Low B12 but not low enough...

[TodaysFishIsTroutALaCreme]

DD has low ish B12 - range is 150 to 900 and she is 275

She experiences a LOT of B12 deficiency symptoms but because her bloods are in the normal range the GP will not do anything about it. She may have coeliac disease, we are waiting for an endoscopy to confirm but as it is going to be done under GA, the waiting list is...significant.

My questions for those who have suffered with low B12, when did your symptoms happen. I get the impression from the GP that because her bloods are normal, she should not have symptoms of B12 deficiency. I have asked for another appointment and would just like to go in with some information and I will be asking what else could it be that is making her feel so ill. She also has low iron but is in the normal range for that as she takes ferrous femorate (sp) every day.

TIA

I will shout. And thank you. I needed to hear this.

She had conscious sedation and they attempted 3 times and it utterly traumatised her. There is no way in this world she will tolerate it again without GA

When the GP called with the blood results, she said normal is 7 and DD was at 8.

She had more bloods after the failed gastroscopy and they said it was equivocal. So I dont really know what to think tbh. If her bloods were really elevated then it would be bloody obvious but because it is only just over, the GP said it needed confirming by biopsy

the GP said it needed confirming by biopsy in case it wasn't and it was something else. Not sure what that something else could be though

They probably did a test to look for IgA antibodies. Below 4 is negative, 4-10 is a weak positive, 10 is positive. A weak positive is still positive, the biopsy is to confirm the diagnosis. People tend to recover really quickly once they’re diagnosed and stop eating gluten.

If you don’t already have access to your DD’s medical records via the NHS app I recommend you register. You can see the exact test results and satisfy yourself that you know what’s going on. And definitely push for a prompt endoscopy, because untreated coeliac disease is really serious - and is also progressive, which means the longer you wait the worse it gets.

As you say coeliac and malabsorbtion go hand in hand.

Welcome to the frustrating world of B12 deficiency!

There's lots of support groups online , they offer some great guidance on how to deal with a GP not giving treatment.
I believe that the NICE guidelines are currently being rewritten.
The general consensus from the support groups is that an optimal level of b12 should be 1000ngl.The NHS guidelines are appalling. Put it this way, if you were an animal the veterinary world would treat it without an issue.
Which brings you back to self treatment, which so many people resort to.
The specialist dealing with the coeliacs may override the GP and but your DD on a protocol, but get armed with all the information to push for it.
I think I read that when GPs are training they spend something like half an hour covering B12, and the guidelines are constantly changing so they have no hope with keeping up with the latest info.

Good luck and don't be afraid of taking self-care into your own hands...

B12 .. ive had issues with this

Improved mine with
Regular jacket potatoes in diet
Extra eggs - scrambled egg .. fried egg.. boiled egg with salads..
Beeteoot...

Nutritional yeast - tastes a bit cheesy - b12 and folic acid in - throw it on pasta etc....

I take 100 ug a day b12 tablet

Also taking floradix liquid twice a day
With iron & b vits in

You can get b12 sprays which you spray in your mouth. Worth taking supplements and seeing in 3 months if the bloods are any different, if she has absorption problems, then its less likely that oral supplements would affect the levels, so you can test it out that way