Misscarriages Due To Untreated Celiac

[Kels]

Hello There,

I am a newly diagnosed coeliac who has been looking for people who have been through a similar ordeal as I have.

I have been on the diet for almost a month now. I practically forced my doctor into testing me because I have had two 2nd trimester miscarriages in the past year with no known causes...until now that is. The first miscarriage was at 13 wks and the second at 16 wks. (Before this I carried two healthy babies who are now 3 & 5 yers old. Both pregnacies were pretty good overall, they were both big babies delivered at 39 and 38 wks).

My father is a coeliac which is why I thought my miscarriages may have been related to the disease. Well, I was right....my testing came back positive and my ob thinks the miscarriages were most certainly related. He has advised me to be strictly gluten free for at least 6 mths before conceiving again. I am soooo hopeful that by soing this I will eventually have another healthy baby as the loss of my 3rd & 4th babies has devestated me. After reading all of your messages here I am a little more hopeful of a good outcome. It certainly seems that by remaining gluten free the chances of carrying to term are a lot higher.

My advice to anyone who has not been fully diagnosed with the disease but has had successful pregnancies while not on the diet is to please have all the testing done before another pregnancy. A history of healthy babies does not mean it will continue. And finally a question...have any of you had a non gluten free then gluten free pregnancy to compare? If so, could you please let me know the outcome? Thanks so much.

Kelly

[AndreaB]

Hi Kelly and welcome to the board!

I have not been gluten free for pregnancies. I was my last baby that alerted me to a problem. He broke out with eczema at about 2-2 1/2 months old. That led me to allergy testing and then to testing through enterolab. This last pregnancy was my only vegan pregnancy and I still wonder how much damage I caused him since he seems to be sensitive to gluten and soy.

Thank you for posting your story, I'm sure many will take your advice to heart. I'm so sorry about your losses, that has got to be heartwrenching. I'm thankful that you have found out about celiac and can go forward in health and a new pregnancy a little down the road.

[Ruth52]

After two normal pregnancies, I had two successive miscarriages (25 weeks & 12 weeks). Now looking back I attribute them to Graves Disease (overactive thyroid) which, although it was only diagnosed two years ago, I have probably had for at least thirty. Quite possibly I was also gluten intolerant way back then, but with all the grief & frustration of multiple miscarriages I didn't know what to blame or where to look for answers.

From what I have read autoimmune diseases play havoc with pregnancies. I wish there was more information out there, not only for the medical profession, but also for all those women who repeatedly miscarry and don't know where to turn next.

I am sorry for your loss and hope that the next twelve months bring happiness for you.

Ruth

[Guhlia]

I don't have anything useful to add. I just wanted to say that I'm so sorry for your losses.

[taz sharratt]

hi kelly welcome to the board. i have 3 chidren and have had several misscariages myself ( all before i was dx). the odd thing was after every full term pregnancie i have had a misscarriage inbetween and 2 more after my last son. the last misscarriage was very traumaticfor myself and not only my hubby but the kids too as they knew i was gonna have another baby and had been excited. lol. taz

[hannahsue01]

Hi.....I am glad you posted this topic. I wish I had known more about this disease and what it could do before I became pregnant. My Grandmother and my cousing had been diagnosed I think about two years ago but I did not know what it was and didn't think much of it. I myself have had one healthy baby at 41 weeks (6lbs 7oz) almost 5 years ago. I had a another baby back in December at 29 weeks (2lbs 9oz). Despite her problems and what we have gone through I thank God everyday that our miricle baby is still with us. Since then I have had one miscarige (I got pregnant while on birth control....errrr). Now I am going back on the shot rather than the pill so that this won't happen again......I couldn't bare to go through this again or especially to knowingly but a baby at such a risk. I am not a doctor but I would advise anyone with celiac or anyone who thinks they may have it to wait untill there diet and celiac is under control before even thinking of getting pregnant. Needless to say it is devastating to have a miscaraige but my husband and I have seen to many devastating things happen in the NICU to our daughter as well as other babies....even babies sicker than ours who will be dealing with major issues for the rest of there lives.

[Kels]

Hi Everyone,

Thank you all for listening. My losses have been really hard to cope with but I am having more good days than bad at the moment and I am trying to look forward to a bright future. I am sorry to all of you that have had to go through this too. Life isn't always easy and we are all faced with pain at some stage of the journey. It just takes a few bad experiences to realise this and how we cope with it is very important. I try not to give up hope and focus on the good things I have been blessed with.

My plan is to stick to a very strict gluten free diet and try to conceive some time next year. I am very hopeful that everything will be ok next time round as I already feel so much healthier since starting the diet. I will let you all know when I deliver my healthy baby!!

Thanks again, Kelly

[Michi8]

Hello There,

I am a newly diagnosed coeliac who has been looking for people who have been through a similar ordeal as I have.

I have been on the diet for almost a month now. I practically forced my doctor into testing me because I have had two 2nd trimester miscarriages in the past year with no known causes...until now that is. The first miscarriage was at 13 wks and the second at 16 wks. (Before this I carried two healthy babies who are now 3 & 5 yers old. Both pregnacies were pretty good overall, they were both big babies delivered at 39 and 38 wks).

