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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748

    Newest Member

    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.