Hi,

I waz diagnosed with a nesibioblastosis diagnosus today. I had a RnY in 2003 and have had dizziness, headches, and passing out ever since. My MD said I am positive for vasovagal syncope and strongly believes I have nesibioblastosis. Passing out has been dangerous as well as expensive with EMT and hospital trips. My MD wants to try modifying my white carbs before meds. Does anyone have information about similar experiences and/or dietary restrictions? Is it like our pre-surgery or early WLS diet? Thanks.

Sorry for the typos!

several folks on here deal with reactive hypoglycemia, but this is the first time I've heard of Nesidioblastosis. Interesting - keep us posted. Sorry you're dealing with this!

https://en.wikipedia.org/wiki/Nesidioblastosis

Definitely going to follow this thread. This is really interesting as I have never heard of a potential complication like this. I wish you answers to your questions!

My endocrinologist suspect that I may have that, but as long as I can control my symptoms, biopsy may be too invasive. If we don't need to - we try to avoid it. At this point, I just deal with that using diet, and as long as I am careful, I can maintain rather stable blood sugar. Beside that, my fasting hypoglycemia and severity of reactive hypoglycemia are a results of HPA axis dysfunction, resulting in Secondary Adrenal Insufficiency (SAI). For that I am on hormones replacement therapy, mainly cortisone, (plus others not that important to BS)

In the past, most of nesibioblastosis was discovered in children only, but since then it has been discovered that and adult onset nesibioblastosis can happen in people post op RNY, or any other WLS.

As far as I know, nesibioblastosis can be only confirmed with biopsy.

Do you have that and insulinoma? Insulinoma is highly elevated insulin, including fasting insulin. With just nesibioblastosis \, a person get elevated insulin response to foods, specialty carbs and proteins. To try to correct that, a person need to modify the diet, that can help limit insulin response to foods. I was told that my body can release as much as 10x (or even much more than that) the amount of insulin that a normal person would release.

I manage my condition, and I have to be sure not to eat too many simple carbs, not eat just lean proteins, and balance my meal with fat. I.e. protein shake with out fat could cause for me to get a severe RH for me app 30-45 min after I would drink it. Any highly process foods, that my body can absorb very fast can cause an issues for me.

I know my system very well, and when I started having issues, it was bad and very scary. And it took me app 2 years to learn what food, or combination of foods would most likely cause me problems, and what to do to prevent that. I used a lot of Blood Sugar Meter swabs. I tested my body response to almost all foods, and combination of foods. I needed to know what was happening to me and find ways to prevent that.

But knowing and doing it 100% of the time would make me a perfect person. And I am NOT a perfect person. I have my "That was sooo dumb" moments.

A general guidelines - a Food Insulin Index, (https://en.wikipedia.org/wiki/Insulin_index) gave a very general idea how an average, normal person may react to some foods. I knew my body was not normal, but I it helped me to understand that

https://nutrita.app/article/insulin-index ( i did not read the whole article , but it looks promising)

Check this paper: https://www.nejm.org/doi/full/10.1056/NEJMoa043690

"Hyperinsulinemic Hypoglycemia with Nesidioblastosis after Gastric-Bypass Surgery"

List of authors. Geoffrey J. Service, M.D., Geoffrey B. Thompson, M.D., F. John Service, M.D., Ph.D., James C. Andrews, M.D., Maria L. Collazo-Clavell, M.D., and Ricardo V. Lloyd, M.D., Ph.D.

Sumary:

We describe six patients (five women and one man; median age, 47 years; range, 39 to 54) with postprandial symptoms of neuroglycopenia owing to endogenous hyperinsulinemic hypoglycemia after Roux-en-Y gastric bypass surgery. Except for equivocal evidence in one patient, there was no radiologic evidence of insulinoma. Selective arterial calcium-stimulation tests, positive in each patient, were used to guide partial pancreatectomy. Nesidioblastosis was identified in resected specimens from each patient, and multiple insulinomas were identified in one. Hypoglycemic symptoms diminished postoperatively. We speculate that hyperfunction of pancreatic islets did not lead to obesity but that beta-cell trophic factors may have increased as a result of gastric bypass.

or this one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688875/

"Recognition and management of hyperinsulinemic hypoglycemia after bariatric surgery"

Sarah Malik,^a,b James E. Mitchell,^a,b,* Kristine Steffen,^a,c Scott Engel,^a,b Ron Wiisanen,^d Luis Garcia,^d and Shahbaz Ali Malik^b

"Summary

Hyperinsulinemic hypoglycemia with neuroglycopenia is an increasingly recognized complication of Roux-en-Y gastric bypass (RYGB) due to the changes in gut hormonal milieu. Physicians should be aware of this complication to ensure timely and effective treatment of post-RYGB patients, who present to them with hypoglycemic symptoms. Possible causes of hypoglycemia in these patients include late dumping syndrome, nesidioblastosis and rarely insulinoma.(...)"

THANK YOU SO MUCH!!!!!! This information is so helpful. It also helpes me deal with my fears. I never heard of thia until Monday and was treated by MDs for everthing under the sun to no avail. You shared some good material and I will digested over the next few days. Wishing you many blessings.

To add: once I understood what may be happening with me and adjusted my eating, even with the condition I have no problem maintaining my weight or even losing a regain. I actually have to add carbs when I lost too much weight abc got too think for me, with an extremely low body fat %.

You can pm me if you need my help trying to manage the condition. Hugs.