May 20, 2007
Celiac
Question from Oakdale, Minnesota, USA:
My seven-year-old daughter was diagnosed with type 1 diabetes in November 2006. A blood test for celiac disease came back positive. She has virtually no symptoms of celiac disease. We had a biopsy performed in January 2007. The doctor performing it said that during the biopsy, her villa looked okay, but the test results came back positive, so the doctor said to cut out all gluten from my daughter’s diet. We have gone on a strict diet of gluten free foods. We recently had her six month diabetes follow-up and her diabetes specialist was stating that since she was symptom free, having occasional gluten containing foods will probably not be an issue, that we are treating a patient not a blood test. In the meantime, we are waiting on her celiac blood test results to see how well controlled we have her gluten intake now. The specialist also recommended getting a second opinion from a pediatric gastroenterologist outside of a university setting. He stated that there isn’t really any long term information showing a significant increase in long term effects of small amounts of gluten compared to the regular population, when a person with celiac is symptom free.
To be able to allow her to enjoy an occasional birthday treat containing gluten would make a world of difference (or eating out once in awhile), but I am concerned because everything I have read shows it CAN affect her health. I feel as though the specialist performing the biopsy was extreme one way, and now the diabetes doctor is giving a much more open minded look at the entire picture. But, this is her long term health I am dealing with and I don’t know exactly what to do with the information. Can you give me any input as to how small amounts of gluten might affect her overall health in the long run? Again, the only reason the celiac was even diagnosed was due to testing from her diabetes.
Answer:
You are stuck in a classical dilemma of abnormal laboratory tests without any clinical symptoms and no long term studies to provide guidance. I am personally in favor of testing for celiac disease and if abnormal, removing wheat/gluten strictly because I am concerned about long term effects of asymptomatic celiac disease: osteoporosis/osteopenia, subtle vitamin and mineral deficiencies that might contribute to diabetes related complications, growth problems, delayed puberty and bowel cancer/lymphomas. It is true that nobody, including me, knows whether or not asymptomatic celiac disease has the same risks as untreated celiac disease, but what to do while waiting for a fifty year study to answer such a question. Were I to have a condition where eliminating wheat gluten would avoid such serious problems – for me or for my family member/child – I would eliminate the gluten. And, so, this is the advice I provide to my patients.
Celiac disease with in about 5 to 10% of kids with diabetes. Also, it is more common in Turner’s Syndrome, Down Syndrome and when other autoimmune disorders occur i.e., Hashimoto’s thyroiditis. It probably occurs as a common shared genetic abnormality in the autoimmune region.
So, I am not so sure that getting more opinions will really answer your query – what to do in someone who is asymptomatic. Our goal is to get the antibody levels normal, to check and follow bone density exams to make sure that there is no osteopenia or need for extra calcium/vitamin D and to provide optimal iron and other vitamin/minerals. Other members of the family should also be screened with the same antibody test since it is not uncommon to find other asymptomatic family members once one is discovered. Same for thyroid problems.
Ultimately, you and your family will have to decide on behalf of your child and then discuss as this child grows and matures.
SB
