Infertility, Still Not Cured By gluten-free Diet

[minton]

I am 19 years old and was diagnosed Celiac at 16 years, 8 months. Prior to diagnosis, I had experienced many pregnancies (awful, I know, but my parents did not want to pay for any birth control method and condoms seem to routinely break). All except one pregnancy ended in miscarriage within the first 3 months after HORRIBLE morning sickness, constant cramps, migraines, and severe weight loss that could not be stopped. All were confirmed with home pregnancy tests. The one exception was a pregnancy that made it 13 weeks before it was discovered by ultrasound that the child had no brain. It was going to be born stillborn so my parents opted to force an abortion. Birth control was started a year after the surgery. FINALLY!

From then until diagnosis, no pregnancies occured. After diagnosis, the diet change really screwed up my cycle and for a few months we couldn't afford the pill. Again, miscarriages occured. A year after being on the diet, I was on the pill and still conceived three times. Twice I had the same miscarriages as before. The third time, I had no idea I was pregnant. I had periods monthly, stayed on the pill, took tests monthly just in case and all the tests were negative. After 4 months of continued weight loss (dropped from 115 to 96 and the weight loss was speeding up despite 6 meals a day), pain in the general region of my ovaries, severe cramps, etc. my mom made me go to an OB/GYN to see if I had a problem such as endodemetriosis. I don't have ANY reproductive problem according to the OB/GYN and at that visit, I discovered I was 4.5 months pregnant. She said the baby looked healthy but after a consultation with all my other doctors, a general agreement was reached that with the rate of my weight loss and the severe anemia that was present, it was best for my life to have another abortion. I hated the choice but accepted their medical advice.

Since that, I have again had pregnancies due to inability to afford the pill often (my dad lost his job so we are all struggling). Despite every effort (the emotional toll of the lost children is killing me so I make every effort to keep any child i happen to conceive now, adoption is way better than abortion) the children still end in miscarriages.

I still have no obvious fertility problem, and like I've made clear above, conception is NO problem. Any ideas what may be wrong?

[lbd]

This is going to sound harsh but:

1. Get a job and pay for your own birth control.

2. Have the guy pay for the birth control.

3. Don't have sex.

4. If you are not responsible enough to prevent unwanted pregnancies, you are not responsible enough to be a mother.

5. You don't seem to have problems becoming pregnant, so you are fertile. Perhaps it is your lifestyle that is the problem in keeping the babies.

I am sorry, but your post came across as being very irresponsible. There are many places to get free or reduced birth control. Check out Planned Parenthood. Try the new IUD devices or get better condoms.

I don't think this is a gluten problem at all.

lbd

[Mother of Jibril]

I have two ideas for you...

1) Antiphospholipid syndrome (also known as Hughes syndrome)... you can find out if you have it by testing for anticardiolipin and lupus anticoagulant. There's some overlap with Sjogren's syndrome and lupus, but all of these disorders can cause fetal death, particularly in the first or early second trimester. Keep in mind that pregnancy loss can be your only symptom. Don't let a doctor tell you that you can't possibly have APS because you've never had a blood clot.

2) Another genetic clotting disorder like MTHFR, Factor V Leiden, prothrombin mutation, etc... Do you have any history of clotting disorders, thrombosis, or strokes in your family? Testing is expensive, but you've had a LOT of miscarriages (and I'm so sorry about that... I know how devastating it is to lose a child). If you ever want to have a living child you need to figure out what this is.

[tarnalberry]

(I'm going to sound harsh too - condoms *don't* continually break if you use ones in good condition, use them properly, and don't expose them to substances that will degrade them. My husband and I rely upon condoms as a backup to FAM for birth control, with no accidental pregnancies in 10 years of having sex, and no reason to assume fertility problems in either of us. *Typical use* efficacy on condoms is in the 80% range, and you can get into the 90% range if you use them properly. "It breaks the mood" is not a proper excuse. If you are *trying* to have a baby, even subconsciously, despite the circumstances, that's a different ball of wax, and I'm certainly not going to go there.)

On to the more relevant part of the post however - you describe, buried in everything else, significant weight loss, being rather underweight and anemic, and the inability to regain that weight, despite the diagnosis, and what I presume to be you following the gluten-free diet.

