Any mummas here with coeliac disease? (Newly diagnosed and TTC soon)

[loopeylou97]

Bit of background: I was diagnosed with coeliac disease last November so not so new but since March I haven’t had some scheduled as planned! Luckily I had an appointment with my dietician in January so have since followed a strict gluten free diet with no recurrence of symptoms.

I would say this is (nearly) fully treated now as last June I experienced the symptoms and was diagnosed by the end of the year so did my best to eat fully gluten free since diagnosis! Even before meeting with the dietician

However, a recurring worry on my mind is if I have any damage? I’m aware it’s an autoimmune disease and can occur anytime so my doctor said I most likely ‘got’ it last year before symptoms started and I have googled regarding TTC and coeliac disease and the results that come up are usually the same: untreated coeliac disease can cause infertility (unsure if this is backed up by a doctor!) and miscarriages.

Since then I’ve been worrying that our TTC journey will be a struggle or devastating, of course I am treated now so shouldn’t be worrying.

I am wondering if there are any mummas on here who have coeliac disease and TTC/had babies without a struggle or miscarriage? Reassuring stories would be great right now as I am trying to start this journey with a clear headspace!

Hello! I've been lurking around the TTC forums for a while now but finally decided to actually sign up after reading this. I was also diagnosed with coeliac disease in Nov (well, that's when I had my endoscopy but it was a fairly sure thing and then got my official diagnosis in Feb) and I'd also be interested to hear if anyone has any experience of TTC with coeliac.

Sorry that I don't have a positive experience of my own to relate but hoping others might see this post! I'm fairly sure I've been coeliac my whole life so also worry sometimes about potential damage to my fertility.

I also worry that if and when I do fall pregnant I'll be tormented by cravings for all my old favourite gluten-filled foods lol.

Hi @loopeylou97 and @somanystars! I've just stumbled across this thread as a coeliac who is currently 24 weeks pregnant. I'm a bit further along from diagnosis than you both (I was diagnosed 10 years ago) and fell pregnant quickly, so it can happen. But this is my first pregnancy and finding limited info on coeliac disease and pregnancy.

How are you both getting on with your TTC journeys?

@CharlieD2020 Hello! I haven't used Mumsnet in ages, it was such surprise to get the email about this haha.

I am almost 23 weeks pregnant now myself and was incredibly lucky to fall pregnant quickly too, so I don't think coeliac was an issue in that for me! It's my first pregnancy too.

I was correct in my worry about craving gluten-containing foods - during the first trimester when I could hardly eat a thing all I wanted was a McDonald's cheeseburger, and I still do 😩 But most of my struggles with food have come from nausea and food aversions, and I'm not sure that has much to do with coeliac. I had an extra appointment over the phone at 16 weeks because of my diagnosis but the consultant I spoke to was a bit like, "er, there's nothing much I can really tell you".

I still struggle with being averse to a lot of foods and it's very frustrating when I finally think of something I actually want to have and I can't have it (another example is that boxed mac and cheese... ugh I miss it), but from a medical standpoint coeliac hasn't been an issue in either ttc or pregnancy :)

Hi girls. I have read quite a lot about coeliac disease and pregnancy, TTC and miscarriage as I’ve had two miscarriages recently. The doctor suspects coeliacs however I’m waiting for the endoscopy appointment at the moment. Apparently if you follow a gluten free diet if you are coeliac then TTC will be fine and you have as much chance as someone without the disease. Pregnancy again you just need to make the midwife aware as it’s an auto immune disease so they need to keep a check on your bloods more than someone else due to vitamin deficiency and other thing that I can’t remember. Miscarriage again if you follow a gluten free diet then you have a good chance as any at conceiving. Obviously there maybe some damage in your gut however if you follow the way of life and emit gluten you stop any further damage. Hope this helps xx

Hi, I’m a coeliac who was diagnosed at 16 (now 28) and I have 3 little boys. Conceived with no problems! Hope this reassures you!

Hello.

i know this thread is slightly old, but thought id share some of my experience for those that may come across this thread in future.

I'm a mother of 3 children, recently diagnosed with celiac disease. I had most symptoms & went undiagnosed for many, many years. At least a decade or more, currently going through the GF diet change. Hoping to see some positive results going forward.

children are currently being tested also.

just a little background on me. Im a 33 year old mother of 3 children of the ages of 13, 6 & 3 years old.

as you can probably gather from my children ages, conceiving was a very difficult challenge for me & even when i went to the doctors for advice or support, i was never given it, i simply helped myself by adding plant extracts to my diet, (agnus castus & Maca root) which eventually helped me conceive my children. I was 19 with my first pregnancy, so being a teen, i imagined it would be a easy process, it was not. My first child took over 3 years to conceive, my second child, over 6 years & my 3rd child probably was conceived the easiest, which the age gap being 2 & half tears between the middle & her. She was a lovely surprised, as she wasn't planned, she was simply a blessing i thought id never receive.

throughout my pregnancies, i had very worrying low iron, which i had to get iron transfusions every few months. I had to continue folic acid throughout the whole pregnancy, not just the first 12 weeks like usual. My b12 was also shockingly low & no matter how much i continued to take, my body just couldn't absorb it. It all makes sense why now.

i had morning sickness, from start to finish with every pregnancy, but labour & delivery was always a pleasant experience & although i had small children on delivery, there weights were always average, so never seemed to raise to be a red flag for doctors or midwives, as my children all seemed to put on weight instead of loose after birth.

my children are generally healthy, but they do happen to get sickness back to back, which has prompted me to get them checked now, rather than later in life, like my experience.

i would like to reassure you, you can get pregnant whilst being celiac, its just a lot harder, but stay persistent & don't loose faith. It’s just a slightly harder journey for us.

hope that helps.