Coeliacs: continued malabsorption despite GF diet

[afternoonbiscuit]

Hello! Are there any Mumsnet coeliacs who faced continued malabsorption problems despite a strict GF diet?

I’ve been GF since diagnosis 18 months ago, but it seems like I’m still not absorbing nutrients properly (rock bottom iron levels, low vitamin D and B12). I’m pregnant with my second baby now, so that’s probably playing a role, but my ferritin was barely measurable at the very start of the pregnancy so I assume it never got very high to begin with.

I’m waiting until the birth before I have a follow-up endoscopy to see what’s going on, but in the meantime I’m worrying that gluten is somehow getting into my diet or that I’m one of those non-responsive coeliacs!

Has anyone else had a similar problem? Did anyone have to adopt a more extreme diet, like not eating out at all or cutting out oats etc?

Dc had/has this. Took another 7 years to stabilise following original diagnosis (partly because they continued to accuse me of giving gluten formanyyears). Was diagnosed with refractory coeliac disease and following months of tube feeding only had a restricted diet that was slowly increased over a year. Also had a variety of high dose vitamins and immunosuppressive drugs. Dc continues to be partially tube fed with a feed that is fully broken down so its easy to absorb but maintains weight and has a reasonable level of absorption.

@Suitcaseforlife Thank you for your response! I’m so sorry that you and your DC have had such a tough time with this disease. I didn’t realise it could lead to such a restrictive diet, but it’s helpful to know what the possibilities are and also that it can take years to stabilise after diagnosis. Maybe I'm expecting too much after just a year and a half.

It can take a while for your gut to heal after diagnosis, especially if it went undiagnosed for some time, so it could just be that.
That said, is there any chance of opportunity for contamination? If you eat out, how confident are you that it’s safe? Not everyone shows signs of ‘being glutened’ such as pain or sickness, but the damage can still happen even with tiny traces of gluten. Are you sure that you’re not eating foods that are GF based on the ingredients list, but might still contain traces of gluten?
Are you eating (GF) oats and products containing oats? Many coeliacs react to the protein that’s in oats in a similar way to gluten so it’s often suggested to cut out oats entirely for a whole and reintroduce them (GF certified only) once the body has mended after initial diagnosis.

Well I’ve been gluten free for over a decade but my vitamin D has often been horrifyingly low, and my ferritin is always far from ideal.
I’m taking supplements so fingers crossed they will come up a bit more, but I’ve never got anywhere near an optimal level. I am very careful, so I know it isn’t my diet. I was over 40 by the time I was diagnosed so perhaps that is why ?
Weirdly my B12 is never low even though I’m vegetarian. I don’t understand that !

Also meant to add that you can buy vitamins in a spray that are absorbed under the tongue. A better option than replying on absorption in the gut perhaps?