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

Pregnant And Just Diagnosed


gem

Recommended Posts

gem Newbie

Hi. I am hoping that someone may be able to give me some good advice as I am feeling a tad stressed at the moment. Over the last 15 months I have had 5 miscarriages (2 biochemical pregnancies, 3 m/cs between 5 1/2 and 10 1/2 weeks). I was tested for a range of different things after m/c 4 and was found to be cardiolipin antibody positive ie. antiphospholipid syndrome (APS) which is a blood clotting problem. It was assumed that this was the reason I was m/cing and I was told to take aspirin and heparin injections in my next pregnancy. The specialist did not do many further tests and did not test for coelaics as he said we found the problem. I was not happy with this specialist so I saw another local one who did all the other tests that I thought were relevant and then referred me down to Melbourne ob to get a second opinion on the treatment of my blood clotting disorder. We had been given the all clear to ttc again. Anyway, 2 weeks ago I saw the Melb specialist who said once again that it was probably APS that was causing my m/cs but did a few more tests anyway. I am now 4 weeks pregnant and got a call yesterday to say that my tests results indicate that I have coeliac disease. Whilst we can't confirm it via biopsy now he said that the 2 blood tests for this both came back very high so he is pretty much 100% sure- it does make sense to me that this is the case. He said that it may be too late for this pregnancy already. I am obviously now freaking out now that I will m/c again. Any creative ideas anyone? I am really struggling to be positive at the moment so even some positive stories would inspire me right now. The specialist obvioulsy advised me to go on a gluten free diet, but didn't say that much about increasing folic acid intake. What level of folic acid do other people take? Thanks so much for listening to my story.


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



Celiac.com Sponsor (A8-M):



gem Newbie

sorry think I may have posted this under the wrong thing, forum rather than topic?

hjkmatthews Apprentice

Hello,

I'm sorry I don't have very much advise for you, I just read your post and wanted to let you know I'll be praying for you. I have one daughter, and got her on the first try, so I can't imagine all that you have been through. I really wish you the best of luck with this pregnancy. I'm also glad you were finally diagnosed with celiac disease as maybe the diet change will improve your immune system enough for you to be able to carry the baby full term. I know that when my daughter went gluten-free her immune system boosted immediatley and she hasn't even had so much as a cold since then. She used to have severe asthma and ear/throat infections and major allergies. Anyways, I do think that normal prenatal vitamins should have the increased amount of Folic acid that you need during pregnancy, but since you may have damage to your intestines from the Celiac, maybe you might need more as your intestines may not be absorbing the vitamins as much as they should be. I think you should find a very good specialist who deals with Celiac (Coeliac) disease. Best of luck to you, let us know how everything works out!

SofiEmiMom Enthusiast

Hello. I was diagnosed gluten intolerant 'after' both of my pregnancies. I carried both children full term. I was SO sick during both of my pregnancies. I know now that it was just too much for my body to handle since I was still consuming gluten at the time. So hopefully, if you are very strict about your diet and don't cheat than maybe it would improve your chances for a healthy pregnancy. I'll pray for you :) . I took 400 mg of folic acid per day when I was pregnant - that was the only thing I 'could' tolerate. I tried taking the pre-natal vitamins and I threw them up every time.

beccathorn Newbie

Gem

Hi! I'm sorry for your losses. I hope this pregnancy will be different for you. I don't know how much you know about Celiac and the gluten free diet but you have to be extremely strict now. I loved the book- Wheat free, worry free. It really helped me understand what all was involved in the gluten free diet. I'd recomend staying home mostly and eating only what you make at first. It took me a lot of trial and error to figure out what I could have and not in restaaurants and you don't want to take those chances right now. Start making simple meals- whole foods. Since gluten is in most processed foods cut them all out until you know which ones are safe. Explore your local health food store there are a lot of gluten free options, mixes, sauces, etc. Find a good gastro Dr that other Celiacs in your area have recommended, often there are support groups locally. Try and find someone who is recommended because I've found even w/ the recommended Drs there is a lot of wrong information that they try and give you. But, anyway, have a blood test to see what vitamins or minerals you may be deficient in. Then they can tell you whether or not to take additional vitamins over your regular prenatal. Also make sure those prenatal vitamins are gluten free, many are not. I've tried a few, but rght now, I like Now Prenatal caps. They are reasonably priced, I found them at my local vitamin/herbal shop. Going gluten free is the most important thing right now, so concentrate on that and finding a good gastro Dr.

I'm 5 mos. pregnant now with our first. I have Celiac but am finding it hard to get diagnosed. I went thru a lot of worrying as well. Try to relax and not worry- easier said then done right? I found a way to push it out of my mind somehow and just focus on my diet and on remaining positive for my baby. Do the best you can and pray for a great outcome! Good luck and keep us upated!

Becca

Archived

This topic is now archived and is closed to further replies.

  • 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. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    2. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    3. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    4. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

    5. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,001
    • Most Online (within 30 mins)
      7,748

    bonniebeebe143
    Newest Member
    bonniebeebe143
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
×
×
  • 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.