I discovered in May that I had Intestinal Metaplasia and this was a real shock. I’ve had abdominal pain, stomach cramps, diarrhea, bloating, difficulties with digestion, excess gas (sorry!) for a long time. Also feeling of fatigue and low energy and mood.
Then I only had blood test last week for Antibodies to Parietal Cells and came back positive. In May, my GI Dr told me to continue taking PPI - I was diagnosed with acid reflux a few years ago and was told to take PPIs then, but found they didn’t work and stopped after a few months. Now realise that I’ve most probably had too little acid in my stomach, rather than too much, and by taking PPIs I was helping this process along! I also have bile acid malabsorption (BAM) but the cause of this was never found. I always thought it was the acid reflux that was causing my stomach cramps, diarrhea, bloating etc but could be due to the BAM or even the AMAG.
I don’t have appointment with GI Dr for some weeks but am going to see GP this week.
Apart from the gut problems, I also have a lot of bone pain and pain in my muscles. I have some pins and needles in my hands but always thought that was due to significant degeneration in my spine affecting the nerves and also have sudden onset osteoarthritis in many areas. Realise now that low Vit B12 can cause neurological issues, ie pins and needles! My Vitamin D went to as low as 19 early last year, of course previous GP didn’t bother looking into reason but just said was due to lack of sun!
I’m going to ask for blood and stool tests, to look for Pernicious Anaemia, antibodies and possible bacteria in my stomach, as follows:
Blood:
Antibodies to Intrinsic Factor
CBC
ESR
CRP
Vitamin B12
Iron
Folate
Ferritin
Vitamin C? Not sure if can be tested in blood
Vitamin D
Gastrin
Anti Nuclear Antibody
Stool:
SIBO
H Pylori ( although always negative in past) Candida
Streptococcus Anginosus
I’ve never had any autoimmune disease before, and no family history, hence the shock. I understand this diagnose can lead to many other autoimmune diseases such as Harishistimo, Graves’ disease and has an increased risk of neuro endocrine issues.
I’m feeling particularly scared and lonely in this. I have 2 young kids and no one to talk to. Sorry to sound so dramatic but I walk around feeling like I have a death sentence over my head and thinking that the my autoimmune system is attacking my stomach cells all the time and I can’t do anything about it, no treatment. I can’t enjoy life with my kids and family anymore. I feel like crying all the time. I’m just being honest here because there’s no-one else I can be so honest with and no one who understands.
My previous GP refused to refer me back to GI last year, despite my severe and progressively worse stomach pains, cramp, loose stools etc., and said it was “all in my head”. He even wrote “health anxiety” on my records. I went back so many times earlier this year with ongoing stomach pain, and my lymph nodes were increasing in size also, in my neck, underarms and groin - but of course this was ignored and I was told I must have some infection that my body was fighting. For over 2 years?!!
My questions are:
Are there any other blood / stool tests I should ask for apart from the above? I read some more on another post but couldn’t understand the reason for them.
Are there blood tests I can ask for, to trace any other autoimmune antibodies in my system? Not sure if there is an Auto antibody test that covers the main ones?
Are there any other specific questions I should ask my GP and GI Dr when I eventually see him?
Please could you also advise me specifically on anything I can take to help fight the autoimmune response in my stomach. I know I will most probs have to have B12 injections - is this with folate injections? Is there a specific level I should ask for or does this depend on blood test results? Vitamin C - if so what level?
Any other supplements? - I’m in UK so it would have to be something I can obtain easily here. And if possible - levels / amounts that help you, although again I understand everyone is different so will need adjusting.
I can’t find a diet specifically for IM or IM with BAM, I don’t know if it’s Fodmap diet or low acid diet or Gastritis diet. I know about cleaning my diet, more fruit and veg, no acidic, spicy or fried foods, little but often - but would like an idea of what foods actually help. I know we are all different but just advice on what has worked for you?
I will also start a food diary to see what upsets my stomach. I’m losing weight fast because I’m stressed about eating the wrong foods and making it worse. I don’t know what to eat for breakfast, have a small salad for lunch and some chicken or fish and salad for dinner.I’m going to go gluten free and cut out dairy, already cut out acidic food some time ago. Just some tips on what you eat that works for you, would be great.
I’m particularly reaching out to Rex and Yorkshire Girl as having read some previous posts, I believe they are similar in that Rex was diagnosed with acid reflux and Yorkshire Girl had bile acid malabsorption. My apologies if I’m wrong in this.
Thank you to all those who respond and help me through this.
Written by
Ahrianna
To view profiles and participate in discussions please or .
