Hi there, I've had dairy, soya and alcohol intolerances for over 5 years. Recently I've had anaemia, folic acid deficiency, low b12 and have also been diagnosed with chronic kidney disease. After tracking my symptoms and doing a load of research I decided to give up gluten (despite celiac test coming back as negative) I've now been gluten free for about 2 months and have noticed a huge difference. No GI issues, mouth ulcers all gone, generally feel better. Have blood tests in a few weeks and am hoping all those will have improved to. However, yesterday evening when cooking I accidentally ate one piece of pasta that was meant for my son instead of my GF pasta. Today my mouth feels like it's been sandpapered!! Ulcers back and have been feeling very bloated and windy. My husband thinks one piece of pasta couldn't possibly have that much of an effect, but I'm not so sure. Does anyone here have any insight into this? Could it have such an immediate effect? Thanks in advance!
Can one piece of pasta cause problems? - Gluten Free Guerr...
Gluten Free Guerrillas
Tell hubby that yes one bit can have a very dramatic and immediate effect for some people, certain fb sites are full of such stories.
I agree with the others. In view of your symptoms, it's also worth looking at the websites b12d.org (especially videos here) and b12deficiency.info
Yes I've been looking into that too. I'm monitoring it at the moment. My B12 in March was 293 (range 180-700). My doc wasn't bothered by that as I was actually deficient in folic acid and was also anaemic and she wanted to concentrate on that, but I read that B12 is best over 400-500, so I self prescribed and took B12 tabs. I got my levels up to 500ish in June. I've not taken any B12 since June and am having monitoring blood tests in October. If my B12 has gone down again I will discuss with docs as I eat a lot of red meat, eggs and fish so I shouldn't have a problem with dropping levels. Thanks!
Hi, oh wow I think your levels were really low because the NHS is way out of date on this if you look at the sites I suggested. Also, in people who don't metabolise it properly (probably quite a lot), you can apparently have high blood serum levels but it isn't actually where it's needed in the body- or something like that.
I find I feel a lot better for taking B12 for a few weeks every now and again. I had constant anaemia for 40 years at least before coeliac was diagnosed. Another issue is to get your ferritin (iron storage) levels checked and get the actual number from the doctor not just a 'it's fine'. Many doctors ignore this but you should be a minimum of 70 and it affects mental functioning and a host of other things if it's much below that. never assume you will be told if it's low. Mine was 5 and lower and they never did anything. I am so much better now it has slowly climbed to the 40s after years of trying but they can give iron infusions to raise it quicker.
I really recommend that you continue to check everything for yourself as you are doing.
We sound very similar. I haven't been diagnosed as celiac (although am definitely gluten sensitive) but I've had exactly the same problems with b12 and ferritin. When I was finally diagnosed as anaemic my ferritin was down at 8 (as well as the low b12/folic acid) and boy did I feel terrible! I could barely function. I've discovered over the past 2 years that the NHS is woefully ignorant when it comes to nutrition and vitamin deficiencies. I think I've bored my family with my ranting I've educated myself and am taking evidence to my doctor and paying for private blood tests to monitor my situation now. I've found a good doctor that will listen (as opposed to the one I originally saw 2 years ago that told me my symptoms were in my head!), and I always insist on seeing her now. It's not a good situation, but thank god for the internet otherwise we wouldn't know all this stuff.
Thanks for your thoughts.
I absolutely agree with all you say - and especially that bit about the internet! It amazes me how ferritin gets ignored. A private doctor has just been appalled that the NHS accepts my partner's ferritin of around 30 as 'fine', even when he has a heart arrhythmia and low white cell count! I am diagnosed as coeliac but I have a friend who has coeliac in her family, didn't come up as coeliac on the tests herself, but was ill all the time and now she's off gluten all her illnesses and constant discomfort have gone. Call it 'sub-clinical' or whatever but it's all shades of the same thing.
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