hi, I’m in the midst of investigating why my B12 deficiency has occurred- whether it’s h.pylori, AIG, PA etc
And I’ve managed to scare myself silly about AIG and its connections with cancer etc. I’m not sure why this is scarier than PA.
I think I need to stop researching, even though it’s been scientific journals/articles etc.
Does anyone else do this?
I am sorry to read PlatypusProfit8077,
Unfortunately, I cannot reply for everybody only myself. Some people have a voracity for reading medical literature and research. You are on the start of your journey and feeling physically awful. Lots of people want answers so read a plethora of information.
I am a real terror asking, Well, who wrote it ? What qualifications do they have ? How many people were involved in the study ? This stems from childhood when I was told, They say that ………I would ask but who are They ? Some of the wisest people state, The more I learn the less I realise I know. In a lecture several weeks ago, a Professor gave their definition of an Expert - Someone who has made every single mistake.
The best approach is to have balance and to be objective. Despite illness, we can still have a bit of fun and try not lose our a sense of humour. So, as a share, I am not long back from sorting out a new mobile phone contract. I convinced the person serving me to draw a particular multinational corporation’s icon before I signed the paperwork. They did it and I am still chuckling about it.
PA/B12D is a journey. We meet many people along the way. There are twists and turns, high points and low points. The community is here to support each other at every opportunity and no matter how hard it gets.
😘
Thank you, you’re right about this being a journey - it’s almost a Tolkienian worthy tale!
It’s hard not to get obsessive about it - it’s my health and I want my life back. It’s hard to see the good parts at the moment when I’m barely hanging on.
Yes, Platypus, it is rather like Tolkien. It does take phenomenal effort to hang in there. It is really okay to moan, cry, scream or to swear about how rubbish and debilitating this illness can be.
At the moment, you wish to understand the illness and to find root cause. Whilst juggling home, your relationship with your husband, work and doctors’ appointments. It takes a bit of time to get to grips with knowing about PA/B12D. Your personalised symptoms diary will show you patterns of how PA/B12D presents in you. It is key in finding your root cause.
Best wishes
Very much so. Doctors told me not to google symptoms and I understand what they were getting at - there is a lot of mis and disinformation out there and even if the information is good, when you are coming at it from a paranoid or fearful frame of mind, you jump to the most negative possible diagnosis first - a natural human tendency to want to be "prepared for the worst". I have a catalog of all the crazy suspicions and alternate diagnosis I had about what might be happening to me. Some of them were never fully explained but none of the really horrible ones came true, thankfully. But I can't think of anything I could have said to myself in that state of mind that would have helped to be honest - nobody had all the answers other than reassurances from the forum.
But it was googling for information that allowed me to spot my misdiagnosis, the ignorance of the doctors involved and find the best (or at least an adequate) course of treatment. You could say I completely failed to stop researching as I am enrolled in a multi-year postgraduate program in nutrition and currently attending a short course on understanding and interpreting nutrition research.
I’m so glad you’re better now Technoid!
My MIL is an expert in conspiracy theories and always warning about “doing internet research” when the only place she finds out her own facts is on very very weird corners of the net. She didn’t appreciate my peer-reviewed research during Covid.
I think I compared this current stage of my life to being like a detective in a murder mystery - I have a cork board with papers and string going everywhere, at least in my head. It’s exhausting.
I’ve stuck to the more reliable paths of research though, I think. Still scary though!
I research a lot but always in the context of finding the next step that I need to take when I know I'm missing something. And to generally increase my knowledge of my body and it's workings. It's worked so far and I find it fascinating. I never look for worst case scenarios. That way madness lies.
Scientist, not medic.
You're doing the right thing, but as Narwhal10 asks, 'Who wrote it?' and 'What was it published in?' Peer reviewed journals are typically the better sources. Any source that leads to or incudes adverts for supplements etc needs treating with the greatest caution.
My favourite 'Expert' definition is 'Ex' as in past-tense, 'Has been' and 'Spurt' as in 'a drip under pressure'.
You don't mention if you've [or any one else has] considered our old friend, the fish tapeworm, Diphyllobothrium Latum, which is a successful competitor for B12. The more B12 you imbibe, the faster the thing grows. I've only ever seen one case, despite everyone being taught about it in the dim and distant past.
The internet is a great resource, but then again, so is my dustbin. Be selective!
Good luck in your quest.
Thank you, I do have a bit of a medical background as I completed my Bachelor of Nursing in 2008 so I’m comfortable working my way around the peer reviewed stuff. It just gets overwhelming and it’s different when you’re researching about your health rather than a uni paper.
I do like your expert definition!! lol!
Researching your own condition certainly sharpens it up a bit, doesn't it? The general advice of 'Don't go off and Google it' is generally ignored too. That advice is probably given to stop us wandering down some of the very dodgy paths, as there's both good and bad on the web. Spotting the difference is always a challenge. Some of the good stuff is probably hidden behind paywalls, but you wouldn't know until you subscribed. [I don't!]
