Anyone Here With Rpl?

[breann6]

i just recently found out that i have celiac- and in the past year have suffered three possibly four miscarriages . i had another miscarriage four years ago before we conceived our son. My husband i both have fertility issues, with mine being more severe. I have severe tubal damage mainly to my right tube, but with some damage to the left because a ruptured appendix at age three.

our history;

Five years ago we were told both tubes were blocked and did IVF to concieve, the first pregnancy ended in a m/c and then the second pregnancy (IVF) resulted in our beautiful three and half year old son. We want more children and after re-doing our fertility workups to go through IVF again last year found my left tube was open. I got pregnant the next month naturally but, unfortunately that ended in a miscarriage as well as the next two natural pregnancies, and possibly a third unconfirmed (no hcg blood test) but positive hpt that ended three days later in a bleed.. We proceeded to try IUI with injectables and didn't conceive. i haven't been pregnant since around march-april.

**I have been gluten free two weeks yesterday. My dr (primary) thinks that my m/c's may have been related to the celiacs and my obgyn agrees. How long should i be gluten free before trying again to give myself the best shot at sustaining a pregnancy??

anyone here with rpl- go on to conceive and deliver after going gluten free?

-thanks in advance, sorry for rambling....

[2Boys4Me]

You're not rambling. I have no advice, but wanted to wish you luck.

[breann6]

i see below- in another post- that some recommend 6 months or until blood work returns to normal. so that gives me a time frame to look at. we are rechecking my bloodwork monthly as far as I know. My primary said we can monitor that way or every three months. i rather do monthly since i am anxious to get going.

thanks!

Breann

[azmom3]

First of all, I wanted to say sorry for what you've been going through. Having had a couple miscarriages, I know how stressful it can be, but adding in all the other stuff that you've gone through just multiplies the stress I'm sure.

In addition to the gluten free diet, I would try to find as many stress relievers as possible (much easier said, then done probably) and even better yet, try to avoid it whenever possible.

I'm sure someone here will have some better information for you as this is a great place, but I do remember seeing the link between miscarriages and celiac, so hopefully this is your answer adn you things will go better next time now that you know to be gluten free.

On another note...are you double-jointed by any chance? I know it sounds crazy, but a friend of mine lost 7 out of 8 pregnancies and was then asked to be part of a study, where they determined that there is actually a link between these believe it or not. I can't remember exactly what she said, but people who are double-jointed have too much or too little of something or other that is needed during pregnancy. My friend was given something to balance it out or something and had another successful pregnancy after that. Sorry my information isn't very thorough...I do know there is a link and a way to make it better, but just can't remember all the other stuff very well. If by some chance you're double-jointed let me know and I'll try to get more details. I'd say it's much more likely to be the celiac, but thought I'd throw this out there just in case...you never know if it might help someone.

Anyways, good luck with the gluten-free diet and your next pregnancy.

[angst2amity]

I have three children. I have had multiple pregnancy losses though. Didn't know if I was Celiac - but now I think I was.

When you get pregnant, have them test your progesterone levels if they haven't. I am thinking that Celiacs don't make much, related to thyroid function somehow. I had to take it around the clock during the first tri-mester to keep my children. When I took it, I had NO MORE LOSSES. Maybe you can test levels before becoming pregnant as well. I went to a high-tech OB place because my regular DR. and OB couldn't figure out the losses - the new place said "lets test this and fix it"! I hope it could be this easy for everyone with losses. An idea to look into! My children are bright, happy, and healthy. A few odd things - maybe celiac related, but no problems from taking progesterone - just brought my levels up to normal human function.

With second child, he came very close to neural tube defect, I believe from folic acid deficiency - took major doses with the third. Second child has a dimple above his butt crack that is so deep - mmeters away from his spinal column. If it goes all the way through, I guess your spinal fluid just drips out renderin you unable to walk. He also weighed 11.5lbs and no diabetes.

[Guest nini]

I had several miscarriages before my daughter, when I conceived her I was trying the gluten-free diet on my own, stayed on it through the first trimester until idiot Dr. told me that the diet was bad for the baby and it was all in my head... anyway, complicated pregnancy after that, early delivery... yada yada... Dr. was wrong, 3 years later I was dx'ed with Celiac. I think it was all connected. I also had low progesterone and had to take progesterone supplements.

[tarnalberry]

difficulty getting pregnant or maintaining a pregnancy has been connected to untreated celiac disease (likely due to a nutritional deficiency). sticking to the diet will hopefully help. good luck!

