Trying to find out if anybody has nesidioblastosis?
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Not me. But I was interested to look it up.
Nesidioblastosis is when too many cells in the pancreas that make insulin or too much growth of those cells, a form of hyperinsulinemia.
@lolaestelle, are you experiencing symptoms? Has your medical team determined the cause of nesidioblastosis in your case to offer effective treatment?
@lolaestelle welcome to Mayo Clinic Connect. I never heard of nesidioblastosis. (@scolio & @colleenyoung thank you for the information.) Have you been diagnosed with this? What are the symptoms? Is there any treatment?
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They diagnosed me, and I have terrible symptoms of low blood sugar and sweating. No treatment for me as I have bad bowels and Any medication’s to help cannot be used on me.
@lolaestelle I am insulin dependent diabetic and at risk of experiencing hypoglycemia (low blood sugar). I have learned to always have a means of testing blood sugar (ie glucometer) available and a source of carb available to bring low blood sugar up. Did you know that the little candies “Life Savers” were created for that reason? I have found that it is really easy to overtreat a low blood sugar and then have a BAD rebound into over 300. What I was taught to do is test, consume 15 grams over carb, wait 15 minutes and repeat as needed. I like a liquid carb source like juice because it is quickly absorbed. The waiting is the hardest part because you feel like crap and can easily panic. If you have a partner to wait it out with you and make sure you don’t overtreat that is invaluable. I realize my situation is different so this may be of little help to you but I thought I’d offer. I’ve known people diagnosed with hypoglycemia and this is helpful to them. Also adding a bit of protein can help to absorb the carb without causing a spike in blood sugar. I like a tablespoon or 2 of peanut, a slice of lunch meat or cheese, cottage cheese. All these suggestions have to be considered in regards to your “bad bowels”. What if I may ask is that about?
I meant to say “of carb” not “over carb” in the middle of my response. I also meant to say “peanut butter” not “peanut” towards the end of my post. Peanuts are ok too but have to be chewed up. Not always a safe choice if blood sugar is really low. Sometimes I have hard boiled eggs on hand that work but you wouldn’t want to take the time to make them.
I had 7 bowel surgeries and 75 percent of my stomach removed. Had reflux surgery that went very wrong and I got ischemia in my stomach and part of my bowel. As this disease progresses, I can only eat about six or seven carbs sometimes a little more. The mayo did not do my surgery. Basically they gave me a gastric bypass and a sleeve surgery. I’ve had endless health problems since. I appreciate so much all this advice. Thank you so very much.
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