Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Finding out I’m coeliac whilst pregnant

Katiec123
 Share

Recommended Posts

Katiec123 Newbie
Katiec123
Posted

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 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

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 Newbie
Katiec123
Posted
  • Author

@RMJ
 

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

RMJ Mentor
RMJ
Posted

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 Newbie
Katiec123
Posted
  • Author

@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 Veteran
cristiana
Posted
(edited)

@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 by cristiana
Katiec123 Newbie
Katiec123
Posted
  • Author

@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 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted
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 Newbie
Katiec123
Posted
  • Author

@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 Veteran
cristiana
Posted

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 Grand Master
Scott Adams
Posted

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 Experienced
plumbago
Posted

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

Katiec123 Newbie
Katiec123
Posted
  • Author

@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 Experienced
plumbago
Posted

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 Grand Master
Scott Adams
Posted

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 Enthusiast
DebJ14
Posted
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 Proficient
Beverage
Posted

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 Veteran
cristiana
Posted

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.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/ Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and...
    2. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Second chance

      Ijmartes71 I son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties...
    3. cristiana
      - cristiana replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      Just to say that I too was hesitant to come off dairy products completely @dsfraley. Milk, yoghurt and soft cheeses definitely caused bloating. This bloating gave me rib and pelvic pain, and I remember the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu. Milk, yoghurt and soft cheeses also...
    4. trents
      - trents replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      Yes, that is the suggestion.
    5. Wheatwacked
      - Wheatwacked replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      Anyway, I have no problem with grass fed milk other than the price. Maybe I should move to Ireland or New Zealand. They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week. A year ago I had over ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,562
    • Most Online (within 30 mins)
      7,748
    Hannah Kelch
    Newest Member
    Hannah Kelch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By knitty kitty · Posted

      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  
    • Mari
      Second chance

      By Mari · Posted

      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
    • cristiana
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By cristiana · Posted

      Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.
    • trents
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By trents · Posted

      Yes, that is the suggestion.
    • Wheatwacked
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By Wheatwacked · Posted

      Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.   Mucosal reactivity to cow's milk protein in coeliac disease This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet. So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.