Erosive gastritis massive flare

[Debzeewestmids]

I was diagnosed with Gastritis 2 yrs ago,it never really gave me any problems apart from when I ate tomato ketchup or apples.At the time,the test was for abdominal bloating.

My first time it really bothered me was a few months ago when I decided to do time restricted eating on the 16.8 Intermittent diet.Little did I realise the harm it could cause.

After a few weeks,watching my diet,it righted itself.

Then last Monday night,went out for the 1st time in 16 mths,and without a moment's thought, I drank 2 pints of diet coke with a wedge of lime.

Next day,is when I became so ill.My stomach felt raw and so bloated and tight under my ribs.

My sister took me to a &e,I was also vomiting.

After doing loads of tests and giving me morphine for the pain,they sent me home.

The next night,I ended up there again,as I felt considerably worse.

I couldn't face food,the smell made me gag,and what I forced down,I bought back up.

They kept me in,did all blood tests again,was supposed to give me Endoscopy, but said because there was nothing sinister in my vomit,it was my Gastritis,and wasnt going to do one.

I was also dehydrated so was given some fluids.

They gave me an Omeprazole on drip and said i had to take 80mg everyday.

I have refused to do this, I have Hashimoto's and so stomach acid already low,tried to explain but they looked at me as If i were simple!

I also know i have pa aswell,which was diagnosed through a private test.

I had just got my b12 ampoules so i could start self injecting, but was trying to get my folate levels optimal so they would work properly, as per the b12 protocol.

I was also taking vit d &k2,but you have to eat it with good fat,so haven't been able to take that, because have to eat low fat,and even if I eat a little olive oil now,it sets me back even further

I'm on day 6 now,my stomachs so sore,I can't get comfortable, I haven't got the energy to walk.I can't face food still,I have to force myself and hardly eat any.

I have to sit upright at night time,and just not getting any sleep

I feel like I'm getting worse,and just don't know who to turn to,or what to do.

It is seriously affecting my mental state of mind also,I've never felt so ill in all my life

Please has anyone got any advice at all?

It would be most welcome

[fbirder]

"I had just got my b12 ampoules so i could start self injecting, but was trying to get my folate levels optimal so they would work properly, as per the b12 protocol."

I don't know what this 'B12 protocol' is, but it's totally wrong. If you have a B12 deficiency then that needs to be corrected before you start taking high dose folic acid. Doing folate first can make any nerve damage worse - ncbi.nlm.nih.gov/books/NBK1...

How do ypu know you have PA?

[Debzeewestmids in reply to fbirder]

It was the B12 wake up group on fb.

[fbirder in reply to Debzeewestmids]

I'll bet they told you to take stupidly high doses of folate as well?

There is more dangerous stuff on FB than the rest of the interwebs combined.

[Debzeewestmids in reply to fbirder]

Yes they did 800 mg but I dropped it to 5mg.But not taken anymore since Monday,Tuesday my flare up started.

[fbirder in reply to Debzeewestmids]

5 mg is their normal recommendation. That is way too much. Doctors are only allowed to prescribe such a high dose for four months without a blood test to see if levels are still too low.

[Debzeewestmids in reply to fbirder]

I had a test done with viapath for b12 serum,mma and hystomocene(?)and they said on that group I had it.I have nerve damage in my feet and pins and needles.

[fbirder in reply to Debzeewestmids]

What were the results?

There are over 80 possible causes of peripheral neuropathy. A B12 deficiency is just one.

[Chocolate41]

Hi I had excatly the same as you and ended up in A&EI thought I was having a heart attack as the pain was so severe.It woke me up at 2.30 am.I had a heart scan bloods taken all ok.I was told it was gastric so paid for a private Endoscopy.The waiting list for NHS was 18wks.No way could I wait until then.I was diagnosed with erosive gastritis.This all happened the beginning of March.

I was prescribed Omeprazole 40mg daily.

I had pain andfelt nausea all the time.

I am feeling better but still not right.I take Gaviscon during the day but no larger or wine for me.I am now into my fourth month and think it will take a long time to heal.I have B12 injections 12wkly with the GP but that’s not enough so I si inbetween.

It will take a long time for your stomach to heal eat a little and often.

I really hope you feel better soon.

[Debzeewestmids in reply to Chocolate41]

Thank you for your response.How long before you felt a slight improvement?I'm on 6 th day,and my rib cage feels so tight and my stomach is raw and bloated.i cant stomach any food,I'm forcing a bit down,but its unbearable.I have to sit up all night,cant sleep or get comfortable.

