"problem Pregnancies", Pre-term And Celiac

[wonkabar]

Hi! I've posted many times about my son, Zachary, but now it's a question about me. My girlfriend just sent me an article from August/2006 Good House Keeping regarding a woman's difficulties with preganancies and finally a Dx of Celiac after many, many years. It never even occured to me that I could be a carrier of the Celiac gene until my 3 year old tested positive for one main Celiac gene and one gluten sensitive non-celiac gene as well as an auto-immune reaction to gluten. Thankfully, he tested neg for fat malabsorption. I don't think I have any of the "classic" symptoms, however I had problems with my pregnancies.

FIRST PREGNANCY:

**took approx. 1 year to get pregnant even with being very dilligent and calculated with our "efforts"

**low HCG levels (injections throughout first trimester), even with HCG support levels were stilll low

**low progesterone (on supplements first 10 weeks)

**pre-term at 27 weeks/hospitalized on bed rest (only out of bed to use the potty), low

amniotic fluid, premature shortening of cervix (approx. 50% effaced at 27 weeks!), delivered via emerg.

c-sec at 32 weeks, placenta looked old and "ratty"

SECOND PREGNANCY:

**miscarriage at approx. 6 weeks with twins

**low HCG levels that didn't increase again

**low progesterone

**OB initally thought it was a Molar Pregnancy, needed DnC

THIRD PREGNANCY:

**HCG levels were much higher, relatively speaking, but closely monitored

**low progesterone (on supplements first 10 weeks)

**pre-term at 34 weeks ("real" contractions and 1 cm dialated)

**delivered via emerg c-section at 35 weeks, low bio-physical profile (included low amniotic fluid), placenta looked old and "ratty"

**didn't feel baby as frequently during this pregnancy

I believe things went "better" during this pregnancy b/c my OB was so proactive due to my history. I saw the doctor every 2 weeks, had a non-stress tess every week (baby wasn't as "reactive" as she should've been all the time) and an ultra-sound every 2 weeks. My file is like War and Peace! I had been tested up the whazoo (literally!! )after my first pregnancy. The only thing that came back as an issue was that I didn't properly break down Folic Acid and had to increase the amounts before and during my subsequent pregnancies. Any thoughts would be greatly appreciated!

Thanks!! --Kristy

[Guest Robbin]

First of all, I am so sorry you have gone through so much, I understand exactly what kind of frustration and heartache you are going through. First pregnancy-tried five years-was determined to have low progesterone if I am recalling correctly, then had cysts on ovaries and blocked fallopian tube, then determined to have endometriosis and was put on danocrine (sp?) to stop ovulation with the hopes that it would help (this was 22 years ago and probably is not even a safe drug) My dr. at the time said I probably had become pregnant a few times, but couldn't sustain it and it "fell out with periods" (he was an insensitive jerk) Anyway, finally got pregnant with my oldest, had bleeding off and on, determined I probably had twins, but lost one in bleeding episode- was on bed rest for the last month.

Eight years later, second pregnancy-felt horrible most of the time, developed diabetes, severe gastritis, was on insulin, and had bed rest last two months of that pregnancy. Both horrible deliveries-excessive bleeding and prolonged recovery. (Second son was forceps -broke my tailbone and herniated a disk-not pleasant when the epidural wore off) The next three years was a nightmare of heavy periods lasting weeks, clots, cramps, etc. and my dr. said I had endometriosis on the outside of the uterus too and needed a hysterectomy-I was 35 and heartbroken-

I just finally found the answers to my health problems in Jan. and I am now 45-it kills me to think of how much differently my pregnancies would have been had I been following a gluten-free diet. I believe celiac caused the infertility, problem with pregnancies and deliveries, and ultimately a hysterectomy.

Please, if you are wanting another child, stay gluten free and get stronger before you try again. Many of us on here have had these kind of problems. Most drs. are completely ignorant about this, you will find. Take care and keep us posted. edit-maybe I misunderstood-are you pregnant now? If so, I recommend staying gluten-free, it will make a huge difference with your absorption.

[wonkabar]

Please, if you are wanting another child, stay gluten free and get stronger before you try again. Many of us on here have had these kind of problems. Most drs. are completely ignorant about this, you will find. Take care and keep us posted. edit-maybe I misunderstood-are you pregnant now? If so, I recommend staying gluten-free, it will make a huge difference with your absorption.

