Hello everyone, I'm almost 2 years in now with PA diagnosis. I get b12 injection once every 4 weeks. Things have gotten better but I still suffer from gastric problems. I've tried gluten free and other diets but I can't seem to pin down what type of food cause this low level pain in gut sometimes. I've had upper GI and colonoscopy, been tested for celiac, thank GOD the test came back good. GI doc says I should have another endoscopy in a few months. You would not believe how I get so worked up and worried with these test The doctor tells you not to worry at the same time telling you what they are ruling out. Before the doctors found out of the PA, I think I was b12 deficienct so long my body took a hit neurologically and ears still ringing from time to time. The forgetfulness got better with steady injections, but I'm not the same person. If I go without my long list of vitamins, things get bad for me. I have to get the b12, the magnesium, iron, probiotic, zinc,potassium and omega max. These help me to balance every day life but I'm not the same. It is a balancing process because with gastritis, I'm not getting vitamins absorbed by food. The gut sends signals to the brain. Which then send signals to the body. A somewhat vicious cyclce sometimes in my case,. Open to any suggestions. Sorry about the long rant. Have a wonderful blessed day. Best
Stomach issues : Hello everyone, I'm... - Pernicious Anaemi...
Stomach issues
We all know now how important our “gut” is . It is a fact that Pernicious Anaemia patients have either Low or no stomach acid ( Hypochlorhydria/ Achlorhydria)
“Sometimes Pernicious Anaemia Patients suffer with “gut” problems , tummy pain and bloating etc . This happens because P.A. patients have low or no stomach acid . Hypochlorhydria/ Achlorhydria. ( due to the destruction of their parietal cells by the Intrinsic Factor antibodies ) The parietal cells produce stomach acid and The intrinsic factor. This low acid environment allows bad bacteria to flourish, which upsets the flora ( good bacteria ) in the stomach . Some P,A. patients find that taking an acidic drink like diluted organic cider -apple vinegar , lime / lemon juice with meals ,especially protein meals , really helps this .
The greatest help for my “gut” problems was a probiotic called Symprove , a water-based liquid . But there are probiotic capsules The probiotic encourages the growth of the good stomach flora . Also good to take after a course of anti-biotics , which destroy all bacteria good and bad .
Natural probiotics work well e.g. Organic sauerkraut , real yoghurt, kimchi and kefir .
Since getting the B12 treatment I need by getting adequate B12 injections, and the probiotic Symprove, the gut problems have disappeared . I no longer need Symprove ..
It is a good idea to eat smaller meals more often if one has low stomach acid ( as Pernicious Anaemia patients do ). Also chew food very thoroughly, giving the enzymes in saliva a good chance to start the breakdown of the food .
In severe cases of very low or no stomach acid ( Hypochlorhydria / Achlorhydria ) a capsule called Betaine Hydrochloric acid with pepsin will increase the acid in the stomach .( Amazon smile) Taken at mealtimes , can be used , but best to ask a nutritionist about dosage . It will vary according to how much stomach acid you have . There are instructions about dosage online .
A modest multi-vitamin and mineral tablet can also be helpful , as a low acid stomach is not good at breaking down our food to make minerals and vitamins available for absorption.
STOMACH ACID IS VERY IMPORTANT. WE NEED IT TO BREAK DOWN OUR FOOD , SO THAT WE CAN ABSORB ITS NUTRIENTS . “
Wow... you are amazing wedgewood. This is not the 1st time you've been a wonderful help. GOD bless you wedgewood and camp His Angel's around you. You are a good person. Thank you!
And yet, most doctors prescribe proton pump inhibitor drugs if you say you have digestion issues. They automatically think you have high stomach acid (without testing) but in most cases it is low. I have given up trying to tell them I know I have low and refuse to take their acid-lowering tablets.
Doctors like to cosy up to the pharmaceutical industry . PPIs make billions . They cause such harm .High stomach acid is rare , As we age, we produce less anyhow . And P.A. patients all have low / no stomach acid . Well done for refusing PPIs. As you say , they don’t test for it . I was told that there are no tests , but I know that there are . But they are expensive. “Give ‘em a PPI, and shut ‘em up “ .
