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May 26, 2003

Nesidioblastosis

Question from Ra'anana, Israel:

I am a 17 year old boy who was born with nesidioblastosis as were my older sister and brother, but my parents (wisely) decided not to let me have a partial pancreatectomy so that I might not develop diabetes, unlike what the doctors recommended for my siblings. My sister developed it at the age of 12 and my brother at the age of 17. Recently, I had a urine test that showed that I had sugar in my urine and after a few tests they found that I have impaired glucose tolerance. The doctors decided to run some more tests including another oral GTT, and they told me I needed to eat a lot of carbs and sugary food for three days before the test. What I am afraid of is that all the carb and sugars will kill my pancreas (insulin production) for good. Is all this eating necessary for the test? I am concerned because at this point my pancreas is still working and I don't want to kill it. Why did this all start now at the age of 17 and not before?

Answer:

There is a great deal of variation in the time of onset of diabetes that depends also on how soon treatment for nesidioblastosis was instigated after birth, on the extent of surgery and of course on whether it is the diffuse or the adenomatous type. In your particular case, I do not believe that a short period on a high carbohydrate diet before a glucose tolerance test will do any harm. This test is not necessary to make a diagnosis of diabetes, but it might provide a definitive answer without the delay involved with repeating fasting and random blood sugars. Another simpler test that might help to decide if you needed to start on insulin is a hemoglobin A1c, and you should ask the doctor about this.

DOB
Additional comments from Dr. Stuart Brink:

Great questions. You don’t have to worry about a few days of high carbohydrate intake, and it is needed to help interpret the test results you have scheduled. The questions you ask are excellent ones but nobody really knows the answer to any of them. The tests you have scheduled may help figure this out so get them done.

SB