Recently Diagnosed Coeliac with Pernicious Anaemia Needs Help!

Hi! Apologies in advance for my long post!!! l am a 35 year old Irish female who has lived in Canada for the past 5 years. In January 2015 l was diagnosed with coeliac disease and pernicious anaemia. My coeliac disease was undiagnosed for years therefore leaving me with severe villi damage and malabsorption. My iron (ferritin?) was 3 and was B12 was non-existant. l was put on one a week (for three weeks) iron infusions and once weekly 1000mcg of B12 for four weeks with B12 injections to be continued once monthly thereafter. l am also on 3000ui (down from 6000ui) of Vitamin D daily which is taken orally as per the GI's instructions. l suspected malabsorption was continuing as my stools have been bulky, slimy and often foul smelling (sorry!). Every month coming up to my B12 injection, l have felt tightness in the chest, struggles to catch my breath and overall fatigue which generally improved after l got the shot. However, in mid-July l starting noticing a loss of coordination and power in my right hand (especially the outer three fingers). This then spread to my right wrist, elbow and shoulder. lt felt as if my arm was going dead. It continued on to my left side which then resulted in pins and needles, heavy limbs, numbness, excessive brain fog. It's been two weeks and all l can describe is an avalanche of symptoms. l honestly feel as if l've been hit by a bulldozer and the doctors are unsympathetic. l went to the Emergency Dept last week as my symptoms were escalating and they ordered an immediate brain MRI. The doctor on call was worried it was MS and l was suspicious as l'm displaying so many similiar and worrying symptoms. Thankfully it came out clear. Though l don't know if that's conclusive proof that l don't have it? Now l have concentrated pain in my lower back, my appetite is poor, l'm losing weight, intermittent pins and needles, cold hands and feet (sometimes), hip stiffness (especially right side), fatigue, difficulty concentrating, light sensitivity, brain fog so bad that l am not confident driving the car as l need power to manage the pedals and control steering. lf l mention B12 absorption to my GP, she's dismissive. l haven't a clue whats happening. She did recent B12 blood levels and l didn't get the result back so l presume it's normal. Are my neurological issues related or unrelated to my recent diagnosis? lt seems to have happened all of a sudden over the past two weeks. l had a B12 shot last week which helped alleviate some of my symptoms but they are not gone entirely. Any feedback would be greatly appreciated!

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  • I'm so sorry you are feeling so unwell and nobody seems to be listening. Your B12 was unbelievably low and most likely because of the undiagnosed coeliac disease causing absorption problems putting you in the high risk category for B12 def. It would seem that you were not adequately treated to begin with, causing you now to have neurological symptoms. It is essential that you receive more frequent injections as there is a short window of opportunity before neurological symptoms become irreversible. The symptoms can mimic MS.

    I know you are in Canada but I hope this extract from the BCSH guidelines will help persuade your GP to take your symptoms seriously:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    There is also a debate going on in the House of Lords:

    "To ask Her Majesty’s Government what action they are taking to address the problems associated with the late diagnosis of perniciousanaemia, in the light of the results of the survey published in the British Nursing Journal in April 2014.

    To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed. Countess of Mar - Crossbench"

    theyworkforyou.com/wrans/?i...

    Other helpful links:

    b12deficiency.info/films (useful templates on this site for writing to your GP)

    The latest BMJ research document with useful summary:

    cmim.org/pdf2014/funcion.ph...

    In the meantime until you can get more frequent injections, you could try supplementing with Jarrows Methlcobalamin 5000 mcg sublingually - available from Amazon - good reviews for neurological symptoms.

    Best wishes for a good outcome.

  • Bless you for your quick reply! l actually got a call from my doctors office today asking me to come in as blood work has come back. She tested me for B12, folates, inflammation (suspected rheumatoid arthritis) and two other things! l don't know how the neurological symtoms can be attributed to B12 without proof. ls there a test? The next available appointment to see a neurologist is May 2016! l'm visiting my family doctor tomorrow.

  • All the latest research states that patients should be treated on symptoms as there is no gold standard test and your symptoms are classic neurological signs of severe deficiency.

    ukneqas-haematinics.org.uk/...

    "In 2013' National External Quality Assessment Service (NEQAS), the body that oversees the quality of laboratory testing in the UK, issued the following alert:

    False normal B12 results and the risk of neurological damage : B12 assays may be vulnerable to interference resulting in normal values despite cobalamin deficiency. Where there is discordance between the clinical features of neuropathy, parasthesiae, loss of position sense, or megaloblastic anaemia and a 'normal' B12 result - clinicians are,advised to request storage of serum for further testing and are advised to treat the patient with B12 replacement therapy.

