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gastritis.. AGAIN

Jujujojo64 profile image
20 Replies

I am suffering from my second bout of gastritis type pain. Blood tests, ultrasound on gallbladder, spleen, kidneys, pancreas and stool hpylori tests have all come back clear. The last bout of it was due to ibuprofen which I took while I had covid. At that time the Gp put me on omeorazole 40mg daily . I also researched what to take that may help and I started taking Manuka honey 500 mgo in warm water three times a day. It helped and eventually the pain cleared.

Anyway, fast forward to now, I experienced very traumatic anxiety for over 5 weeks due to my daughter having a suspected sarcoma in her womb. It was truly awful. Thankfully she got the all clear, but a few days before that I started to feel a niggly burning pain under my right rib and centre of upper abdomen. It progressively got worse and after contacting my gp he sent me for all the tests. As mentioned all were clear. I’d say it’s Very very slightly better after a month on 40mg omepraxole but definitely not gone. I’ve spoken to him since and he’s said to drop from 40mg omeorazole to 20mg which I have been doing , but some days are worse than others. I also have a burning type pain in my right side/back/flank, and IBS type symptoms, I’m eating bland foods and drinking lots of water. This time the Manuka honey isn’t working. I am so fed up with this pain in my RUQ, I just want to feel normal. I actually think the omeprazole causes me nausea but I have to have something to protect my tummy from citalopram and Apixaban. Not sure what else I can have instead? I’m also taking Gaviscon as the dr says it will help but it’s not really. Altogether it’s gone on for almost 7 weeks now. The doctor said if it’s still the same in 6 weeks I will need a camera down. I’m so scared of what it could be. Has anyone else had it for so long, coming and going each day? Has anyone had it caused by severe anxiety? I’m convinced it’s linked. Any advise of what I can take and what’s worked for you will be very much appreciated. Just feeling so down with it all. It’s a vicious circle as the anxiety from the worry of it is making things worse I’m sure.

x

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Sleepybunny profile image
Sleepybunny

Hi,

Sorry to hear that you're been struggling with pain.

"Blood tests, ultrasound on gallbladder, spleen, kidneys, pancreas and stool hpylori tests have all come back clear."

Have you checked the results of blood tests yourself?

Some forum members are told everything is normal by their doctors and then find results that are above or below range when they check.

Some forum members have been diagnosed with high stomach acid levels and put on acid suppressing drugs such as omeprazole and then find out later that they actually have low stomach acid levels ....the symptoms are very similar. PPI drugs used for suppressing acid have been associated with low B12 levels in some studies.

Have you had your B12 levels checked?

Forum members here often report folate, iron, Vit D deficiencies as well.

Pernicious anaemia can lead to a type of gastritis called autoimmune metaplastic atrophic gastritis/AMAG.

Coeliac disease can also lead to gastritis.

Both are auto immune conditions which can lead to B12 deficiency.

I have read that results of stool tests for H Pylori can be affected if patient was taking antibiotics or acid suppressants. Were you on either of these when you had your stool test?

Link below explains that patients should have a two week washout period before testing for H pylori. My understanding is that this means patients should be off PPI drugs for two weeks.

nice.org.uk/guidance/qs96/c...

There are other causes of gastritis including internal parasites and some drugs/medicines.

Have you been referred to a gastro enterologist?

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

If PA is a possibility, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

NICE guidelines - diagnosis and treatment Coeliac disease

nice.org.uk/guidance/ng20

More info on Coeliac UK website

coeliac.org.uk/home/

Unhappy with treatment for B12 deficiency?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

If you suspect or have B12 deficiency then I would urge you to find out what's in the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board.

If you can't find them online or by searching forum posts here, best bet is to submit a FOI (Freedom of Information) request to your ICB/Health Board asking which B12 deficiency guidelines are used locally and for a copy of or link to them.

Wrong Ideas

Many forum members have met doctors and health professionals with wrong ideas about PA and B12 deficiency.

For example, some doctors think that patients cannot have B12 deficiency if their serum B12 result is within normal range. From personal experience, I can tell you it is possible to have severe B12 deficiency symptoms with a normal range result.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

GUTS UK is a charity dealing with gut conditions

gutscharity.org.uk/

There's a lot more information I could pass on about B12 deficiency so let me know if you want me to post more.

I'm not medically trained, just some one who suffered for years from unrecognised and untreated B12 deficiency.