So, how long have you been gluten free? How confident are you that your diet is free from contamination? Were you able to regain any weight immediately after starting the gluten-free diet? Are there other health issues/symptoms that may be connected or secondary that are part of the problem? (I'm trying to get at the underlying issue here, because there seems to be one.)

[Mother of Jibril]

This is going to sound harsh

Wow lbd. minton came to us for help.

Do you have any idea how devastating it is to lose a child? It doesn't matter if you're 19, 29, 39... or how "irresponsible" your lifestyle might be. A loss is a loss.

[zeta-lilly]

I'm sorry if this sounds harsh as well, but is this a joke? Look, I'm really sorry if you are genuine, but it's just not adding up. Do you really want to have a baby at 19, unmarried, and no money? I just don't see how someone can get pregnant THAT many times by 19. I know miscarriages are hard on people, and I'm not trying to diminish your pain, but whether or not you can carry a child to term seems like the least of your problems right now. Is this one guy or have there been several along the way? What does he think about all this? I'm not sure what your dad losing his job has anything to do with you not being able to afford birth control or not. Do you have a job? Look if you are for real, take care of yourself for awhile and then look into fertility medicine a few years down the road when you are married and can care for a baby.

[lbd]

Wow lbd. minton came to us for help.

Do you have any idea how devastating it is to lose a child? It doesn't matter if you're 19, 29, 39... or how "irresponsible" your lifestyle might be. A loss is a loss.

Yes, actually I do. I said my message was going to be harsh. This is not the case of a young woman in a responsible situation trying to have a child. From my informal count, she said she had been pregnant at least 6 times within 3 years, and maybe even more. I'm sorry but that is just irresponsible. We are living in a society where everyone wants to blame someone or something else - she blamed her parents for not providing her with funds for birth control!!!

I deal with teenagers every day and have for the last 21 years as a teacher. It is becoming an increasing problem that parents make excuses for their kids and kids make excuses for themselves. No one wants to take responsibility for themselves any more.

So, yes, I was harsh, and I apologize for that. But it needed to be said. Minton, if you have are having these problems for real, I would suggest you go to a clinic immediately. Planned Parenthood can help too. Get medical help - this is not the place to solve what seems to be very serious problems on many levels that may not even be related to gluten.

lbd

[minton]

To all that decided to be harsh and not even try to answer my question...for irresponsiblilty, I realize its not responsible to have a child right now. But what about the future? What about after I marry and have good financial status? I will want kids then, but what if the disease or whatever is causing these miscarriages will end up causing complete infertility? Shouldn't I try to find the problem and treat it NOW? I'm 19, I am engaged, and it was my fiance who brought that point up to me. If we want kids in the future we should start trying to solve this issue because the window of fertility in my family tends to end in the late 30s and i know from older female friends that finding the cause and cure of infertility can take years. Excuse me for trying to take a good approach to my FUTURE.

Now, onward. Mother of Jibril, thank you. Like you said, its devastating. Thank you for those two ideas. I will ask my doctor when I see him next if he will test for those. Given that he is incredibly open and understanding, I doubt getting the tests will be difficult.

Tarnalberry, you are wrong on the condom thing but anyway, glad you have luck. I am not underweight naturally, in fact I have a hard time staying healthy weight and always have, even prior to being gluten-free. The only time I experience significant weight loss is during pregnancy. The anemia is a whole other matter and has only FINALLY resolved itself after another tweak to my diet plus supplements. Anemia was a problem since the day I was born. I am 100% certain I am gluten-free since diagnosis. I screwed up ONCE the first month into it and was so sorry that I won't do it again. Diagnosis was about 2.5 years ago. My weight never really changed after the diet change, just my health improved.

On other notes...I DO have a job and also go to school full time and am about to graduate. And, I can't be 100% positive that I am still suffering miscarriages as the last 2 miscarriages were the result of trauma.My fiance pointed this out to me only a few minutes ago.

[lbd]

Minton.

I really hope that these things aren't true, because that would be horrific. It wasn't clear in your first post that the pregnancies were from anything other than normal means.

Obviously, if these things are true, you need more help than any forum can give you. Please, please, please, there are free counseling services out there. Please do not have unprotected sex any more until you find out what these traumas have done to you physically and mentally. Please do not associate with a father who physically abuses you (or any man who would treat you like that for that matter). Please see a medical doctor who can determine what is wrong with you and can treat you. You have obviously been to doctors in the past if you were diagnosed with celiac at age 16. Can you return to that physician and see what they think?

