clinic don't know answer to my question.just wondering if anyone else knows.not much faith in GP concerning coeliac disease & B12?

[parrotman]

Hi.been having b12 injections 3monthly for 18 months.diagnosed c.d.4 months ago.

asked clinic if stomach would absorb b12 naturally when villi healed

Answer(haven't a clue)neither have I.any info would be help..Thanks.

[FionaGFG Administrator]

Firstly what 'clinic'? are you referring to?

Secondly - it appears you have had B12 injections over the last 18 mths, how have your B12 levels levels improved in that time? What were they before the injections and what are they now?

Have you been tested for Pernicious Anemia?

What have your ttg blood tests for Coeliac anti-bodies been ? Have you been offered a 2nd endoscopy yet?

[Regalbirdy]

Hi Parrotman.

My understanding is that the guts will go back to absorbing sufficient B12 once healed (providing it is in your diet of course!).

However if you have pernicious anaemia you will need to be on B12 injections for life - it is treatable but not curable; but if you are having them because your B12 levels have been made low by having coeliac disease, then there could come a point in time when you may not need them any more.

How do I know? I am a coeliac and my next B12 injection is due next week! The doctor I spoke to recently said that he was fairly sure that the course of six injections I had (and the future top ups I am still to have) have kicked my B12 levels into the normal range and will probably cover me for the next two years - so much so that he reckoned there was no point me having a blood test at present.

Hope this helps.

[Malago in reply to Regalbirdy]

Hi all and Regalady and Parrotman

I am building up a collection of autoimmune diseases diagnosed in this order.

Hypothyroidism, then Permicious Anaemia both 5 years ago. Then CD last summer.

On my diagnosis of P/Anaemia I asked about the disease and treatment because I HATE injections and my doctor explained that my low B12 was permanent. In order for the digestive system to access B12 from diet or swallowed medicine it needs to be 'mixed' by 'intrinsic factor' which is secreted in the stomach, which my stomach no longer produced.

I was told that my stomach's ability to produce intrinsic factor would not alter and receiving B12 via an injection directly into my bloodstream was the only (effective) treatment. If my memory serves, I think there might be other forms of P/Anaemia which might require different medical treatment. Regards Malago

[Malago in reply to Malago]

Woops need to add to the above......

So remembering that our digestive system is a one way street, the villi are after the stomach, even healed villi will not absorb B12 from the passing food as the intrinsic factor still (in my case at least) will not be part of part this even though there might be a lot of food rich in B12 within the system. I I hope this explanation is clearer than mud! Regards Malago

[MaryDB]

Very odd - my B12 was o.k. until I was diagnosed coeliac and went gluten free. Two years on I am very deficient and having injections! Does this make sense in any way?

[barny]

hiya i have been having vit b12 for 4yrs and b4 i was diagnosed 18months ago i was told they were for life but only have them evrey 4months to keep level up and have a blood test evrey 12months so ask your doc

[SilverDreamMachine]

This question and the replies just confirms my view that the medics know little about B12 and Coeliac. I am asymptomatic and only found out I had CD when a blood test revealed low B12 (& folic acid). Two endoscopies later CD was confirmed. I also had four top up B12 injections. After 4 years on a strict GF diet I had low B12 again! Asked how come and got the answer "this happens sometimes`.

Conclusion: There`s a lot more research needed into the B12/CD relationship.

[glitzygem]

My b12 was low when I was first diagnosed, so I took b12 tablets that you put under your tongue, so that it goes into your bloodstream. My b12 then ended up being too high as I took them for years, but is all normal now and now off the tablets.

[Penel]

This is a good article on vit B 12 and coeliac webmd.com/food-recipes/guid...

If you are vegetarian it looks to be harder to get enough B12 in your diet.