[greenhaggis]

Hi all,

Just been told today 1 month after bloods taken that not only am borderline B12 deficient I am also iron deficient.

At present I will be treated with Iron tablets which is okay if deficency is caused by internal stomach bleeding (awaiting gasto appt) or heavy periods (not sure what is classified as heavy).

If I'm deficient due to inflammationIron tablets will apparently not work - does anyone know how this gets tested?

Love Lesley

 

[Maia]

When these things are found, the usual approach is to treat with supplements and see if that works. Be sure to take iron with food and preferably with vitamin C too as that aids absorption (& avoid taking with calcium as that competes with iron for absorption).

There are blood tests that can also be run, looking at various things related to iron/ferritin, etc. When certain things are high and others are low, then it indicates which type of anemia is a more likely cause. There are several; I had a site bookmarked which explains it really well but it's not working at the moment. I'll try to find it later. Good luck - hope the supplements are enough.

 

[cemc]

My very first thought is have you been screened for coeliac disease? Coeliac disease is another autoimmune disorder that is common with the same type of genetic background as lupus, etc. It is also very common (1 in 100 people)and very underdiagnosed. The first symptoms of it are often tiredness, and problems resulting from malabsorption, and unexplained Iron and B12 deficiencies are really common. Also did you have your folate levels tested? If that is also low, and you eat any kind of fruit or vegetables in your diet, then that also points to the kind of malabsorption problems you get with coeliac disease. The initial screening for it is by a blood tests, but then if that shows positive you will be asked to have an endoscopy and biopsy to prove it. Treatment is easy - no drugs, just a strict gluten free diet (takes a bit of getting used to, but easy after a short while). BUT, don't change your diet before you get tested - once on a gluten free diet all clinical signs of coeliac disease disappear and you can't get diagnosed. You do need to be on a full gluten containing diet while you are being tested and for at least six weeks before, which usually means eating the equivalent of about 4 slices of bread a day.

 

[greenhaggis]

Maia - My bloods were taken 5wks ago and it is only because I phoned my Immunologist over my NSAID problems did he tell me I have problems with my Iron. I will be seeing a GP next week to get Iron supplements and advice. Hopefully by then my Imunologist will have found the time to update my GP!!! It does seems bizzare to me that I had my check-up 9th March and the Immunologist has not updated my GP on blood results, new meds etc.!

Cemc - thanks for the info on Coeliacs - I will bring that up with my GP & Immunologist! I do have many symptoms as do 2 out of my 4 kids!

Then again I still fall into the category of APS but tested okay back in December 2007. My pregnancies all had various complications i.e. all pre-eclampsia, 2xlow birth weight(one was low and 2 weeks overdue), 1xsuspected placental abruption(bleed from 5 months onwards) and one with stomach growth problems in the womb plus one misscarriage - never was I ever tested for APS!

Although I have the SLE diagnoses I am still in the loop of the unknown for many symptoms. My GP says my original Rhuemy should have tried to rule other things out before they just concentrated on SLE!!

Thanks!

Love Lesley

 

[Christine UK]

Hi Lesley..

i too was anemic for months despite heavy doses of iron tablets.

Thankfully i have a switched on local rheumy who organised a gut biopsy...which sounds worse than it is..

and this proved i had coeliacs disease...this was November of last year....

 

[greenhaggis]

Christine, I hope your are managing to cope with the new diet okay. I do know someone who has been a coeliac for 35 years and seems to manage okay!

Apparently I'm not anemic, though for how long remains to be seen, especially if the Immunologist forgets to tell either my GP or myself of any new problems found!

I am not looking forward to taking the Iron tablets as any feeling of nausea brings back the bad memories of my pregnancies!

I am hoping that the Iron tablets will fix the problem! When I do get to see the Gastro person I will ask them if they will check all possibilities and perhaps biopsy bits and pieces - this might be wishfull thinking expecting the NHS to check for more than just an Ulcer!

Anyway, I do try to stay positive although it is increasingly ore difficult. I do think it is finally sinking in that I have SLE and the impact it has made on my life capabilities is really quite dramatic!

 

[cemc]

If a gastroenterologist does want to do an endoscopy, make sure you ask them to check for coeliac disease as well - they have to pass the tube just a little further down to get the biopsy in the right place for that, but its well worth getting done. I know I had two or three regular endoscopies looking just at my stomach and duodenum that were normal, before they actually took the jejunal biopsy which showed severe coeliac disease damage. In practical terms, you won't notice the procedure being any different. If they give you the sedative as they are doing it, then you are nicely away with the fairies while the procedure is happening, and awake and alert immediately after.