Thanks for your reply! I honestly thought I'd hear from more women who had problems. You certainly had a tough go at it too, huh??

I'm not pregnant now. If I were, I'd have a lot of explaining to do!! And, no, we're not planning to have another child. Although we would love to, we were blessed with two healthy children despite all of the complications. My body just doesn't handle pregnancy well. It's just too much of a risk for me and the baby, not to mention it would be completely unfair to my other two children (3 y/o and 18 mos.) to put myself in a position where I could be put on bed rest and/or hospitalized. I'm certainly not wishing anything to be wrong with me, but it is frustrating knowing I've had all sorts of tests done and there "isn't anything wrong" with me. At my request, my OB is sending me an Rx for the Celiac panel and some other stuff. At 36, I'm happily married with two healthy, beautiful children....life isn't all that bad!

--Kristy

[Guest nini]

count me in on the complicated pregnancies list... I'm too tired to go into detail this morning, but after several miscarriages that they could only attribute to low progesterone, I had an extremely complicated pregnancy with my daughter and she too was pre term, emergency c-section, I had been on bed rest for the previous month or so with severe toxemia, what a mess. Fortunately my daughter and I pulled through it ok, but I will never forgive my ob/gyn for telling me that it couldn't possibly be gluten intolerance or celiac (after I had researched recurrent miscarriages and tried the diet through the first trimester with my daughter til Dr. told me it was all in my head and the diet was bad for the baby)

[KayJay]

I am sorry you had such a hard time. My ob was very watchful over me and my baby. I had some complications but nothing too bad. Maddie was a week late in fact!

[wonkabar]

I never even thought about gluten and/orCeliac being an issue for me until June when Zachary's lab results were pos for a main Celiac gene and a gluten sensitivity gene. After my girlfriend sent me the Good House Keeping article I started to wonder if there was in fact a connection.

NONE of the tests that I had after my first pregnancy indicated anything was wrong, and there's still no answer as to why I had this abscure miscarriage and again went into preterm with my third pregnancy. For some unknown reason, my placenta prematurely ages and my amniotic fluid decreases. There may be absolutely no connection and could simply be one of those things. But, it has always frustrated my husband and I that there doesn't seem to be a solid answer.

[Guest nini]

makes sense to me... There is definitely a link between Celiac and pregnancy issues, exactly what that link is, I'm not sure, but I'm just thankful that my daughter and I are ok now.

[wonkabar]

I spoke to my OB this week, and he is sending me an Rx for a Celiac panel. He is wonderful. He is the only reason my two kids (and me!!) are okay. I'm also ordering the gene testing kit from Enterolab to see if I am the one who passed the Celiac gene to Zachary. If I didn't, my pregnancy fiascos will still be a mystery! Unfortunately, it's probably too late to even know for sure if Celiac/gluten had anything to do with all of my pregnancy problems.

Does anyone have information linking Celiac and pregnancies?? What happens?? thanks!

--Kristy

[Guest nini]

Open Original Shared Link

Untreated women with celiac disease may have obstetric and gynecological problems. Amenorrhea and spontaneous abortions are reported more often for untreated women than for controls. Infertility was shown to be more common among untreated celiac women. Fertility and ability to carry an infant to term, returned when the women followed a gluten-free diet. (xiv)

Open Original Shared Link

[High-Tech Mom]

Discovering this forum has been eye-opening - thanks for your posts. My pregnancy problems have been baffling us for years. Immediately after my first delivery, the labor and delivery staff were perplexed with the condition of my placenta, too. I have severe hyperemesis with all of my pregnancies, and have to stay on special prenatal vitamins (B-6, B-12) to keep the vomiting in check. I am on my third pregnancy (currently 5 mo. preg), and my oldest child has just recently preliminarily been diagnosed with celiac disease. I am waiting for results for the rest of my family (including myself). I will update my post when we get our celiac disease results back, but it seems that celiac is linked to my pregnancy problems.

[Ursa Major]

I had five horrible pregnancies, and at least eight miscarriages. My sister, who has obvious celiac disease symptoms, but is in denial, lost four babies due to aging placentas with big cysts in them, one at three months, twins at six months (one lived for a week) and one died inside of her at eight months. After that she had her tubes tied, because she was afraid it would happen again, and a few years ago had a hysterectomy because of severe anemia due to excessive bleeding (like me).

