"Why are you are self injecting, you need to follow the guidelines"
Because the swollen legs, dizziness, headaches, memory loss and depression come back and I cannot get off the sofa!
Jesus Christ these so called professionals are idiots.
She then proceeded to tell me to take oral supplements (which I already told her don't work) and I have been tested already I do not absorb any B12 through the gut.
Then she explained about overdosing B12 and it can be harm full with side effects.
I do have something else going on which I cant explain, I cant eat anything with wheat, barley or rye in it as it makes me ill and get hives, not idea why or if this might be the cause of low B12.
Rant over.
Written by
Vitali-ep
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"I cant eat anything with wheat, barley or rye in it as it makes me ill and get hives"
Have you been checked for coeliac disease?
Coeliac disease (spelt celiac in US) is an auto immune condition where the body produces antibodies against gluten.
Gluten is a plant protein that is in wheat, barley and rye.
Some coeliacs also react to oats which has a similar protein to gluten called avenin.
Might be worth checking your medical records to see if you have been tested for coeliac disease in the past.
Guidelines below suggest that GPs do two first line tests
1) tTG igA test which looks for antibodies to gluten
2) Total IgA test which checks which patients have IgA deficiency.
People with coeliac disease can get a negative result in tTG IgA test if
1)they have IgA deficiency
Their bodies can't make the antibodies to gluten that tTG IgA test looks for.
2) they weren't eating enough gluten before blood was taken for test
Guidelines below suggest that a patient with suspected coeliac disease should eat gluten in more than one meal per day for several weeks before blood is tested.
"I even asked for the test and endoscopy but they are not interested."
It is possible to get tests for coeliac disease privately in UK if GP won't order them.
Might be worth taking a photo of your skin issues to show GP.
DH can be very itchy and often has blisters although not always.
Might be worth putting your request for test etc into a brief polite letter to GP along with evidence that backs it up eg symptoms and extracts from NICE guidelines.
Link below explains when GPs should refer patients with B12 deficiency to a haematologist and a gastro enterologist.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Feel free to rant. Unbelievable, about their lack of knowledge and not even wanting to help or test for coeliac disease. If you do have coeliac disease or non coeliac gluten sensitivity (including DH) we can also have problems with histamine so, our skin, tongue can blister, Sinus trouble, sneezing etc etc.
A friend manages his condition very well [he's another scientist] and has learned what he can eat, and from where. Another I know was expected to 'shuffle off' when he first presented, but very quickly got the diagnosis and recovered swiftly; he too is well-maintained now.
Some folks are 'gluten-sensitive' without having coeliac disease, but manage very well by avoiding gluten-containing foods.
By avoiding gluten, there is a possibility that you could absorb B12 from your gut, but it will take a while. As for overdosing on B12? I don't think so!
Good luck, and get yourself healthy. Keep listening to the messages your body is telling you.
Sleepybunny has flagged up Coeliac Disease, an auto-immune condition (another one which is often missed by GPs, but let's not go there....!). If you are waiting to be checked for Coeliac condition, carry on having any gluten based products in your diet (even though I appreciate it will make you feel ill), but if you stop and 'clear' your system the tests will come back negative. You also mentioned hives, this is often linked with Coeliac and is called Dermatitis herpetiformis.
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