Are you still in high school? If so, go to your counselors - they are trained to help victims of abuse and it is free. If you are in college, go to your campus medical facility. Every college has them and they are also trained to help you and most services are free.

Best of luck to you - please get help.

lbd

[minton]

Like I have said above, i dont participate in unprotected sex. my fiance and i use condoms and i am on the pill. I would use my last dime to buy the pill if i had to and i did find out through a friend that the local health department gives a years worth of packs for $5. I am making an appointment.

I am seeing doctors but the OB/GYN is stupid and has no idea what celiac is (she tried to prescribe me a gluten infested medication last week!) and my endocrinologist (best doctor in the world and the guy that diagnosed me) is helping me as best he can. I do not have a regular MD due to the fact that I cant find one that knows what celiac is (the last consultation I had, the guy told me celiac doesn't exist!). So I am working with doctors...just not having much luck.

[zeta-lilly]

I'm sorry if I hurt your feelings, I really am. These boards are rather anonymous and there are people who get on here and make up all kinds of situations to ignite sympathy, anger, all kinds of emotions. Your story is pretty extreme. You have to understand that not everyone is going to believe you. And not everyone is going to believe that you got pregnant that many times by accident, although if someone was raping you, that explains a lot. I'm glad that you are in a stable relationship and you ended your relationship with your old boyfriend. I think the celiacs is probably to blame for some of your miscarriages. But i agree that you need a lot more help than this board can provide, especially if you are the victim of rape and violence from a parent. Good luck to you.

[tarnalberry]

I asked about diet because it's the first, common question after starting a gluten free diagnosis. You said that you went from 115 to 93lbs over four months during one pregnancy, implying to me that you started at 115.

Is that the best weight for you? (I don't know you're height or bone structure, so I promise, that's not a snarky question. It's asked to help you figure out if you have enough fat mass (at least 15% or so) in order to produce enough hormones to keep you healthy and able to support gestation.) Is your weight (even if not near ideal) stable? If it was fluctuating significantly due to *other* reasons that the pregnancy (such as just before, or within the first two or three weeks of pregnancy) that may have been enough stress for your body to reject carrying a baby at that time.

(No, I'm not actually trying to harp on your weight, but it's an indicator of other health issues. Hence why I started there.)

Have any of your doctors discovered a root cause for the severe anemia? I would think it unlikely that you would find it easy to carry a baby to term with a severe case of anemia pre-existing, and depending on the underlying condition, it may be all the more difficult. At the least, it may be worth getting rid of your ob/gyn and finding a new one who will work with your endocrinologist. (In fact, you could look just at a reproductive endocrinologist, but given the other symptoms - it seems that it may be something more than just that, and the miscarriages are a symptom.) It's been long enough since diagnosis that, on a gluten free diet, you should be absorbing nutrients, so if you're eating a good healthy diet, you shouldn't be having nutritional deficiencies. Have they tested you for any other ones other than anemia? Have they re-run the blood tests for celiac to see if your antibody count has gone down and/or scoped to determine intestinal healing?

One last thing pops to mind, you say the last two miscarriages came from trauma. Were the previous miscarriages from conception with the other man? I'm wondering if there may have been a genetic incompatibility between the two of you, or, due to the stressful situation you were in, your body decided not to carry the baby to term. It takes an *awful* lot of stress to physiologically cause a spontaneous abortion, but between that and the malformation you mentioned in the first post, it might be something to ask the doctors about. That said, and I know this will be unpopular advice, but consider taking a break from anything that could get you pregnant (yes, no intercourse; that doesn't strictly mean no sex of any kind, however) for a few months, to let your body rest and re-equilibrate without ANY chance of pregnancy. (Not even through clothes.) Let your anemia stabilize for a while, life stressors be dealt with, and so on. It might help. (I'm just putting out the thoughts in my head; I'm no medical expert, though I love reading up on most things medical.)

[GlutenWrangler]

I'm pretty sure she's telling the truth guys. I don't think anyway would waste that much time on fake posts.

Minton,

First I have a couple important questions. Were all of your pregnancies caused by the same guy? Did you ever get pregnant with your current fiance? Like tarnalberry said, it could just be a genetic mishap with the dirtbag who raped you.