I have a friend in Rome . She worked for a top hotel there and would eat her favourite food every day when on duty! . That food was smoked salmon . She got severe B12 deficiency , caused by — Diphyllobothrium Latum .fish tapeworm . Obviously ate some insufficiently smoked salmon . Luckily her doctor spotted that , was treated and recovered quickly . I’d never heard of it before. I always mention it as a possible cause of B12 deficiency. She was not put off smoked salmon by this event , but now smoked salmon is frozen for a few days before being eaten . It’s certainly put me off , and I never eat Sushi .
Oops! I love smoked salmon, but we normally keep it frozen for a few days, without thinking of the little [or not so little] blighters. I've seen one on an x ray, using barium as a contrast. Once the barium had gone down the bowel, the tapeworm had swallowed some and that gave itself away. Normally expect this in more Northern climes.
I'm not a Ssushi lover either.
Hi Platypus, you have identified why it's so important to get a proper diagnosis as the treatment differs. PA is a late stage manifestation of AIG, also known as Autoimmune Metaplastic Atrophic Gastritis (AMAG), where our immune system attacks and destroys the gastric Parietal Cells in the oxyntic mucosa. As these are being destroyed our body, in trying to repair this damage, replaces these cells with what, what I've termed "imposter cells", or better known as Gastric Intestinal Metaplasia (GIM) hence the term "Metaplastic". GIM is considered a precancerous lesion and should be looked after. Not to fear but rather respect through knowledge. The vast majority ~90% do NOT ever progress to cancer. But it is known that roughly 10% of those with AIG will get cancer. I am one of those and if found early enough it's perfectly curable through endoscopic resection. Both the US and European guidelines recommend having an endoscopy or gastroscopy performed to do an initial cancer screening and Gastric Mapping risk assessment for future surveillance. In the US it's the AGA guidelines per the Modified Sydney Protocol and the European guidelines I believe are the MAPPS II guidelines. My cancer was cured but of course the underlying insulting condition of AIG remains so I'm now on short term periodic EGD surveillance.
You will see in the literature that gastric cancer risk for those with AIG is anywhere between 3 - 13 fold increased. That translates to 300 to 1300% increased risk from the general population. I think the 10% number for those with AIG, I mentioned earlier, is more relevant although the data for either is rather scant as AIG/PA are so under and misdiagnosed.
If possible know your family history. Other exacerbating risk factors for gastric cancer are:
Of course, AIG
Family history of gastric cancer
Being female
Having type A blood
Also, prolonged heavy tobacco and/or alcohol use.
Again, not to scare but rather inform. It saved my life.
Best wishes, Rexz
Thanks Rexz, that’s actually really helpful to hear. I’m sorry that you got the short end of the stick with your AIG/PA and developing cancer.
It helps to hear of others in this sorry lifeboat. My GP has been fairly decent (got me on IM injections as soon as the B12D was noted, though they weren’t quite enough) and she is being thorough in discounting serious conditions like ME etc.
I just want her assistance/partnership in helping me get better so it’s not just me against the docs, you know?
Yes, collaborative partnership is necessary with stuff. You're fortunate to have found a doc like that and thorough as this disease is so systemic. I was tested for everything under the moon and probably over it too! 🤣. ME, MS, Graves, Guillain barre, Hashimoto's thyroiditis (oops they found that one!), Hashimoto's encephalitis, and others I've forgotten, oh yes Sjogren's Syndrome (another oops they found it). You should have her check your thyroid antibodies as about 40% of those with AIG also have Hashimoto's thyroiditis or hypothyroid and there are some overlapping symptoms.
Your homework assignment 🧐 is...
If you have a chance, look up Polyglandular Autoimmune Syndrome type 3b. And no you cannot say your dog ate your homework!! 😂
Best wishes, Rexz
I am usually the one following up and checking on homework these days!
Interesting how these autoimmune disorders all seem to be connected, almost co-dependent. Is that your diagnosis? PAS 3b?
My thyroid was one of the first things the GP thought of and checked but the blood tests came back within normal range for TSH 0.8 (0.4-3.5) and Free T4 13.5 (9.0-19.0).
Should I request thyroid antibodies if my normal test has cleared?
Yes, I have PAS 3b , YAY!! 🎉
In my very humble opinion, because of the close association, anyone that is diagnosed with AIG should be checked periodically, maybe annually, for thyroid antibodies. If they show up, the sooner you start treating the better. I also have full iron panels TBIC, not just Ferritin, and serum Gastrin as high levels of gastric along with AIG are indicative of low/no stomach acid. The other closely associated autoimmune disease is type 1 diabetes, so keep an eye on your blood sugars.
Rexz
For newer members, just a reminder that I have a post on "Doing Your Own Research":
healthunlocked.com/pasoc/po...
Thank you, that’s a really helpful post you’ve linked!
I did my Bachelor of Nursing and I’m confident in my ability to not just Dr Google my way into an echo chamber but at the same time, it hits different when you’re researching stuff that affects you rather than just for a uni paper.
