Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: Wendy, who is struggling with the thought that she may never be able to sustain a pregnancy.
Thank god for this blog. Not in a “pat myself on the back” kind of way AT ALL.
But if I didn’t start this blog, I would have had absolutely no idea the extent of the havoc celiac plays and how it affects so many people in such a variety of ways. I would have been among the clueless who figured everyone had the same symptoms as me. It has been absolutely eye-opening and I’m beyond grateful people have shared their stories, as hard as some of them are to hear.
Today’s email comes from Wendy who had a life-altering conversation with her doctor after her celiac diagnosis. She is not specifically asking for help, but I wanted to share this story just the same. I’m assuming she’s not alone in this.
Here’s the email…
Still at 27 the words and their potential implications for my future stung. The malabsorption from Celiac was wreaking havoc on my body. I could barely keep myself alive, let alone carry a baby at that time.
Now fully committed to a gluten free lifestyle and much healthier then before, I still hear the doctor’s proclamation and wonder if I am now, or will ever be, ‘healthy’ enough to carry my own children. In addition to Celiac I suffer from an additional currently ‘unspecified autoimmune’ disorder that is causing me small fiber neuropathy and tremors.
Doctors have told me they really don’t know and can’t know exactly how my body would react to a pregnancy. I’m in a position I never imagined: 29 and dating and in the back of my mind already knowing that a biological family may not be possible for me.
I wonder when one shares this knowledge with a significant other, if I could marry someone who didn’t feel adoption was a choice for them (as adoption is a very real possibility when I think of my future); if I could be okay never having a family of my own.
It is amazing to think that something I ingested multiple times a day for the vast majority of my life would literally eat away at part of me and leave me questioning my future in such major ways. [Dude note: This line speaks volumes about our disease.]
Whatever happens I know that it will be alright in the end – but I cannot help questioning what it means to know my body may not allow me the choice of carrying my own children…and how I best approach it with those around me.
Since I am so not qualified to offer any kind of advice here, I’ll put it out there for the community.
I completely understand. I found out at 29 I had CD, along with several other AI issues, and my hypothyroidism keeps getting worse. My boyfriend of 3 years and I sat down to start talking about our future, living together, marriage, a family. For him the Family is essential. I had to figure out the nicest way possible, to point out, I may not be able to, and it may not be the best option knowing both of our medical backgrounds… He knows the risks that we are assuming, and knows it may be a rocky road, but he’s willing to travel it and see how it turns out… Personally I’m scared to death of the outcome, I’m scared to know that it may never happen, and it may be really rough. I just keep telling myself whatever is meant to happen, is what’s going to happen.
I understand completely! When I was 18 before I found out I had Celiac Disease, I was told by a doctor that he was unsure of what was going on but it would be a struggle for me to carry my own child. Years later, I was told the same thing after I was gluten free for 5 years. I am going to be 31, I still have no idea if I will be able to carry, my doctor says we will wait and see if I can even conceive and go from there. Anyone I date I make no secret that I want to be a mother no matter how it happens. Having Celiac Disease made me stronger and a survivor. If I want something I will get it, I just have to do things differently then other people. Best of luck and keep your head up. xoxo
I am so glad that I wasn’t diagnosed until after my two daughters had been born. They are 18 and almost 13 now. My cousin and her daughter were able to carry babies as well. I think we can’t just make the assumption that it won’t work. But boy, oh boy, the not knowing would be so very hard. My very best wishes to you.
I have to wonder if there’s a connection between PCOS and celiac disease, too.
I have both! Was diagnosed with PCOS the same year as CD (almost 8 years ago). Crazy if there is a connection…
See?! I wonder. I was diagnosed with PCOS in college. Two decades ago. When nobody was testing for celiac disease. Had a history of IBS that I now wonder was a misdiagnosis. There’s nothing like being 19 and being told you’re going to have a hard time having a baby — if you ever want to have a baby (I was horrified at the mere thought of getting pregnant while in college).
Just a sad situation all around for anyone dealing with fertility issues. To know that choice might be taken away from you before you’ve even decided for yourself what you want to do just takes the wind out of your sails. or it did for me.
