Pernicious Anaemia Society
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Dysbiosis problems with Pernicious Anaemia

Hi Everyone, I thought I would post to update on my search for an answer to my chronic digestion problems. It seems that whilst some PA sufferers manage their digestive issues well, others don't. I don't! I've recently been reduced to eating a few vegetables and fish, anything else gives me intense upper gastrointestinal pain, alternating diarrhea/ constipation, bloating etc. I had a breath test last year which came back with sky high positive results that suggested malabsorption or small intestinal bacterial overgrowth. I resisted antibiotics for as long as I could (as I've had horrendous reactions to them in the past) but when my weight slipped under 7 stone I gave in. I was given Rifaximin but after the antibiotic things were the same. The doctors didn't know what to do, then a new analysis of gut flora became available (I live in France). The results were very interesting. It would appear that the antibiotic did the trick and reduced the strains of my flora which had become pathogenic, unfortunately it reduced my good bacteria to virtually nothing. It also revealed that I'm pumping out enzymes due to the dysbiosis which destroy by red blood cells and provoke leaky gut amongst other things. I've now begun the long process of reducing the inflammation and reintroducing the good bacteria I'm lacking in. However, as, the biologist who interpreted my results pointed out, due to my PA I will always be susceptible to dysbiosis (my intestinal PH came up quite alkaline which is to be expected). I understand that there are some laboratories in the UK that do this type of analysis. If I hadn't had it done (and I paid for it myself) I would still be wondering if I still had SIBO and perhaps be tempted to have more antibioics which would have been catastrophic. I hope this post is useful for anyone in a similar predicament.

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Thanks for sharing that. I think we have fairly similar experiences in that constipation, bloating, stomach pain (and exhaustion) were my main symptoms of PA.

Like you, a ‘light’ diet helps. My ‘go to’ meal that leaves me feeling good is poached eggs, avocado & tomatoes on sourdough with asparagus and spinach on the side. Even better was the fasting and total clear out I had before my colonoscopy....my digestive system felt the best it had in a long time!

Just before PA was diagnosed I had a severe allergic reaction (anaphylaxis) to eating a peach. Despite the NHS not really believing in leaky gut the consultant thought this was the cause. I’m not actually allergic to peach but the protein in it is bio identical to birch tree pollen which I am allergic to. He thought the peach protein arrived in my gut as I had insufficient stomach acid to break it down and when it leaked through to my gut my immune system went into overdrive as it shouldn’t have been in my there.

He tested me for parietal cell antibodies (positive). If only he’d also tested me for B12 levels and IF antibodies I wouldn’t have had to wait another year for the PA diagnosis!

As mentioned in a previous post I think we’ve both been on, betaine HCL & pepsin tablets taken with meals, eating lots of probiotic foods and taking prebiotics on an almost constant basis hugely improves things, as does drinking very little alcohol. With this regime I suffer bloating and feeling over full at most. Slip up though and it all comes back full force.

I do wonder if introducing more digestive enzymes would help. Clivealive mentioned in a previous post that he’s been prescribed some and I do wonder if they’ve helped.

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I have had digestive issues for quite some time and having my gallbladder removed a couple of years ago didn't help the problem. I read an article recently about a strain of probiotic found in emmental cheese. I've been eating this cheese for the past two weeks and it seems to be helping with my problems. This is link to one of the articles: independent.co.uk/life-styl...

The specific strain of probiotic in the cheese is called Propionibacterium freudenreichii, I think you can find it in some probiotic pills. I plan to order some Align probiotic pills. Hope this helps.

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Thanks for this, MoKayD; I'll certainly be buying some of this cheese.

I think it's interesting that the bacterium in the cheese, propioni, is the very one which on the skin reacts to blood levels of B12 and can cause acne.

Food for thought.

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Oh, and another thing I've recently read about inflammation (which should include gut inflammation) is a scientific study using baking soda to calm inflammation. I haven't tried this yet since I just read it a couple of days ago but I intend to try it. Here is a link to the article: sciencedaily.com/releases/2...

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Thanks for the feedback, unfortunately my leaky gut has gone so far that I'm only able to tolerate a few veg and definitely no cheese whatsoever. I'm currently trying Gut pro probiotic having identifying the groups of probiotics that I need, but even that is causing some reactions. For the moment I'm tolerating the reactions as they aren't too bad in the hope of achieving some balance.

The enzymes I'm producing due to the dysbiosis are actually similar to bicarbonate and therefore making the alkalinity of my intestines worse (which is exactly the environment the bad bacteria need to thrive).

HCL and digestive enzymes are unbearably painful as I have duodenitis again due to the dysbiosis. I'm afraid I'm in a vicious circle. I'm desperately hoping that the probiotics will help me to widen my diet. My GI doctor says most people with PA don't have my issues or at least not as bad, but I've found a few people here like me.

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Hi expatkerry , I can really relate to your post. Regarding digestion and absorption problems, I only ever feel at my best when having to fast and purge in preparation for a test !

Fodmap diet for 6 weeks did nothing for my chronic diarrhoea ,when sent to dietitian as it was thought that I had IBS, neither did Dexycycline (which I had a bad reaction to- mainly severe face pain and vertigo), when sent to gastroenterologist, as it was thought to be SIBO after breath test. Now she thinks it is IBS - while admitting to me that that would not explain my hair loss, gums bleeding, split mouth at corners, sinus and saliva gland problems (-all of which incidentally Dexycycline DID help with, almost immediately) and cognitive problems, memory problems (-which were sadly beyond Dexycycline's capabilities).

Elimination diets are very difficult for me because it seems whatever I eat makes my body very annoyed, if not absolutely livid (never "irritable"!) - where to start ??? This is literally every day for the last three and a half years. Without continually supplementing, I get deficient in ferritin, folate, B12, have raised MMA and also have osteoporosis of the spine, despite my very healthy diet, which I have to keep on tirelessly defending as it is vegetarian. If I'm not eating cheese, eggs and leafy green vegetables, what do they imagine I'm eating ?

Was diagnosed first with B12 deficiency, then with Functional B12 deficiency, never with PA.

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Hi Expatkerry. I have similar issues, live in the UK and have been seeing a gastro for my issues still unresolved. I have painful swallowing and my chest gets inflamed which I assume is from GERD. I have terrible trouble with my stomach and gut. I am trialling apple cider vinegar with the mother to try and get some acidity into my stomach ad I have no stomach acid. I have just started a day ago so will see if this helps at all. I am over 6 feet tall and was 83kg dnd am down to 75 in 3 months. Getting quite concerned and don’t know what to do next!!

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