In your research are you finding anything about low stomach acid, hypochlorhydia, ? I've been wondering where my B-12 problems came from and this is a big one. Low stomach could be an autoimmune induced consequence. I've probably had celiac (gluten intolerance) all my life. Just some ideas for your research.
Yes that’s been coming up quite a bit, especially after my IFAB and PCAB tests came up negative and I started looking into Gastritis more.
I’ve had issues with iron absorption for years, supplements give me diarrhoea (and the doctors never believe me since it usually does the opposite).
I’ve had a negative blood test for coeliac but I’m going to ask to be tested for it as well when I see the gastroenterologist.
Do you know if Autoimmune Gastritis is a familial autoimmune disorder, like PA? My Mum has lupus, diverticulitis and a few other things going on.
My brother, a vegetarian and super fit and healthy, found he was low iron. He fixed it by a) eating some onions with every meal and b)avoiding tea and coffee within an hour of eating.
Yep, Onions help with nonheme iron absorption (there is research on that). So does garlic, foods with beta-carotene and vitamin C. Lentils are one of the best vegetarian iron sources, also chopped tomatoes or tomato sauces. Vegetarians can sometimes lean on dairy too much which is very low or lacking in iron. I was never vegetarian but have been vegan for almost 2 decades and I have never had an iron deficiency - I get 3x the iron RDA without supplements. Guilty of excessive coffee consumption after meals but it doesn't make a difference to iron for me 😅
I don't know about autoimmune gastritis, but I do know that when I gave up gluten (and it's in many, many things) I immediately felt better. I didn't wait to take a test.
I think there are two potential issues with giving up gluten without testing first.
(1) You potentially remove a variety of healthy foods from the diet, for example many wholegrains, which contain gluten. Unless you run your new diet through Cronometer or a similar tool you could be losing useful nutrition. Many gluten-free processed foods are not necessarily healthier.
(2) It becomes more difficult to confirm a Celiac diagnosis since no gluten is being consumed - Celiac disease is potentially life-threatening so getting a confirmed diagnosis is important since in that case special measures are required and even traces of gluten need to be be avoided to avoid relapse and damage to the gut.
I was doubled over with severe pain and had been for days. I had painful hemorrhoids and the medics were prescribing steroids. When I realized that all this cleared up giving up the obvious gluten...bread...I started researching. Now most of my food is from scratch. The GF products are mostly junk.
"If you think you may have coeliac disease, it’s essential to continue eating gluten until your doctor makes a diagnosis.
The diagnostic tests for coeliac disease look at how the body responds to gluten.
Some people may start to reduce or eliminate gluten from their diet because they feel ill. Unfortunately this is very likely to cause an inaccurate result for both the blood test and the gut biopsy.
Therefore, it’s very important to keep eating gluten throughout the diagnosis process.
If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health."
"Getting a medical diagnosis, however, is important to ensure you get the medical follow up and support that is recommended for people with coeliac disease."
from Coeliac UK
coeliac.org.uk/information-...
A gluten intolerance is not the same as Coeliac disease. Complications related to undiagnosed Coeliac disease were a factor in illnesses and ill-health that led to my mum's death which is part of why I feel strongly about a suspicion of Coeliac disease being properly diagnosed if suspected.
I appreciate your concern but after almost 15 years of being gluten free and doing pretty darn well, I'm not going to start eating it now just to get an official diagnosis. I'm very sorry about your mum. I operate on the premise that I do have coeliac and I act accordingly.
Hi Prillyb12, yes, Autoimmune Gastritis and particularly one of its manifestations is hypochlorydria and eventually leading to achlorhydria. The parietal cells that are being attacked secrete both Intrinsic Factor required for B12 absorption and they also secrete gastric acid. On the way to achlorhydria, many years, one can experience acid reflux and erroneously prescribed a PPI which further inhibits acid production of the proton pumps which are in the parietal cells. AIG is a decades long process of attacking the oxyntic mucosa mist all of that time is asymptomatic but at near end state (a great amount of oxyntic mucosa is gone) it will culminate in Pernicious Anemia (but not for all), achlorhydria also brings a whole host of digestive issues from protein digestion, inability to kill ingested pathogens, (be careful on food prep), SIBO, iron absorption and others.
Best, Rexz
Thank you for this information. It was very helpful for understanding the process. Next time I see my medics, I need to talk to them about my stomach acid problem and how this has lead to my PA. And why I need injections not tablets. AIG is a new piece of the puzzle. I spent years healing my gut with various supplements and healthy eating. What a journey. Thanks again, Rexz
I’ve never had a problem with heartburn and I can count on one hand the amount of times I’ve burped in the last 3 years 🤷🏻♀️
But I do have a sensitive stomach and sometimes just get bloated, nauseous and random attacks of diarrhoea for seemingly no reason. I thought it was from a bad bout of food poisoning in 2016 that led to a campylobacter/giardia infection that wiped me out for months. I’ve been trying to improve my gut health for years because of that.
It might sound silly but ...
Scared and exhausted
Examining the Diagnosis and Treatment Experiences of People Living With Autoimmune Gastritis and Pernicious Anemia
