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Pernicious Anaemia Society
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Sibo

Hi ive been diagnosed with the above seems very hard to treat can it just be a sumptom of low b12? My nan had pa i have all the symptoms and sublinical hypothyroid.

Low vit d, aswell

Im starting to think sibo is a sumptom rather than a diagnosis to end all symptoms

I have mfthr but again this is a tecent thing what did people do before just get told gut first but think my body needs help to get rid of sibo by it workinv at right speed

Have bad fatigue

Ear ringing

Fat gluteen sugar intolerance

Dizzy

Bad pmt all worse this time

Drops in mood

Body wakes up a bit afternoon

Tongling in feet if eat chocolate carbs gluten yeast etc

Ache in my legs

Headaches

Spasm in neck and face

Lots antisociale depression etc

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I don't know much about Sibo I'm afraid, but I suspect that it is more likely to be a cause of possible malabsorption. Various gastric issues are often the cause of the bodies inability to absorb B12 (which is different to PA, which is a specific cause because of antibodies attacking the Intrinstic Factors ability to collect B12)

Many of the symptoms you mention would certainly fit with a B12 deficiency, although they could also show other things.

PA can run in families, so the fact that someone in your family had it would possibly increase the chance of that, but in general the treatment is the same anyway.

Have you had any blood tests? B12, Folate and iron would all be sensible ones given your symptoms I think.

Hopefully someone with more experience of Sibo can add their experience.

Gavin

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Pernicious anaemia results in low B12 and reduction of the acidity of the stomach(Hypochlorhydria). This can lead to small intestinal bacterial overgrowth and deficiency of other nutrients which are helped by stomach acidity, like iron and other minerals.

From your symptoms I would suspect B12 deficiency, I had many of the symptoms only a month ago until I started supplementing B12.

Have you been diagnosed with pernicious anaemia ? If not you should see your doctor as soon as you can and mention PA and B12.

I wouldn't worry too much about mfthr for the moment.

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Hi thank you both!

That would make perfect sense my nan had all same symptoms even suddenly funny about what she would eat saying its all off....

Trouble is if i keep feeding sibo or pernicous anemia my b12 gets very low and it seriously affects me even mentally and i cant let myself get that bad to fit into nhs b12 range...

I did it for two weeks and my b12 went down to 200 and my thyroid...

A hospital told me to do just meat and beg but i get so dizzy to help rid sibo but i cant do it !! So now they saying anout elemental shakes but i feel like im wasting my time as i think its to do with pa

I have a pots specialist appointment in a few weeks how can i explain this to get help. My gp isnt very clued up doesnt under stand... i had taken b12 spray before last test so altered tesult and i had been avoiding foods that make me worse with malabsorbtion...

Last week i tried to take my son out to oark did more than jormal and ended up in hospital next day my legs hurt ached so bad back pain sensiyive skin neck spasm...

I just get worse and worse and cant lead a normal life.

Thankyou x

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I have t been diagnised gastro said i orob had autiminunne disease and antibiotics ten years ago ( how long been v bad) made it spiral ...

I just seem to be going to diff specialust for symptoms

Pots syndrome

Sibo

Endocrine

Mfthr genetic

Xx

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Gastrin is the test for stomach acid in this case. SIBO is the action of bacteria in the SI either physically blocking or preventing through other means such as excess mucous production, the absorption of nutrients at one or more places in the SI. B12 being absorbed lower down the ileum and others being absorbed higher up. Treatment can by metronidazole or others that specifically target those bacteria known to be involved in overgrowth. Results are variable from what I understand, from cure in one treatment to requiring many treatments. At this time, Biome transplants are not permitted in the UK by NICE unless the condition results from multiple C Diff infections.

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What autoimmune disease do you have? PA is an autoimmune disease. Looking at your previous posts I notice that you had low thyroid hormones. Hashimoto’s thyroiditis can cause low thyroid hormones and is associated with PA as well...

You should mention to the consultants (if you are seeing them soon) that your nan had PA. E specially the Sibo or Endocrine specialist. They could do tests for intrinsic factor antibodies , parietal cell antibodies and gastrin. These tests may suggest PA or not.

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Hi i dont know

My thyroid tsh is very low and t4 and t3 also very low so its not typical i was told last time its due to something else. That one said mfthr :/ i dont buy it sorry ... what did people used to do bdfore mfthr!

I have sublincial hypothyroid my gp hasnt heard of mfthr and is sending me back saying could it be pituitary or polyglandular....

Im at the point im so desperate i woukd inject my self as gone on so long ive wasted ten years and niw on my isn sith my son and im really struggling its so upsetting. I want to take hi

Swimming etc :(

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Its a difficult choice, take b12 and possibly feel a lot better but make a diagnosis harder. Or don't take b12, feel terrible and still not get anywhere with treatment or diagnosis.

As this has been going on for so long I would take B12, say a few mgs (1000+ mcg) and a folate supplement every day (800mcg) and see how you go. If in a month you still have your symptoms then you know it is something else. If you do have PA you need to take some form of B12 for life.

Don't worry about mfthr, it just means you process B9 slower and probably need more of it. Supplementing with B9 and B12 should lower your homocysteine anyway.

blog.23andme.com/health-tra...

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Thankyou i think im going to start ive had enough hopefully will help.

Thankyou xx

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So i can take folic acid metgal folate is expensive and my report said im good and bad with methyl b12 and do better hydroxy

Ive got folic acid ready and b12 i just want to start but tge mfthr made me csi confused ..