    Further testing may include repeat testing by an alternative B12 assay, hologram cobalamin assay, serum methylmalonic acid and measurement of intrinsic factor antibody. Treatment with B12 should not be delayed to avoid progression of neurological damage...

    In other words, if a patient has suspected nerve damage due to possible PA or low B12 levels yet the test shows a 'normal' B12 level, doctors are advised to ignore the test result and commence replacement therapy with B12 injections in order to prevent any further neurological damage."

    ......

    "Tingling felt in the hands and feet can be the first sign of nerve damage due to B12 deficiency (reported by 65.7 per cent of respondents), and can lead,to numbness in any part of the sufferer's body, but is felt usually in the feet."

    ............

    cmim.org/pdf2014/funcion.ph...

    Points from the Cmim/BMJ document summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    The above UK research document is supported by many research papers and is peer reviewed. It tells your GP that, once b12 treatment is started, test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

  • @ Polaris Thank you for your in-depth reply. Are you a doctor? Medical professional? Fellow sufferer? l hope this can be resolved. l just don't want to be dismissed as being a hypochondriac as l am the total opposite. l just know that my body is in freefall and l am just hoping my GP will listen to my concerns tomorrow! l'm a different person to the one l was a fortnight ago.

  • Not a professional but had to research intensively to battle my relative's misdiagnosis of ME and dementia - now doing well on monthly injections and Jarrows. GPs generally do not recognise the severe neurological, psychological and physical damage that can occur when this deficiency becomes severe and too often just treat individual symptoms with drugs or misdiagnose as another disease - ME, MS, dementia, psychosis, etc. - without getting to the root cause - B12 - and, in your case, probably other vital nutrients not being absorbed. B12, however, is one of the most difficult as it has many complicated processes to go through in the absorption process.

    Don't be fobbed off MarMcl and, if all else fails, many people on this site self inject successfully.

  • Hi Polaris. Many thanks for your advice. My blood results came back and the doctor said my B12 was very good, iron on the low side (apparently normal for menstruating women?), no arthritis detected but that my folates were low. l then asked about the vitamin d that l'm taking (3000ui orally, daily) and she dismissed what l was saying. She said l was reaching at too many things and not all vitamin deficiencies were responsible for my symptoms. She advised me to take an oral folic acid supplement but then l asked her how would it get absorbed if l have malabsorption? She said some would get through. Regarding self-injecting, you advise 1000mcg every other day until improvement? What thereafter? Back to once monthly? l've read that liquid B12 injections are linked to early Alzheimers? l guess its the chemical that it's carried in? Are some chemicals better than others. The one l use is cycanocobalamine. Also, the once monthly injection l get from the nurse is administered using a tiny needlepoint. l asked a pharmacist and he advised at least 0.5mm x 25mm needlepoint as anything less just goes under the skin as opposed to intramuscular. The nurse uses nowhere near that to administer.

  • As Hidihi has already said, once neurological symptoms manifest, an aggressive response in the form of more frequent B12 injections is needed, as there is a short window before symptoms become irreversible. I can't stress how important this is and, once B12 treatment is begun, blood tests are irrelevant as they only measure B12 in the blood and not whether it is absorbed into tissues. It is the fact that you still have neurological symptoms that is important. Is it possible to change your doctor or write to her with the research and guidelines already given, as she does not appear to be aware of the latest research or the drastic consequences of not treating adequately?

    In the UK, Hydroxocobalamin is used in injections. Cyanocobalamin is the cheaper form and has to be converted in the body. There are many people on the site more informed about self injecting. I hadn't heard that liquid B12 causes Altzheimer's. It would seem there is more risk in B12 deficiency, as it causes symptoms that mimic Altzheimer's - my sister was misdiagnosed with ME for years and then dementia - it turned out to be severe B12 deficiency and I can't bear to think of the consequences if we hadn't insisted on B12 injections.

  • Good for you for championing your sister's recovery! Just shows that you can't always accept everything a doctor says as gospel. ls your doctor as ill informed as mine as to the scary consequences of this deficiency? l was feeling very bad two nights ago, so much so that l went to a 24 hour pharmacy and got a bottle of B12 and a syringe. Came home and got my husband to inject me at 2.30am! Went to bed and much of the terrible ache in my lower back and spine had subsided yesterday. Interestingly, l'm now starting to feel achy again and l read that the B12 l use has a span of only 24 hours in the body so l'll get him to inject me again when he gets home. l'm also thinking of getting injectable folic acid and vitamin d as l can't imagine ingesting them orally would be of much benefit. My husband has a new job opportunity arising so l'm hoping that, if we move across town, l can change doctors.

