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Screening for Celiac Disease Suggested with Type 1 Diabetes Diagnosis

To Screen or not to Screen for Celiac Disease – a complex question for parents of children with type I diabetes.

An abstract presented at the annual meeting of the American Diabetes Association(1) raises a challenging dilemma for parents of children with type 1 diabetes [T1D].  In their study Graber et al studied the medical records of 340 children who were screened for celiac disease [CD] starting when they were first diagnosed with T1D.  Thirty-three of these patients, or 9.7%, tested positive for CD antibodies.  The prevalence of CD in the general US population has been estimated to be only about 0.75%(2).  Since the prevalence of CD in patients with T1D is about 14 times higher than the normal population, wouldn’t it make sense to screen all children diagnosed with T1D for CD?

The Graber study highlights the dilemma faced by parents of children with TID.  About 2/3 of the children who tested positive for CD antibodies were identified within 5 years, but it took over 5 years for the other third.  Furthermore, many of those children needed multiple screenings to detect the CD antibodies.  Twenty of the children with CD antibodies were also checked by intestinal biopsy, taking a small sample of the intestinal wall to look for signs of CD.  Only 12 of them had confirmed CD.  In other words, 40% of the children who had biopsies had an unnecessary invasive surgical procedure.  Somewhat surprisingly, most of the patients with positive CD antibodies had no symptoms, even among those with positive biopsies. 

Screening is not without cost, so a parent has to ask, if my child with T1D doesn’t have any symptoms of CD, should I pay for multiple screening tests or have my child undergo a surgical procedure?  As Dr. Graber said in an interview, “… the frequency of finding folks with positive antibodies who are unaffected by the disease is pretty high, and a lot of those families choose not to go forward with biopsies or follow a gluten-free diet.”(3)

Considering the complexity of balancing the diet, insulin injections and blood glucose for children with T1D, and then adding to that the challenge of managing a gluten-free diet, parents of these children could easily be overwhelmed.  Unfortunately, some children with asymptomatic CD could be losing small amounts of blood from their intestine that isn’t visible.  They would be at risk for iron deficiency anemia and poor growth, both of which have serious consequences for the long-term health, and even brain development of these children.

The answer seems to be that parents of children with T1D must be made aware of the relatively high risk of CD, and be given enough information to make an informed decision.  That decision will depend on careful monitoring of their child’s health and especially growth with their child’s primary care physician.   So, add one more task for the parents of children with T1D, constant surveillance for any suggestion of CD.

1 Graber E, Chia D, Regelmann M et al. Screening for celiac disease in youth with type 1 diabetes: are current recommendations adequate? Abstract 30-OR presented at the 2014 Annual Meeting of the American Diabetes Association.

2 Fasano A, Berti I, Gerarduzzi T et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States, a large multicenter study; Arch Intern Med. 2003;163(3):286-292.

3 Tucker, ME. Is celiac screening for kids with type 1 diabetes adequate? Medscape Medical News, June 14, 2014

4 Graber E, Rapaport R. Growth and growth disorders in children and adolescents.  Pediatric Annals 41: 2012 e65-e72.

Marc L. Masor, Ph.D., Nutritional Biochemistry