Somebody, stop me!(The Mask)

Sorry I had to put that as my title, but since joining the online practice I can't help keep checking if my coeliac results are available! 'Maybe after the morning surgery, no ,well maybe during dinner, no, well maybe in the afternoon, no, evening?'. I'm not sure about you, but I want to WHY my vitamin B12 is low, Why am I not absorbing it as I should. I a healthy 42 year old woman, with a good and varied diet, so why?

I had my third loading dose today, after three hours, I just wanted to sleep! I couldn't, but I struggled to curb my 'nowtiness' (a northern saying: had to bite my lip a lot) I thought I was feeling better, I think that was more 'wishful thinking' than anything else! I've also been trying to analyse my blood results, not just the vitamin B12, above high, below low reference level, driving me mad!

19 Replies

  • By the way, my vitamin B12 wasn't high, it's me ranting, sorry. 152my/L range 170-730. Red blood cell - below, Platelets high, MCV high, MCH high, RBC distribution high. Not sure what it all means. Ta for reading! Rant over!

  • Greenbexy - I understand "nowtiness" (I am a Lancastrian). B12 deficiency can make you really grumpy. Consider the possibility that your stomach is not acid enough. This means that it cannot properly strip the cobolamin (B12) molecule from the meat that you eat. Also the possibility that you are not producing enough Intrinsic Factor from your stomach wall to bind to the cobolamin molecule. If this does not happen the B12 will not reach your ileum (lowest part of your small intestine - just before your appendix) where it is absorbed into your bloodstream.

    Strangely enough low stomach acid can present as acid reflux into the gullet and falsely indicate that the stomach is TOO acid. If you are then treated with acid reducing medication you will get a short-term benefit (it will burn your gullet less) but a long term dis-benefit as it is likely to make the B12 situation worse.

    If you do have coeliac you may have a classic case of mal-absorption. I am afraid that it is hunt-the-thimble to find out what is causing your digestive disorder. Wheat is obviously top of the heap when considering the Usual Suspects. Have you been checked out for a standing Helicobactor pylori infection in your stomach? This is worth doing - particularly as you are having digestive disorders.

    Nice to see that you have not lost your sense of humour despite the "nowtiness".

  • Thanks for the reply, and definitely 'hunt the thimble' scenario as I looked on line this evening at my results and it would be unlikely to be coeliac. Back to the drawing board it is then!

  • It's extremely unlikely that coeliacs disease, if you have it, will have caused your low B12 (I don't think there's any real evidence for it). It's much more likely that your absorption problems are due to pernicious anaemia.

    Have you been tested for anti-IF (Intrinsic Factor) antibodies?

    Oh, and your blood results are consistent with macrocytic anaemia - which can be caused by low B12.

  • fbirder you may find this article of interest re links between coeliacs disease and B12 deficiency

  • Yes, it is interesting. Mainly because it shows that the only thing they examined where there was no significant difference between coeliacs and healthy controls was - B12.

  • sorry - have read several times and can't see any reference to comparison of CD and healthy controls. there is a reference to there being no significant variation between men and women in relation to B12. Have I missed something?

    Looking through the references on most refer to the need to evaluate B12 status in Coeliac patients who have been newly diagnosed as absorption problems appear to be significantly increased even in the absence of autoimmune gastritis.

  • I agree. Multiple times the authors discuss nutritional deficiencies connected to celiac, including b12.

    There was also some b12 deficiency in the healthy control group, maybe that's what fbirder is thinking about. But the authors do discuss how celiac can lead to b12 deficiency, and that b12 status should be monitored in celiacs.

    It's not as simple as saying there is no significant difference between the celiacs and the control group.

  • What I was referring to was exactly what I said, and no more. This study showed no significant difference between the CD and control groups.

    The results in Table 3 show that the B12 deficiency was found in 19% (15 out of 80) in the CD group and 17% (4 out of 24) of the control group. While it's impossible to do proper statistics without the raw data, I can tell you for certain that there is no way at all that this constitutes a significant difference.

    Indeed, if just one of the non-deficient control group had had slightly lower levels then it would have been 5 out of 24, or 21% deficient. And we all know how inaccurate the B12 serum test is.

  • Yes I understand, but it does not necessarily follow that b12 deficiency is never likely to be due to untreated celiac disease, though.

    It's my understanding that b12 deficiency, when occurring along with multiple other deficiencies, possibly points to celiac. That's supported in the discussion in this article.

    The authors don't discuss the lack of significant difference, but they do talk about how celiac can affect absorption, including b12.

    This may not be relevant to greenbexy though.

  • As I've replied earlier, it's not coeliac, which is a good thing (don't think I could cope without a chip bitty or a pie now and again) Yes I have the intrinsic factor test - normal. I know that the test isn't very accurate. What do I do now? Where do I go from here? What can I eliminate next?

  • Pernicious Anaemia is the result of mal-absorption -of B12 not the other way around. Coeliacs disease can cause inflammation (and therefore malfunction) anywhere in the intestinal tract including the ileum. Greenbexy has a digestive disorder and malabsorption. It would be unwise to be a one-trick-pony and say Helicobacter is the only possibility of being the mischief maker. All the possible vectors are in play until ruled out. I think that the old medical maxim applies here: "Absence of evidence is not evidence of absence".

