Upper abdo pain/B12 deficiency

[Maldeerum]

A year ago I was very sick with B12 deficiency. I am in the UK and had NHS loading doses and 1 inj every 2 months from them. I self inject every third day with my GP’s approval.

I have had digestive issues for years - persistent diarrhoea, bloating, abdo discomfort. Over the last year I have seen a nutritionist privately, had antimicrobials to try to address SIBO, am on low FODMAP diet etc. No improvement.

Over the last few months I have had bouts of excruciating upper GI pain when eating. This is now happening 2-3 times a week. The bouts of pain cause me to writhe on the floor until they subside after an hour or so, leaving me with extreme bloating and tenderness for 1-2 days. I feel full after very little food and always have some level of abdominal distension.

When I started B12 injections my IF test was negative. I’ve been on the waiting list for gastroscopy for a year with at least another 6 months to go before the potential for a scope.

The pain is so bad I’m going to have to see my GP again.

I have Hashimoto’s, coeliac disease and long term issues with iron deficiency.

Can I reasonably expect to obtain an endoscopy sooner with this pain or is there no hope? Up to now I’ve had nothing my GP thinks is a red flag.

Are these symptoms indicative of autoimmune gastritis? I think I’m heading for being fobbed off with IBS as a diagnosis. It may be that but it is worrying me now and I’m concerned about what is happening in my stomach.

I’ve been too sick to work for a year now, recovering from the B12 deficiency and a very unstable thyroid. Things are on the up except for these increasingly difficult GI symptoms.

What can I ask for from my GP at this stage? Any tips on a way forward or do I have to consider private endoscopy ?

Many thanks as ever.

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[Nackapan]

Im sorry to hear you've had such a wait to be seen by gastroenterology.

My daughter had years of this.

Also lost her job

She wax prescribed s drug for mobility when digestion wasn't happening as a get out .

She also used fodmap but had to modify it .

Eats in a completelydifferent way .

Eliminates dairy .gluten Fructose abd red meat .

She slowly reintroduced egg in foods so can at least buy gluten Free bread as used to make it with buckwheat.

It's taken years .

The endoscopy

Didn't show anything beyond inflamation.

Also had pain bloating.

Food just sitting there 😐

Her saviour when unable to eat much was almond milk which is fortified and 🥑 avocados

Still can't eat alot of foods 😕

It took years to work out what was tolerated .

It was later she was diagnosed with B12 deficiency. Megobolastic Anaemia, settle low ferritin folatd and vit D .

Then Ehlers Danlos snd POTS.

Ask G.p for an urgent referral because of your pain

Or as you suggest pay and go private.

[Gambit62 Administrator]

Negative IFA does not rule out PA as a cause of B12 deficiency. The test isn't very sensitive and gives false negatives between 40-60% of the time depending on the exact methodology.

The pain you describe may be indicative of low stomach acidity. I get something similar and find that drinking something acidic - eg a little orange juice - calms it very quickly, though it may not be in the same area so best to speak to GP. They may want to put you on PPIs if it is to do with stomach acidity - which is fine if you are on injections.

[wedgewood]

Having a negative Intrinsic Factor Antibodies test does not mean that you don’t have Pernicious Anaemia. Your doctor approves you having B12 Injections every 3rd day . You have Hashimoto’s and coeliac disease . Both are autoimmune conditions and so is Pernicious Anaemia.

P.A. and Hashimoto’s often occur together. Rarely does one get get one autoimmune condition. I have acquired 3 ! Sounds like you have P.A. …. P.A. occurs when the parietal cells in the stomach are attacked and destroy these cells which produce stomach acid and the Intrinsic Factor , both of which are essential to absorbing B12 in the stomach. B12 injections overcome this by going directly into the blood . Other vitamins , minerals and trace elements need stomach acid in order to be broken down and absorbed .

The consequence of the loss of parietal cells means low or no acid in the stomach . (Hypochlorhydria/ Achlorhydria.) Stomach acid controls the bad bacteria which we all have in our stomachs. Lack of this acid allows bad bacteria to dominate and take over resulting in stomach pain , bloating , bad digestion and general malaise .

There is a test to find out about stomach acidity , but NHS doesn’t do it .

There is a test using bicarbonate of soda to do at home ( look it up , and maybe try it — I did )

You need to see a really good gastroenterologist . If you can possibly afford it , I would go for a private consultation and endoscopy . I’ll private message another bit of information .

I have diagnosed PA ( lucky to get a positive IFAB test .) I overcame my stomach pain and bloating by using probiotic food like kefir( make my own now ) sauerkraut, real yoghurt. If you hate the sound of that , try probiotic capsules! If you really do have P,A. Try drinking an acidic drink with meals especially protein ones . Diluted organic apple cider vinegar with the mother . etc( also available as capsules now ) . Severe cases take Betaine Hydrochloric acid capsules . ( all obtainable from Amazon )

Probiotic foods introduce friendly bacteria and yeasts which are needed for a well functioning stomach . I hope that you can get well again soon . There is a solution to your problem . You need a good doctor who is also a good detective ( few and far between I fear) Do not despair!

