A family member has had issues with stomach pain, bowel cramps , mild diarrhoea for over 3 years on and off. Has had times when he was fine then goes through a few days or a week or two of stomach or bowel pain, sometimes with diarrhoea, sometimes not with. Gp previously tested for stomach infections and put it all down to diet for the last few years . However he has more recently finding it hard to focus and take detailed information in . in january diagnosed with deficient b12 and folate . been on tablets for this since february but now the last month or so very tired , with a few occasions of diarrhoea randomly but not long lasting , some periods of headaches , heartburn , throat feeling uncomfortable and wanting to drink more water because of it , more stomach issues , feeling sick , once being sick and one day two weeks ago he said he felt weird and his legs didn’t feel they were working right . also one day said his vision was weird with different colours after looking out the window . i called the gp back and they are going to retest b12 and folate and also test for Pa.
Can i ask , are all these symptoms possibly linked to pa and low b12 and folate because i’m a bit confused with things like the throat feeling weird or the heart burn and the rare occasions of vomiting . just trying to rule out other things he could be dealing with on top of low b12 and folate . either way , hoping go considers injections for him to speed up fixing his levels as i have no idea how long they have been low .
gp tested celiac in january and was negative.
any advice or shared experience of pa symptoms would be useful thanks xx
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NICE (National Institute of Health and Care Excellence) published a new B12 deficiency guideline on March 6th 2024 which may affect the treatment/diagnostic process that GPs follow.
I have some reservations about the new guideline, in my personal opinion I think there's too much emphasis on oral B12 treatment but there are some good bits.
The new NICE guideline uses the term "autoimmune gastritis" rather than pernicious anaemia.
Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland. These local guidelines will probably be reviewed soon due to new NICE guideline so keep an eye on them.
I left detailed replies which should have some useful info including symptoms lists on the thread below.
Hi, thank you for all this information. I am in Scotland and the Coeliac test was TTG AG (Iga) . They didn’t ask him to eat lots of gluten before test . But he generally eats gluten lunch and dinner . Not a big bread eater or cereal eater and doesn’t eat pasta but usually has breaded meats or wraps or puff pastry or yorkshire puddings most weeks .
i was originally worried about crohns or coeliac or dairy intolerance because his symptoms were so off and on.
They hadn’t tested vitamin d but did test iron . the iron is pretty low in my opinion but within normal range . Serum ferritin 55.2 with range of 28 to 285.
i’m his mum and have hashimotos and vit d , folate and b12 deficiencys for 15 years and have to take daily supplements . i tested negative for pa when they tested me a few years back .
Hi, thank you , he is 14 . Myself and my sister have b12 deficiency . Don’t think my sister was ever diagnosed with PA. my pa test was negative done about 7 years ago. both of us had to go on injections for a while , she had nerve symptoms in her leg. i’ll read your links and join the pas , thank you
Are there any relatives in older generations or cousins with PA or Coeliac disease or other gut conditions that could affect absorption?
If yes, make sure GP knows about them.
Apologies for repeating anything you've already read.
"both of us had to go on injections for a while , she had nerve symptoms in her leg"
As an adult with neuro symptoms, I would expect her to have been put on the treatment pattern for those with neurological involvement in this link (see Indications and Doses section) potentially for life. I think this applies to any cause of B12 deficiency even dietary.
PA and some other gut conditions that affect absorption of B12 require life long B12 treatment. PAS website has various leaflets that mention treatment.
B12 treatment may be temporary in a person with coeliac disease if coeliac diagnosed early enough as a strict gluten free diet may allow gut to heal enough for absorption to be at good enough levels. If coeliac disease is advanced then may still require life long B12 treatment if gut damage severe.
Might be worth listing a few risk factors to pass to GP eg
1) blood relatives with B12 deficiency (and any with a PA, coeliac, diverticultis, crohn;s disease etc)
2) auto-immune diseases in family (quite common for people here to have autoimmune thyroid disease)
"and put it all down to diet for the last few years"
Might be worth writing out typical weekly diet, all food and drink to discuss with his GP. Highlight any B12 rich food eg meat, dairy, fish, shellfish, eggs, foods fortified with B12.
It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected.
I hope you find some support with the PAS. As I said before, parents aren't always listened to but at least his GP is willing to consider non- dietary causes. Maybe you could pass PAS leaflets about juvenile PA to GP.
There have been cases of parents being diagnosed with a severe mental health condition for treating their children for suspected B12 deficiency without doctors' agreement.
B12info.com blog has posts mentioning children, some details may be upsetting to read.
As I said before, there is ignorance in some doctors about how B12 deficiency presents in adults and children. It's often missed due to some common wrong ideas.