  • It's great that you can just go out and buy B12 and inject MarMcl...

    Oh dear, back to the folic acid debate! If you watch the B12def. film already given, there are warnings about treating neurological symptoms of B12 with folic acid and, although your levels are low, to be on the safe side, I would treat with B12 first.

    rivm.openrepository.com/riv...

    "Comment by Authors :

    "The studies cited above demonstrate that treatment of vitamin B12 deficiency subjects with folic acid is a false and dangerous therapy, as it does not prevent the neurological damage induced by vitamin B12 deficiency supplementation with folic acid at daily doses less than 5mg. However, it has been rarely associated with a direct adverse effect on vitamin B12 deficiency associated with vitamin B12 associated neurological damage.

    Anyway, the best treatment for vitamin B12 deficiency subjects is supplementation with vitamin B12 and not additional folic acid."

  • There is no 'test' that will say one way or the other whether the symptoms are down to B12 or there is something else going on - or even that there is B12 AND something else going on - aside from trying B12 and seeing what it does.

    One possibility is functional B12 deficiency caused by anti-bodies to TCII - which is the form the body uses to get B12 to the cellular level. One study in Denmark (I think) implied that as much as 30% of the population may produce antibodies to TCII if serum cobalamin levels are high. The only effective way to treat it appears to be frequent high doses of B12 (my theory is that it is flooding the body with so much B12 that the body can't produce enough anti-bodies to stop it all getting through).

    Will add links to an article and an abstract that may be of use when I'm on another machine as haven't bookmarked them on this one.

    This might fit with your experience as it has probably taken a while for B12 to get to the point where your immune system is starting to function properly again.

    I'm pretty sure that I have a functional deficiency problem as I find my symptoms start to return within 24 hours of a shot.

  • @Gambit Thanks for your insight. My symptoms seem to have hit me all at once as opposed to gradually building.

  • These are the links to the articles I was referring to

    qjmed.oxfordjournals.org/co...

    ndcn.ox.ac.uk/publications/...

  • Thanks much!

  • Based on the fact that you're in Canada, there is a bit of good news which is offset by a bit of bad news.

    The good news: Injectable B12 is available over the counter at Canadian pharmacies. You don't have to have a prescription to go buy some. You can also purchase the needles to inject it.

    The bad news: There has been a shortage of cyanocobalamin for awhile now and you may find that every pharmacy in your area is out of stock. The other hurdle is that it is really best to learn how to self-inject from a trained professional. (Although there are some decent instructional videos available online.)

    If the problems are not B12 related (although I feel pretty certain that they are), I hope your doctor manages to find the issue and treat it quickly. Considering how bad off you were by the time they finally found the celiac disease, you may have to beat them over the head a bit with the fact that you cannot yet absorb nutrients normally. I understand that it takes a long time for the gut to heal from celiac damage. You may have to remind them that simply getting a diagnosis doesn't magically cure you.

  • Thanks Galaxie. So nice to be listened to and to get advice as opposed to being dismissed when l try to offer alternatives. Thanks for the heads-up regaring the pharmacies as l actually didn't know this! My blood results came back and the doctor said my B12 was very good, iron on the low side (apparently normal for menstruating women?), no arthritis detected but that my folates were low. l then asked about the vitamin d that l'm taking (3000ui orally, daily) and she dismissed what l was saying. She said l was reaching at too many things and not all vitamin deficiencies were responsible for my symptoms. She advised me to take an oral folic acid supplement but then l asked her how would it get absorbed if l have malabsorption? She said some would get through. Regarding self-injecting, you advise 1000mcg every other day until improvement? What thereafter? Back to once monthly? l've read that liquid B12 injections are linked to early Alzheimers? l guess its the chemical that it's carried in? Are some chemicals better than others. The one l use is cycanocobalamine. Also, the once monthly injection l get from the nurse is administered using a tiny needlepoint. l asked a pharmacist and he advised at least 0.5mm x 25mm needlepoint as anything less just goes under the skin as opposed to intramuscular. The nurse uses nowhere near that to administer.

  • I'm definitely not qualified to answer all of the questions you're asking so, hopefully, someone else can jump in also. I haven't heard about the Alzheimer's link with B12 injections, so I'll have to go look that up.