Sadly many on here have met doctors and other health professionals with a poor understanding of B12 deficiency and there are forum threads where people discuss gaslighting and other poor health experiences.
Try to find your ICBs (Integrated Care Board) B12 deficiency guidelines in England (Health Boards in Wales/Scotland)if you have time.
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB or Health board asking which B12 deficiency guidelines they use and for a link to or copy of them.
Some UK forum members turn to self treatment if NHS B12 treatment is not enough.
This is only a bit of the information I can pass on to you but I didn't want to overload you.
Let me know if you'd like me to post more.
Keep asking questions and I hope you'll find answers and get the treatment you need.
Thankyou Sleepybunny, lots of info you have provided! I will have a look at the websites you kindly suggested.
I was negative previously for Celiac but may have to be tested again as suddenly found I have antibodies to parietal cells, so I may have others that tested negative previously but may now be positive. Seems to be gene variant as happened after Covid injection.
In the meantime, yes please do post whatever you can, including about diet and supplements apart from B12 eg iron, folate, optimum levels etc. Will GP prescribe small amounts and then I get top up injections myself?
Thank you again for your kind response, time and helpful info. Hope you are keeping well.
If you put @ in first, before you write Rex or Yorkshire Girl, this will bring up a selection of similar members' names and can click on the one you want. This will notify them - and they will read your post.
Not everyone with PA gets Grave's disease or Hashimoto's and vice-versa. Two of my sisters have Grave's - but not PA. I have functional B12 deficiency but not Grave's . It is possible that I do have PA - but 3 IFab tests say "no" !
The Intrinsic Factor antibody test (IFab) can give negatives 40-60% of the time where a person does have PA - it depends if the antibodies are active at the time of the test. So can take a while to get a positive result, but if you do, it is 95% accurate for PA, which should give a concrete diagnosis.
As for Grave's/Hashimoto's (autoimmune thyroid conditions), there is a more wide-ranging thyroid test set that covers both the usual NHS test/s plus anti-TPO and anti-TG etc. Marz was very helpful in looking at my results when I had that series of tests on her recommendation. I was luckier than my sisters, and though my thyroid struggled a bit at first, I did not have Grave's.
Be aware that anxiety can be a symptom of B12 deficiency. Just knowing that can help.
Thank you for this useful information Cherylclaire - very helpful. New to this so didn’t know about the @ before the name, but good to know. It’s really good to know about the IFab test showing negative even if positive. Also about the thyroid tests. So much to PA - thank you. 😊
Having read a post or reply, I've noticed that you might wish to alert other members to your post or reply. For example, you might have said so, or asked how to do so, or tried but it has not worked.
This is an explanation and screen recording showing how to callout members in posts and/or replies so they get alerted.
This is not to say you have done anything wrong. This is meant to help you by pointing out this option, and help to do so, not to criticise.
There is no need to reply! If it was helpful, ticking the "Like" button lets me know.
Hi Ahrianna, I have some of the same issues . I was diagnosed with IBS & GERD. I have battled the symptoms you speak of for 20 years. I have found after trying hundreds of meds and OTC products that digestive enzymes have helped me the most. I take the enzymes with each meal and my reflux disappears. I still have some bloating and pain flares occasionally but with the reflux relief I just feel so much better mentally. I use Bio-core by Swanson. Its a US company and I can get it from Amazon or Swanson. Maybe someone can recommend a good brand if you're in the UK. The pain & diagnosis is so scary at first but after 20 years I've learned how to manage most of the flare ups. I know there are many on this forum that have posted digestive advice.
Thank you Motheroflittle Do you have PA or IM as well? How long before eating do you take the digestive enzymes and is it safe to take if too little acid as wel - or only if too much acid in stomach? Thanks for your helpful response 😊
Yes, I have PA. I take 2 enzymes right before or during a meal. That's what my brand recommends. I would just follow package directions on what ever brand you buy. I think its safe to take it no matter the amount of acid in stomach. They help break down carbs,fiber,proteins etc... Bio-Core is a mix of several different enzymes. I also take one Swanson L.Plantarum probiotic at night for digestive health. I hope you get some relief soon🙂
No, I dont eat breakfast very often just coffee with cream some times toast. Salad at lunch with a small treat like a chocolate, apple, chips, etc... dinner is what ever I want. I dont like to exercise so I dont eat a whole lot.😁 l take one capsule of enzyme each time I eat , maybe two if its something I know is hard to digest like cheese or meat. One L.Plantarum probiotic capsule at bed time. Probiotics can be taken any time but I find it works good overnight. If I am having an IBS flare up, I take two caps of both and eat smaller meals. I had a really bad flare last week so I took two with meals. Stress is my biggest trigger. We went on holiday so I was stressed more than if staying home. I also ate a lot more than usual. 😬
NICE have a guideline on diagnosis and treatment of coeliac disease.
