I had never heard of it: “refeeding syndrome”. But a new study shows a first for celiac disease: 5 cases of refeeding syndrome in children that could otherwise have been called celiac crisis. The research published in April’s Journal of Pediatric Gastroenterology and Nutrition is entitled “Refeeding Syndrome in Children in Developing Countries Who Have Celiac Disease”.  You may be asking why do I care? It turns out the treatment in these cases are different and should be noted that way.

First—two definitions both courtesy of the National Institutes of Health:

Refeeding syndrome: At its most basic, says that your body has trouble with food after prolonged starvation. For specifics: “In starvation, the secretion of insulin is decreased in response to a reduced intake of carbohydrates. Instead, fat and protein stores are catabolised to produce energy….When they start to feed, a sudden shift from fat to carbohydrate metabolism occurs and secretion of insulin increases. This stimulates cellular uptake of phosphate which can lead to profound hypophosphataemia” – or low phosphorous in the blood. NIH says it can cause confusion and muscle weakness…including heart trouble.

Celiac Crisis: is a “life-threatening syndrome in which patients with celiac disease have profuse diarrhea and severe metabolic disturbances.” It usually requires hospitalization.

Back to the new research. It is a small study — in 2010, researchers reviewed 35 records of children with celiac disease and five of them were severely malnourished, had anemia and the aforementioned phosphorous deficiency (as well as other nutritional deficiencies). Researchers concluded they had the “perfect setting for developing refeeding syndrome. They also felt these patients were in celiac crisis except their symptoms worsened after starting the gluten-free diet.

The NIH describes using steroids to help in celiac crisis. In this case the research said they didn’t use steroids but rather “correction of electrolytes and gradual feeding that led to a successful outcome in all of them.”

Researchers concluded that doctors need to find cases of celiac early and correct treatment are “keys to a successful outcome”. “Severely malnourished patients with celiac disease are at risk of developing potentially life-threatening refeeding syndrome which may mimic celiac crisis especially in developing countries.”

I just thought this was a very interesting article. Researchers don’t state in the research abstract where they did their research but judging from the headline which states “in developing countries”, my guess it it wasn’t in the US. Nevertheless, it is still amazing to me that people, children in particular, can go on so very long without a celiac diagnosis to get them to this point of starvation—which can lead to refeeding syndrome.



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