From Auburn, New York, USA:
I was born with nesidioblastosis and had 95% of my pancreas removed at two weeks of age. I was then diagnosed with diabetes at 17 and I am insulin dependent. I was also diagnosed with celiac disease and am on a very strict diet. Now, at 20, I have experienced weight gain, acne, hair loss, mood swings, fatigue and irregular menstrual cycles since diagnosis. I was wondering if these complications could be related to the removal of my pancreas. If so, do you have any recommendations for treatment?
It is difficult to place all these diagnoses together. Nesidioblastosis is an abnormality of the very young with excessive insulin production, often uncontrolled, with severe hypoglycemia and treated with medications or pancreatectomy (pancreas surgical removal). Almost always, this results in diabetes since there are just too few beta cells remaining. Your case is unusual in that your diabetes did not show up for many years. There is also no known association of nesidioblastosis with celiac disease. Perhaps you have autoimmune type 1 diabetes and (autoimmune) celiac disease. With your other problems, I would wonder about Hashimoto's thyroiditis and hypothyroidism, so, you should be sure to discuss this in detail with your endocrine team to make sure that this has been checked. Also, be sure to ask about Addison's disease (adrenal insufficiency), iron deficiency and pernicious anemia.
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