Finding out I’m coeliac whilst pregnant

[Katiec123]

Hi everyone! 
I’m beginning to get a bit worried. I have had the first lot of tests done and my bloods are showing as a very strong positive for coeliac. I am also currently pregnant. I have been told to continue to eat gluten until more testing is done (biopsies). If I continue to eat gluten when the chances are very high that I am coeliac, will this harm or affect baby? I feel like I don’t know where to get answers from as I haven’t seen the specialist yet 

[RMJ]

Undiagnosed (and thus untreated) celiac disease is associated with a higher chance of miscarriage.

The downside of continuing to eat gluten now is increased chance of miscarriage.

The downside of stopping gluten now and having to restart later to get a clear, official diagnosis is that you might have worse symptoms eating gluten after being gluten free, but it wouldn’t affect your baby.

I know which one I would choose!

[Katiec123]

@RMJ
 

this is really concerning and my GP has said none of this to me! 

[RMJ]

It is concerning.  Unfortunately a lot of doctors don’t know a lot about celiac disease, even some gastroenterologists.  Here is an article for you:

Celiac disease and miscarriage

I hope you have a successful pregnancy and a healthy baby!

[Katiec123]

@RMJ

it makes sense as it’s something I’ve experienced more than once. Currently 24 weeks and baby is doing well! Will be seeking more medical advice today 

[cristiana]

@Katiec123

Welcome to the forum.

I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival!

I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.  

It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will. 

If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests).

Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it.

I hope all goes well with your appointment, let us know how you get on.

Edited April 18, 2024 by cristiana

[Katiec123]

@cristiana

hi! 
the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 

[cristiana]

7 minutes ago, Katiec123 said:

@cristiana

hi! 
the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 

Hi Katie

I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps?

Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?   

Cristiana

 

[Katiec123]

@cristiana

I’ve got an appointment with the midwife next week so will speak to her then. Waiting for gp to get back to me. I’ve made the decision today to cut gluten out regardless due to the risks I’ve read about 

[cristiana]

I am not a medically qualified person, but I think in your shoes I would do the same.    

If you are in the UK, there are some really good gluten-free aisles now.  The largest range near where I live, currently, appears to be in Tesco's.

[Scott Adams]

Here are some more publications on this topic:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/fertility-pregnancy-miscarriage-and-celiac-disease/ 

[plumbago]

If you tested positive for celiac on labwork, I would definitely give up gluten.

[Katiec123]

@plumbago

on my blood tests I got 4500 and normal should be between 25-30 but they wanted me to continue eating gluten until a endoscopy was done and also biopsies taken. I’ve took it upon myself to cut gluten out today based on the research I’ve done about it during pregnancy 

[plumbago]

Yes, that's probably best. (Honestly, that is an extraordinarily high number, I've never seen anything like that. I repeated my blood tests (not taken while pregnant BTW); before giving up cake, pizza, and beer, I wanted to know for sure! You don't wanna mess around with anything while pregnant. Congratulations and best of luck!

[Scott Adams]

You can always do the gluten challenge later, after your pregnancy, should you need a formal diagnosis. I think it's best to play it safe in this case.

[DebJ14]

On 4/17/2024 at 5:11 PM, Katiec123 said:

Hi everyone! 
I’m beginning to get a bit worried. I have had the first lot of tests done and my bloods are showing as a very strong positive for coeliac. I am also currently pregnant. I have been told to continue to eat gluten until more testing is done (biopsies). If I continue to eat gluten when the chances are very high that I am coeliac, will this harm or affect baby? I feel like I don’t know where to get answers from as I haven’t seen the specialist yet 

This is concerning.  Not only do you have a higher risk of miscarriage, but you also have a much higher chance of having a low birth weight baby.  If you are not absorbing nutrition because of celiac disease, then neither is your baby.  And, if you continue down this path your breast milk may not be as nutritious as it should be either.

I had 2 miscarriages and 2 low birthweight babies that continued to struggle to thrive.  Imagine a 2 year old weighing only 19 pounds!  They were always the shortest and scrawniest kids in their class.  Unfortunately, I was not diagnosed until I was 54 and my sons were 25 and 29 at the time, so it was too late for them to reach their full height.

My daughter in law is also celiac.  My grandsons were both low birthweight babies.  She was diagnosed when the oldest was almost 3.  He grew and inch and gained 6 pounds the first month she was gluten-free.  The youngest was 7 months when she was diagnosed.  The youngest one towers over both his parents and older brother.

 

[Beverage]

Sounds like you are in the UK. With blood numbers that high, I thought docs in UK would give an official diagnosis without the biopsy. You should ask about that, so you can get support faster.  I'd try to find and print out anything that supports that in your country, get another appointment and take all of it with you.

Even in the US now, some docs are doing this, my 19 year old step granddaughter got an official diagnosis here in US with just blood results a few months ago.

[cristiana]

This might be helpful - from Coeliac UK.  

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=Usually%2C a biopsy of the,more about diagnosis of children.