I think it's a good idea to take a break from sex for the time being. You have gone through multiple physica and emotional traumas. It's no wonder that your body is such a wreck. You need to restore your body's equilibrium. That means avoiding intercourse (for now), eating as healthy as possible, returning to a weight that is ideal for your body type, and removing as much stress as possible from your life. I understand that you are searching for answers for your future, but the fact is that you don't know how your body would react to a pregnancy if you were is stable physical and emotional health. This is an opportunity to work on YOU. When the time is right, and you are healthy and in a better place, then you can try to get pregnant, and see what happens. By then, you'll be healthy, and your body can better cope with carrying a baby. If you miscarry again, and I sincerely hope you don't, then you can start looking for causes. But at that point you will have ruled out many of the causes for the miscarriage, just by being healthy and emotionally stable without the current stresses that you have now. But overall, give yourself the attention for now. That's what's most important. Good luck with everything.

-Brian

[minton]

Hey guys, before I reply to your questions, this post may be closed down soon as it contains personal information. After I reply to this I will edit my posts so as not to show so much personal information. The moderators and I are discussing the fate of the post and perhaps some editting will allow the post to stay up. Just thought I should toss in some FYI.

Now onward. Tarnalberry, 115 is actually a bit high for my size. I am normally healthiest about 107. At the time of conception for that particular pregnancy, I had been gaining weight rapidly and I guess within a week of conception was when the weight loss started. I thought my metabolism was just getting better. As far as the blood tests and anemia go, there was an underlying cause (or so we thought) that I was low in b vitamins in my diet. The anemia improved a while after adding a b complex supplement but then grew a bit worse. I'd say I was moderately anemic at time of conception and the doctor believes it got worse from there. It improved again after the surgery and stayed stable at moderately anemic until the last few weeks. Judging by the random bruises and faint spells, it's getting worse again and this time, I know for a fact I'm not pregnant. I was just tested by a doctor last week. No other underlying cause has been noted. The other pregnancies were not all from the same man. I'd say about 90% of them were, but not all. As for my fiance, yes those two were trauma based and perhaps it will be ok in the future. I got the RH shot the first time I conceived with him (hes O negative and Im O postive). And we have been taking a break from "activity" the past few weeks. I'm sure we can wait longer too.

GlutenWrangler, thank you for your support. I do understand where they might think I could be trying to get sympathy. I am taking some time to get back to normal and thankfully my fiance agrees its a good idea. His mom is even trying to help us with the getting back to normal...she's in love with organic foods so they both have been making me stay all organic. I must say I'm feeling better from it.

Now to edit out personal stuff....

[tarnalberry]

I'll admit, I was assuming you were over 5 feet tall when asking about weight (more than 90% of the time, I'd be right, but apparently not this one ).

It's tough. You've got something non-obvious to figure out, and the most I can say at this point is to encourage you to not just stick with the doctors you've been working with for resolving this problem, even if they are good doctors. You don't have to switch doctors, but you can get additional consults, and see if someone else may have experience with your problem. You can a very complicated history (from a medical perspective), and it's probably going to take 20-30 minutes just to talk through *everything* relevant with a doctor, so he/she can get a clear picture, so I know this isn't an easy task. But try to be patient working through it, staying as little stressed as you can. It may take longer than you could possibly want, but hopefully will get resolved sooner, rather than later.

[neesee]

(hes O negative and Im O postive).

If that's the case, you don't need a RhoGam shot. If you are o neg then you need the shot. It doesn't matter what his blood type is.

neesee

[chatycady]

This is so sad..... My daughter has struggled for years to conceive and have children. She IS responsible, married has a job and has paid thousands of dollars in medical bills to conceive. She finally was able to conceive and lost the baby. Miscarriage is horrible. The child is loved and lost. Grief is intense.

Life is a blessing. It needs to be cherished and created in love.

[minton]

Just wondering...what happens when a woman has low levels of HCG hormone during pregnancy? I can't find much info on it...

[Mother of Jibril]

Just wondering...what happens when a woman has low levels of HCG hormone during pregnancy? I can't find much info on it...

In the first few weeks of pregnancy, levels of hcg should double every 2-3 days. If it doesn't, that can be a sign of an ectopic pregnancy or impending miscarriage... but not always. Here's a little more information:

Open Original Shared Link

Unfortunately, if the numbers are not rising properly there's nothing you can do. It's not like progesterone where you can take supplements.