Best wishes .

[Enuffisenuf]

We have apple cider vinegar with every meal. Lidl do an organic one with the mother.

[Maldeerum]

Many thanks for your helpful comments. I’m already taking betaine HCL with each meal and the probiotics side is covered. I have very low numbers of commensal bacteria and lots of the nasties despite taking probiotics longterm. This is slowly being addressed with the nutritionist and careful pro/pre biotics suitable for my current status.

Despite careful attention to my diet, supplements, getting my thyroid under control and a year so far recovering from low B12 ( neurological symptoms) I’m now suffering with these bouts of unmanageable pain that are worsening.

I’m due to phone the doctor tomorrow because so far I’ve been offered a phone consult in a month’s time and I feel I need more care than that.

Thanks so much for giving me some bolstering to ask for my endoscopy to be brought forward.

[bookish in reply to Maldeerum]

Hi, are you just gluten free or are you (or have you tried) totally grain free? Corn 'gluten' (zein) can cause damage just as much as wheat gliaden and is not tested for. I found I reacted to corn, millet, even rice, so came off the lot and have only recently started to reintroduce small amounts of the least likely to be reactive (rice). Hope the call tomorrow goes well. Best wishes

[Maldeerum]

Thanks, I’m not totally grain free because I have rice but I don’t have corn, millet etc or pseudo grains. It’s a challenge isn’t it? I think it would be sensible to try without rice too. Thanks again

[Sleepybunny]

Hi,

Only time for a very quick reply.

Both coeliac disease and PA (pernicious anaemia) can lead to gastritis.

Pernicious Anaemia Society

pernicious-anaemia-society....

Coeliac UK

coeliac.org.uk/information-...

GUTS UK may have some useful info.

gutscharity.org.uk/

"I feel full after very little food and always have some level of abdominal distension."

I think the GP should be referring you to a specialist. There are some serious health conditions that can cause the symptoms you mention above.

If you can't get a GP appt then maybe you could call NHS 111 if you feel it is urgent and mention these symptoms.

111.nhs.uk/

Might also be useful to chat to your local pharmacist.

Always ring 999 for an emergency medical situation.

I'm not medically trained.

[Oneash]

If you have Pernicious Anemia, sadly you do have an increased risk of stomach cancer.It could be stomach ulcers.

It could be pancreaticis.

You may have issues ,now you are reversing out with gall bladder overload. Make sure you are getting co-factors folate and B6. Igennus Super B-Complex is good for those and more.

But it sounds pretty grim, so yes get seen ASAP. It's good to be able to clearly pinpoint the pain.

Big hugs.🍀

[Maldeerum]

Thanks all. Cofactors are all addressed.

I contacted the GP surgery today, got a call back from a completely disinterested GP whom I’ve never met. She just said she’d do bloods for anaemia (these were done in Dec so this just seems like stalling) and that I should book in with my own doctor. I tried to book and there are no appointments available with my doctor so I’m at a loss. I tried to book with another and no availability. The other two GPs there are one that told me I had fibromyalgia when I went with my crashingly low B12 levels and the other gave me total flannel about ferritin so I’m very reluctant to see either of them.

All I’m hoping for is an expedited gastro referral. I know it’s not their fault that the NHS is on its knees but I simply don’t know what to do.

I’ve looked into private gastroenterology and endoscopy and it’s approx £2k which is unaffordable.

[HBEd]

I also had really bad pain when I ate and lots digestive issues and discomfort after eating too

I am parietal cell positive and have genetic issues that mean I already.cant absorb vit d folate nor b12 easily.

Then started over 15yrs getting worse and now on b12 injections every other day and most have gone away however, still got pain after eating until I took a daily probiotic capsule which has been a game changer for me personally. I bought it from amazon no fillers etc and can it manage without it at all

I've also just introduced acids and enzymes from advice via a nutritionalist who explained that if and enzymes acid are low we won't break down our foods and release nutrients easily . I m unsure if they are working just yet we ll see over time

A good nutritionalist can also help with this and offer specialised tests to get to the bottom.if it all too

[Enuffisenuf]

If you are in so much pain you're writhing on the floor, perhaps you should call 111 next time it hits. They will probably advise a trip to A&E, where you should at least be checked for gall bladder issues.

I speak from experience. Last time it hit I thought that I had bad indigestion, my partner came home to me crawling round the kitchen floor, saying I'd be fine! He gave me an hour and then dialled 111 and put me in the car. I couldn't get dressed, couldn't sit up to put a seat belt on, and by the time they admitted me was openly crying (oh the shame of it) and couldn't walk. They let me stay the night with some lovely floaty pain relief. I no longer have a gall bladder.