Had endoscopy with biopsy now I'm confused

[Iheartb12]

I've had major stomach issues forever. I'll spare you the detail, but it's changed and gotten significantly worse since I started b12 injections 2 years ago. I have found a few things that help but nothing cured.

The issues have turned into just straight up pain. Like stabbing, throbbing, wrapping around to my back and shooting nerve pain in my abdomen. All on upper left side with nerve pain shooting down abdomen. Plus the worst acid reflux. The pain comes in flares which can last a week to 2 months. I'm coming off the worst and longest one ever.

So I had the endoscopy and biopsies and everything came back normal. Showed mild irritation where stomach and small intestine meet. That's it! Told me to take prescription ppi (havent taken yet)

I was dx with PA 2 years ago via intrinsic factor antibody, long term megloblastic anemia, neuro symptoms and low normal b12 level. I have never had antibody test for paretal cells. I feel so much better in most ways after 2 yrs injecting but this stomach thing is really devastating my life, affecting every aspect.

Anyway, why did my biopsy come back normal?? Doesn't PA mean autoimmune gastritis?

I was at the ER a few weeks ago for severe stomach pain and they saw colitis and gastritis on the CT scan, but nothing showed on endoscopy?

[Jillymo]

Hi,

I am not medically trained but have gone down the same route. Colitis is a bowel condition hence why it wasn't seen on the endoscopy. What has been seen on the CT scan shows further investigation is needed ie.... a colonoscopy to take a closer look at what is going on. If it were me I would be requesting a referral to a gastrologist if not already under the care of one.

[jointpain]

Try going gluten free, and not just a week, for a year at least. Gluten was the cause of my problems, which were much the same as yours. Now 7 years without gluten I can eat anything except gluten, and haven't had an endoscopy or colonoscopy in 7 years. Hope you find your salvation. x

[Nackapan in reply to jointpain]

I agree.My mum has tried all sorts over many years .

Her bowel damaged by radiotherapy when 38 ,saved her life but left her with severe IBS symptoms.

Shex 95 now .

Many years if elimination trials.

She has low roughage

White bread .(went back on gluten)

Remains diary free

Caffeine free

Alcohol free

Spice free

My daughter had hrko from a hospital dietician who supported her trials with fodmap ax a guide.

She remains

Diary free

Gluten Free

Alcohol free

Red meat Free

Fructose

Has introduced eggs back and chicken and fish back

Taken many years but with good outcomes abd relief in symtons .

Her endoscopy was also clear with some Inflamation though .

Hers was more due to mobility of the digestion process .

Hooe you find a way Iheartb12 too.

[JesusMercy60]

well I'm sorry your stomach is bad like that. I had the same pains and all my left side and back as well. It got better with taking gluten away, but I do eat crackers. the only thing that took the pain away was starting the homemade kefir drink that a lot of the members here use. now I have to drink it everyday I did skip a day and the stomach pain came right back that day. so I dont skip. I too have the gastris and PA. have you ever tried the kefir?

[JesusMercy60]

oh yes and I have to take betaine hci at each meal. that is also what I learned on this forum with auto immune gastris we have no hydrocloric acid to digest our food and our bacteria is the bad bacteria without the correct stomach acid to fight off the bad. it has helped me a lot. I get it from amazon from the now company.

[LynetteinUSA in reply to JesusMercy60]

Can you tell me what dosage of hcl you take? Thanks!

[JesusMercy60 in reply to LynetteinUSA]

hello Lynette, the dosage says to take 2 tablets at each meal and do not take on empty stomach. and do not take any water after you swallow and eat food for about an hour so it can work on the digestion.

[LynetteinUSA in reply to JesusMercy60]

Thanks for your reply. Does it say what strength the tablets are, like mgs or mcgs?

[JesusMercy60 in reply to LynetteinUSA]

yes one capsule is 648 mgs each

[LynetteinUSA in reply to JesusMercy60]

Thank you again! I tried HCL a few years ago but stopped because it wasn't under a doctor's care (none of my docs believe in it). I also found out that it was very important to eat protein when taking it.

[Raven_Cat]

I agree with jointpain & Nackpan for trying a gluten free diet and it needs to be 100% avoiding even a trace of gluten that occurs in 95% of processed food. Unless it states "Gluten Free", don't eat it. I first suspected I had a gluten issue 28 years ago because of symptoms, got tested for antibody's which was negative so no further investigation was done.

I have mostly been gluten free over the last 28 years occasionally jumping off the wagon, becoming ill again, then getting back up again and health mysteriously improving.

Fast forward to 5 months ago I got seriously ill with megoblastic anaemia, undetectable b12 both active and serum and parietal cell antibody positive. Booked in for a scope to confirm PA and discussed with gastrologist the possibility of celiac disease and my history. I was asked to go on a gluten diet for two months prior to scope to check this out.

I ate like a pig eating all that I denied myself over the years, surprised I didn't put on weight. The good news is that in this day and age there are so many good gluten free alternatives (not so 28 years ago) that it is easily possible to go gluten free, I found that what I had been missing over the years was nothing other than an inconvenience sourcing GF products.

My scope confirmed PA/autoimmune gastritis but not Celiac, regardless I have gone gluten free again because what I have learnt about my digestive issues which have been around probably since a teenager is that I am mostly symptom free when removing gluten from my diet.

Celiac disease is well understood, PA not so, it is worthwhile attempting to reflect on what does and doesn't work for you regardless what any doctor or person says. Autoimmune gastritis is a slow progressing disease that can remain symptomless for decades and often anaemia is it's late stage.

It appears going gluten free works for some of us, I think despite the inconvenience it causes the potential of better health is priceless.

Good luck with sorting out your ongoing symptoms, I hope you find some relief soon.

[Nackapan]

Has your digestion also improved with B12 injections and ? Folate .

My daughter also had megobolastic anaemia and a severely low b12 and folate .

It had caused POTS and as in hospital in a cardiac ward was the start of properly being diagnosed .

Awful it had been missed with yesrs of other tests, illness.