Neuroendocrine cell hyperplasia?

[jkiron]

Hi - my latest endoscopy biopsy revealed I now have Neuroendocrine cell hyperplasia. Does anyone else have this and can it be treated? (I have AMAG & PA autoimmune.) I will see gastroenterologist hopefully next week. Any advice would be welcome!

[fbirder]

Neuroendocrine hyperplasia of stomach cells is caused by high levels of gastrin.

In normal people gastrin production switches on when they eat. The raised levels of gastrin make the Gastric Parietal Cells produce hydrochloric acid. This lowers the stomach pH - which switches off gastrin production.

If you have AMAG then you have no GPCs. When you eat something you produce gastrin. But there are no GPCs to make acid, so the stomach pH stays high, so gastrin production isn’t switched off. You have high levels of gastrin in your blood - hypergastrinaemia.

One effect of long-term exposure to high levels of gastrin is that it stimulates the production of stomach cells (presumably to make some acid). But any GPCs are destroyed by your immune system. Other types of cells aren’t, so their numbers increase. That’s what hyperplasia is - more of a particular type of cell than normal. Skin tags are hyperplasia of skin cells. They are harmless.

Sometimes the cell proliferation can go slightly wrong, resulting in Neuroendocrine Tumours (NETs). These do have the potential to become cancerous. But it is extremely rare. When I was diagnosed with NETs I did some reading and found that the 5-year life expectancy for people with NETs was slightly longer than for those without (I guess we have more regular checkups).

The treatment for my NETs is to have a gastroscopy every year. After this year, with no change, we decided that every two years would be good enough.

If you are worried ask your gastroenterologist about having a gastroscopy every few years, just to make sure.

[jkiron in reply to fbirder]

Thank you Fbirder for your informative reply. I'm less worried now.

Do you ever take HCL or other supplements to help with digestion issues so that food could be digested as in a healthy stomach?

[fbirder in reply to jkiron]

I did take betaine.HCl. Then I switched to drinking about 30 mL of lime juice with large meals, which seemed to do the trick. I stopped the lime juice last week. I shall be starting it again tonight. It certainly seems to make a difference to my digestion.

[Hidden in reply to jkiron]

Note: this response has been edited by admin - edits are indicated by use of [ ]

Jkiron

I have AMAG, PA,low B etc.

[comments overstating risk of cancer following on from development of NETS deleted by admin]

Information I don’t think you have.

The stomach has two levels of gastric acids: stomach acid in the upper fundus and Gastrin in the lower stomach. When stomach acid isn’t produced the body triggers more Gastrin. Gastrin is a growth hormone as well as acid the goal is to eat food low in digestion efforts and calm the Gastrin triggers.

[Admin note: as stated below by fbirder, gastrin is a hormone - not an acid.]

I have annual upper Endoscopy by my GI DR. And regularly see a hematologist every 6 months. I take B12 daily and intake calcium. I have an allergy to oral D3. Still trying to figure this out myself.

Things to know: don’t take HCI. This creates a small war in your stomach and worsens your stomach lining that is already vulnerable to low parietal cellcounts... and can elevate you ECL cell transition. My experience.

Get tested for H-pylori. If this is positive follow treatment fully. There’s a link to AMAG, thyroid disease and HPylori more than not. This is being actively researched to my knowledge.

My base line for anti partial cells was 1250 then up to 2550. Over 2500 is where transition is critical to cancer.

Ive changed my entire diet and I feel better and my labs have improved. My Anti parietal Cell count has dropped from 2550,to 1550 to 750 and recently to 286.

My diet seems steep but it helped.

-all the below activate the liver and increase Gastrin production. (Remember you aren’t trying to aid digestion, your small bowel will pick up where your stomach fails.)

[Admin note: see response below in relation to activating liver and increasing gastrin production - in patients with achloridia/hypochloridia = no or low stomach acidity gastrin production is high due to the lack of acidity to switch production off]

Caffeine Free

No lemon or lime

No vinegars

No alcohols

Reduced sugar to as low as possible

No glutens

No dairy

No soluble fiberous food as much as possible

No legumes (hard beans)

And definitely drink hot water with every meal. (Hot like hot tea water). I usually drank 2-3 morning noon and night.

-steam or cook as much veggies as possible.

Yes I cheated from time to time but I felt 200% better. And I’ve actually gained good weight. I'm no longer hungry feeling and I look healthy. My labs are the proof it works.

I hope this helps you.

[fbirder in reply to Hidden]

Just to correct a few errors.

Actually, gastric NETs are rare - just 2 in a million people get them - onlinelibrary.wiley.com/doi...

Less than 5% of gastric NETs metastasise. So that will affect about 7 people in the UK.

There are not "two levels of gastric acids: stomach acid in the upper fundus and Gastrin in the lower stomach" Gastrin is a hormone, not an acid.

There are no foods that 'Activate the liver'

All foods 'increase gastrin production'

My personal experiences are:

I consume alcohol, caffeine, vinegar, lemon and lime juices, gluten, dairy, fructans and legumes. I drink my water cold, preferably with a bit of quinine. I stir fry my veg quite often (with gluten-rich soy sauce and gluten-rich noodles).

My gastroenterologist says that my NETs have done nothing at all for at least five years and there's no reason at all to believe they will do anything in the next 50 years. So I can carry on eating the food I like, enjoying life, and not letting my illness rule the way I live.