From Medford Lakes, New Jersey, USA:
I have written before but now how more information about my six-year-old daughter who has celiac disease and small fiber neuropathy. Her original problems were extreme thirst and urinating. which seems to have subsided some. She had blood sugars of 105 mg/dl [5.8 mmol/L] and 106 mg/dl [5.9 mmol/L] and an A1c of 5.8. She once had a meter reading of 121 mg/dl [6.7 mmol/L] fasting and one post meal high of 291 mg/dl [16.2 mmol/L]. The doctor won't diagnose her based on these meter readings and her fasting blood sugar done by a laboratory was normal. The problem now is that she has glucose in her urine, first only laboratory tested, not a dipstick. Now, her pediatrician detected it with a dipstick. So, she sent me to the laboratory again for an A1c and another blood sugar. Her A1c was 6% and her fasting blood sugar was 99 mg/dl [5.5 mmol/L]. Since the fasting number was so good, we aren't doing anything. The endocrinologist doesn't want to see her for one year due to the fact she didn't present with any antibodies in her laboratory work. According to the laboratory, her antibodies test result was 1:64, high. What does this mean?
The family doctor said he will test her every three months. How can my daughter's urine have glucose if she is low to normal now? I thought it only was present at blood levels of 180 mg/dl [10.0 mmol/L] or more. And, could this cause any damage in long run? Sorry for so many questions, but I keep being told not to worry. I know she doesn't yet have diabetes, but I am concerned because of that one elevated post meal blood sugar.
I'm a bit puzzled since the intermittent high blood glucose readings are certainly not normal. The good news is that they are only intermittent. This could be the earliest form of her pancreas not functioning well and intermittent insulin insufficiency even with negative antibodies. It is especially important for you to know that antibodies are only positive about 60 to 80% of the time and it depends upon which antibodies are tested, in which laboratory, which technique, etc. General advice would be to minimize simple carbohydrates in her meal plan and focus on high fiber slower acting carbohydrates. This may be difficult since gluten free carbohydrates often are also those needing more insulin and so could place some "stress" on an already stressed pancreas. We would usually suggest periodic blood glucose profile monitoring and periodic A1c tests, so the puzzling thing is why they are not wanting to have you monitored by their team more regularly. If necessary, go get a second opinion from another pediatric diabetes team. The slightly high A1c levels are also somewhat worrisome since this also suggests average blood glucose levels higher than ideal. With unexplained weight loss, excessive urination, night time urination or bed wetting, check the blood sugar levels and contact your team no matter what other advice you have been given.
Additional comments from Dr. Larry Deeb:You need more data. For which antibody was your daughter tested? There are several. You need to ask for the specific results. It sounds like your daughter may be on the way to diabetes.
Original posting 27 Aug 2008
Posted to Diagnosis and Symptoms
Last Updated: Tuesday April 06, 2010 15:10:15
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