So after posting earlier about all the symptoms I had been having and problems with getting an answer as to why my B12 keeps dropping I've been back to the doctors yet again. Today I've been told to come back in 4 weeks (been doing this for over a year) and I have to try a lactose free diet because my GI symptoms look like I may be lactose intolerant (I know I'm not) . I asked how this is linked to B12 deficiency and apparently it's not. After doing a bit of research I've found that going lactose free can actually cause B12 deficiency !!
I asked about retesting for PA and they can't because apparently I don't have it. I asked about autoimmune megoblastic atrophic gastritis and apparently I can't have that because it would have shown up on the endoscopy and I would be REALLY ill as opposed to only slightly I'll I presume!
So here I am another 4 weeks to wit and at my wits end I've been trying to get answers for over a year!!
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LSiddall
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it would be useful to know what references you had for going lactose free causing B12 deficiency and what scientific evidence is backing up the claim. B12 is only found in animal products - which includes dairy - so if dairy is your main source of B12 because you are a vegetarian and you cut it out then there is a risk of B12 deficiency. However, if your diet has other forms of B12 in it - eg fish and meat - I would be surprised if going lactose free would cause a B12 deficeincy on its own - so would be interested in research that shows the opposite.
It may be that your GI problems are a sign of low stomach acidity - which would also mean that you aren't able to absorb B12 from your diet - and would have a lot of problems with other essential minerals and vitamins as the gut just won't be as efficient as it should be.
Unfortunate that the PA test has been ruled out - probably evidence that the GP isn't aware of how unreliable that test actually is.
Did you share the materials that fbirder pointed you at last time with your GP?
Do you have details of your blood tests and relation to when you have had your B12 shots. People vary significantly in how well their kidneys remove B12 from blood so it may just be that your kidneys are very efficent and you need more frequent B12 shots as a result.
I haven't gone lactose free. I was diagnosed with B12 deficiency last year and after ruling out coeliac and aupposedly PA the doctor doesn't seem bothered by the cause of my dropping b12 levels instead he's trying to treat the GI symptoms that he says are not associated with my B12 deficiency . Blaming them initially on IBS but when then tablets he gave didn't have any effect he's said it could be lactose intolerance and has told me to go lactose free.
I was first tested a year ago and my b12 was 140. I was retested because they thought it was a blip and a week later my b12 was 130.
I then had the loading doses and one 3 month to injection during which time I had endoscopys and biopsies which ruled out coeliac and IBD as well as a blood test to rule out PA. I also had a blood test for B12 one week after an injection and my levels were 1200 and the hospital told me there was nothing wrong with me. I didn't even have the b12 deficiency anymore. My GP advised that I stop injections as my levels were now back up and to come back if I started to get sumptoms again. I lasted 5 months went back and my b12 was 600. So now I'm back on 3 monthly injections still no nearer to finding out what's going on. But I'm now at the point where my GI symptoms are hard to manage and I'm sick of going back every 4 weeks and being sent away to try something new.
Internal scream at the hospital - levels of 1200 when you have had loading doses mean absolutely nothing. Your levels were high because you had had loading shots.
Try the 3 month injections and see how it goes - though suspect that your symptoms will be back well before that.
Keep a diary of your symptoms to show your GP - show him the materials in fbirder 's response to your first post - write him a letter with copies in - sometimes that works better than leaving them - and sometimes it doesn't.
You clearly have a b12 absorption problem - whatever the problem the treatment is the same so on one level looking for a cause may not be the best thing. Check with your GP if the medications he tried were for high stomach acidity. Point out to him that the symptoms of low stomach acidity are very similar to those of high stomach acidity - not sure that they test for it and there isn't any treatment available on the NHS as far as I am aware. People tend to try and make sure that they have something acidic to drink when they eat to raise acidity levels and see if that helps with the GI symptoms.
Would probably help others to respond if you could be more specific about exactly what the GI symptoms are.
I know what you're saying about the treatment is the same whatever but if it's not PA then the b12 is a symptom of something else and I'm still getting the GI problems so it makes me wonder if it's something else.
I'm just losing confidence in the doctors. I feel like they think I'm a hypochondriac and they don't know why I keep moaning.
The symptoms I'm getting are really really bad bloating and terrible wind which leads to stomach pains and a feeling of being full and sick. Loose bowel movements not diarrhoea with an urgent need to go. Also gurgling stomach.
Which are all symptoms of lactose intolerance but I don't believe it's linked to food or more a specific type of food. I don't feel like I'm digesting my good properly and it's all just sitting there in my gut.
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