One thing we know as gluten sensitives is that malabsorption of crucial nutrients is more than likely, and not just if you are coeliac and have flattened villi.
Auto Immune Damage to Stomach Parietal Cells
Gluten causes auto-immune damage. This auto-immune process can affect literally anywhere in the body. Two key areas it is known to affect are the parietal cells of the stomach, from which you produce your stomach acid and intrinsic factor, which you need to absorb B12, and the pancreas, where you produce your pancreatic enzymes and insulin.
Low stomach acid and low pancreatic enzymes means no breakdown of food which equals low nutrient levels and a buffet in your gut for bad bacteria and organisms. That’s why the stomach acid and enzyme factsheet is an important part of your Barrier Plan package.
B12 Deficiency Signs
Low intrinsic factor leads to a deficiency in B12. This then causes neurological problems like depression, numbness, tingling, migraine, fatigue, muscle pains/spasm and breathing difficulties (low red blood cells and consequent low oxygen), poor immunity (low white blood cells) and clotting disorders (low platelets).
The first main clues that should trigger a B12 check are chronic fatigue, depression and brain fog. Recognise it?! I think many do.
Here’s an interesting diagram from the GFS showing the pathway to some of the consequences of B12 deficiency:
Note there the changes to red and white blood cells and to platelets. I hadn’t realised this one and, funnily enough, I keep coming across it. Note B12 is needed for the production of your normal blood cells and platelets so could well be at the heart of blood cell changes in gluten sensitives.
The number of patients in whom extraintestinal symptoms reflect the initial manifestation is rising. Common symptoms are changes in blood counts, which can arise from changes in all cell lineages. Among these, iron deficiency anemia is very common, but also thrombocytosis and thrombocytopenia have been reported to manifest themselves within the framework of celiac disease.
Source:
Med Klin (Munich). 2010 Apr;105(4):249-52.
High B12
Another interesting point to make is the number of times I have seen high B12 on test results. I don’t really know what’s going on here but I do know that some coeliacs are found to have high B12 when you think it would be the opposite. This is believed to be down to some form of malabsorption or possible autoimmune problems with the liver in odd cases. My hunch is that it may look high but it’s not being used in the cells in some way. Do any of you know more about this than me, maybe? If so, please elucidate (ooh, big word for so late in the day!!)
Watch the B12 Video
I was pleased then to see Dr O at the GFS has produced a new video explaining all about B12 deficiency. (I shall have to make some of these myself as I have said the whole lot several times to patients and on here!) But, for now, he is doing it for me 🙂
Watch the 14 minute video and you will understand this process and pick up some useful tips. There are a couple of things to bear in mind, though, when you’re watching…
Testing
First, he recommends Spectracell testing for B12. I recommend a full anaemia test including active B12. You can see all nutrient tests here.
He mentions you can do methylmalonic acid (your GP can do this one) or a homocysteine check (extremely useful and a good indirect indication of a folate and/or B12 problem). You can do that one with fingerprick or blood.
Which Supplement – TGF Safe?
Second: He recommends his own Methylcobalamin supplement. Now, the problem with that is that I cannot guarantee this is TGF safe (and I have said this before about Dr O’s supplements – I think we are far more advanced on this subject than he is, I thank you!)
I have asked for labels of the products and note that the B12 he sells contains xylitol, mannitol and citric-acid, all of which, as we know mostly come from corn. I have received the response that all supplements Dr O sells are gluten free but I have not received any response to the questions of what those three ingredients are derived from (asked several times now). A familiar story, as we know, but it saddens me to get it from the GFS. Still, we can’t all be good at everything…his research and communication is superb but, as you know, if the supplements do contain corn-derived ingredients (which they undoubtedly will unless he has specifically taken steps to address this), it is my belief then they will contribute to symptoms and prevent healing. Not good. We need to share knowledge here!
So, I started the search for a B12 alternative. You would think this was easy, but NO!
I came up with one eventually of course (takes bow).
It is a usual Cyanocobalamin form so not quite as absorbable as methylcobalamin, but some is certainly better than none in this case! The one I would recommend you try is this one (pic above). It gives 1000mcg B12 per tablet so not as strong as Dr O’s at 5000mcg but at least it is TGF safe; you just need to take several to achieve the dosage. I am working on a liquid version of the methylcobalamin but it’s looking a bit shaky sadly. I’ll keep you informed.
So, there you have it. You start with a useful B12 video, you test to check your levels and you now also have a safe means of correcting any problems found since I have finally been able to list TGF safe iron, folate and B12 – yay!
Yes, when B12 test results appear high…it basically means it is not getting utilized efficiently within the cells metabolism and liver functions..High B12 on a test result in essence is indicative of a deficiency as the body can’t utilize it properly. .A sibling of mine had a gastrointestinal bypass and is suffering greatly with this issue…she will not listen in regard to gluten intolerance (long story)…personally, I strongly disagree with this surgery for most if not all patients. It is difficult to watch the deterioration.
I would imagine it is indeed, Red Moon. How sad. Thanks for your comment. I have been doing a lot of work on this so-called functional B12 deficiency – is fascinating and at last a reason why I keep finding high B12 on blood results when the person clearly has B12 deficiency signs. You can do a double-check test apparently to see if it is likely to be B12 deficiency even though blood levels look fine. Will be listing it shortly.
Yes, it is a bit complicated, but a red flag for sure…as it is a water soluble vitamin, as you surely know. It points to liver functions and or blood condition issues. Hopefully, you’ll get to the bottom of the mystery. Let me know when you find something out. Thanks.
Will post on it indeed at some point. One of the many issues to post about!
I hear you…I have so many drafts… well, we love what we do…all in time. You are a life saver! Thanks again.
Sweetie, nice thing to say, thank you. I have added B12 to the list of drafts!
My levels of B12 were on the high side but because of my symptoms & history my doc was willing to let me try the B12 (methyl form) shots. I am doing sooooo much better with B12 shots. My understanding is that the form of B12 tested in the standard blood tests is for Cyancobalamin which is a storage form & requires conversion by the body into methylcobalamin. If your body is unable to convert it then you get high blood levels on a test but you are deficient anyway in the useable active form (methylcobalamin). Another possibility is that the parameters of what is low, normal, high are not necessarily accurate for every individual.
That’s really useful comment, Dawn, thank you. And so glad to hear you are feeling better.
Not sure if this helps or if anyone is interested but for those struggling with B12 deficiency, I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption). Apparently it came out a month or two ago. Has anyone heard of it or tried it??
There is a blood test more widely available now to test for Active B12 which should give a much more reliable indication of true B12 status than the total B12 test. Hope this helps someone 🙂
Quite right, thanks, I have updated the post. The anaemia test linked to did actually include active B12 already, but the link needed updating so I’ve done that – and I’ve got the Spectracell tests now too. Ta for prodding me to change it!