Jujujojo64 profile image
Jujujojo64 in reply toSleepybunny

hi,

Thank you for your reply. I am member of My Medical Records which is linked to my hospital and gp surgery so all test results are available for me to see. Everything is in the normal range. My full blood count would show up signs of a b12 deficiency. I did stop the omeprazole for 7 days before my hpylori test as my dr told me to, maybe it should have been for longer?. Im so convinced mine is ‘stress related gastritis’ as at the time of the high anxiety everyday for 5 weeks I was physically shaking inside and out, I was emotional and yet trying to be strong and hiding my fear from my daughter as I did not want her to worry any more than she was, it was exhausting, physically and more so mentally. I hadn’t been on any new meds or taken anything like ibuprofen that may have triggered it. I just worry that it’s lasting so long, is this normal? Also does it cause back ache and achy muscles throughout my back? Or is that anxiety too? How long is too long for gastritis? I guess the worry I’m now having over the pain is just prolonging it?. Once again thanks for your reply and all the info links 😊

Sleepybunny profile image
Sleepybunny in reply toJujujojo64

I'm so glad that your daughter had the all clear and hope that your anxiety has subsided.

NHS link about gastritis

nhs.uk/conditions/gastritis/

Might be worth posting your results for B12, folate, ferritin and other iron tests, vitamin D and full blood count on the forum. Take care to remove any details that might identify you or any health professionals if you do.

A full blood count won't necessarily show up signs of B12 deficiency.

I'm assuming you mean if a full blood count shows signs of enlarged red blood cells (macrocytosis) then that suggests possible B12 deficiency.

Many people with B12 deficiency do not get enlarged red blood cells.

Low iron levels can lead to smaller red blood cells (microcytosis).

In a person with low iron and low B12, full blood count results may show normal sized red blood cells as effects of low iron will mask effects of low B12.

Things get more complex in a person with B12, folate and iron deficiencies.

Low folate can also lead to enlarged red blood cells which could be masked by low iron.

Have you looked for patterns in blood test results? Results that are increasing or decreasing over time can be significant even if still within normal range.

You mention some symptoms that are consistent with B12 deficiency eg

back ache

achy muscles

IBS symptoms

Do you have any other symptoms consistent with B12 deficiency?

B12 deficiency can have a profound effect on mental health. Many forum members report anxiety.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.

b12deficiency.info/your-ser...

I developed many neurological symptoms including dementia symptoms with serum B12 results well within range. I had one below range result in past.

It's possible to have Functional B12 deficiency where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

Do you have any auto immune conditions or is there a history of auto immune conditions in your family?

If yes then I would expect your GP to investigate the possibility of auto immune gastritis.

I can post more info if you'd like me to.

susieflooz profile image
susieflooz in reply toJujujojo64

Hello jujujojo,

Digressing slightly, I wondered if you have a link to share regarding what you said about "My Medical Records which is linked to my hospital and gp surgery" in your post above?

Jujujojo64 profile image
Jujujojo64 in reply tosusieflooz

hi, it’s an NHS website called ‘my medical records. You sign up and it links you to your hospital and gp surgery. All documents, tests , results and appointments are available to view on there. 😊

Screen shot of website
helvella profile image
helvella in reply toJujujojo64

In case anyone is interested:

How can I sign up?

If you are a patient at University Hospital Southampton you find out more about My Medical Record here.

My Medical Record is also available for patients at

Hampshire Hospital NHS FT

Portsmouth Hospitals University NHS Trust

Isle of Wight NHS Trust

Gloucestershire Hospitals NHS FT

Royal Cornwall Hospitals NHS Trust

Dartford & Gravesham NHS Trust

Royal United Hospitals Bath NHS FT

St Helens & Knowsley Teaching Hospitals NHS Trust

Aintree University Hospital NHS FT (now Liverpool University Hospitals)

Southport & Ormskirk Hospital NHS Trust

Royal Liverpool & Broadgreen University Hospitals NHS Trust (now Liverpool Uni)

Countess of Chester Hospital NHS FT

Warrington & Halton Hospitals NHS FT

Clatterbridge Cancer Centre NHS FT

Liverpool Women’s NHS FT

uhsdigital.co.uk/digital-pa...

Purplegirl2 profile image
Purplegirl2

do you have anti-parietal cell antibodies? have you had an endoscopy to look at your esophagus and stomach? tbh I'd recommend seeing a gastroenterologist if you can instead of relying on a GP (if you haven't already).

Orchard33 profile image
Orchard33

I have a bad reaction to omeprazole and it didn't do the job. So I came off it and went back on to an H-blocker. There are several. They are much gentler for me and much more effective. For some reason they seem to have fallen out of fashion with GPs.

Dilly_blue profile image
Dilly_blue

I have gastritis (sometimes episodes of severe gastritis lasting months (it is exhausting and truly awful). I have anti parietal cell antibodies. Definitely worth exploring it further with your health professionals and taking whatever tests to get to the bottom of it, and also to rule out nasty things.

