From Calgary, Canada:
My husband and I run a parent support group for families with diabetic children 10 years and under. The Children's Hospital here has recently been doing blood test screening for Celiac disease. It seems that quite a few children are showing the antibodies for Celiac disease and are going on to the biopsy and gluten free diet stage. Can you provide any information on the normal statistics, the accuracy of the screen and biopsy, and what are the risks of not treating the disease? Many of these children are not experiencing any celiac symptoms - good growth patterns, no abdominal pain, good blood sugar control, etc.
At the moment children who have a first degree relative with Type 1 Diabetes and who have more than one antibody indicative of the condition are being invited to take part in research studies, called DPT-1 in the U.S., and CANENDIT in Canada. The purpose of these studies is to find out if small doses of insulin (in the DTP-1) or nicotinamide (in CANENDIT) given before the onset of insulin dependence will delay the onset of clinical diabetes and thereby ameliorate microvascular complications. Blood samples from this population are also being assayed for anti-21-hydoxylase antibodies (an adrenal enzyme) and for anti-endomyseal antibodies (an indicator of the celiac syndrome).
It is being further suggested that people with positive's in the latter group have biopsies and start a gluten-free diet. Whilst no laboratory test is entirely error free, these tests are competently controlled and should be presumed to be reliable. About 5% of the samples are positive for anti-21-hydoxylase antibodies and about 1% for celiac antibodies. The study itself promises to give valuable information on two uncommon; but important potential complications of Type 1 Diabetes.
The question you ask about the consequences of not going on the diet is a very hard one to answer. On the one hand celiac disease amongst Type 1 Diabetics is still less common than the incidence of antibodies would suggest. In other words not everyone with antibodies gets the clinical syndrome. On the other hand, the incidence of the syndrome seems to be increasing as the knowledge of the antibody testing results becomes more widespread and arguably with such an insidious onset the condition should be treated as early as possible.
Also, maintaining a gluten-free diet for one child can be a significant burden for all concerned. Probably the main justification is that there have been a few recent reports of lymphoma of the bowel in cases of unrecognised and untreated celiac syndrome.
It would probably help your group if you could arrange a meeting with the investigators in the trial to go over these issues in some detail with the families involved and to give you the latest available figures.
Original posting 2 Mar 97
Last Updated: Tuesday April 06, 2010 15:08:54
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