Hello @megansims. I see that you have also found some of the NET discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/. Here is another discussion that you may find interesting in Blood Cancers & Disorders titled, "Mast Cell Activation," https://connect.mayoclinic.org/discussion/mast-cell-activation/. The discussion has many posts, but you may find some of the posts in that discussion relevant and similar to your own.

@megansims, has your provider mentioned anything about mast cell disorder, or are you just wondering from other members if there is any validity to your own concerns? Have you discussed this potential diagnosis with your provider or asked for a second opinion?