My mother had obvious celiac disease symptoms as well, she had five miscarriages before the first living child, who lived only a week. She had eight healthy children eventually (well, really nine, one died at three months), but had awful pregnancies as well.

I am very thankful that my two oldest daughters have easy pregnancies, easy deliveries and are healthy. I hope the two younger ones will do the same thing and not be like me.

I am very sure that the problems with pregnancies in my family are gluten related.

[kalanfan]

I have a question...ursula was your bleeding caused by celiacs?......hope you dont mind me asking.....my mother had horrible pregnancies with me and my brother where she spent most of the 9 months in the hospital.....now she is having continuous bleeding and the doctor says its not menopause and her uterus is fine........could her problem be gluten related?....

[Ursa Major]

I have a question...ursula was your bleeding caused by celiacs?......hope you dont mind me asking.....my mother had horrible pregnancies with me and my brother where she spent most of the 9 months in the hospital.....now she is having continuous bleeding and the doctor says its not menopause and her uterus is fine........could her problem be gluten related?....

Well, since I've had a hysterectomy five years ago, I can't prove it was caused by celiac disease. My health was just deteriorating more and more, and I'd have my period for ten days at a time. Seven of those I would bleed so heavily that many times I thought I was hemorrhaging and almost went to the hospital. Then I had two weeks in between, and start bleeding again. Needless to say, I was eventually so anemic that more and more often I would try to get up in the morning and couldn't, because my legs wouldn't carry me!

Low vitamin K could be a reason for heavy bleeding, and many celiacs are low in that, due to malabsorption of nutrients. Here is an interesting link on vitamin K

Open Original Shared Link.

Since my mother and sister, who undoubtedly have/had celiac disease, and they had the same problem with almost-hemorrhaging- periods, I assume it was likely caused by celiac disease.

I say, see if your mother is willing to try a gluten-free diet (she would have to give it a good try of several months, because this kind of thing takes time to resolve), to see if it makes a difference. She has nothing to lose!

[hannahsue01]

I have not been officially disagnosed as my doctor won't test me and I have yet to persue it due to doctor bills. But the disease is in my family and I and others are 200% positive that I have got it. My first pregnancy almost 5 years ago now went ok and she was born at 6lbs 7oz a week late. My second pregnancy ending back in december of this year my baby girl was born at 29 weeks at 2lbs 9oz. They did not know why except that maybe she was connected to my previous c-section scare but weren't 100% sure. I now believe she was born early because of celiac disease. I have had at least one miscarage. I also had big problems producing enough breast milk. My sister who I believe is celiac but has not been tested has had some miscarages and is having a difficult time gettig pregnent. She is having problems with the hormone levels and her insulin levels.

[wonkabar]

I hope you're doing alright. I know how stressful and heartbreaking all of this can be. I also had trouble producing milk with my son. In fact, my milk never came in with him. The nurses and lactation consultants felt that my body couldn't produce milk due to the tremendous amount of stress. I agreed. However, my milk did come in with my daughter (ouch!!), but I chose not to nurse. My son did just fine as a "formula baby". I wasn't willing to go through trying to nurse and not be able to while dealing with the stress of my daughter being in the NICU. I needed my strength to take care of her. I'm not one of those people who felt like less of a mother b/c I didn't nurse. I was more concerned with being able to take care of my kids at that time!

With my son, they had me "power pumping" every 1- 2 hours. I was an emotional and physical wreck when I decided to stop. I wasn't sleeping b/c I was pumping all the time and still not producing milk. I couldn't continue to function like that and still be able to take care of my baby in the NICU or at home. I felt it wasn't fair to any of us! He's now a strapping 40lb, 3 1/2 year old and is doing just fine. My daughter is weighing in at 26 lbs at 19 months and is also doing fine.

My OB is sending me an Rx for the Celiac Screening and genetic testing.

[Kels]

Hello There,

OMG, I cannot beleive what I am reading... 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

[cntrygrl2001]

[Hello,

I don't know if you will get this or not, as it's been 5 years since your post...I am replying because I am in the same boat. I had 3 babies just fine, followed by a stillborn at 7 months, a successful pregnancy, and 3 more second trimester losses. I am now pregnant again and scard to death! I was wondering if you managed to have another successful pregnancy after going gluten free?

Thank you for your time,

Amy

Hello There,

OMG, I cannot beleive what I am reading... 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