[debmidge]

I am 19 years old and was diagnosed Celiac at 16 years, 8 months. Prior to diagnosis, I had experienced many pregnancies (awful, I know, but my parents did not want to pay for any birth control method and condoms seem to routinely break). All except one pregnancy ended in miscarriage within the first 3 months after HORRIBLE morning sickness, constant cramps, migraines, and severe weight loss that could not be stopped. All were confirmed with home pregnancy tests. The one exception was a pregnancy that made it 13 weeks before it was discovered by ultrasound that the child had no brain. It was going to be born stillborn so my parents opted to force an abortion. Birth control was started a year after the surgery. FINALLY!

From then until diagnosis, no pregnancies occured. After diagnosis, the diet change really screwed up my cycle and for a few months we couldn't afford the pill. Again, miscarriages occured. A year after being on the diet, I was on the pill and still conceived three times. Twice I had the same miscarriages as before. The third time, I had no idea I was pregnant. I had periods monthly, stayed on the pill, took tests monthly just in case and all the tests were negative. After 4 months of continued weight loss (dropped from 115 to 96 and the weight loss was speeding up despite 6 meals a day), pain in the general region of my ovaries, severe cramps, etc. my mom made me go to an OB/GYN to see if I had a problem such as endodemetriosis. I don't have ANY reproductive problem according to the OB/GYN and at that visit, I discovered I was 4.5 months pregnant. She said the baby looked healthy but after a consultation with all my other doctors, a general agreement was reached that with the rate of my weight loss and the severe anemia that was present, it was best for my life to have another abortion. I hated the choice but accepted their medical advice.

Since that, I have again had pregnancies due to inability to afford the pill often (my dad lost his job so we are all struggling). Despite every effort (the emotional toll of the lost children is killing me so I make every effort to keep any child i happen to conceive now, adoption is way better than abortion) the children still end in miscarriages.

I still have no obvious fertility problem, and like I've made clear above, conception is NO problem. Any ideas what may be wrong?

I must have missed a post somewhere which explains that there was a sexual abuser involved .....but you would have to agree that your first post above definitely would lead someone to believe you are involved in activities you which were much too young (teenage sex & pregnancies). So I have the feeling that - giving you the benefit of the doubt - that somewhere a post of yours was deleted which would allow your first post to make some sense, based on your subsequent answers - otherwise it's not adding up. That is perhaps why you received some criticism for your teenage lifestyle and your attitude about how your parents did not pay for your birth control.

I hope you get the help you need both physically and mentally so that you can come to terms with sexual abuse (if any), health and celiac concerns and future happiness with marriage and children of your own. Your body and mind have been through a lot of stresses and you need to put everything on hold until you resolve most of the issues at hand.

The mere fact of wanting to have a pregnancy doesn't necessarily mean you are emotionally/physically/mentally ready for one. You may never be - and I am speaking from experience here. I too did not have the "stuff" needed to raise a child (health, money, etc.) until I was older and then I lost my ability to have children. This does not mean you failed as a person - your personhood is YOURS to develop as you will - but you need some kind of help to get you through the rough spots otherwise you may implode.

You mention adoption as being a good alternative and I now echo your words if in the event by the time you are in your thirties if you cannot have your own biological children that you realize that adoption is an option.

I wish you peace in your decisons.

D.

[mac8005]

It sounds like you have folic acid deficiency. There is a chromosomal disorder and it is linked with Celiac. My friend had it and it is something like MCHTF sorry I don't know the exact term.

All of her pregnancies ended in miscarriage until she took 2500-5000 mcg of folic acid. Yes this is 5-10 times the normal amount but the normal amount didn't do it.

Please go to planned parenthood or some county agency maybe they will help or at least use a rubber. You should be anyway to protect from STD's. If the guy can't help with the cost of birth control then he isn't worth it.

Also, going out and having sex without love is to try to get love and attention or because you don't have self worth for yourself. Again a county mental health agency can provide you counseling to deal with your issues. Get to the point where you wait until you are in a committed relationship and the guy gives you the love and respect you deserve before you have sex with them. Again if they can't or won't pay for birth control, get rid of them quick.

GL hun, noone should judge you, not even yourself. When you work through the issues, you will get to the point where you love and respect yourself. You should not even have a child until you work through this, otherwise you will not be a good mother. You cannot love anyone else, including a child until you love yourself.

MC