[breann6]

First of all, I wanted to say sorry for what you've been going through. Having had a couple miscarriages, I know how stressful it can be, but adding in all the other stuff that you've gone through just multiplies the stress I'm sure.

In addition to the gluten free diet, I would try to find as many stress relievers as possible (much easier said, then done probably) and even better yet, try to avoid it whenever possible.

I'm sure someone here will have some better information for you as this is a great place, but I do remember seeing the link between miscarriages and celiac, so hopefully this is your answer adn you things will go better next time now that you know to be gluten free.

On another note...are you double-jointed by any chance? I know it sounds crazy, but a friend of mine lost 7 out of 8 pregnancies and was then asked to be part of a study, where they determined that there is actually a link between these believe it or not. I can't remember exactly what she said, but people who are double-jointed have too much or too little of something or other that is needed during pregnancy. My friend was given something to balance it out or something and had another successful pregnancy after that. Sorry my information isn't very thorough...I do know there is a link and a way to make it better, but just can't remember all the other stuff very well. If by some chance you're double-jointed let me know and I'll try to get more details. I'd say it's much more likely to be the celiac, but thought I'd throw this out there just in case...you never know if it might help someone.

Anyways, good luck with the gluten-free diet and your next pregnancy.

do you mean double jointed as in the hips? or what? my hips can pop in and out of socket quite easily...my shoulders are the same way- like twisting my arms more than normal? hmmmm strange...i'm interested though...

thanks for your help, i really appreciate it.

[breann6]

i have had the progesterone checked everytime and it seems to be fine. on the high side after ovulation and around the pregnancy test it seems to hang out just around the 'safe' level, i have taken progesterone in oil injections with my son (which is also my live birth) so that may be another connection, i don't know. At first glance the specialist all think the progesterone is fine and not the issue, but something is....i so want to pin it on celiac, and feel confident that the next (hopefully) pregnancy is going to stick because i'll be healthier and gluten free. i pray that, anyway.

thanks you all for your advice. its comforting to know that im not alone. which is also sad

[Lisa]

difficulty getting pregnant or maintaining a pregnancy has been connected to untreated celiac disease (likely due to a nutritional deficiency). sticking to the diet will hopefully help. good luck!

There was a clip on TV News this evening that low iron in the blood can effect a pregnancy, or maintaining.

I too lost one many years ago between, my two daughters.

[breann6]

There was a clip on TV News this evening that low iron in the blood can effect a pregnancy, or maintaining.

I too lost one many years ago between, my two daughters.

could be that as well- i have been anemic almost every time i have a blood draw- I take iron in my prenatal- i'll get that checked when i go back for bloodwork to recheck the celiac panel before our next IVF.

~breann

With second child, he came very close to neural tube defect, I believe from folic acid deficiency - took major doses with the third. Second child has a dimple above his butt crack that is so deep - mmeters away from his spinal column.

---

my son has a neural tube defect, we just found out last weekend that he has a Spinal Fusion Defect, and we hope its congenital and not a disease causing the spine to fuse. They said its most likely congenital neural tube defect- though. I took prenatal- when pregnant, but not any extra folic acid. i had major hyperemesis with him and only ate bread- which probably made it all worse. he was a big baby- a month premature and weighing in at 6.8-

i take extra folic acid now- along with a prenatal thats high in folic acid....

[Darlene]

I would like to add my sympathies for what you are going thru. I have had 4 miscarriages, between the birth of my DS (11) and DD (3). Testing showed "sticky blood" being caused by a gene mutation (MTHFR) that required blood thinners (aspirin/Clexane injections) for part of pregnancy and resulted in our DD. This gene mutation has a link to folic acid/homocysteine. Have you had complete blood work-up?

Have since found out that amalgam fillings/celiac may also affect blood composition, leading to implantation problems, and hence early (prior 10wks) miscarriage.

Please hang in there - you are definately not alone

[angst2amity]

my son has a neural tube defect, we just found out last weekend that he has a Spinal Fusion Defect, and we hope its congenital and not a disease causing the spine to fuse.

That is so scary! If folic acid causes problems in healthy (non-malabsorption ridden) women, why don't they push it more? Can they test the blood for folic acid levels? Should they test all women for celiac genes when they become pregnant? I know it is 1in 133, but if that one has 5 kids, etc.

I had to take progesterone for the first trimester to carry a baby (which I said before) but this made me have hyperemesis as well. But then I also gained around 100lbs with each child - I think that I was trying to get the nutrients to the baby while having malnutrition myself - so I ate everything not nailed down.