My father is a coeliac which is why I thought my miscarriages may have been related to the disease. Well, I was right....my testing came back positive and my ob thinks the miscarriages were most certainly related. He has advised me to be strictly gluten free for at least 6 mths before conceiving again. I am soooo hopeful that by soing this I will eventually have another healthy baby as the loss of my 3rd & 4th babies has devestated me. After reading all of your messages here I am a little more hopeful of a good outcome. It certainly seems that by remaining gluten free the chances of carrying to term are a lot higher.

My advice to anyone who has not been fully diagnosed with the disease but has had successful pregnancies while not on the diet is to please have all the testing done before another pregnancy. A history of healthy babies does not mean it will continue. And finally a question...have any of you had a non gluten free then gluten free pregnancy to compare? If so, could you please let me know the outcome? Thanks so much.

Kelly

I am sorry to hear about your losses, Kelly. It's so good you were able to figure out it is related to celiac...it must feel good to know that you have diagnosed the problem, and can go on to experience better health and future successful pregnancies.

We have family friends (two sisters) who have experienced nothing but problems with pregnancies (infertility, failed IVF, mutliple miscarriages, serious health issues post pregnancy.) I really wish they would consider testing for celiac. Don't know if their doctors will ever make the connection though. Unfortunately, any time I suggest testing for it, everyone looks at me like I'm nuts.

Michelle

[MaryKyburz]

My first 2 pregnancies were pretty normal. My 3rd pregnancy was a miscarriage at 8.5 weeks. I was on a gluten/casein free diet when I miscarried, although I had not been diagnosed with celiac. I was on the diet because my oldest child is high-functioning autistic, and he is gluten/casein free because of the autism. I was doing the diet to get a head start on preventing autism with another child. I've since found out that a few of the foods I was eating were not gluten free, so I was not 100% gluten free when I miscarried. I also was not taking my pre-natal vitamins, nor was I on progesterone, like I was with my 2nd pregnancy.

By the time I was pregnant the 4th time, I think I had it pretty much figured out. Started my pre-natals 2 months before becoming pregnant, told my Dr. that I wanted to be on progesterone, and also took lots of extra folic acid before conception and also for the first several weeks of pregnancy. I wasn't on the diet when I got pregnant, but started the Gluten-free Casein-free diet at about 6 months. That's when my celiac symptoms started. I had severe "D" everytime I would cheat on the diet, or accidently get some gluten. I also slacked off on my vitamins towards the end of the pregnancy, and he was born 4 weeks early!! I'm now totally gluten free, and feeling great. The baby is doing fantastic. He is not showing any sensitivity issues like my autistic child. No colic like my 2nd child. He's totally happy and easy!! If I get "glutened" he does get congested and projectile vomits, so I'm not taking any chances with introducing any gluten or dairy with him. I plan to keep him away from it until he's in college!!!!

I would recommend the pre-natal vitamins from LifeTime "professional pre-natal formula"....serving size is 6 a day!! You might have to order them on-line if your health food store doesn't have them. Or maybe they can order them for you. They have so much more than any other pre-natal. Prescription pre-natals do not have nearly enough of what you will need!!!

[Kels]

My first 2 pregnancies were pretty normal. My 3rd pregnancy was a miscarriage at 8.5 weeks. I was on a gluten/casein free diet when I miscarried, although I had not been diagnosed with celiac. I was on the diet because my oldest child is high-functioning autistic, and he is gluten/casein free because of the autism. I was doing the diet to get a head start on preventing autism with another child. I've since found out that a few of the foods I was eating were not gluten free, so I was not 100% gluten free when I miscarried. I also was not taking my pre-natal vitamins, nor was I on progesterone, like I was with my 2nd pregnancy.

By the time I was pregnant the 4th time, I think I had it pretty much figured out. Started my pre-natals 2 months before becoming pregnant, told my Dr. that I wanted to be on progesterone, and also took lots of extra folic acid before conception and also for the first several weeks of pregnancy. I wasn't on the diet when I got pregnant, but started the Gluten-free Casein-free diet at about 6 months. That's when my celiac symptoms started. I had severe "D" everytime I would cheat on the diet, or accidently get some gluten. I also slacked off on my vitamins towards the end of the pregnancy, and he was born 4 weeks early!! I'm now totally gluten free, and feeling great. The baby is doing fantastic. He is not showing any sensitivity issues like my autistic child. No colic like my 2nd child. He's totally happy and easy!! If I get "glutened" he does get congested and projectile vomits, so I'm not taking any chances with introducing any gluten or dairy with him. I plan to keep him away from it until he's in college!!!!

I would recommend the pre-natal vitamins from LifeTime "professional pre-natal formula"....serving size is 6 a day!! You might have to order them on-line if your health food store doesn't have them. Or maybe they can order them for you. They have so much more than any other pre-natal. Prescription pre-natals do not have nearly enough of what you will need!!!

