Linear endocrine cells hyperplasia & Autoimmune Gastritis

Sounds good, @eileenb1022 . Do your best to relax and be well prepared for your appointment.

thanks. i will. thanks for your help...

Hi @eileenb1022

I just wanted to check in with you to say hello and to see how you are doing. Any new appointments on the horizon? How are you doing with the stress of waiting?

Hi Teresa,
thank you so much for checking in with me. i am doing ok stress wise. i do have a new pcp line up next week. its actually a conceige the person i wanted to see isnt taking new patients which is often the problem with really good providers. the one im seeing they reviewed her with me. i think and hope she will be a good ft. this practice has been recommended to me and has mostly had really good reviews. right now though im trying to juggle and straighten things out insurance wise as they are in a neighboring state and im just trying to figure out my insurance situation(i have 2 so i can go where i need to but i am waiting on someone to figure all that out). im hoping this new pcp can refer mt to a rheumotologist sooner than the one i got in feb. my sjorgen symptoms are pretty severe. i have been dealing with that since last feb. but as far as Gi you know the other day i had a good day i was able to eat quite a bit including a small piece of pizza. then yesterday i went backward went to my favorite turkey restaurant of course didnt finish but felt so sick, dizzy and nausea and like i could pass out my husband said to put my seat back in the car which i did and it helped. i know my GI appt. is a little over 2 months away and it gets better as the date gets a little closer. to be honest its not like i get alot of stomach pain i dont its mostly i get full fast. its so hard cause before i was a really big eater as i love food always have i just cant eat the way or the food i used to. plus having my gallbladder removed in january didnt help either. but i am ok. i like talking to you. i wish i could give you my e-mail but i know thats not allowed here. please write again! so sweet of you to reach out. i was thinking about you the other day...

So good to get an update from you, @eileenb1022. It sounds as if you are getting your appointments in place and you have lined up some good medical providers that you will have confidence in.

Yes eating small amounts is important. After three surgeries on the upper digestive tract (also had the gallbladder removed), I get the "full feeling" very quickly. It really is not all that bad once you get used to it. When eating out at a favorite restaurant I know in advance that I will be taking at least half of the meal home in a to-go container. On the bright side, there is less cooking for the next day.

yes i am getting things in place which i am glad about. eating like this is really hard for me i think mentally too. but i should be used to it after over a year. i never finish my meals at restaurants, even at home even if im eating something good for me. but your right there is less cooking the next day. my husband will make me smoothies which is great! i got your tag for the zoom meeting i signed up for it so maybe we will meet then!

@eileenb1022
Great! I'm glad that you signed up for the Zoom meeting. You will have opportunities to share and learn from others. It will definitely be beneficial for you.

I just went through some of this. I had already been diagnosed with autoimmune gastritis and these tumors which when Mayo biopsied, mine were benign.
I was panicked too! The only way I found answers was asking on mayo patient portal. It may take a few days but then at least a nurse or someone in that dept can respond.
Have you tried that? I thought I was the only person on earth that has this? I now get a endo and biopsy once a year. I was told by their top endoscopy surgeon that it is slow to develop and not to worry much. That is the second doc to tell me this. However each of us is different. Write portal messages until you are heard! After all you have a right to be scared and need answers. Did they biopsy you? We can share stories if you want.
Where did you get this done at if I might ask. best of luck to you.

yes i am really looking forward to it. i am hoping someone can give me feedback on what i was told as far as the pathology results i got! i love zoom type calls. the support is really helpful. i hope these meetings are ongoing!!

Hi,
its so good to meet someone going through the same thing. were you a patient a mayo? i'm assuming you have to be to access their portal but i know how good they are there so thats great! i live in new hampshire and first it was my gallbladder but it took someone 6 months to tell me thats what they thought was wrong with me. i did have a excellent surgeon, i remember her telling me at my pre-op appointment i had gallbladder symptoms and some symtons that werent gallbladder related but at that point i was still clueless. after surgery i was still sick so she referred me to their GI dept. mind you this is the biggest hospital in new hampshire and used to be referred to as NH's best hospital and i always had good experiences there but many eople have told me how dissatisfied they were amoung other things. anyway i went through a smartpill and a hydrogen breath test both normal. my endoscope was this past june 2. this is when things went really downhill. first i was told i would only have mild sedation, no anestesia. i begged for anestesia. the dr made these wacky reasons why it wasnt possible. i was terrified and upset and i just thought the biggest hospital in the state doesnt have enough anestesia? so i only went through with it because i knew i really needed it done. ell the mild sedation did nothing for me. i literally felt everything to the point i was choking and gagging on the hose. a week later i got a letter on my portal. i did have biopsies. it said no infection. negetive for celiac and h plori also no dypepsia. but i dont know if you had this if you did maybe you could explain it. it said "linear endrocine cell hyperplasia with the possibility of autoimmune gastritis. the only comment from the dr was it was nothing to be concerned about but did require follow up. of course i was scared. i had no idea what it meant but i thought it was concerning. right after i called them asked to speak to the dr and i told them why i wanted to speak to him. they refused. about a month later you know i heard nothing from them at all so i called to try to speak to the head of the motility dept.i left a message kept calling nothing. then i receive a call from a "GI manager" which was useless but sorry this is so long. obviously i knew i needed to go somewhere else. but this place was dartmouth hitcock in Lebanon, NH and since NH did me wrong mostly for over a year so i felt i had no choice but to go to Boston. my appt. i couldnt get in until november 10 at mass general which is a top hospital in the country im looking forward to it but i do wonder and worry if anything could change between june and november. its scares me in the back of my mind. i wish i could put my e-mail her for you but i know thats not allowed but would love to talk to you again. 😉