Generalised Atrophic Gastritis Mucosa (autoimmune) frightened!

[bflare]

I was diagnosed with celiac disease 3 years ago. At that time I had an endoscopy which also found patchy erythematous mucosa & mild gastritis / duodenitis and normal B12 levels on a blood test. On my follow up endoscopy last week it was reported as Generalised Atrophic Gastritis Mucosa. Think this was found mainly at the antrum but it does mention whole stomach but maybe thats referring to the location of the images and biopsies? I am awaiting the results of the Biopsies. I have also had a blood test for Serum Vitamin B12 & Folate (Postponed), Calcium-Bone Profile (Postponed), Serum Ferritin. The endoscopy report said H Pylori negative. I have been Dr Google for over a week and I must admit i am extremely frightened as I have diagnosed myself with autoimmune atrophic gastritis.

If Gastritis has got worse over 3 years from inflammation to atrophic would this suggest it must be autoimmune if H pylori negative? Or could it be something else. I drank alcoholically for over 20 years but i quit 6 years ago.

As I say i am extremely frightened and i do believe i haven't got long left to live!!!

I also have genetic hemochromatosis.

[wedgewood]

If you do have Autoimmune Gastritis , it is another name for Pernicious Anaemia. This can be treated successfully with B 12 injections . This forum is devoted to Pernicious Anaemia/ B12 deficiency. You will always find help on this site .

I assume that you are being treated for your haemochromatosis

You already have one autoimmune condition ( caeliac ) and it is very common to have more than one — ( I have 3!). Pernicious Anaemia is another autoimmune condition. There are over 100 autoimmune conditions !

Haemochromatosis can also be an autoimmune condition .

Trouble with Googling is that one can get carried away . . ……

Relax as much as possible Enjoy Christmas . Sending you very best wishes .

[bflare in reply to wedgewood]

Ah ok I didn’t realise it was the same. So I assume PA is the end stage of atrophic gastritis? Can you live a normal life without your stomach producing acid? It sounds impossible or extremely difficult?

Also, do you have to change your diet? People on another gastritis forum talk about not eating foods that are above 5ph. Since my endoscopy last week I’ve been having stomach issues which I can only describe as churning and my stomach making noises. I didn’t experience this before the endoscopy so I’m not sure if it’s something to do with the endoscopy, gastritis or stress.

I’m dreading Christmas dinner as I’m frightened to eat anything that might make the problem worse!

Thanks for your help

[wedgewood in reply to bflare]

If you read the latest N.I.C.E. guidelines on B12 deficiency , you will see that they call Pernicious Anaemia Immune Gastritis . It varies from person to person how much stomach acid you are left with . You need to help the stomach deal with the lack of acid . Lack of acid causes the production of bad bacteria which bring bloating , pain and rumblings . So encourage good bacteria with probiotics like sauerkraut , real yoghurt and the best thing for me by far was home-made kefir . Home made is the traditional way of making kefir, but a good substitute is supermarket kefir. I can also recommend traditionally made goats milk kefir called “ Chuckling goat “ This company employs nutritional therapists , who you can consult . I would do that if I were you . . Their kefir has to be sent by courier. I now make my own with traditional so called “grains” . It has helped me enormously .

Stress can cause lots of trouble . I can only tell you what has helped me .

Yes, Pernicious Anaemia is the end stage of Autoimmune Gastritis . You will by trial and error and help from a nutritionist, find a diet that will suit you . You will be able to have a normal life. You will also need B12 injections life long . I need to self inject B12 because I am unable to get b12 injections as regularly as I need them . Not too expensive- about £2.00 for one , everything included

I don’t wish to depress you , but the medical profession is rather ignorant about P.A. That’s why this forum has been such a help for me .

You may hear from someone else who has some different suggestions .

Please don’t worry youself . This can be overcome . You just need to start on the right path . Sorry, but I have to rush off now . Best wishes .

[Rexz]

98.5% of gastritis cases are h-,pylori caused gastritis. This is clearly what most GI docs see during endoscopy. ~ 1 to 1.5% of gastritis is autoimmune caused destruction of the gastric oxyntic mucosa. Then there are some causations like too much alcohol or smoking. I suggest you get a copy of your gastric biopsy pathology report. This will tell you how many biopsies they took, and very important where specifically by gastric region where they were taken. An important note is that H-pylori caused gastritis is primarily in the antrum sparing the upper body and fundus. Autoimmune Gastritis is primarily in the upper body and fundus sparing the antrum. There are some rarer cases where gastritis and intestinal metaplasia affects all regions of the stomach and this is called Pangastritis. The fact that you showed H-pylori negative does not mean you didn't previously have that infection.So, look closely at your pathology report. Look for words "oxyntic mucosa".

If you've got a B12 def then what Wedgewood said PA is a late stage manifestation of Autoimmune Gastritis. Also, AIG is progressive so for some time you'll be hypochlorhydria (low stomach acid) progressing to achlorhydria (no stomach acid). Yes, it is weird, but you can live with zero stomach acid. I have been achlorhydria for a couple years now and I have no oxyntic mucosa. There are OTC capsules that I take before each meal 2 grams of Betaine HCI (a plant based hydrochloric acid) and I also take digestive enzymes. Yes, you do have to modify your meals some. Eat less protein, eat less red meat, eat smaller meals more often, don't drink during your meal as this dilutes the only acid you've just swallowed in a capsule.

You can eat and live just fine with achlorhydria. But first confirm that you've got AIG and not just atrophic gastritis as the treatments are different.

Best wishes

[bflare in reply to Rexz]

Thank you for this!

The endoscopy procedure comments states:

Generalised atrophic gastric mucosa, mainlt at antrum. Sydney biopsy protocol across stomach. Generalised non erosive duodenitis. D2 biopsies as per request. CLO negative. Unrease test negative.

I await the full pathology results.

[Rexz in reply to bflare]

Sydney protocol is the right biopsy approach. That's where they take minimum of 5 random biopsies from each part of stomach. Sounds like your GI doc is knowledgeable of this. If this is not AIG which might be. H-pylori or other gastritis is healable. It just takes a long time.

[bflare in reply to Rexz]

Hello again. I’ve purchased a tub of Betaine HCI with Pepsin 648mg. What would happen if I took a capsule and I’ve not got low stomach acid? Although I’m assuming you’d expect to see this with someone with atrophic gastritis.

I’m still awaiting the biopsy results. As soon as I eat anything my stomach starts to churn. It’s not painful just odd. I thought it was celiac but now I’m not too sure. So I’m thinking about trying a Betaine capsule before my next meal but I obviously don’t want to cause myself any issues. Thanks again this site and members such as yourself are priceless!

[Rexz in reply to bflare]

Best thing I can offer is to try it a few times before meals. It won't hurt you. Worse case if you take this with normal acidity is you'll experience some reflux. My guess though is you'll see relief. Also if you very low acid level then remember what you swallow is all you get for that meal. Meaning as you eat or drink you're diluting your initial acid (betaine HCI) so eat smaller meals, eat protein first, and don't drink during your meal and 30 minutes after.

I'm achlorhydria and take 3g of Betaine HCI plus digestive enzymes.

Good luck and I suspect you're going to feel better. Rexz

[bflare in reply to Rexz]

Thank you. I shall give it a try!

[Bluebluesky]

Please be kind to yourself! This could easily be just autoimmune and have nothing to do with alcohol at all. Even more so since you have celiac disease already. There is a lot of genetics involved with autoimmune diseases. As long as you get your vitamins you're going to be pretty much ok. You might want to look into a multivamin spray (for the mouth) since there could be malabsorption problems with other vitamins as well.