Undiagnosed coeliac disease

[cocoforbes]

Not really sure what topic to post this in or if anyone who has been in this position will see this. But I'm looking to hear about experiences of conceiving after a coeliac diagnosis.

I have had 3 miscarriages in the last year and am being referred to a recurrent miscarriage clinic but got some blood tests done by my GP while I wait. From these tests I just found out that there is a 90% chance I have coeliac disease.

I'm really not sure how long after going gluten free I need to wait to start trying again. I hope it's not too long as I'm 35 so time is not on my side. Was anyone in a similar position able to have a successful pregnancy after going gluten free and how long were you gluten free for before trying again and being successful?

Thanks in advance... I'm struggling to find any info or mumsnet posts on this subject!

So sorry for your losses

this is informative about the why’s, one theory is:
Coeliac antibodies that are produced in untreated coeliac disease can have a negative influence during the early stages of pregnancy
www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/infertility-and-coeliac-disease/

Schar say the small intestine can be healed within 3-6 months, so you can absorb all nutrients, but if diagnosed later it could take up to 2 years!
www.schaer.com/en-us/a/results-after-celiac-diagnosis

This is American but all that came up after googling how long it takes for the antibodies to be out of the system.
celiacdiseasecenter.columbia.edu/kids-corner/faqs/
They are unlikely to be normal by 6 months and can take up to 2 and sometimes even 3 years to normalize, depending on the level of antibodies in the blood at the time of diagnosis.

Maybe it would be worth chatting to the GP to see if they would check your levels after 6 months? Although I’m not sure they would know absolutely what a good level would be but it might reassure you that they are significantly lower before TTC?

blood test info here
www.southtees.nhs.uk/services/pathology/tests/coeliac-screen/
samples are then tested for IgA anti-endomysial antibodies.There is a good correlation with disease activity.

Just to reassure you, I had undiagnosed coeliac disease when I got pregnant with each of my dds and everything was fine, I was over forty and had no issues at all conceiving. So try not to worry too much. Now you are no longer eating gluten your system will be healing and calming down.
I wish you all the best OP.

Hi @cocoforbes I searched and found this!
I am in the exact same position as you. I had 3 missed miscarriages between Aug 2021 and May 2022. Got pregnant easily with each and all stopped growing in week 8. A couple months ago I found out I have coeliac disease and was undiagnosed. I'm going strict gluten free for minimum 1 year before I try again (I'm 31). Theres studies linking undiagnosed coeliac to autism so I want enough time for the autoantibidies to drop low enough. Have you started trying yet?

Also I'm going to have my antibodies measured again after 1 year. Hopefully they will be very low.

Hi @Needsomeadvice33 we have just started trying again, now in our second cycle. We got some test results back for our last miscarriage and it was a chromosome issue, so likely would have happened if I was eating gluten or not which reassured me in a way. However, I've been gluten free for 6 months now as well.

I’m hoping I caught it early enough, there was only mild damage and my antibodies were at 32 (can remember the unit!) which I think is on the lower end. My blood results also came back with no deficiencies. But we mainly started again after 6 months because I am worried we don't have much time with me being 35.

I didn’t know about the connection with autism. Did you have any symptoms or were you asymptomatic like me? Very sorry to hear you are in the same boat. It’s not easy to go through the heartbreak of multiple miscarriages and then find out you have a life changing disease all in the same year!

Thank you @Isgooglebroken and @MrJi for your responses, sorry for not responding sooner! They were helpful at the time and glad it worked out for you @MrJi it is reassuring 😊

@cocoforbes yeah 32 is quite low so 6 months gluten free should be good for you. I actually suspected I had coeliac disease after my 3rd miscarriage. I had all the classic symptoms , but my symptoms have been much worse in the past 2 years since I had covid. Chronic fatigue, abdominal pain and diarrheoa, joint pain, peripheral neuropathy. I have psoriasis also. In May after my 3rd miscarriage i had gene testing with 23andme - had the coeliac gene then went to my gp. I think I need a minimum 1 year to work on my health in general. I've lost 1.5 stone. Still another 1.5 to lose. I'm doing gluten free paleo diet. I'm taking also high dose omega 3s (for inflammation) and a load of supplements for egg quality from (it starts with the egg). I'm also on low dose naltrexone for inflammation. My health has greatly improved in general since November so I'm going to keep this going for a while before I try again. I want my psoriasis in remission, which it is heading towards. I have such a hostile immune system though. I had testing for APS and my thyroid function and thyroid antibodies was all fine. From gene testing I also have the MHTFR gene mutation which can also be assossiated with miscarriage (and you need to take methylated folate with this). Next pregnancy I think I'll need a low dose steroid and asprin. Also going to take progesterone as that favours the anti inflammatory environment for your immune system to accept the pregnancy.
Good luck, hope you get some good news soon.

Coeliac here. Intestinal villi tends to improve 6 months to a year after starting a gf diet but can take several years for some people until full healing of the gut is achieved.

I was diagnosed in 2007 so my gut health should be fine now but if I were to accidentally eat wheat or gluten, it is unlikely to cause me long term damage. It would depend on the amount of gluten consumed and individual sensitivity.

@Needsomeadvice33 so glad your health has improved, all those symptoms sound really tough on top of everything else.

Good that you were proactive and got the test. I think there must be lots of women who suffer miscarriage caused by coeliac but never find out the cause. I read about the test on Tommy's website and asked my GP for it. I then went on to be seen by the St Mary's recurrent miscarriage clinic in London and surprisingly they don't do it routinely.

How are you finding the gluten free diet?

@MrsHemsworth thanks, I'm hoping since my damage was mild that 6 months is enough to start ttc again. I'm not sure it had any link to my miscarriages but starting again and hoping it works out this time.