From Boise, Idaho, USA:
My son was diagnosed with celiac disease in October 2004 when he was 18 months old. Around the same time, he began drinking and urinating excessively (80 or more ounces in a day), and wetting through several diapers a day. We tested his glucose level and it was perfect.
Over the past six months, his drinking and wetting have continued. I have noticed other strange symptoms as well. He complains of headaches. Three times in the last six months, I have seen him tremble because he went too long without eating. He often wakes up looking pale and drawn and is extremely lethargic until he eats. He sometimes craves sugar and will accept no substitute for it (NOT like a normal child begging for something sweet). He is frequently moody and emotional. His breath often smells musty and, just this week, he has started sleeping 18 to 20 hours a day. We had him tested again and his sugar level was outside the normal range by 10 points, but his doctor said it was not enough to diagnose him with diabetes. His A1c was 5.3%. She said that he is at high risk for diabetes and is referring us to a pediatric endocrinologist.
Given his strong family history of diabetes, his celiac disease, his symptoms, and his numbers, what does all of this mean? I know that diabetes normally comes on rapidly, but is it at all possible that he is developing it slowly? What about MODY? Could he simply be hypoglycemic? What else could cause these strange symptoms? What questions should I bring up with the endocrinologist? What else should I know?
If you have done lots of blood glucose testing, then, at least at the moment, this does not sound like diabetes. The symptoms of increased thirst and increased urination would suggest high sugars, but the normal A1c also does not say these are frequent, if at all. It is rather rare but not impossible to start first with celiac and then develop diabetes; if anything, this happens in the other direction for reasons not known or understood. Tests for the endocrinologists to consider include antibody tests such as islet cell and GAD 65 antibodies. MODY is not associated with autoimmune problems such as celiac.
If you have not already done so, it would be excellent to have a series of several days of home "profiles" of blood glucose readings done just before food and about one to two hours afterwards to look at low and high points metabolically and to bring this information to the pediatric endocrinologist. It also would be helpful during these craving episodes to have a documented blood glucose level as well. If all are normal (less than 100 mg/dl [5.6 mmol/L] and more than 65 to 70 mg/dl [3.6 to 3.9 mmol/L] before food, and less than 140 mg/dl [78 mmol/L] one to two hours later, then it is likely that this is not insulin deficiency/diabetes.
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