Sorry for the spelling! I was diagnosed with crohns 8 years ago, and it is only in the terminal illieum, it's not very active and I no longer take any meds for it.
Recently I have been feeling incredibly ill, sleeping up to 18 hours a day, etc any ways my investigations led me to here! I am led to believe I should have been offered b12 tests, because of where the crohns is located.
Does anyone else have any experiance or wisdom to share?
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leanne82duke
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Yes it would be wise for you to have B12 tested regularly and if low to start treatment, as the terminal ileum is where B12 is taken up (and many other vits/ minerals). Besides taking up its also the area where bile is recycled which also contains B12, so any damage there can cause bed take up, and eventually deficiency. I do not have Crohn's disease, but a smooth terminal ileum and it means I do not recycle much of the injected B12, my levels stay low even with 2 weekly IM B12. I also have other deficiencies, and bile salt mal absorption, which I take colestipol for, but this also means deficiencies of fat-soluble vitamins (A, D, E and K) , iron and folate deficiency can occur, besides B12.
So if you can try to get a vitamin panel done to find out if and what you may be deficient of. Many other vitamin deficiencies cause same sort of symptoms see:
Serum B12 test is a separate test from FBC (separate vial, with purple top from memory, think your GP means we will see in FBC if your MCV is getting to large, as that can be an indicator of B12 def, but also folate def and or thyroid problems; and if you are also iron def then MCV may be normal with B12/ folate/iron def). Will be interesting to see if you have had serum B12 regularly!
I have similar situation with crohns, not much active and not on any medicines. I was diagnosed in 2008 and then was not on any multivitamin or medicines. Just recently i noticed my skin turn yellow and fever every week. I contacted GP and my B12 was tested at 251 which is slightly above reference range, i was given loading dose of b12 injections, My ferritin was also low so on iron tablets.
I would advise ask GP to do all vitamins and mineral tests and find out any deficiency. Serum B12 should be above 500, ideally 1000.
I was diagnosed with Crohns over 40 years ago after surgery for Ileo-Caecal TB. Docs forgot to tell me about B12 absorption ! Had never been tested throughout the six monthly checks in the UK ! Had always taken a good B Complex and I guess liver and onions on a regular basis has stopped me slipping into dementia
I was diagnosed with Hashimotos here in Crete in 2005 at 59 - and having joined Thyroid UK here on HU I soon learnt what had to be done. I now have weekly B12 injections and although the improvements are not obvious we have to remember that the degeneration is insidious - and so will the improvements....
I believe you have to take Folic Acid with the B12 - in whatever form - as the two work together in the body. Also to take a good quality B Complex to ensure the B's do not go out of balance.
Hope you soon regain your energy....
I take VitD 10,000 IU's - which is a steroidal pre-hormone and anti-inflammatory. It has been reported to help with auto-immune issues - Crohns included....
vitamindcouncil.org click onto Health Conditions and find the Crohns article....
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