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Not storing iron but its not coeliac. Any ideas?(12 Posts)
We found out I was anaemic when DS was 18 months old. My levels were very very low but as I also have M.E. I just put the symptoms down to that. It took quite a long time to get my levels back up. When they were I stopped the iron tablets but my levels just kept dropping. My doctor tested me for coeliac and its not that (I have IBS but nothing else has ever been looked for). We were looking at referring me but then I got pregnant with DD and it was put on hold. Had a blood test in hospital after I had DD and I was really anaemic again. I have been on the iron for 5 months and I am not anaemic anymore but my stores are really low (in the normal range but far lower than they should be).
I have to have another blood test in 2 months now I have stopped the iron to see if the levels drop again and if they do I am going to be referred to see why (camera in my throat and bottom - nice).
My doc asked if I had diarroeah etc, I do get this from time to time for no reason, I don't have really heavy periods but I do keep bleeding anally although this has gone on for a few years, and increased after I had a 3rd degree tear with DS, I can feel it slightly painful when I go to the toilet so I know it is yet another fissure that then heals on its own.
Your iron stores are low because you would be anaemic if you weren't taking iron supplements and the cause for that needs to be investigated if it persists. Has your anal bleeding been looked into properly? I am not sure if you should just assume it is a self healing fissure. I think it is a very good idea to have the endoscopy and colonscopy studies that were suggested. just to rule out other causes. Do you have any history of bowel or gynaecological problems in the family? If you do, you should let your doctors know. Some people just get anaemic now and again for no known cause and a top up with supplements is all that is needed. I am sure you will be fine and I hope that it all just settles.
Not a clue sorry, posting in solidarity, not to offer any useful new ideas up. I have similar situation as you, though am probably coeliac (tests screwed up x2, refusing to eat any more gluten to test again). I don't suppose the fissures would be enough to be the reason. I can't get my stores back up either, though iron supplements keep me functioning.
Celiac is just a tip of the iceberg of problems associated with gluten, inc malabsorption. So you have been tested for iron, but how about zinc? Zinc is associated with low immunity generally as well as poor healing and proneness to skin cracking and fissures. IBS is strongly linked with gluten grains, so you cut try cutting down on those, don't worry about changing diet, you can only get better w/o them.
Bleeding from the bum needs to be looked into as even fissures can turn nasty if not healed.
Another one to join the club. Although if i take iron tablets (600 mg per day ferrous sulphate) I can ward off anaemia I never manage to get my ferritin levels up, it normally hovers around 6 (think normal is anywhere between 14 and 100).
I do have very heavy periods but there aren't a lot of options to sort that out in my case at the moment.
Crohns disease can cause poor iron absorption due to damage to the small intestine (my brother has this)
My problem is my old doctor said I had IBS but nothing else was ever even considered. I have had anal bleeding on and off for a good few years now but it has just been worse since my 3rd degree tear. I also have a lot of mucus sometimes from the back, my stomach makes the loudest and weirdest noises and I get so much pain sometimes (although this is when my IBS is playing up), I also pass quite a lot of wind and get bouts of diarroreah (sp).
I forgot to tell my doctor about the mucus. I'll have to make sure I mention all my symptoms in 2 months when I have my next lot of blood tests, she may just refer me then even if my iron stores haven't dropped. I'll also mention the zinc as well, thanks for that.
I would hope that if camera tests are negative you are maybe referred to a haematologist for further in investigation.
Do you know what type of anaemia you have??? Macrocytic? Iron deficient?
Have you had ur folate, ferritin and b12 levels checked?
Blood film etc?
How anaemic are you??
Sorry for all the questions!! X
I think it was iron deficient. I also had a folic acid deficiency after DS too but I think that is ok now. I think my ferritin levels were checked. I remember the doctor mentioning them. No idea what blood film is, sorry. My iron levels were down to 8.8 after I had DD. I don't know what they are now but I have been told I am not anaemic, I have plenty of red blood cells but my iron stores are only 20. Normal is between 13 and 150 but my doctor said they really should be around the 80 mark, not 20 so even though I am in the normal range, they are not as high as they should be. This happened last time I had anaemia and when I stoppped the tablets, the iron stores just kept dropping.
Not sure if this is relevant but this has made me think of my mum when she had pernicious anaemia - lack of vitamin B12. She also had very low iron levels alongside this and was pretty ill with it. Lost a lot of weight and plagued by extreme tiredness and mouthfuls of ulcers.
Iron deficiently is either caused by blood loss or poor absorption in the stomach.
The most common cause in women of child bearing age is heavy periods
Aside from this if u have inflammation in the bowel u may be losing blood and not even realise, or depending on where the inflammation is, u may not be able to absorb properly.
If this comes back clear, have ur urine tested for signs of (microscopic) blood loss.
If all this is negative and there is still a problem a referral to a haematologist might be helpful.
Given ur age and symptoms it's not likely it will get to this stage as hopefully the other investigations will pick up something x
Thanks for your replies.
Just hope it turns up with something. The bleeding from the back and mucus can't be normal and I'm sure it is all linked.
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