Ferritin of 17 - what do I do? Also low B12? Does this point to coeliac? Help!

[Ferritinny]

It's been on the low side for years, but this is the lowest it has been. 17 ng/ml when the range is 16 to 154 at this lab.

The GP said maybe it dipped more if around period, but looking back I guess this sample was taken about midway through my cycle?

I have managed to get my folate up to 8.8 ng/ml from borderline low (years of readings at 4 and 5) from taking high dose methylfolate so quite pleased about this. However, my B12 is always between 200 to 400 despite taking a B complex - does this mean I can't absorb B12? Gp tested for pernicious anaemia antibodies and negative.

Coeliac antibodies were negative but GP also tested some genetic thing and I have 1 gene associated with coeliac out of 3 possibles.

GP thinks I should cut or dramatically reduce gluten as even if I don't actually have coeliac now I could develop it?

I struggle massively with fatigue which is my main issue, also regularly feel like my brain isn't working correctly and my nails are breaking at alarming rates. Which could all be related to the ferritin or a gluten problem?

I have an autoimmune disease already, type 1 diabetes which is well controlled with hba1c of 5.4. I also have hypothyroid (no thyroid antibodies, so not Hashimoto's) and TSH is always 1 or a bit less, but T3 and T4 are always a little low.

What would you do?

I don't know where to start!

Anything below 30 is now considered iron deficiency. I get symptoms below 50. Don't absorb iron through the gut, so get iron Infusions regularly

GP thinks I should cut or dramatically reduce gluten as even if I don't actually have coeliac now I could develop it

oh dear. Firstly I agree you should push for a biopsy to definitely rule coeliac out as blood test could be a false negative..

if the biopsy is also negative then you don’t have coeliac disease regardless of the gene and cutting out gluten is of no benefit. You could if you wish have annual blood tests to check the gene hasnt “turned on”. Dh has the coeliac gene but does not have coeliac disease and is in his 60s. Loads of people will have the gene and not know.

with your other auto immune stuff and the blood results I’d say biopsy is vital as you are indeed high risk for having coeliacs so needs a thorough investigation

When Dd was sedated she was “out of it” for around an hour, inc the procedure and still being dopey in recovery. Would you be happier knowing it’s a short time? I get what you say that you’ll just go gluten free but it’s honestly hard. It’s expensive and everything tastes fairly shit. I can’t imagine inflicting gluten free bread on myself if it’s not needed. Plus you’d need to be super careful of cross contamination, it makes eating out a nightmare. One speck is enough to cause problems if you actually have coeliac disease.

I could imagine without a diagnosis it would either be tempting to slack off at times which makes the whole thing pointless. Or you’re super strict and potentially for no reason. Which would be a shame,

Agree with all Velo's points.

Also, it is possible to have the endoscopy done without sedation, and indeed encouraged in the literature provided by the NHS when they give you an appointment. Not that I'd personally recommend an unsedated endoscopy if there's any possible way at all you can have it sedated. (Some people report doing okay with it, but enough people say they found it highly unpleasant or even describe it as highly distressing or traumatic that I wouldn't want to take the risk that I might be in that group if I could feasibly avoid it.)

Forgot to say, they should also be able to schedule insulin-dependent diabetics towards the beginning of the day's list, if they've been informed.

I didn't have coeliac but am gluten sensitive, that caused intestines to swells slightly stopping absorption of iron. So even though not coeliac, cutting out gluten may help. May not, worth a try.

Also, is the risk of possibly running a little higher than you'd like for a few hours on the day of the endoscopy (during the entirety of which you'd be at least reasonably conscious, even if you don't have memory of that period of time) that much worse than the disruption to managing your sugars that could come of having to permanently, but potentially unnecessarily, switch to a gluten-free diet?

I had to change so many foods when I went gluten-free, not just the breads but huge swathes of my diet. Even switching to a different, gluten-free brand of oats for my porridge would change my blood sugar response. I'd developed a diet whose impact I understood, and suddenly most of it had to be changed. I'm type 2, not type 1, so the management is obviously very different, but I definitely noticed the change, and it wasn't for the better.

Thanks @tothelefttotheleft I'm also going to request a FIT test.

The more I try to learn about iron the more confused I get!

Am worried if I start taking iron supplements my haemoglobin will rise too as it's almost at the top of the range already? I did ask the GP about this, she didn't know.

She's generally very good and takes deficiencies seriously. She would almost certainly refer for biopsy if I asked for it but I am scared of everything to do with the biopsy.

I've watched both parents die and before death while still very much conscious, the horrible placement of naso gastric tubes and how awful that was for them. I feel incredibly distressed at the idea of naso gastric tubes or endoscopy or any kind of choking panic. It's honestly making me feel a bit sick just typing this.

As far as I've read so many people panic during endoscopy with no sedation, and if sedated still panic but just don't remember it. It sounds awful.