[Foggyme Administrator]

Debzeewestmids, I've had to delete the image of your test results to safeguard your identity. It contained it your date of birth, full name and other information sufficient to enable recognition and also identity theft.

Please can you re-post the results with personal identifying markers redacted?

Incidentally, I've no idea how a Facebook group managed to 'diagnose' Pernicious Anaemia from those results - and I shudder to think that any virtual community should attempt to do so! That is shockingly bad - to say the least!

Another couple of things…

About the so called 'B12 protocol' - there is no such thing - it’s something that has been made up by this Facebook group. It has no medical validity.

About the folic acid - fbirder is right about not taking folic acid before B12 deficiency is treated. This Facebook group often advises that 5mg folic acid must be taken daily when injecting B12 - this is utter nonsense. This amount of folic acid is only required in the presence of a proven deficiency, and then it is prescribed by a GP for no longer than three months. (Your test showed low folic acid rather than deficiency, and advised that this could be rectified with dietary changes (the correct treatment for your folic acid level).

Also…if you are taking 5 mg of folic acid daily, this could well be the reason you have so many symptoms and are feeling so ill. Here's what WebMed says about doses of folic acid over 1mg daily…

doses of folic acid greater than 1 mg daily might cause abdominal cramps, diarrhea, rash, sleep disorders, irritability, confusion, nausea, stomach upset, behavior changes, skin reactions, seizures, gas, excitability, and other side effects.

Over supplementing with high doses of folic acid can make you feel extremely unwell. If you already have gastritis, this will be made worse by the folic acid. If you are taking 5mg folic acid daily (or any folic acid), I suggest you stop. That is, stop taking any folic acid supplements at all (also for the reasons outlined by fbirder).

About the vitamin B12 injections. If you have never had a B12 injection before, please DO NOT attempt to self inject vitamin B12 at home. In rare cases, anaphylactic shock can occur and this requires immediate medical attention, up to and possibly including intubation and cardiopulmonary resuscitation. Nobody can tell you that you’re not that person who will suffer from this rare reaction, so please do not take the risk of self injecting. First injections of vitamin B12 should ALWAYS be given under direct medical supervision - at a location where resuscitation equipment is immediately available. I sincerely hope that the Facebook group advised you of this!

I'm also mindful that your test results did not show a B12 deficiency (whilst there was a small rise in MMA, this can have causes other than B12 deficiency - these need to be investigated by a medically qualified professional).

In short, you have been badly advised by the Facebook group and following their advice may be what’s making you feel so ill, and potentially worsening your medical condition.

Having seen your test results before I deleted them, it’s not clear that you have either PA or B12 deficiency. (It’s worth noting that the only test that can confirm PA is a positive intrinsic factor antibody test - but 40% - 60% of those with PA don’t have that). So, in short, I suggest you stop any folic acid tablets you are taking and do not self inject vitamin B12. Firstly because of the risk of anaphylactic shock and secondly, it’s not clear that you have B12 deficiency - and injecting vitamin B12 before investigation by a fully qualified medical practitioner can mask or skew the results of any investigations they wish to do - and prevent diagnosis of any underlying medical condition (B12 deficiency, or otherwise).

I'm so sorry that you're so unwell and have been badly advised. Stoping the folic acid may ease your current symptoms considerably and I also think that you need proper medical attention and investigation to get to the bottom of whatever is going on. Please please make an appointment with your GP, go through your symptoms with them, and ask them to investigate properly. It’s also worth considering if your hypothyroidism is well controlled (there’s is much overlap between the symptoms of that and the symptoms of B12 deficiency, which your blood tests show is unlikely).

I know getting good GP care is not always easy, especially in these currently difficult times. If you do have a GP who is utterly useless, then perhaps you could see a different GP or change surgeries.

Finally, please do not attempt to treat yourself on the basis of advice from a Facebook group. We have had many occurrences here of people arriving from Facebook groups and being quite unwell after following advice given there - especially from over supplementation with folic acid.

Please take care, I hope you improve soon, and please let us know how you get on.

[Debzeewestmids in reply to Foggyme]

Thank you so much for that.Im definitely a fb victim,and paying for it now.So it also seems I should take the Omeprazole for a short time anyway?Nothing else is helping me.

[Foggyme Administrator in reply to Debzeewestmids]

Yes, It’s a good idea to take the Omeprazole.

I had something similar (acute on chronic gastritis plus gastric ulcers). I took a PPI for six weeks to aid healing - it worked and I then stopped the PPI's.

