which comes first.........and are they related

[Ktomoph_]

I am trying to work out whether the continuing awful constipation caused the anaemia OR whether the anaemia caused the awful constipation.........

I have googled and read through everything that I can to try to understand why this is happening, but without confirmation either way.

I eat a very balanced and healthy diet which has not caused any issues before so it is quite frustrating to have really bad and prolonged constipation.

Being diagnosed after a blood test in January with anaemia was also a bit of a surprise to me, but a diagnosis that perhaps explains the overwhelming need to sleep after meals and generally feeling exhausted.

[wedgewood]

Do you mean that your diagnosis is Pernicious Anaemia. ( you only wrote “Anaemia”) . Well PA is caused by a gastric problem. , which can affect bowel movement . either constipation or diaharrea. I would suggest a daily 40 gram breakfast of proper porridge oats ( NOT QUICK OATS ) with a spoonful of milled flaxseeds . Use as little sugar as possible . Best of all , no sugar at all. Oats contain something ( can’t remember the name ) that has a hugely beneficial effect on the gut .( look it up on Google ) It’s a great natural solution for tummy problems . Much better than any medicine . You can’t go wrong with oats . Get your oats today . !!!

.

[Ktomoph_ in reply to wedgewood]

thankyou for the response and info on oats. I have also had bouts of diarrhoea but mostly chronic constipation and as such confused about what to eat to the point I am now not wanting to eat anything.

Yes, pernicious anaemia. I have heart failure which, along with some of the meds, know that this causes problems to all other organs in the body including the digestive system.

Getting treatment to resolve this seems to be an ongoing request at my surgery with the main response being a prescription for laxatives and one for B12 supplements - which has a known side affect of causing constipation!

I try to remain positive but its pretty difficult sometimes.

[wedgewood in reply to Ktomoph_]

Please try the oats . I know that it sounds simple ,but it’s good .

The lack of stomach acid that comes with Pernicious Anaemia upsets the stomach flora ( the destruction of the parietal cells by antibodies ) The parietal cells produce stomach acid and the intrinsic Factor . This upsets the stomach flora , causing various problems .

Probiotic foods like sauerkraut, kefir , and kimchi etc help with this . Probiotic tablets are also an idea . I used Symprove , a liquid, water- based probiotic . This helps to re-establish good stomach bacteria . Best wishes

[Ktomoph_ in reply to wedgewood]

I awoke early this morning - my sleep pattern is all over the place! - and read you response after wondering whether to eat today and if so what?

After reading your suggestion as to proper porridge oats, I decided to give them a try. I also do have Kefir because of the probiotics, and so far I am feeling OK, none of the overwhelming need to sleep after eating.

I have been reading up as much as I can on PA but sometimes there are slightly conflicting pieces of info and added to this are all the other ailments I suffer - gluten intolerant being one, but thankfully I do have gluten free oats in the house so that helped this morning.

My understanding of the anaemia is that the body doesnt/cant absorb the iron from the foods we eat - your explanation makes it clear there is more to it than this.

Thankyou for the info - it helps with understanding what on earth is going on inside my body.

Does it ever get 'fixed' and you become clear of it?

[Nackapan in reply to Ktomoph_]

My daughter had to rethink her whole diet.Different things work for different people.

She has no gluten now or diary .

Natural sugars in ripe bannanas ,prune juice , stewed apple ,mixed Berries on your porridge with s blob of live yoghurt regularly at the same time of day may well help .

Less wholemeal helps ibs.

Miserable hope you find a way

[Ktomoph_ in reply to Nackapan]

thanks for your response.

The PA just makes me feel so exhausted and my HF along with the AF add to the feeling of total exhaustion. I used to be able to cope with this by eating a diet which would give the energy levels a boost naturally, but now with the PA it's not so easy.

Does your daughter have PA? and has she chosen to exclude gluten and dairy for this reason or does she suffer IBS?

This is yet another learning curve that I hadnt expected having eaten really healthily all my life - pure luck meant I didnt like any of the 'junk' food or fizzy drinks. Does make me wonder sometimes whether I would be having these issues if I had eaten junk food and drank fizzy drinks😄

So far though, my heart and stomach appear to be coping with the porridge and I am interested to see how the day progresses.

[Nackapan in reply to Ktomoph_]

Yes my daughter has assumed PA as b12 was in the 80s (200-900Also had megobolastic anaemia and very low ferritin and vit D .

She's previously Been diagnosed with ibs and fibromyalgia and chronic fatigue which was wrong

The b12 tested.

Has POTS and hypomobility ( head ehlers danlos as a result of many years b12 not tested. So not treated

She used fodmap as a start .

Gut mobility sluggish and like you alternated with diarrhoea and chronically constipated.

Nausea z big problem snd abdominal pain.

Also acid reflux.

Her diet used to be very mixed .

Never a fussy eater.

So a big shock.

[Ktomoph_ in reply to Nackapan]

wow....she has a lot to deal with. I had not heard of PoTS and had to look it up, and the same with Ehlers Danlos syndrome. Reading through the symptoms I really do have sympathy for what she must be going through and suffering.

I have always paid attention to any 'cravings' I experience as I feel strongly that our bodies will let us know if something is lacking in our diet - and likewise the opposite applies in my reactions to certain foods.

I only found this forum yesterday evening and yet I have learned so much in such a short space of time from all of you who have responded. I am feeling a lot lighter and confident in what it is and what I need to speak with my GP about.

I wish your daughter well and hope there are remedies out there somewhere for her.

