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Linear endocrine cells hyperplasia & Autoimmune Gastritis
Hello,
I don't know if this is the appropriate forum but it does have something to do with my question and I also couldn't find a gastro board. On June 2, 2022 I had a endoscope with biopsies for ongoing stomach problems. The fact that I was refused anesthesia is another subject but I had it done and a week later I got biopsy results on my portal no phone call. It said linear endocrine cells hyperplasia with the possibility of autoimmune gastritis. Dr said it required follow up but no need for concern. Since my follow up was over 2 months away I tried to call him they wouldn't let me talk to him. Several weeks later I tried to speak to the dr who was the head of the motility dept. He wouldn't call me back. Some gi manager called me question me why I was calling this dr. This morning I got off the phone with the complaint dept he was full of excuses too. I do have a appointment with a new gi but it's not until November 10. I'm worried that between June and November the hyperplasia can develop into a endocrine tumor or do you think I am safe until November? This person I spoke to this morning was totally unsympathetic. I learned online by other people who had this told me I was suppose to have these antibody bloodwork which this hospital never ever mentioned to me. This person this morning said I can't believe anything from anyone on the internet. I said what was I suppose to do when now dr would talk to me and I had no idea what these biopsies results meant. I just want to know if I'm safe until November. Thank you
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Hello @gastrogirl
What an interesting question. I am not personally familiar with this disorder, however, I did some research and found information on the MSD Manual website. Here is the link,
--Autoimmune Metaplastic Atrophic Gastritis: Recognizing Precursor
Lesions for Appropriate Patient Evaluation
https://www.msdmanuals.com/professional/gastrointestinal-disorders/gastritis-and-peptic-ulcer-disease/autoimmune-metaplastic-atrophic-gastritis
What type of treatment are you having for this rare disorder? Are you receiving B12?
Hi,
I have posted before. i believe i talked to theresa. who was helpful supportive and reassuring. but as i get closer to seeing my new GI for the first time i feel nervous and anxious. idont know why and last couple of days i have felt fuller faster, some discomfort. i have been under stress but i never had the antibody testing i was suppose to so i have been pretty much in the dark since june. i did start getting b12 injections, i am seeing a naturpath doc next week and last week started eating gluten and dairy free. idont even really eat that much. my biopsy esults from former GI was linear endrocine cell hyperplasia with the "possibility " of autoimmune gastritis. its been almost impossible to find anyone who had been told the same thing. just looking for someone to talk to. thank you!
I am here! I have basically the same thing, only a bit different. But I also feel alone with all of this. Even docs look at me and tell me this does not exist! hah! I would love to just get with you online and compare stories and see if we can help get each other through this. I will tell you my story if interested. I always feel so lost and alone in this.
Anyone else have this? Mine has gotten quite severe and it seems nobody understands it or has even heard of it. Makes it so hard to treat. Anyone else out there have this condition?
Hi @eileenb1022, members share a lot of tips about getting ready to meet a new specialist that you might find helpful in this discussion:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Might it help to keep a journal of your symptoms leading up to your appointment? That will help to put your worry into doing something. Keep it simple. Track the symptoms you're experiencing as well as some notes about what you were doing at the time, time of day or possible triggers. You might notice some patterns that would be helpful.
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1 Reaction@eileenb1022 and @gastrogirl, I'm glad the two of you have connected. I have merged several of the new discussions you both have started into this one discussion in the Autoimmune Diseases group and NETs group so that your stories are in one place where you can continue to connect.
- Linear endocrine cells hyperplasia & Autoimmune Gastritis https://connect.mayoclinic.org/discussion/linear-endocrine-cells-hyperplasia/
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2 Reactionshi colleen,
thank you for your help and your links. i appreciate your help
eileen
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1 ReactionThank you Colleen. I'm so glad to have connected with @gastrogirl. it really helps having the support from someone who understands what your going through. i am so greatful to the mayo clinic board it has been invaluable to me. 😉
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2 ReactionsTeresa, as a new member of the NET Support group, I get the daily email, showing that our group has had some updates or new submissions. Is there a easier way to open up the page and selecting only the new ones to read, I don't know how to find the new ones?
Hi Kim,
Here are a couple of blog posts that might help you set up your preferences.
- How to customize your notifications and settings https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/how-to-customize-your-notifications-and-settings/
- The Mayo Connect Digest: How to make to most of it https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/the-mayo-connect-digest-how-to-make-to-most-of-it/
For a simpler explanation, try these tips.
In your daily digest, click VIEW (big blue button) and it will take you to the most recent posts made in the last 24 hours.
Click SEE ALL UPDATES to go to your Notifications pages to see all activity for the NETs group from newest to oldest.
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