I do not see celiac disease in my practice as a neonatologist as most of my patients are born prematurely, weigh less than 5 pounds at birth, and have never eaten wheat. That being said, I have taken care of several babies with an intestinal condition that is much worse than celiac disease. It is called necrotizing enterocolitis (or NEC) and approximately 5-10% of the smallest premature infants develop it after birth. The incidence in the neonatal population overall is 1-2%, similar the rates of celiac disease in the adult population.
Babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed. Clinical signs of NEC include abdominal distension (babies’ bellies often become large and hard like a rock), bloody stools, delayed digestion, respiratory distress, and shock. Once NEC develops, it can progress rapidly, and 25 to 30% of babies who develop NEC die. A healthy premature infant can develop NEC and be dead within 8 to 12 hours.
The cause of NEC is unknown. It usually develops after the first week of life and, in most cases, after a baby starts to receive feedings. The risk of NEC is much higher in babies who receive formula than those who receive pumped breast milk (or donor breast milk) but we do see cases of NEC in babies who have received only breast milk. Although we are able to treat NEC medically, with bowel rest and antibiotics, we are not quite sure which bacteria are the culprits. Similar to celiac disease, emerging research is showing that NEC may be associated with an overgrowth and colonization of babies’ guts with “bad” bacteria, and probiotics are being researched as a possible way to prevent NEC in preemies.
Although there is not any known association between NEC and celiac disease, I think it’s important for us to be aware that there are other digestive diseases out there for which there is much less known than celiac disease. Although we cannot prevent celiac disease from developing, at least not yet, we are able to treat it with the gluten-free diet. Despite our best efforts to prevent NEC (through exclusive breast milk diets), it is still occurring at alarming rates, and the treatments do not always work. NEC has many parallels with food protein-induced enterocolitis, a disease of infants and children that I wrote a post about last spring.
The NEC Society has recently been founded by the mother of a premature baby who died from NEC-associated complications in 2012. The missions of the NEC Society include to increase awareness of NEC, empower families affected by NEC, and to, ultimately, prevent it. Please check out their website and share it with others who may be interested and/or helped by the information on it. One of my favorite posts from their site is called “Pointers for Parents of Preemies” from February 2014.
Lastly, out of curiosity, have any moms out there with celiac disease or non-celiac gluten sensitivity had an infant develop NEC? If so, would you be willing to share your story? Thank you!