten introduction delayed celiac but did not reduce long-term risk.
The other study involved 944 at-risk infants randomly assigned to receive either a small dose of gluten or a placebo daily from age 4 to 6 months. Then they were introduced normally to solid foods. Introducing gluten during the 4- to 6-month window, when most children get their first taste of gluten, made no difference. This study recorded breastfeeding in more detail, comparing whether children were breastfed, whether it was exclusive and for how long. No approach to breastfeeding gave children an advantage against celiac.
This disappointed researchers trying to understand why some children genetically predisposed for celiac remain healthy while others become sick. Commenting in The American Journal of Gastroenterology in 2016, Joseph Murray, MD, of Mayo Clinic, and Benjamin Lebwohl, MD, of Columbia University Medical Center, called this a “back to the drawing board moment” for the celiac community. They wrote that these “unequivocal and disappointing” findings force researchers to refocus the search for what causes celiac.
Experts admit this leaves parents wondering how they can prevent celiac in their children at risk, but the simple answer is: nothing unusual. The American Academy of Pediatrics adopted the standpoint that a healthy child with a family history of celiac should be treated like any other healthy child.
Maureen Leonard, MD, clinical director of the Center for Celiac Research and Treatment at Massachusetts General Hospital for Children in Boston, says, “If breastfeeding is available, we recommend it until 4 to 6 months of age. We always recommend that an infant be exposed to as many foods as possible, again starting between 4 and 6 months of age.”
Verma says, “Breast milk has the right balance of fat and nutrition. It is the most easily digestible for the immature gut when the baby is born. Secondly, the factors in breast milk help fight infection, building immunity. Finally, bonding happens between the child and the mother with breastfeeding. Those are the three main reasons why breastfeeding is a good thing.”
As for breastfeeding preventing celiac, Verma says, “I don’t think anyone would say it is not helpful.”
Experts expect new insight from studying the microbiome, the community of bacteria that colonize the gut and interact with the infant’s immune system as it develops.
“There are many factors that will change the microbiome. Those are the factors we need to know,” says Verma. “In celiac disease, the discussion has been about breastfeeding, the timing of gluten introduction, the amount of gluten introduced, and if there is a [viral] infection.”
She adds, “Breastfeeding does make a difference. The question is two-fold. Does the microbiome change based on breastfeeding? I will say yes. Does that have an effect on at-risk patients? I think time will tell. I personally think it will be beneficial.”
Verma stresses that if a mother has difficulty nursing for any reason, there are alternatives. A mother should never feel guilty for not breastfeeding if medical or psychological factors prevent it.
For children at risk, she does recommend a special precaution in the case of viral gastroenteritis, which causes symptoms such as diarrhea, fever and vomiting.
In 2017, an international team of scientists reported on an innocuous reovirus that provokes immune response in people while hardly making them sick. Celiac is more common in people who have antibodies for this reovirus, proving they have been infected by it sometime in life. The study demonstrated in theory how the bug could disrupt tolerance to gluten and cause celiac. This possible cause remains unproven, but several other investigations have pointed fingers at viral infections.
Verma advises parents of children at risk: “If at 5 months you are going to introduce gluten and your baby has viral gastroenteritis, maybe hold off a little. That infection makes the gut more permeable. Time will tell, but I think it could potentially be a trigger [for celiac].”
Wait a week or two until the child has recovered, and introduce gluten when digestion is stable, she suggests. All healthy children should be introduced to gluten in time.
For parents worried about avoiding celiac, Leonard says, “While children with a family history have a higher chance of developing celiac disease compared to the general public, it is still more than three times more likely that they will not develop celiac disease. If the family decision is to keep a gluten-free household, I would encourage them to allow the child [who does not have celiac] to eat gluten outside of the home so that they can participate in the many social activities that revolve around food. At this time we have no evidence to suggest that the child should refrain from eating gluten.”
Verma agrees: “I do not recommend that parents keep their children gluten free if they don’t have celiac disease. They should treat the child like any other child.”
She points out that a normal diet including whole grains can be more nutritious and less expensive than a gluten-free diet. She also warns against the psychological burden of forcing a healthy child to follow a gluten-free diet because another family member has celiac. This can lead to resentment between siblings, for example.
Leonard suggests concerned parents can have their child tested for celiac genetics. Verma does not recommend doing this at birth because the child should not be treated differently regardless of risk.
She insists on having this conversation with parents who want genetic testing: “If you know that your child has the gene, is that going to make you not want to feed them gluten? As they get a little older and complain of a bellyache or a headache, are you going to be doing a celiac [test] every week? Are you going to be in constant fear the rest of the child’s life that he or she is going to end up with celiac?”
If the parent agrees not to change anything but still wants to know, Verma says, “I will give in.”
Verma and Leonard both send children for a first panel of blood tests by age 3. They then re-screen for celiac every three to five years thereafter. However, Verma points out that blood tests for celiac are invalid in children who consume lower than normal levels of gluten. This may occur, for example, in a home where others follow a gluten-free diet. She would delay screening until the child is consuming a significant amount of gluten every day.
Infants at risk can help unravel the mystery of what role the microbiome plays. The Celiac Disease Genomic Enviromental Microbiome and Metabolomic (CDGEMM) Study is enrolling children who have a first-degree relative with celiac. Leonard is one of the researchers in this study. She says it includes a questionnaire about life history, stool collection every three months and blood every six months. Infants from across the county may participate by mail free of charge. To learn more, visit https://bit.ly/2GgpFgX.