    Low folate will contribute to the body not being able to use the injected B12 as effectively as it should. There is injectable folic acid. I know this because I've had injections where B12 and folic acid were mixed together at the time of the injection. You should probably ask the doctor about that because it is a bit crazy that he or she expects you to absorb it from a pill. You might be able to absorb a little that way, but you'd have to take massive amounts to absorb enough to actually raise your level.

    Cyanocobalamin is the form most commonly used in North America. There are a couple of other forms, but you'd most likely have to get them from a compounding pharmacy (which can be kind of pricey). One of the other forms is hydroxocobalamin, which is the form most commonly used in Europe.

    Cyanocobalamin gets its name because the B12 (cobalamin) is attached to a cyanide molecule. B12 inactivates cyanide, so this combination is not considered harmful - although it is not recommended for heavy smokers, people who have a lot of exposure to cyanide (such as in the workplace), or for people who have a family history of Leber's Optic Disease. The two main benefits of this form are: It is fast acting and it is shelf-stable (meaning it does not require refrigeration). However, it is light sensitive and should not be left out in the light for very long.

    Hydroxocobalamin does not contain cyanide. It is used, aside from treating B12 deficiencies, as an antidote to cyanide poisoning. Hydroxocobalamin is not as fast acting as cyanocobalamin but it lasts in the system longer. It does require refrigeration though. It is also light sensitive and should not be left out in the light for very long.

    Both the cyano and hydroxo forms have to be converted in the body into one of the forms that is actively used by the body. Those forms are methylcobalamin and adenosylcobalamin. It is only recently that pharmaceutical versions of the two active forms have become available. The methyl and adenosyl forms are light sensitive and require refrigeration as well. They are pretty much exclusively obtained through compounding pharmacies as there aren't any large scale manufacturers at the moment.

    There is a bit of trial and error involved in figuring out what version of B12 will work best for you. Despite the one-size-fits-all form of treatment we tend to receive, we are all different and some people respond better to one form over another.

    My brain is having difficulty converting between the English and metric system today so I can't help out much with the needle sizes. I will say that cyano can be administered subcutaneously, but many (including myself) who've tried that route (as opposed to intramuscular) have found that they needed injections more often. So if the nurse is not correctly administering the IM injection, that might also add to it wearing off faster.

  • Cheers Galixie! You guys are an encyclopaedia on all things B12. l don't know what l'd have done had l not stumbled upon this forum! l will look into the longer lasting form of B12 but l don't know if its available in Canada. Heading to the pharmacy later to get some more syringes and to enquire about injectable folic acid. l was feeling very bad two nights ago, so much so that l went to a 24 hour pharmacy and got a bottle of B12 and a syringe. Came home and got my husband to inject me at 2.30am! Went to bed and much of the terrible ache in my lower back and spine had subsided yesterday. Interestingly, l'm now starting to feel achy again and l read that the B12 l use has a span of only 24 hours in the body so l'll get him to inject me again when he gets home. l feel at sea as the doctor hasn't a clue and insists that l ignore some of my symptoms. How would l have managed to diagnose any of this pre-internet? Sending out much gratitude coupled with hugs!

  • I took a look at the label on my IM syringes last night. I use a syringe that holds 3ml. The needle is 25 gauge and is 1 inch long. In parentheses the needle size is listed as:

    (.05mm x 25mm)

    So it sounds like the nurse is probably using the correct size needle for IM injections. You would likely only need a longer needle if you were quite a bit overweight. I'm not particularly dainty myself and that size needle works fine for me. :)

  • Hi MarMcl. i'm so touched & impressed by your stoic equilibrium in handling this dilemma. you're doing an amazing job by staying some much in control. my heart goes out to u as well as my thoughts/support.

    i can't offer much more that what the others have suggested. Gambit & Polaris are life saving ''walking cyclopedias'' on the ins/outs of this subject so, i can only concur fully with their informed advice. my own back to b12 equilibrium experience might help.

    coz of the nature of PA, i.e. once the symptoms start to escalate & express themselves in neurological terms, it really does need immediate & heavy handed intervention i.e. as all the professional bodies suggest, IM injections on alternate days until there is no more improvement.

    i was interested to read re the 'suspected' cardiac symptoms - chest tightness & shortness of breath (SOB). for me these were very marked. my B/P dropped from a healthy 130/70 to 70/50 & lower with collapse. it stayed there (low) until i got the b12. coz of my age (not old enough) the medics were not seeing the symptoms through ''cardiac'' eyes.

