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

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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!

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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.

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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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    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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