  • No.

    Pernicious Anaemia is an autoimmune attack on the stomach cells responsible for the production of Intrinsic Factor or on IF itself. It is the cause of malabsorption, not the result of malabsorption.

  • I think that we are at odds here over terminology. Pernicious anaemia is what it says on the tin: an anaemia that is pernicious (dictionary definition "having a harmful effect, especially in a gradual or subtle way.") It has nothing to say about causal factor. The cause may be autoimmune, HP infection, genetic predisposition to malabsorption, coeliac disease or other intestinal malfunction (colitis or Crohn's) - it could be a vegetarian diet or meat consumption that is deficient in B12 (meat raised in a CAFO on sterile feed). Any one can lead to a deficiency in B12 and thence to Pernicious Anaemia. You simply cannot say that PA is an autoimmune disorder. The most that you can say - is that an autoimmune disorder is one possible cause.

  • I think that we are at odds here over terminology.

    Yes, we are.

    I like to use the correct medical definition.

    According to your definition a lot of people with Pernicious Anaemia (the autoimmune disease that stops B12 absorption) don't have pernicious anaemia - because they don't have any type of anaemia (dictionary definition: a condition in which there is a deficiency of red cells or of haemoglobin in the blood).

    You simply cannot say that PA is an autoimmune disorder

    I can, and I do. As do the whole of the medical profession. Your Humpty-Dumpty like attempts to redefine words (“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”) don't change the meaning of the term for the whole of the rest of the world.

  • strictly speaking fbirder is correct - PA is an autoimmune condition that is the most common but by no means the only cause of a B12 deficiency.

    The symptoms of PA are the symptoms of the B12 deficiency it causes, so will be the same as the symptoms caused by other absorption problems, and also the same as the symptoms caused by a dietary deficiency.

    Unfortunately there is a tendency of many GPs and others to use PA and B12 deficiency as if they are interchangeable - which may be lack of understanding of both PA and B12 deficiency and its causes. The guidelines are a bit ambiguous and can be interpreted by some as saying that on-going treatment is only needed if the absorption problem is PA. This can be rather disastrous for patients - particularly when the test for PA itself is prone to false negatives about 50% of the time - leading to treatment being withdrawn. Some other absorption problems are treatable - h pylori being one, but others aren't and tracking down exactly what the problem is can be extremely difficult.

    PA is a name that was coined before the underlying mechanisms that caused this particularly form of anaemia were understood - quite some time before the discovery of B12 ... and it is perfectly possible to have PA without having any anaemia. The fact that GPs so often dismiss it as a possibility if macrocytic anaemia isn't present is another major cause of mistreatment. Neurological symptoms precede haematological effects in at least 25% of cases and left untreated the neurological damage caused by the B12 deficiency can become permanent. This is covered in the BCSH guidelines.

  • Sounds like your stomach is not absorbing nutrients and the Intrinsic Factor thing. I have both of those. And I have really bad GERD and have been on Prevacid for at least ten years but my blood test read that I had high acid. I have researched everything, had an upper and lower scope, work with the gastrinologist, cardiologist, primary doctor, (new as of last week) have a terrific bone health specialist that found this whole pernicious anemia thing. There is hope!! In just FOUR weeks by taking one spray in the mouth of Garden of Life Methyl B12 spray, eating three figs a day, one organic banana, 3 to 6 prunes, I like the ones with the orange in them, green tea, ginger tea, raw honey, etc. I have raised my b12 from 105 to 433 and my vitamin D from 13 to 19! It might sound like a lot of different things but that's so easy to do so and inexpensive and it at least is working for me! I feel so much better already. All of these things have to do with the b12, the vitamin D, & the digestive system. I don't know if you feel like trying any of that but if I can help you, it is sure worth a try! I wish you all the best because I truly understand how this takes over your life. But my brain fog was gone within 4 days after taking that mouth spray! And it had been there for literally months. I wish you all the best and if you have any questions please private message me I will be more than happy to help.

  • I'm sorry but I don't understand, I was under the impression that vitamin B12 deficiency was what caused PA, not the other way round. I thought I would have to find out the cause of why I wasn't absorbing Vitamin B12 which would be my answer to why I need to have these injections. Please if you need to reply and explain to me my misunderstanding don't use acronyms and use layman's terms please. I have some medical knowledge, but not being familiar with PA (as I now it is known as!) I didn't know about any of this until three weeks ago!

  • Pernicious Anaemia or not seems to be the question here...

    To correct:

    Pernicious Anaemia is an autoimmune disease that causes B12 deficiency.

    It is one of the causes of B12 deficiency; there are lots of those (including coeliac)

    A B12 deficiency can lead to anaemia (lack of healthy blood) and or macrocytosis (red blood cells become too large). But it does not always lead to it. You can have B12 deficiency (and PA) without either.

    Vitamin B12 is ‘extracted’ from food by Intrinsic Factor. A patient who produces antibodies that ‘kill off’ the Intrinsic Factor is diagnosed as having Pernicious Anaemia.

    Whilst B12 will correct a patient’s anaemia and therefore save his or her life, the patient will still have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and so perhaps it is time to replace the diagnosis of Pernicious Anaemia with this more accurate description of their condition.



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