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Ongoing low iron, B12 and folate despite coeliac disease being managed

1 reply

LetThemEatCarrotCake · 13/07/2026 15:37

I've struggled for years with low iron/B12/folate (some or all have been deficient at various stages) and also diagnosed with Coeliac disease, have been gluten free now for nearly a decade.

At what stage do I push for further investigation? When I go to the GP with symptoms (fatigue, brain fog, lower exercise tolerance and severe headaches) the routine goes:

  1. Do a blood test
  2. Results show low iron/B12/folate (any or all of the above).
  3. Give me prescription strength supplements and send me away. Sometimes test again after 3 months which shows my levels have gone up to an 'acceptable' level.
  4. 6-12 months after stopping the supplements my levels are deficient again and I'm symptomatic.

And so the cycle goes on.

I am aware that coeliac disease can affect absorption but given I never had severe gut damage in the first place (shown by endoscopy) and I've been gluten free for almost 10 years I wonder if my absorption is still affected? No doctor has ever suggested that it could be.

I'm currently trying to conceive my second child and very aware my folate and iron levels need to be healthy. Recent blood tests show I'm borderline deficient in ferritin, B12 and folate, although my Hb levels are fine, plus some other abnormal results which on googling basically mean I have enlarged red blood cells with low haemoglobin concentrations (again, symptoms of low B12/folate). The labs notes say 'outside reference but acceptable'. Why have a reference range then?!

GP hasn't made contact yet and I'm guessing they won't bother. Do I just accept I have issues with iron/B12/ferritin and need to be on supplements for life? Is this ok or should I be asking why that is necessary in an otherwise very fit and healthy woman? 2 members of my family have been diagnosed with pernicious anaemia too.

OP posts:
DogGawn · 13/07/2026 15:47

you tend to have large blood cells when your folate or b12 is suboptimal. I get this all the time. I’ve just accepted I need to be on the supplements for life. In your shoes with coeliac, I would ask about the b12 injections.

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