In the meantime, it might be worth altering your diet further (temporarily), to try and reduce the pain… as an aside, high levels of stress / anxiety can worsen problems with the immune system / autoimmunity, resulting in inflammation. I wonder whether you have a very inflammatory state in your gastric system at the moment (triggered by a number of factors, including extreme stress?).

Things you can do to reduce this in the short term (reducing inflammation) include altering your diet temporarily to:

- increase intake of high antioxidant-type foods that reduce inflammation (dark coloured berries are very good, I buy frozen blueberries), and things like turmeric (I have a really nice herbal tea with turmeric in called ‘feel new’ by pukka); and

- reduce intake of things that promote inflammation, so avoid coffee, avoid fatty food, avoid spicy food, avoid alcohol, avoid anything fizzy (fizzy water / soft drinks) avoid all gluten and grains etc (for up to a week, and then review things). You could also avoid dairy (for a week) to see if it helps. High levels of insulin (or regular bursts of insulin) in blood can also trigger inflammation, so avoid snacks (just stick to meals), and avoid things with high glycaemic index (which causes a blood sugar spike and corresponding insulin spike (there’s a good book by Jesse Inchauspe about glucose / insulin). Acetic acid (vinegar, eg apple cider vinegar and fermented /pickled foods) can also help reduce insulin and as a result reduce inflammation. Avoid ibuprofen if you can (but if you can’t, take it with food, never on its own).

So (in summary) try quite a restrictive diet for a week (or two), then you should be able to introduce things back in, when the inflammation has calmed down. I had a terrible time with gastritis from end of November to late January - so I tried changing my diet radically for a week or so, and the gastritis went away. I am currently on a normal diet, and all is good.

The temporary diet for me consisted of a really large bowl of blueberries for breakfast, with some whole almonds, then salads or steamed veg for my other meals, with lean protein (I’m vegetarian, so for me it was nuts or chickpeas, occasionally tofu). I was using vinegar-based dressings (for the acetic acid), and having things like celery or pickled veg before meals (to reduce insulin spike). With a big bowl of blueberries (and some almonds) as dessert. I was drinking maybe 5 cups of ‘feel new’ tea each day.

Do also make sure you also follow things up with your doctor, and get more screening tests done. Good luck with it all and hope you feel better soon.

Jujujojo64 profile image
Jujujojo64 in reply toDilly_blue

thank you so much for that info, especially with what foods to eat, I’m a lover of all things with nuts and seeds, maybe I’m having too much? I generally eat very healthily too. I will certainly try what you have suggested. I will let you know how it goes.

Thank you

Zods profile image
Zods

Hi,

I have been in the same boat as you. Had all the tests had blood test and stool sample taken for H.Pylori and all came back negative after persistence I had a endoscopy and found that in fact I did have h.pylori. Was placed on antibiotics and then a month later another set of antibiotics. Still felt rubbish then turned to probiotics. I’ve tried probiotics in the past and have made my stomach worse. Then I tried Symprove (this is not an ad, I’m just reporting what worked for me) it’s really helped my stomach and I feel almost normal again. I told my Gastroenterologist and he said it will be a mix of the antibiotics and then replacing with good bacteria. Only trouble it’s quite expensive. My mum has also tried it and it has helped her too. They do an introductory offer if you are referred which means your first 3 months are ½ price. Again I’m not advertising this at all just letting you know what’s worked for me xx

Casasue profile image
Casasue

hi i have same issues 🙃 its garitis slow transit and b12 different the slow transit upsets the bile duct

JHEW0836 profile image
JHEW0836

I have all sorts of GI issues as well with my B12 deficiency and have a lot of the symptoms you describe with all GI tests coming back normal. I’ve had an upper endoscopy, CT scan of abdomen, h pylori test, gastric emptying test, and barium swallow test (I thought maybe it was a hiatal hernia). All normal. I also had a number of very stressful events occur over a period of several months that definitely triggered the symptoms. I have found that all the GI specialist wants to do is throw a PPI at you and that’s it. In my case, the PPI caused me to completely lose my appetite and become nauseated. I lost 10 pounds in 2 months and did not weigh much to begin with. It also didn’t resolve my symptoms of reflux. Gaviscon also causes me to feel nauseated so I really think my problem is not enough stomach acid vs too much stomach acid. The GI specialists don’t seem to believe in this theory, however I am convinced it’s low stomach acid for me.

