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Children diagnosed with celiac disease through mass screening have improved health and quality of life

May 11, 2023

Improvement in symptoms, iron levels and social and emotional health found in study presented at DDW

By Amy Ratner, director of scientific affairs

Children who were diagnosed with celiac disease as part of a mass screening program had improved symptoms, quality of life and iron levels one year later, according to research presented at Digestive Disease Week (DDW).

Additionally, the children did a good job sticking to the gluten-free diet, according to a study by researchers from the University of Colorado and Children’s Hospital Colorado.  

The study was based on research funded through a Beyond Celiac/Society for the Study of Celiac Disease Early Career Investigator grant awarded to Marisa Stahl, MD, of Children’s Hospital Colorado. She set out to investigate whether children identified through screening, who most likely would not have been diagnosed with celiac disease otherwise, would benefit from the diagnosis and the gluten-free diet.

DDW is the largest international gathering of physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.

Diagnosis

Researchers compared clinical data, health related quality of life and demographics at the start of the study to results after the children had been on the gluten-free diet for one year.

Fifty-two children who were screened through the Autoimmunity for Kids (ASK) investigation and found to have celiac disease participated in the study. Forty-two children remained in the study for a one-year follow up.

The screening was based on the anti-tissue transglutaminase blood test for celiac disease. Those whose test result was positive, were then diagnosed through a biopsy or by meeting criteria including very high TTG levels.

Children and their parents were asked to fill out a questionnaire about seven gastrointestinal symptoms prior to the screening. Nearly 70 percent denied having these symptoms. Later, on a more extensive questionnaire that also included symptoms that were not gastrointestinal, nearly all those who considered themselves symptom free indicated they did experience these kinds of symptoms.

One year later

Overall, symptoms improved on the gluten-free diet after one year. Joint pain, headaches, brain fog, gassiness, low energy, irritability, vomiting, constipation, abdominal pain and diarrhea all occurred less frequently at a significant level. Likewise, joint pain, headache, itchiness, low energy, irritability, constipation, abdominal pain and diarrhea were less severe at a significant level.

Additionally, at 12 months, 93 percent of families reported good to excellent adherence to the gluten-free diet.

Although low ferritin, the blood protein that contains iron, was found in 75 percent of the children at the time of diagnosis, levels improved in almost all study participants at the one-year follow-up.

Quality of life overall and at school improved, according to the children. Parents reported improvement overall, at school, emotionally and physically.

Neither anxiety or depression in the children increased, something that is often pointed to as a concern if asymptomatic children are screened and diagnosed. The worry is that the gluten-free diet, with restrictions on food and the limitations the diet can create in social situations, can impact a child negatively. The study did not find that to be the case.

Researchers noted that children who were diagnosed with celiac disease but did not complete the study were more likely to be teenagers rather than younger children, male, non-white, from a household with an income of less than $100,000 per year and insured by government funded insurance.

Evidence of need for general population screening

The study was partially prompted by the 2017 US Preventative Task Force conclusion that there is not enough evidence to recommend screening of the general population for celiac disease. Meanwhile, the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition recommends screening for children who have symptoms including abdominal pain, diarrhea and constipation or are at risk because they have parents or siblings with celiac disease or have type 1 diabetes and other autoimmune conditions.

Study results showed improvements in these areas, but researchers noted that more investigation is needed to determine the cost effectiveness of screening, the ideal age for screening and how mass screening compares to current methods, for example testing children with risk factors and symptoms.

ASK, research that is being done by the Barbara Davis Center for Diabetes at the School of Medicine at the University of Colorado, has screened 32,000 children, most from Colorado, to identify those who have celiac disease and type 1 diabetes. Among them, 2.4 percent had celiac disease autoimmunity indicated by positive celiac disease blood tests but were undiagnosed. Of those children, 90 percent did not have a family history and 70 percent did not have symptoms.

.Studies presented at DDW are sometimes preliminary and give an early look at investigations that are likely to include more details as they progress toward publication in a peer reviewed journal. Studies selected to be presented at DDW go through a review process.

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