Hi There,

I am glad things are working out for you and thanks for the recommendations. My ob has advised me to take 5mg of folate but hasn't really recommended any other pre-natal vitamins - at least not until I fall pregnant. It's something I will bring up with him though. Its interesting that your baby is so good. My two both had terrible colic and I had heaps of trouble breast feeding them. Hopefully many of these problems will rectify now that I am gluten free.

Take Care and thanks again, Kelly

[Kels]

I am sorry to hear about your losses, Kelly. It's so good you were able to figure out it is related to celiac...it must feel good to know that you have diagnosed the problem, and can go on to experience better health and future successful pregnancies.

We have family friends (two sisters) who have experienced nothing but problems with pregnancies (infertility, failed IVF, mutliple miscarriages, serious health issues post pregnancy.) I really wish they would consider testing for celiac. Don't know if their doctors will ever make the connection though. Unfortunately, any time I suggest testing for it, everyone looks at me like I'm nuts.

Michelle

Hi Michelle,

Thanks for your reply. I am very relieved to have an answer to my losses, however I'm not sure I will fully beleive the answer is correct until after I have another sucessful pregnancy. I am trying my best to be positive and deep down really do think I will be fine now but its really hard not to be nervous and a bit paranoid when things have gone so wrong in the past.

Its such a shame that you sisters wont take your advice and be tested. I know I would have done every test under the sun to get to the bottom of my problems. I had to practically force my gp to test me and even my ob didn't think it would be a link until he really investigated it so I know what you mean about the doctors. Even if the testing comes back negative for your sisters....at least they can rule it out then. Maybe you can pass on some of the stories here for a bit of added support?? Take Care Kelly

[Michi8]

Hi Michelle,

Thanks for your reply. I am very relieved to have an answer to my losses, however I'm not sure I will fully beleive the answer is correct until after I have another sucessful pregnancy. I am trying my best to be positive and deep down really do think I will be fine now but its really hard not to be nervous and a bit paranoid when things have gone so wrong in the past.

Its such a shame that you sisters wont take your advice and be tested. I know I would have done every test under the sun to get to the bottom of my problems. I had to practically force my gp to test me and even my ob didn't think it would be a link until he really investigated it so I know what you mean about the doctors. Even if the testing comes back negative for your sisters....at least they can rule it out then. Maybe you can pass on some of the stories here for a bit of added support?? Take Care Kelly

This site certainly is a great resource...I will be passing the URL along to those who could use the support. Just to clarify, the friends I mentioned earlier are not my sisters, but are sisters to each other.

However, I do have two brothers who show GI signs of celiac that are worse than mine and should definitely be tested. On top of that, one brother (and his wife) had a baby almost two years ago. The pregnancy was full of health problems, and the baby (my niece) had problems with breastfeeding, eating oats/grains and had a milk allergy (has now outrgown it?!) She is constantly sick too, especially since she is in daycare. I believe she may have celiac disease, and needs to be tested now to avoid future health problems. But, until I'm tested myself (biopsy), noone will believe that they need to test too.

Michelle

[diamondheart]

Check out this page on Open Original Shared Link that has abstracts from medical journals about the links between celiac disease and infertility and miscarriage.

Claire

[cdevorerun]

Thank you so much for posting. I received my postitive test results for the Celiac/Gluten gene about 6 months ago. When I got my diagnosis and read more about celiac disease, I suspected that my miscarriage 5 yrs ago was related, but now after reading these postings, I'm more certain than ever. I had two successful full-term pregnancies, but miscarried my 3rd at 12 weeks. Back then I wasn't on a gluten-free diet.... I didn't even know what gluten was back then! I tried to get pregnant again for several years...there were many, many tests and even some infertility treatment...but no pregnancies and no explainations from my Dr. Sadly, there was never a suggestion that a gluten test be done. In the end, I was diagnosed with "unexplained infertility".

Two years ago my brother was diagnosed with Celiac Disease. He had been diagnosed with MS, but, luckily, a new Dr. suggested that his symptoms were very consistent with celiac disease. He tested positive. I am one of 5 children, so as we develop symptoms, we are being tested. So far, three of us have been tested and all three are genetically identical and positive. I have found that my symptoms can be controlled (mostly) through diet. But it isn't easy and it is so frustrating...but any Celiac knows that. The good news from my testing is that maybe for the first time in 5 years my "unexplained infertility" has an explaination.

I have started wondering again whether pregnancy could be possible now that I'm on a gluten-free diet. I'm taking my Enterolab results to my OB and will find out more. Thank you so much for posting your story. I'm so sorry for all of the women who have lost pregnancies and have had to endure that tremendous heartache due to celiac disease. Maybe there is hope now that we know the connection and can get more and more information. I'll post what I find out from my OB.

[GFLiisa]

Thank you so much for all of your posts. Very helpful information!

[ylimaf]

2 months ago I miss carried a set of triplets. I learned it was caused by celiac disease. It is so important to stay gluten free. I am pregnant again. From what I understand it takes 6 months to heal after starting a gluten free diet. Even then it takes a long time to learn everything about gluten free foods. It took 1 and a half years after my toddler was found to suffer from celiac diseas to learn as much as I know now. I am still learning more about it everyday. God bless and hang in there. Just wait 6 months please.

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