TTC with coeliac disease and osteoporosis

[RabbitFromAHat]

Hi all,

Was diagnosed with osteoporosis last year (hips and upper spine), and after much investigation, the conclusion is that I have coeliac disease. I haven't started my gluten-free diet yet, but hope to very soon, once my biopsy is done (doctors are certain it couldn't be anything else, my blood antibody levels are massively high). I'm also being investigated for an auto-immune disease of the liver.

Currently I'm severely anaemic as well as everything else (doctor is advising IV iron if things don't improve), and it appears I'm seriously afflicted with malabsorption, based on no response at all to double-dose liquid iron supplements. Presumably this means folic acid etc. aren't being absorbed at all either.

I'm 38 and we've been not-not trying for six months, but I haven't been too concerned as my partner works away a lot, and schedules are just often not in our favour. However now I'm getting quite anxious about the whole thing, particularly with undiagnosed coeliac disease being implicated in unexplained infertility and recurrent miscarriage (I had one several years ago).

I'll be seeing specialists next month but I'd be very interested to hear if anyone else has had similar problems and how they got on. I keep worrying about (possibly stupid??) things like my hips fracturing in pregnancy, or my intestines being damaged so badly that I'm too 'malnourished' for me to this to be even thinking about TTC. It just seems a terrible idea to put it off for much longer. I feel a bit damned-if-I-do, damned-if-I-don't.

I am off out for a few hours now though, so not ignoring responses at all.

Hi - I have diagnosed coeliac disease. Was suspected but not diagnosed for years, eventually diagnosed 18mths before conceived I think, from memory (biopsy etc). I had dexa scans just to check all was ok. Definitely worth a few months of getting yourself well again, nourished, not anaemic and on high dose vitamins and minerals etc if they any use.

Just to say if ttc and diagnosed coeliac it is recommended you take a higher dose folic acid. Instead of 400mcg (or whatever the units are), need 5mg - and can only get it on prescription. So do ask your gp for that.

I had trouble conceiveing. But don't think coeliac was the main reason. Male fertility issues and then reproductive immunolgical issues picked up after failed ivf. Had a dc naturally after ivf failed!! Took over 7yrs, aged 37. Have blood clotting factors, raised NK cells etc etc.

Hope diagosis and treatment goes well for you.

Thanks Hoops, that's interesting about the higher dose folic acid, I will definitely bring that up with my specialist - at the moment I'm on high dose calcium, iron and multivitamins, but just on normal dose FA.

It's a little bizarre at the moment because I understand that I'd be doing my long-term health no favours by rushing into a pregnancy, but I'm already so ooooooold. There's a part of me that wants to be pregnant before I hear anything about what a terrible idea it is, if you know what I mean. I won't be obeying that part of me though.

You didn't have any particular issues during pregnancy, by the sound of it, which is nice to hear. I am concerned about the osteo part of it, I won't lie. I already have daily hip pain so I fear it would be a pretty horrible nine months.

It is the Gp who prescribed it, not a specialist - so hopefully your gp will too. It is fairly common I think.

I do not have osteo so no idea how that would affect a pregnancy. But I did have issue of health, quite serious, before my bfp incluiding a stroke but I had a great pregnancy!!

Good luck