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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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    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
    • Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common. I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection.  It may provide some helpful info.  
    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
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