JHEW0836 profile image
JHEW0836

I forgot to add that I don’t take anything for my GI issues now except I drink a lot of ginger tea with honey. I have a cup every night after dinner to help digest my food. It has really helped me and I feel better than I did a year ago and have gained most of my weight back. Im also just starting treatment for my B12 deficiency and feel better when I get an injection. I eat smaller meals and don’t eat 3-4 hours before bed. I sleep with my head elevated as well.

Jujujojo64 profile image
Jujujojo64 in reply toJHEW0836

hi,

Thanks for your reply. Good to hear you’ve found a cause now. I’m trying all sorts of things, On Friday I brought some Nexium, I’m so fed up with the omeprazole as I’m sure it was giving me nausea, so I thought I’d give these a try, along with double strength gaviscon. Saturday I felt better but today the vague weird burning feeling in my upper tummy is back. ( nexium gives you abdomen pains apparently? So maybe that’s why I feel it’s not working ? ) I’m eating ok, no lack of appetite , but I’m struggling with what to actually eat, I’m fed up of all the bland stuff and when I’m hungry the pain seems to be worse, what can I grab between meals that won’t agitate my tummy? I’m eating bananas and yoghurt bars but I’ve no idea if they are ok?. I’m always laying down prodding and pushing my tummy to try to pin point the exact area of pain but all I can confirm is it’s upper abdomen, right across both sides now . I’m so fed up of tablets, trying new routines to try to heal my tummy and it’s one step forward and ten back😩. I’ve brought a home test kit for hpylori so I will try that but I have to stop the nexium for two weeks prior! Do you get fatigue too? I can’t keep my eyes open in the afternoons even though my actual body doesn’t feel tired. It’s all so weird and frustrating, not to mention depressing 😢 anxiety and stress are truly awful.

JHEW0836 profile image
JHEW0836

I can really relate to your struggles with digestive issues. I totally understand what you mean by not knowing what to eat and tired of eating the same bland food. If I’m having a bad day with nausea, I will eat food that is easy to digest and I will try to wait 3 hours between meals to give my stomach time to digest. I eat a lot of bananas, applesauce, rice, cream of rice, cream of wheat, eggs, toast, pretzels. I try to eat those foods for breakfast and lunch and then I will eat pretty much whatever I want for dinner (but watching portion size) with ginger tea and honey after dinner. I definitely tire easily and some days I’m more fatigued than others. I’m seeing a hematologist on May 8th for my b12 deficiency as I think that is causing a lot of my issues. I can’t seem to get a doctor to give me more frequent injections so I’m hoping the hematologist will listen to me.

Hang in there, try to keep your stress levels down. My stomach is the first thing that suffers when I’m stressed or anxious. It’s a vicious cycle though when you're experiencing health issues from anxiety which in turn creates more anxiety. I think our tummies will settle down eventually but it will take some time. I did find it odd though when you said you had problems after taking ibuprofen when you had COVID. A lot of my stomach issues started after having COVID about a year and a half ago.

Jujujojo64 profile image
Jujujojo64 in reply toJHEW0836

hi,

Yes same here, sorry my mistake it was beechams flu capsules that I took 2 four times a day, for four days. They have aspirin in so the Dr suggested it was them that caused the first bout.

Sleepybunny profile image
Sleepybunny

Thought you might be interested in this link about hypochlorydia, where levels of stomach acid are low.

drmyhill.co.uk/wiki/Hypochl...

Achlorydia is the term for no stomach acid.

Low or high stomach acid should be diagnosed by a doctor.

This next link mentions a simple test people can do at home to get an idea of whether or not their stomach acid levels might be low.

avogel.co.uk/health/digesti...

Low stomach acid and high stomach acid have similar symptoms and it's my impression that UK GPs don't always consider the possibility of low stomach acid.

Maybe you could ask your GP if any of your symptoms could be due to low stomach acid.

Littlelodge123 profile image
Littlelodge123

This sounds very much like what I had and it was found to be SIBO. This can be tested for via a breath test. If your gastroscopy is negative I suggest you ask for a SIBO test. People with PA are susceptible due to a lack of gastric acid (in which case your PPI your doctor is giving you will be completely useless).

Justsick profile image
Justsick

Oh Dear One.. I feel your pain.. literally.. I had the same experience when I was diagnosed with lupus.. the ER Dr put me on a super high dose of Prednisone.. the pain was gone in an hour.. I took ibuprofen because I thought it would help my tummy.. it made the gastritis kick back in.. thank God for Prednisone.. I know it's hard on the body but I really don't care.. it took the horrific pain away.. knock on wood.. it's been 5 years and it hasn't came back.. little pains once in awhile but nothing like the first time.. I take Prednisone about 3 times a year.. maybe this will help.. God bless you and I pray your pain goes away.. Sending you much Love and Light beautiful Soul 🙏

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