I've been there. The tests for celaic disease are horrible - so invasive. The problem is they aren't very reliable. Rather like the tests for PA. Both blood and upper GI/endoscopies can produce false negatives. And you could have non-celiac gluten sensitivity which doesn't show on the blood tests.
I used to have severe gastric problems. I was always bloated and at night I couldn't sleep because of the pain from indigestion. I have cut out gluten, dairy, processed foods and cut down on sugar - the only sugar I have is in fruit. It took a couple of months for my gut to heal but I now have no gastric bloating or pain.
I can really understand how you are feeling.
One thing that has really helped me is using the FODMAP method to find out which foods caused me discomfort and pain. It is easy to look up and find out more on if you have not already tried it.
Through this I learned to avoid all oats, all the onion family, apples and pears and stoned fruit, citrus and dark green leaves and nuts, grains and seeds. Dosing with a probiotic while doing this has helped my gut to start to heal.
After a while … a couple of months I started to reintroduce the different foods one at a time and see if I could tolerate them again. It is slow going and can be very frustrating. I worked out they were high histamine foods and high oxalate levels that were giving me problems.
After 9 months now I am managing to get back to eating a more varied diet but only small amounts of the foods I was avoiding … eg once a week and not back to back. Smaller but more frequent meals also help. Digesting is still an issue …especially protein.
White fish and mash root veg and potato were my staple and still are if I have a set back. But things are getting better and the pain is mostly gone.
I have also switched to high potency multi vitamins and minerals while I do this to counter any effect of the restricted diet. To keep eating is important … just eat what you can without feeling uncomfortable and don’t feel guilty about it.
I hope you start feeling better soon.
I'm resigned to having stomach issues but through trial and error I have found that certain foods make me worse (dairy, bread, spicy, fizzy drinks, artificial sweeteners) and that apple cider vinegar or an acidic fruit juice with meals (grapefruit/pineapple) helps. Small regular meals also is more comfortable for me. I do eat what I like but just am careful with the things that cause the issues.
You mentioned that "you are not the same person" I also felt like that for many years after diagnosis and tried desperately to fight against it and be who I used to be which made me frustrated and unhappy. In a light bulb moment I decided to embrace the new me, (the me with Pernicious Anaemia) and accept it was a debilitating condition which I live with but to not let it define me. I started telling people I had PA and explaining what it was, I now just say if Im too tired to do something and largely friends and family and work colleagues have been supportive. With PA I think I'm far more tolerant of other people, listen more intently to people (I have to because - you know - brain fog!) and I really appreciate the good days when Ive been for a walk, functioned at work, attended a social event (and sometimes all of those things on the same day!). I also have a good laugh at myself when I forget words or make up a word for something and take pleasure when I find my car key in the fridge There's a book you can get on Amazon called The Healing Journal by Emily Sunez which has these little sayings and pictures in it for people with chronic illnesses. I keep it on my desk at work and find it helpful. Maybe something like that might help you. If the community of PA sufferers here on Health Unlocked is anything to go by, having PA makes us friendly sympathetic and helpful which in my view is a nice "person to be"
LOVE your outlook about this 🙌🏽♥️
Thank you LadyBothwell, point well taken, maybe if I stop competing with the me before PA and just be thankful, I won't get so worked up. Peace to you my friend
Hi. I also have suffered stomach pains over the last few years and have struggled to identify the cause. I can only tell you what works for me although it contradicts the rationale for someone with PA. Periodically, say for around a 3 month stint I take an over the counter product called Nexium. It’s an antacid, so it’s the opposite treatment of what you would expect. It appears to work, and I’ve had a suspicion that my pain maybe ulcer related. I’m on 3 monthly b12 injections and to be honest I don’t notice much difference from the injections. I have found a range of doctors who appeared to be trying their best but I thought they were lacking in the nuances of PA related issues. I’ve had a range of tests (h-pylori, ultrasound, Catscan…all good) but I’ve veered away from endoscopes and colonoscopies.
I manage my diet, I’ve cut out alcohol, caffeine, and any fizzy drinks and I appear to be managing the problem.
Hope you get sorted soon.
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