See links below and also articles I listed under Help for GP.
Diagnosis and treatment pitfalls
(From Dutch websites - treatment may vary from UK)
Might be worth contacting your Health Board and asking what B12 deficiency guidelines they refer to when treating children under 16.
If they give a vague answer, you could submit a FOI (Freedom of Information) request asking this question and asking for a copy or link to guidelines. Try to get the exact title of the document. Put FOI or Freedom of Information in search box on Health Board website which will take you to a page explaining the process.
They are likely to be reviewed this year due to new NICE guidelines and changes don't always mean better treatment.
May also be helpful to talk to local MP or MSP (Health is a devolved matter in Scotland). MP and MSPs website should list contact number or form for caseworkers.
Thank you, I have autoimmune thyroid and haemachromatosis. My mum has diverticulitis and nerve pain in one leg. Not sure about any of the other illnesses in older generations. I was on b12 injections as tablets tried for years didn’t help enough with my levels and my diet is very high dairy and meat . my son diet is limited but does have chicken or pork every day two meals a day. i was taken off b12 injections during covid due to covid lockdown rules . later when i asked to go back on them they said new rules in our health board meant long term b12 injections would only be given to people with pa positive test results . i knew at the time this was a bad policy but nothing i could do . i also struggle with their monitory of my thyroid issues and have asked for referral back to endo and they said no , so i don’t hold out much hope but i’ll work through all the info you’ve given me and see what i can do with a different gp at the surgery . Honestly sometimes feel the uk is so behind the times with autoimmune stuff . beyond frustrated . thanks again xx
I've added more about your situation as i thought if you had a PA diagnosis or coeliac etc diagnosis confirmed it might help your son.
"i was taken off b12 injections during covid due to covid lockdown rules . later when i asked to go back on them they said new rules in our health board meant long term b12 injections would only be given to people with pa positive test results"
A lot of forum members had similar experiences. Search forum posts with "Covid B12 injections stopped" to find similar stories.
PAS have blog posts from that period which might be worth reading. The one below has over 100 comments.
Maybe you could submit a FOI to your health board asking to see "new rules" that mean "long term injections would only be given to people with pa positive test results".
It's also possible to submit a FOI asking same question to your GP surgery website although be warned this might upset them and affect GP/patient relationship.
You could also submit your story to Care Opinion website.
Sometimes GP surgeries/hospitals etc will respond. Stories can be submitted anonymously. Some forum members have posted their stories. Put "B12 deficiency" in search box to find other stories.
They ask people to submit good and bad health experiences
Have you and your sister considered asking to have another IFA (Intrinsic Factor antibody) test? It's possible to get them done privately in UK although NHS GP may not accept results of private tests but a positive IFA result may persuade NHS to retest you.
I think Martyn Hooper, former chair of PAS tested positive on his third IFA test.
Maybe talk to PAS if you join, about B12 injections being stopped due to PA test not being positive.
actually they haven’t mentioned haemachromatosis because his basic iron measurement is on the low side but thanks for raising that., they could check his transaturation level. i was told both sons were to get the genetic test at 18 but might be worth querying it now .
I first went to GP with left hip/groin pain, lower back pain, daily diarrhoea and exhaustion. The doctor started by referring me for a check for bowel cancer on a 2-week pathway. Although a bit of a shock, I was glad that she was taking note of the possibility and the need to rule this out first.
It still took a while from eliminating cancer as the cause to get to identifying B12 deficiency. I also had low erratic ferritin and folate - although neither were ever below range. I was given B12 injections, the folate and ferritin treated for 3 months and retested. Vitamin D on prescription as osteoporosis of the spine was found. All of these worth getting checked and thyroid as well can struggle. All need monitoring as they can be difficult to maintain at healthy levels.
I have had other symptoms, but not this type of vision problem or nausea. I have seen them listed though, and legs not working properly, having to make physical and mental effort to walk - yes, certainly had that and read here about many having this far more severely/ constantly.
Bear in mind that a positive IFab (intrinsic factor antibody) test result, used to determine PA (pernicious anaemia), will only be positive for 40-60% of those with PA. For this reason, a single negative test result cannot be used to eliminate PA as a cause of B12 deficiency.
Has he had a gastroscopy and/or colonoscopy? This might help determine what is going on.
Thanks for your reply . no he hasn’t had any tests . he is a teenager and they put it all down to bad diet for a while now . these new symptoms have made the gp want to start testing more now.
Sleepybunny 's idea of GP looking up PAS website is a sound one. I would imagine that providing B12 treatment for teenagers could be quite daunting and guidance welcomed. Particularly since NICE have produced recent advice that excludes younger patients. Worth passing on link ?
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