    however, through the help of an Environmental Doc, i intervened with 0.5 mgs of b12 subcutaneous injections on alternate days x roughly 6 weeks, and then as required afterwards. i think it saved my life as my pulse used to drop to the low 40's by evening and my B/P sometimes so low it was unreadable. i was in and out of consciousness & felt i could ''off'' if i let things be. however, whilst , i'm back b12 equilibrium, it wasn't entirely a straight forward process. this forum was MOST helpful with suggestions, information, encouragement etc. and it's still a work in progress.

    i hope you've been able to arrange the gluten free diet which will make a positive difference. it would also be advisable to have your thyroid (T3, T4 & TSH) - thyroid stimulating hormones- tested, as well as being tested for diabetes. PA is an auto immune disease and other systems are likely to be also similarly affected. i have the lot. coeliac, thyroid, RA etc seem to have an above average incidence amongst the Celtic genes - apparently something to do with the sudden change from a primarily ''potato'' based diet to an almost exclusive ''corn'' based diet during the 1840s -50's famine in Ireland. it might be a good idea that other family members also get tested.

    like u, i couldn't put on weight until i had b12. now i'm trying to curb weight gain. re: nutrition, i wasn't able to swallow solids due to loss of swallow reflex. i did ''cold press'' (slow) vegetable juicing. that flooded my system with nutrients & antioxidant. even though, i more than likely had mal-absorption problems, some of the nutrients definitely got absorbed. if you're up to it, it could help your energy.

    i do hope the primary health care Doc gets informed about the many ramifications of low b12 & gives you the injections on alternate days until there is no more improvement. if not, i'd self-medicate. sub cutaneous injections are easy. there are lots of videos on Y tube that demonstrate safe practice. however, i consider it's important to have some kind of health care professional monitor your progress. perhaps a good experienced naturepath would be a good alternative to a GP if the GP doesn't play ball.

    during the healing process, my symptoms got worse before they got better. this seems to happen for some ppl as the b12 kicks in and kick starts the healing process of the damaged nerve. the b12 condition & treatment are incredibly individual & non linear. for many ppl, they need constant tweaking along the recovery journey. the ''blanket'' treatment doesn't work well for us lot in this respect.

    all good luck & warm wishes on the recovery program.

    H

  • Hey Hidihi! Thank you so much for your wonderful, and informed, response. l am glad that you have found your 'equilibrum' so to speak but its a shame that it took you such a long time to get there! This really is unfamiliar to me as l'm used to listening to doctors orders and following it to the letter! Many thanks for your advice and, yes, l have been following a gluten free diet since my diagnosis. My blood results came back and the doctor said my B12 was very good, iron on the low side (apparently normal for menstruating women?), no arthritis detected but that my folates were low. l then asked about the vitamin d that l'm taking (3000ui orally, daily) and she dismissed what l was saying. She said l was reaching at too many things and not all vitamin deficiencies were responsible for my symptoms. She advised me to take an oral folic acid supplement but then l asked her how would it get absorbed if l have malabsorption? She said some would get through. Regarding self-injecting, you advise 1000mcg every other day until improvement? What thereafter? Back to once monthly? l've read that liquid B12 injections are linked to early Alzheimers? l guess its the chemical that it's carried in? Are some chemicals better than others. The one l use is cycanocobalamine. Also, the once monthly injection l get from the nurse is administered using a tiny needlepoint. l asked a pharmacist and he advised at least 0.5mm x 25mm needlepoint as anything less just goes under the skin as opposed to intramuscular. The nurse uses nowhere near that to administer.

  • Hi,

    I hope you get the help you need.

    These links might be helpful.

    pernicious-anaemia-society....

    b12deficiency.info/

    b12d.org

    b12awareness.org/

    Useful books

    Could It be B12 by Sally Pacholok

    Pernicious Anaemia: The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    Found this link to Canadian guidelines on B12 deficiency

    guideline.gov/content.aspx?...

  • Forgot to add that if it's possible then it can be helpful to get paper copies of blood test results. In the past I have been told results are normal then have found some were not when I got copies.

  • Thank you so much!!! lts getting the professionals to listen is the problem.

  • "lts getting the professionals to listen"

    I certainly agree with this. I've been symptomatic for many years and never found someone really willing to listen. I resorted to treating myself.

    "l've read that liquid B12 injections are linked to early Alzheimers?"

    I'd be interested in a link if you have one to this. I have read that low B12 is linked to earlier development of dementia.

  • I must find that article. Once I do, I'll link to it!

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