low ferritin - testing for cause

[dottyaboutstripes]

What tests would you expect to have? I've had a myriad of tests, including biopsy for coeliac (negative), I'm not sure what's left and am looking for ideas. At it's lowest, my level was 2 and last test I think was 9. I've had it tested last week and it's clearly still low as the doctor wants to see me. I think her current thinking is some kind of "gluten allergy/intolerance " but would like to go armed with some ideas!

You must have felt awful at 2. If it's not heavy menstrual bleeding causing then the GI tract seems to be the next place they look. You could try going gluten and lactose free to see if that gets your levels increasing, which is what your doctors suggesting if she thinks you've got some gluten intolerance going on. My levels weren't so low as yours, but stopping the lactose made the final difference after going gluten free a few months earlier, which is why I mention it.

What tests would you expect to have? I've had a myriad of tests, including biopsy for coeliac (negative), I'm not sure what's left and am looking for ideas. At its lowest, my level was 2 and last test I think was 9. I've had it tested last week and it's clearly still low as the doctor wants to see me. I think her current thinking is some kind of "gluten allergy/intolerance " but would like to go armed with some ideas!

If you’ve had a biopsy for coeliac and it’s come back negative then you have nothing to lose by going gluten free for 4-6 weeks to see if it makes any difference. Actually, if your local path lab is anything like mine, you’ll need to make that three months, because they won’t test ferritin any more frequently.

Other than that, if you have no internal bleeding and you don’t have long, heavy or frequent periods, then it could be a bit of a mystery, but have a look at the list of causes on the link and maybe talk to your doc about some of them.

I am conscious that both low stomach acid (mentioned on the link) and low ferritin part of an overall picture often seen with hypothyroidism. Has your thyroid been checked and if so, how was it?

patient.info/doctor/non-anaemic-iron-deficiency

Periods aren't heavy.
I've just had thyroid checked and is "fine" - I will ask gp about numbers. Liver function fine. I've had cameras up and down, and so many blood tests I can't remember what they all were.
I think she's going to ask me to cut out gluten and see what happens. I wonder if I should be referred to a haematologist?

I found this flow chart helpful with trying to narrow down the cause and to decide what tests to ask for:

www.cmft.nhs.uk/media/499600/manchester%20anaemia%20guide.pdf