Thanks for your help

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I will ask them to asses me for pa but my next appointment is pots syndrome cardiologist as i have low blood pressure ... my endo is not until novemeber its all too long if i hadnt of had my son id of given up by now ... xx

Thanku

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drmyhill.co.uk/wiki/Ferment...

You may find the above link useful. Dr Myhill prefers to call SIBO - gut fermentation in her book - Sustainable Medicine.

Referrring to your thyroid where the TSH FT4 and FT3 are low - then Central Hypothyroidism could be the cause where the Pituitary is at fault - rather than Primary Hypothyroidism - where the TSH is raised and the FT4 and FT3 are low in range.

:-)

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Yes one gp is argueing that , its just gone on too long go to diffrent consultants but still ill.

My friend found out her mum is dying i never go out need to be there for my friend . Went for lunch i couldnt eat anything but so hard to explain , are and felt awful ...

Its isolating the food part and tgen all the other horrible symptoms make it hard to not be hone bound ...

Thank god i have hacob 11 years id too much i have pushed and pushed to get better im tiered if it all now ...

X

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If you do have PA , then that SIBO problem could be a result of having low or no stomach acid ( hypochlorhydria or Achlorhydria ) which PA patients have . This allows bad bacteria to flourish -upsetting the stomach flora . To help the re-establishment of stomach flora, a good probiotic is recommended . The cheapest is home-made organic raw sauerkraut ( recipe online ) Otherwise buy a probiotic . A very good one is Symprove. , a water-based liquid( unfortunately very expensive ) or bio -kult, in a capsule . It might be worth a try ! Best wishes

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you need to give up all gluten and all of its relatives including processed food. wheat, barley, rye, oats, soy, rice, corn.

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Ive done this but i get dizzy no carbs and potatoes make me feel ill. I cant iust eat meat and veg and uts very hard with a toddler

I do gluten, yeast, soya, sugar free not much left to eat ...

Ive had antibiotic for sibo didnt work ive done diet etc from all my reading u have to get underlying ptoblem sorted out ...

Maybe its pa and thyroid

Oh i also cantbtolerate fat im sick to my stomache and gave sticky poo they said due to sibo at gastro ...

But i think its a symptom of the bigger piicture and my nan same she passed with dementia and heart attack

My som us showing symptoms and has soeach delay i need to get diagnosed to help him really but i slso need to get better to cope and do things i want to with him x

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Antibiotic for SIBO is the worst thing that you could do ! You need PROBIOTOCS !

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Hi

Gastro have me specific antibiotic for sibo then said eat just meat and veg but i was too dizzy and ending up not eating regular and getting low. LOos sugar or something.

Its v hectic on my own no support witg toddler and hard to do when out also indoors is non stop. He has speach delay and bedy hyper and clingy as just is too.

So its hard to do it and i get symptoms when ive tried :/ i cant eat fruit eitger !!

I had bad pains in my back last week and my legs ached so much and sensitive skin , my neck v toght spasm ended up being sent to hospital by gp as he thought i had meningitis !

Id taken jacob yo park day before whilst fatigued and hours later felt awful and had those symptoms...

I think my adrenals are lnackered too or hopefully b12 will help :(

There next plan is to have me do a elemental shake for two weeks and not feed bacteria but i do think its a symptom of b12 thyoid etc

X thankyou

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Thankyou all for your coments .

I have neuro symptoms i have myscle weakness fluctuates in face neck arm all down right side. So im going to try treat incase it ends up irriversable as been years 6 since that started...

Gers worse after peeing poop and sweating ... x

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I'm sorry to hear you are in such a terrible state. I can totally sympathize I have celiac disease and spent 2 years bed bound. Now I'm new to the pernicious anemia after having my 2nd baby. The sibo is terrible and you will probably find that it can flare up after u get it under control. I too had all the low b/p symptoms and many more it is so hard but don't give up. The diet can be difficult at first but I have been doing it 6 years and it really did improve things. I followed the GAPS diet very strict for a year and it changed my life dramatically now anytime my digestionhas an issue I go right back to it. The rest of the time I stick to a paleo diet and eat very simply. Don't let this isolate you eat before you go out or bring soup in a thermos and sip it. Order a drink and enjoy the time socializing. I found 1 of the most important thing is the belief that you can heal and get better sometimes hearing the news from physician or feeling ignored by the medical establisment can really delay healing. While you are searching for answers and getting treatment remember to treat yourself with meditation reiki prayer whatever you feel drawn to. The human body is amazing and it always tries to heal itself. I hope that you find your way to health quickly :)

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Thankyou

Maybe it does relate to pernicous anemia then if u have sibo

I need to do gaps diet do you have a easy reference guide? Im so sick of it i get depressed and end up eating stuff i shouldnt and go round in circles

Hoping injections will help me get rid of sibo x

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Not sure where u are located but here in the us you can just Google it and there is a bunch of info recipes and such. I was very I'll and needed as much info as I could get so I read the book about it and worked closely with a gaps/nutritional therapy practitioner. I was very lucky to find a very knowledgeable practitioner who really understands that nutrition is highly important. This support and the work I did with a reiki practitioner really gave me hope. Even after being diagnosed with celiac disease and pernicious anemia most doctors just roll their eyes at me even when my test results show me deficient in everything and anemic. I needed to take my health in my own hands because most doctors spend there time with sick people and are seeing way to many patients to care about nutrient deficiency that they learned nothing about in med school. I hope this helps u be brave have hope and arm yourself with information. :)

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