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Please help!

Posted , 5 users are following.

Sidd
Sidd

Please can somebody help me??

I have suffered with gastrointestinal problems for almost 2 years now and after numerous tests I am still suffering and no nearer finding out whats going on.

Historically I had a cast iron stomach - could eat anything with no issues. However I started getting stomach pain which was in my upper abdomen just under my sternum and I can only describe it as feeling like I'd been punched and winded.

I also started to get bloating, really badly. To the point where I looked pregnant. It tended to be better in the morning and gradually got worse and worse througout the day to the point that in the evening it was really painful and uncomfortable.  Then I would get general pain across my whole abdo area and my stomach would be very noisy - gurgling etc. 

I've tried various diets: FODMAP, Gluten free, Lactose free etc etc and I can't find a food trigger it seems to vary every day and I'm not sure its related to food specifically.

When I first went to GP about it they did various blood tests and found I had a  vitamin B12 deficiency. I was then referred to hospital and had a gastroendoscopy and colonoscopy as well as biopsies for Coeliac. Everything was fine and they said it wasn't a bowel disease, there were no ulcers, no inflammation and it wasn't Coeliac or Pernicious Anaemia. I was diagnosed instead with IBS.

After doing some research I found that IBS does not cause B12 deficiency and also the tablets I was given for IBS - Mebeverine and Buscopan etc made no difference whatsoever. So I'm really doubting that diagnosis also I doubt suffer with constipation or diarrhea.

I've started seeing a new doctor and they have ran more blood tests: There is no indication of inflammation/infection and everything appears to be ok including Thyroid. The doctor thought it could be H Pylori. However the antigen stool test came back negative. 

I've since had an abdominal and pelvic ultrasound and again that has come back clear - no stones/cysts etc.

The doctor prescribed me Omoprezole 20 mg twice daily. That seemed to settle my stomach a little bit but it made me extremely nauseous so I had to drop it to once daily and that seemed to help the sickness and I'm not due to see the doctor until next week.

Other symptoms I have are: fatigue, muscle aches, dry itchy skin, joint aches,  Reynaud's disease, 'brain fog'. I've been having b12 injections 3 monthly so in theory none of the symptoms should be related to that

I am literally at my wits end. I'm at the point where I don't want to go out for meals with friends/family because I'll feel dreadful. Holidays get ruined because I get so badly bloated and pain after eating.

Does anybody have any ideas at all? Sorry its so long winded.

2 likes, 13 replies

13 Replies

  • clivealive
    clivealive Sidd

    Posted

    Were you treated for your B12 deficiency?  If not whatever was causing it has yet to be resolved.

    Was your Folate level tested? Folate gets "used up" processing B12

    Among those at risk of B12 deficiency are people with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    It may be that you do have an absorption problem.

    How old are you? Do you drink a lot of alcohol?

    Is there a family history of Pernicious Anaemia?

    I'm not a medically trained person but I've had P.A. for 45 years.

    I wish you well

    • Sidd
      Sidd clivealive

      Posted

      Hi Clive thank you so much for your reply.

      I had 6 loading doses of B12 and have had injections 3 monthly since. My levels have always been ok since having the injections.

      On the last check (02/12/16) my folate was 5ug/l and the range is 3-20ug/l. In fact looking at the results my folate has been 5ug/l every time its been checked since August 2015

      I've read that IBS doesn't cause B12 deficiency because it doesn't effect the lining of the gut and cause malabsorption like other diseases such as crohn's,coeliac etc do. Maybe I'm wrong?

      I'm 26, don't drink a lot of alcohol and there is no history of PA in my family. My maternal grandmother did have Diabetes (Type 2) and Rheumatoid arthritis though.

      Thank you.

    • margaret22116
      margaret22116 Sidd

      Posted

      Interestingly I have the same sort of pain high in the stomach and have low b12

      Clive already knows my story. I also had peripheral neuropathy. I am being treated. I was having a bit of intermittent poblems gi in nature. I haven't had pain since treatment come to think of it.

    • clivealive
      clivealive Sidd

      Posted

      It seems like you need to supplement with folica acid as this works with the B12 and gets "used up" in the process. Check with your doctor.

    • clivealive
      clivealive Sidd

      Posted

      I would say that 5ug/l and the range is 3-20ug/l. is low although it is probably "flagged" as "Normal" - within range

      "Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine".

      Vitamin B9 (Folic acid) University of Maryland Medical Centre

  • marion29181
    marion29181 Sidd

    Posted

    It sounds as though you need more frequent injections than every three months. Is your doctor aware that PPI's like Omeprazole actually deplete B12?

    All your symptoms sound like they can be due to low B12.

    It's a good idea to make sure all your other vitamins are OK, my VitD was low too, and that can cause aches and pains. So take a good B complex tablet and see if your doctor will check on VitD levels, ferritin and folate. Folate is essential to use the injected B12. 

    • Sidd
      Sidd marion29181

      Posted

      Hi Marion thank you for your reply.

      As far as I know my b12 is fine. It seems to drop by about 100 each month but is always over 1000. It was 133 at the time of diagnosis.

      I've only been on PPIs for a fortnight whilst I got the h pylori results and they have seemed to settle my stomach down a bit

      but made me feel really sick so I had to drop the dose

      My doctor says I can't absorb b12 that's why I have to have injections although he didn't say why so not sure a supplement would work? I'm not really sure about any of it to be honest.

      My vitamin d has been checked and is ok.

      Do you think my folate is low? Can you take too much? Thanks :-)

    • margaret22116
      margaret22116 Sidd

      Posted

      Sidd I also suffer from another auto immune disorder and the kind of symptoms you are describing can also be linked to other auto immune didorders. If you have a not very understanding or forward thinking gp you would struggle to get them to consider that but all auto immune disorders can cause those kinds of issues.
    • clivealive
      clivealive Sidd

      Posted

      Folate is essential to process the B12 you are having injected and will get "used up" in doing so.

      Folate (Folic acid or Vitamin B9) is one of the B group of vitamins, found in green vegetables, in particular. The body's reserves of Folate are low and only sufficient for about four months. Causes of a deficiency include reduced intake from the diet or from poor absorption through the gut; increased demand for folate and side effects of some medications.

      Please ask your doctor to check it out for you

      Testing your serum B12 is pretty well next to useless once you have started injections - unless the result comes out very low.

  • ladysuisei
    ladysuisei Sidd

    Posted

    Hi Sidd, ladysuisei here.. Well all the things such as bloated tummy etc etc are very familiar. I have had all the same tests re digestive problems as you state. Unfortunately, atm, I am feeling so ill that it's really hard replying to you as my arms are so weak and tingling constantly that holding my phone for a few seconds is difficult. I really don't know what to say, other than if I don't have a good outcome on the gp appointment on Thursday, I'm throwing my hat in. Had enough. Can't go on like this. In fact, atm, ending my life is a realistic plan, as I can't do things any more.

    • clivealive
      clivealive ladysuisei

      Posted

      Have you had a diagnosis of B12 Deficiency or P.A.?

      Make a list of your symptoms and present this to your doctor 

      If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

      I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

      ?I wish you well and hope you get the treatment you need and deserve. 

    • Sidd
      Sidd ladysuisei

      Posted

      Hi ladysuiei I know exactly how you feel but don't worry theres always light at the end of the tunnel even if you can't see it right now.

      Let me know how you get on, I'd be interested to know what the GP says because our symptoms sound very similar x

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