Just a thought…have you been tested for helicobacter pylori - HP (it’s a bacterial infection that attacks the stomach and can cause gastritis)? Your GP can test you at the surgery (it’s a fasting breath test - very simple to do). HP is a major curse of gastritis, is very common, and is cured by taking a course of two (sometimes three) antibiotics. Test two weeks after the course to check for eradication. I had to have two consecutive courses to kill the little monkeys.

If your gastric issues continue your GP might like to refer you to gastroenterology for investigation (and they'll likely to an endoscopy if you're still suffering symptoms). If symptoms are severe, cause blood stained vomit or significant weight loss, there's a two week referral pathway for endoscopy - something to consider if things don’t improve? I was put on this pathway after D and V for several weeks and nearly two stone weight loss. Got things moving very quickly.

Good luck with it all and please let us know how you get on. Post again if you need and further support - lovely knowledgable members here who are always willing to help.

[Debzeewestmids in reply to Foggyme]

Thank you so much.When I was originally diagnosed with Gastritis via Endoscopy, they did biopsy and said I didnt have it.

What dose of Omeprazole were you on,and how long before any improvement?

I find the posts on here very helpful and reassuring!

[Foggyme Administrator in reply to Debzeewestmids]

I was on lansoprazole (another PPI) - 60mg for six weeks (gastritis was very severe). Can’t remember how long it took to improve - it was ages ago now. I took the lansoprazole for six weeks - the gastritis had settled by the time I stopped.

Pleased you find the forum helpful x

[Summerlove]

Hi DebzeeI had private messaged you as I have had so many similar symptoms. I started my thyroid journey with costacondritis fortunately I don’t get it very often now. What I do get is the gastritis flares. I get constant nausea feeling of fullness and go off my food. I don’t take antacids regularly but when it’s really bad I take Nexium. 4 years ago I had a severe episode of gastritis and couldn’t eat I lost 2 stone within short space of time. I felt very unwell. Due to weight loss I was over medicated on my thyroxine and that made matters worse.

Agree with foggyme administrator it may well be the folic acid that has caused this. I also have low folate (medichecks) I took a small amount of folic acid and it flared up the gastritis. Better to try to eat folic rich foods first and see how you get on. Again I would not be injecting B12 it will all be too much for you to cope with. Folic acid is a double edged sword it can make you feel great initially but can also cause stomach problems and mental agitation.

What you need to do now is heal your stomach bland meals, chicken and fish little bit of rice & veg. Chicken soups. Natural yoghurt if you have dairy. I know you don’t like the omoperasole and I understand why but you may well need a short course to heal the inflammation. Gaviscon may help too, but eventually you can wean yourself off when you get better. I totally relate to your current situation and how unwell you feel. Hope you get better soon

[Debzeewestmids in reply to Summerlove]

I have replied,thank you!

[Frodo]

Some years ago when I had similar symptoms to you, I bought Slippery Elm powder (mixed it with water to make a small amount of thin gruel) and this was the only thing that helped, along with a very plain, bland diet (I still eat very plain foods and no gluten). I also found that ordinary tap water would set off the burning discomfort, and began to drink bottled or filtered water only.

[Debzeewestmids in reply to Frodo]

Thank you for your valuable advice.

[Hil101 in reply to Frodo]

I also have (endoscopy diagnosed) autoimmune gastritis and slippery elm in water, a few times a day, soothes a flare-up better than anything else for me. Best of luck and hope you feel better soon

[Showgem]

When I was first diagnosed with PA I was trying to find out more about the condition as I had never even heard of it before. I came across the Facebook group and as they seemed to know what they were talking about I sort of followed their advice. My folic acid was very low in the range so I bought some from the supermarket and was taking 4 a day so much less then their recommended dose. When my stomach problems worsened I was told I was taking the wrong sort of folate etc so I did some more research and found this site and dropped my dose to one supermarket dose a day, now every other day.

Whenever you question anything on the Facebook site you get muted and if you do it again or reply to someone's query without giving out the so called b12 protocol you get a warning. I unfollowed the group and came here instead so my advice would be for you to do the same.

I take vit D (prescribed by my GP) I also take K2 and magnesium, this is because I was deficient in vit D and have osteoporosis. Because vit D is fat soluble you should take it with some form of fat for better absorption but there is some fat in many none fatty foods so as long as you take these vitamins with a little food you should absorb some.

[Debzeewestmids in reply to Showgem]

Very valid point,I was taking vit d,k2 and magnesium up until my flare.When I took the vit d orally,it was hurting my stomach,so I started opening them up and putting under my tongue.I havent taken them because,I have to eat low fat at the moment,so didnt think they'd work.But having said that,in the past when I've taken them with tiny bit of fat,theyve worked,it still upped my levels.I will start them again.Thank you!