Search for "NICE guideline Coeliac disease" to find it.
" I have some pins and needles in my hands but always thought that was due to significant degeneration in my spine affecting the nerves and also have sudden onset osteoarthritis in many areas"
Has your GP got a list of all your symptoms especially every neuro symptom?
I used PAS checklist below and added extra symptoms at bottom of page.
I am concerned on your behalf that you mention degeneration in your spine.
Do you mean the nerves in your spine or the vertebrae or something else?
Have you seen a neurologist as you mention pins and needles.
B12 deficiency from PA and other causes can cause damage to the myelin layer around nerves. In severe B12 deficiency this can sometimes affect the spinal cord.
I've read articles that suggest if the spinal cord is affected it can be treated successfully in some cases if found early enough and if patient gets enough B12.
People can experience B12 deficiency symptoms with a normal range or even above range serum B12 result. See blog post below.
My initial symptoms for PA were all the bowel issues you describe. You should get every other day B12 injections. The PA test has a high false negative rate. With all your symptoms, it would be ideal to just start the injections and see if you improve.
So sorry to read your post and of your anxiety and fearfulness as a mother. You describe where I was two years ago. It looks as if my AIG/PA is hereditary and my kids may have it too. The most important information I can give you is that many of us on here have found ways to recover our health and treat ourselves to get back a near normal life.
I was never on PPIs but I have had low stomach acid for many many years without understanding what it meant - until the symptoms hit - exactly as you describe. I have autoimmune pernicious anaemia (PA) also called auto immune gastritis (AIG)
What we are suffering is a system failure which results in several deficiencies. All need addressing to get to optimal levels for the B12 in the system to work.
At this early stage the key co-factors are folate, ferritin and vitamin D. All need to be around mid testing range so for me that was folate around 12 ng/l, ferritin about 90ng/m and vitamins D around 100ng/l.
For stomach repair after 1 year of experimenting I found the autoimmune paleo diet was a game changer. So no lectins, no wheat, no processed sugar, no A1- casein (French, Italian and Swiss dairy only then), wild prawns and seafood only, grass fed meat only. it’s quite easy to adopt once you get your head round it and change how you cook and prepare food. I also take Betaine and pepsin tablets to raise my stomach acid before a meal. I still have low stomach acid so eat only once a day generally and still little appetite but no IBS symptoms now. Whole family on the same “diet” and we still enjoy lasagne, cakes and biscuits and steamed lids and custards! The biggest anti gust for me by far is any corn or maize products but there are east alternatives such as arrowroot which is kind to the stomach
To help my gut I brew my own Kombucha, kefir and make preserved veges which are delicious!
I started injecting every other day and this costs me around £1 an injection.
I have just had to rebuild my gut after a colonoscopy where the preparation meds removed all gut flora good and bad. I drink premium grass fed bone broth for collagen and take happy mammoth gut repair. I also take slippery elm and aloe Vera to help my gut lining.
The only other thing to add is that under NICE guidelines if AIG/PA is suspected then an endoscopy to screen your stomach lining as a base line to see what’s needed by way of management in the future.
Please don’t be scared, that’s mainly the effect of symptoms and is not a true reflection of reality. Whilst complex and unpleasant and there is a lot of ignorance amongst medics about AIG/PA, it is treatable and you will be able to find your Heath recovery path that alleviates most if not all of your symptoms
So focus on the positive - there is a way out and also you are not alone in your journey as you have all the lovely peeps on this forum.
If you haven’t already I would join the Pernicious Anaemia Society - I joined as- lifelong member the day I got my diagnosis- in my view it is one of the most credible sources of information
Please stay away from Facebook groups as I found them to be generally alarmist, ill informed and narrow minded - always exceptions but until you are more knowledgeable and feel better - I would defo steer clear!
You have gotten a lot of good advice for treatment of your PA issues. I had my gallbladder removed several years ago and after a time developed BAM. My GI doctor gave me an Rx for a bile acid sequestrant that has worked wonder for me. Three tablets with meals and water and the explosions have stopped! It may be something to look into to help you. Good luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Autoimmune gastritis due to PA
Creating a Framework for Treating Autoimmune Gastritis—The Case for Replacing Lost Acid 
Autoimmune gastritis
PA from Autoimmune Gastritis - do the stomach issues improve?
stomach acid