[wedgewood]

I’m afraid that you cannot get rid of Pernicious Anaemia . Once you have it , it’s for life . But with the right treatment you can live a perfectly normal life . Getting the right treatment can be difficult because the medical profession believes in “ one size fits all” treatment. We find out for ourselves by trial and error , what our treatment should be . I need a B12 injection every week Some patients need daily treatment . Some are fine on 1 injection every3 months etc etc .etc .

My “gut” problems have disappeared completely. It’s just great to have this forum. First rate .

[Ktomoph_ in reply to wedgewood]

yes I only found the forum yesterday and was so relieved to find it! Its been difficult trying to find answers on my own.

and yes, I agree. I have discovered that it is almost a constant kind of 'nagging' process when contacting the surgery to say I need treatment of some kind after diagnosis.

So, you (and others I have noticed on this forum) have B12 injections - my GP mentioned when I was diagnosed that I may need injections, but I was given a prescription for tablets.....first warning on advice leaflet being that these cause constipation.

Were you ever prescribed tablets and then changed to injection?

Does the injection of B12 cause constipation/diarrhoea?

[Technoid in reply to Ktomoph_]

Neither B12 tablets nor injections cause diarrhoea that I know of, although a B12 deficiency certainly can, or PA thats not being adequately treated.

[Ktomoph_ in reply to Technoid]

thanks for response. This is my concern, that its not being adequately treated.....

[wedgewood in reply to Ktomoph_]

I agree with Technoid .

If you have diagnosed P.A. .should have received 6 B12 injections over 2 weeks . Then you will be offered an injection every 3 weeks , which may or not be sufficient to keep your symptoms at bay. But for most PA patients. the oral tablets do not work , due to lack of intrinsic factor and stomach acid .

The surgeries. are trying to employ as few nurses as possible, so want to fob patients off with tablets . Undertreated P.A can lead to compromised health . Most of us on this forum are forced to self-inject B12 to keep ourselves well . We have to obtain B12 ampoules from German online pharmacies , where B12 ampoules are prescription free ( unlike in UK )

Needles syringes etc are obtainable from online medical suppliers in UK .

Also, it’s advisable to take a modest folic acid tablet daily say a 400mcg ( Vitamin B9) It works together with B12 . zDid your GP not advise this ?

[Ktomoph_ in reply to wedgewood]

yes, this is the case. I have been so poorly, exhausted, foggy headed, too weak some days to do anything, and in so much discomfort and some pain that I get to the point of almost dialling 111 to request to be taken to hospital.

Yes, on diagnosis the GP did suggest that I may need to have B12 injections, but issued a prescription for tablets.

I just feel that it is a constant battle to get what is needed health wise - I do wonder sometimes whether I am being a wimp, and should just accept some of these symptoms as part of my life now....

[Technoid in reply to Ktomoph_]

Mild B12 deficiencies are often treated with tablets. Open to correction here but I recall hearing that in the US, the oral treatment route is the primary and preferred treatment route. There are some studies including a Cochrane review (normally a very trustworthy meta-review source) which claim to show that oral treatment is "as effective" as injections.

lMO there are many serious problems with the methodology and conclusions of the studies on oral vs injected B12 but some doctors may cite them to justify the oral treatment route.

The passive absorption of B12 (~1% of the dose) occurs independently of intrinsic factor so, in theory, PA patients should be able to benefit from tablets. This might be true in some cases but many seem to find only injections are effective (and often much more frequent injections than typical treatment guidelines say are necessary).

It may also be a cost saving measure on the the part of the treating physician, with the logic of: try tablets first, if they work, no need for injections.

[Ktomoph_ in reply to Technoid]

I absolutely believe it to be a cost saving measure - especially from experience relating to medication and referrals in the past......

[Bellabab]

The PA knocks out the hydrochloric acid producing cells in the stomach so food isn't broken down enough. This leads to constipation which can lead to an anal prolapse with painful piles, bleeding and anal incontinence - hence essential to get on top of it.

I use Betaine HCl capsules before every meal and drink sugar free lemon squash to correct the lack of natural acid. To restore the natural bacteria population of the gut, thats oft thrown out of balance because of these digestive problems I take an Omega 3 capsule and a probiotic capsule of lactobacillus acidophilus each morning . My breakfast consists of 60 grammes of semi skimmed milk; 10 grammes of wheat bran; 20 grammes of a rich muesli contains oats, grains, dried fruits & nuts .PLUS half a satsuma and a small sliced slightly green banana. On top some natural yogurt and some natural kefir. Enjoy.

[Ktomoph_ in reply to Bellabab]

oh my goodness....this is what has happened recently apart from the prolapse.

thankyou for your response. I am about to talk with the nurse about recent blood test results and will raise my concerns that things appear to be getting worse.

and thankyou for diet info - all very helpful.

[B12life]

along with the suggestions here such as oats and what not, do i jections frequently. They will help with energy and brain fog.

I had constipation once, caused by h-pylori

Docs kept giving me laxatives but that's a kludge for a real problem.

Next doc visit ask for a test.

[Ktomoph_ in reply to B12life]

thanks for responding.

I too know the issues with laxatives and therefore do not take them. I prefer to use natural laxatives such as apricots, prunes, figs and orange juice, and of course high fibre foods(a little more difficult as I am GF).

It is the B12 injections that sound promising and I am now wondering - after reading other PA sufferers on this forum - why the GP didnt prescribe these when I was diagnosed....... It is however, something that gives me hope (even though I have a needle phobia!)

[daknash]

For my pernicious anemia my hematologist said only B12 injections will work even though other doctors have tried to get me to do the pills which I refuse to be their test subject.