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Pregnant And Just Diagnosed


gem

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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.


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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

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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