I’ve just had my first ever hospital procedure with sedation - A colonoscopy and gastroscopy (top and tail) to check why I might not be absorbing B12 and iron.
I’ve been terrified about it for so long and it was a complete non-event. The hospital staff were so lovely and the prep wasn’t even that bad.
The dr came and saw me just before I left to tell me there was no signs of gastritis, cancer, coeliac or anything of note besides a few polyps that he’s taken to biopsy. I haven’t gotten the official report so I don’t know what else he checked.
So…what now? Not that I wanted gastritis but I feel like I’ve been searching for answers and just keep getting closed doors that, while narrowing the search, are frustrating.
Have many of you with official PA diagnoses had scopes with no evidence of damage? is that a thing?
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PlatypusProfit8077
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Not with an 'official 'PA diagnosis ' despite a severe low serum b12 result and megobolastic anaemia. So noted as presumed PA as IFAB only picks up about 40-50% of those with PA .
My daughter also had a 'clear ' endoscopy.
She is only able to eat when it's;
Gluten Free
Diary free
Fructose free
Read meat free
Took years to work this out .
She has recently tolerated egg in small amounts and fish.
And trying to reintroduce other foods .
A good result your tests showed no cancer ect. Ruling things out
They are very good for this.
I understand you want answers .
I was also mightily received my first brain MRI was deemed clear.
And second a year later showed less inflammation.
But it leaves you with more questions to find a cause.
I've still not found an answer just the treatment/ maintenence
B12 the only thing that has helped me get most of me back.
Was on no other meds prior to illness.
Nothing else found to date. 6 years in .
Get all the tests possible.
I would then
Work with a hospital dietician.
Or use fodmap as a start .
Undiagnosed b12 def/ PA csn cause damage as we know . So hopefully as young you will heal aa much ax possible over time with B12 and supplements.
Keep a food diary .
Hope yo get answers aad find a way to improve your health .
Thanks lovely lady. I’ve tried food diaries but there’s really no rhyme or reason for flare ups, and I’ve noticed I’ve had way less of them since being on EOD injections: no intermittent diarrhoea and no nausea/bloating etc.
Is it wrong to just want them to write Pernicious Anaemia on my file and be done with it? I’m just tired.
I had a roller coaster ride with my health issues for years - every test - every blood test and nothing found - I am of the firm opinion that if nothing can be found it can only be a hormonal deficiency.
I have had these procedures - and a couple of polyps removed and some biopsies done. Benign.
Yes -lovely staff and no pain. Procedure explained well.
"Flattened mucosal pattern at D1 and D2 (duodenum)" and "patchy gastric metaplasia" were noted from camera investigations. Coeliac suspected -but ruled out by biopsy results.
"Not that I wanted gastritis but I feel like I’ve been searching for answers and just keep getting closed doors that, while narrowing the search, are frustrating."
I think I understand some of your frustration.
I don't have an official PA diagnosis and suspect that in my case it might be a genetic issue with how B12 is metabolised.
The other thought I had is that I had multiple causes of B12 deficiency but was left so many years without a diagnosis and treatment that I have permanent damage that needs constant B12 to keep my body functioning.
One thing I tried to get doctors to rule out was Lyme disease which can be associated with B12 deficiency but I don't think it's common in Australia.
Have you lived or stayed in a part of the world where lyme is endemic?
I had years of gastric issues and was never offered the chance to see a gastroenterologist.
I cut out gluten even though coeliac tests were negative and that helped me.
Thanks Sleepybunny, luckily Lyme disease is not a thing here (although I feel like Australian fauna more than makes up for this lack!) and I haven’t travelled overseas so I’ll happily cross that one off my list. Seems strange to say Australia doesn’t have something dangerous haha.
I’m just having a sad day I think, I thought I would bounce back after the sedation (since it was a twilight one) and I’ve really tanked/hit the wall with a lot of b12 symptoms coming back for the first time in months. Just feeling a bit sorry for myself and wanting answers.
I don’t have any autoimmune problems, and don’t think I have any severe gastritis, a lot of my malabsorption was due to taking PPIs too long, plus added stress, reducing my stomach acid to a level where I probably had Hypochlorhydria , which caused some bad bacteria to upset my gut. I’m hoping, with the help of a nutritionist, and healthy eating, that my gut will get back to normal.
I don't have an official diagnosis of PA. I am positive though I have it based on changing from sleeping 16 hours a day to being full of energy after supplementing. With my last colonoscopy, it was like yours- nothing of note but a few polyps removed.
Thanks, what do you do medically? Do you have much support from doctors?
I manage my injections at home and my GP is quite good though would like me to scale back from EOD. Jokes on her because I’ve reacted really badly to the anaesthetics/sedatives. I feel like I’ve gone back 3 months - more symptoms than I’ve had in ages. So I’m doing daily or twice daily to help combat that
My doctor is very supportive. Although I don't really need support. I live in Victoria (Canada). Injectable B12 is available over the counter here with no prescription. My husband gives me my injections.
Different people seem to need B12 on very different schedules. I would trust yourself and how you are feeling to determine your frequency. Many doctors in the UK seem to go to every 3 months and I don't think most people do well with that. You live in your body and hence are more aware of how you are feeling than your doctor is.
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Confusing biopsy results
Are these symptoms from B12 deficiency?
Three years down the road. Question re gut health 