Sorry to go off topic, but it kind of goes together. Problems getting pregnant, staying pregnant, and then having a healthy baby. If you are celiac, then you have to stay on the diet - but is that enough? It sounds like most will need progesterone support, increased folic acid, and what else? Any other deficienies that stand out?

My youngest was born with a large cyst sticking out of his temple. It seems to have resolved now that he is three, but we have had a few other concerns with him as well.

[Guest Kathy Ann]

I had several early stage miscarriages interdispersed between my live births. Never knew why until I was recently diagnosed. So God still blessed me with children in spite of my condition. It is wonderful that you now can be gluten free and possibly stop that tragic pattern of miscarriage while you are still young. Be faithful with your diet and it should make a huge difference if you are indeed gluten intolerant. God Bless.

[lilaclissa]

I am so sorry for your loss. I know how bad it hurts. I have had several pregnancies and had 1 child make it. I have had positive home preg tests but then miscarried within the first trimester. I blame the celiac disease as well. I am now 37 with an 18 year old girl. I personally will not try for anymore but wish you all the luck in the world.

[azmom3]

do you mean double jointed as in the hips? or what? my hips can pop in and out of socket quite easily...my shoulders are the same way- like twisting my arms more than normal? hmmmm strange...i'm interested though...

thanks for your help, i really appreciate it.

Sorry I'm just getting back to you on this. I talked to my friend again about the double-jointed / miscarriage correlation. She said that double jointed people have thicker blood adn as the pregnancies moved along, the blood would get too thick which would result in losing the baby. They put her on a blood thinner and next pregancy (after I think 7 losses in a row) was a happy, healthy little girl. She said that any high risk pregnancy dr. should know about this and how to treat it. Like I said, much more likely it's the celiac link, but if it means a baby, in my opinion, just about anything is worth looking into. Good luck!

[breann6]

Sorry I'm just getting back to you on this. I talked to my friend again about the double-jointed / miscarriage correlation. She said that double jointed people have thicker blood adn as the pregnancies moved along, the blood would get too thick which would result in losing the baby. They put her on a blood thinner and next pregancy (after I think 7 losses in a row) was a happy, healthy little girl. She said that any high risk pregnancy dr. should know about this and how to treat it. Like I said, much more likely it's the celiac link, but if it means a baby, in my opinion, just about anything is worth looking into. Good luck!

Thanks- I have already been taking thinners with each pregnancy- except for one. I was onheparin/lovenox injections and then baby aspirin, along with estradiol in oil injections and progesterone in oil injections, it was a TON of shots but worth it....

I'll mention it to my dr next visit anyway

~thanks

-also to others- I have had (i think) every lab test under the sun ran for RPL and nothing came back waving the flag- thats the main reason i am so ready to pin the tail on celiac for my losses, no other obvious reason jumping out....we'll start the whole process over soon and see what happens... Thank you for all your support and advice. (hugs)

~Breann

[mom2jpb]

i just recently found out that i have celiac- and in the past year have suffered three possibly four miscarriages . i had another miscarriage four years ago before we conceived our son. My husband i both have fertility issues, with mine being more severe. I have severe tubal damage mainly to my right tube, but with some damage to the left because a ruptured appendix at age three.

our history;

Five years ago we were told both tubes were blocked and did IVF to concieve, the first pregnancy ended in a m/c and then the second pregnancy (IVF) resulted in our beautiful three and half year old son. We want more children and after re-doing our fertility workups to go through IVF again last year found my left tube was open. I got pregnant the next month naturally but, unfortunately that ended in a miscarriage as well as the next two natural pregnancies, and possibly a third unconfirmed (no hcg blood test) but positive hpt that ended three days later in a bleed.. We proceeded to try IUI with injectables and didn't conceive. i haven't been pregnant since around march-april.

**I have been gluten free two weeks yesterday. My dr (primary) thinks that my m/c's may have been related to the celiacs and my obgyn agrees. How long should i be gluten free before trying again to give myself the best shot at sustaining a pregnancy??

anyone here with rpl- go on to conceive and deliver after going gluten free?

-thanks in advance, sorry for rambling....

[mom2jpb]

My heart goes out to you. I also have had multiple miscarriages. My doctor told me I had a comproised uterus - realty was that I was a victim of physical abuse while I was pregnant (and when I wasn't). In 1999, I gave birth to a beautiful, precious son, who was two years later diagnosed with autism. (I was assaulted when I was 15 weeks pregnant with him, and spent the rest of the pregnancy on bed rest). I was diagnosed celiac about two months ago.

I firmly believe there is a link between celiac, miscarriages, autism, and physical abuse.

My prayers are with you. I understand the devastation all too well.