PCOS ABSOLUTELY IS LINKED TO CELIAC!! My celiac actually was diagnosed by my “lady doctor”. After too many years without insurance I found myself on one of the best plans in the country & decided to have some long needed testing done. After 3 miscarriages during my college years 1 early in the 5th month, I have come to accept pregnancy won’t be possible.
The doc I had happened to be the brightest of the center for womens studies & colorado fertility options at porter hospital. I was there for long needed check ups due to large PCOS cysts. I was told that the cysts were made worse by this thing called gluten (anyone ever hear of that 🙂 ) after years of painful cysts growing, breaking & infecting my overies now looked like blown out tires. She immediately put me on a mirena IUD that not only stopped the painful cysts but helped hormones so far out of whack the nurse drew blood twice so they could double check.
Gluten creates the immune response kicking hormones into over drive messing up cycles, not raising hormone levels at the right time for pregnancy & causing miscarriage.
As I was already in my 30’s at the time of diagnosis I was told if I ever wanted biological children I needed to get pregnant within weeks!
Even if I had done this I was told I clearly faced a high risk pregnancy & being in their office several times a week “for the duration”. I’ve come to accept that adoption is my future & don’t even bother dating guys that insist on “natural children”.
On an up note: friends wife that was diagnosed after my insisting her “lingering illness” sounded exactly like my celiac symptoms that cleared up with a new diet…gage robert 7lbs 8oz was born easter after a closely monitored but otherwise uneventful pregnancy.
My heart truly goes out to you– I was diagnosed at 29 (2 yrs ago) after miscarrying my third child. I am more than fortunate to have had my two girls to full term, but my youngest one, she’s almost 4, there were some complications of her not growing at the rate she should’ve been. After diagnosis (both my children are celiacs as well), I started questioning whether or not we would be successful at having a baby again. So far, no luck. I cannot help but think it is due to this disease, and even though I am more than happy with my two– my heart still aches for the one I lost. Lots of love, and good vibes your way– either way, I hope you all have a chance to become mothers xoxo
All I can say as advice is that a potential mate has to have the same desires, hopes, and goals as you. If they don’t want kids and you do, and are unwilling to consider adoption, then maybe they’re not a suitable mate. Family is often not blood, but who we choose to let into our world. It may not be the quite the same as having kids of your own but adoption should certainly be an avenue for you if you want kids and are unable to have them yourself. There are too many kids out there who need loving homes to close that door.
I won’t pretend to know what it’s like to be told you may not be able to have children. I was lucky enough to have two before I was diagnosed. As painful as it is, this is just another part of your particular journey. Just be honest with your partner and be open to possibilities. Our future rarely turns out exactly the way we plan it anyway. Hugs to you Wendy!
I don’t know if this helps, but I am celiac and became pregnant back in December to my surprise. I was also told it may be challenging to get pregnant and sustain a pregnancy – and was on birth control at the time! I have been gluten free (and accidentally glutened) for almost 3 years. I have also been eating much healthier, working out, and sleeping more for the last 1.5 years. I’ve realized I’m healthier in general and able to recover from a flareup or accidental gluten ingestion more easily if I take care of myself in general.
My partner and I decided to terminate the pregnancy. We do not want children due to issues in both of our family histories. Even if that wasn’t a factor, I just started a new job last summer and we were not financially ready for any new life changes.
The thing that surprised me: I was able to get pregnant. I got to 8 weeks without any worse than morning sickness and being tired. My doctor said I looked healthy actually and the baby looked healthy (I was kinda skeptical of this myself – I could create a healthy baby, me??). Part of me was shocked I was able to get pregnant; the other part of me was horrified I was pregnant unexpectedly.
I know it may be hard to hear that someone terminated a pregnancy if you are trying to get pregnant. I’m not trying to upset anyone. But I do think if I can get pregnant – someone who has been vomiting and experiencing celiac symptoms since she was a child and was finally diagnosed in her late 20s – maybe not all hope is lost. Maybe some of us can get pregnant. Maybe it takes time for our bodies to heal. Maybe our general health matters too – eating real foods, sleeping, and letting our bodies become healthy again.
Maybe this is silly to point out. Maybe my pregnancy wouldn’t have lasted much longer. Maybe my child would have had complications after birth. But I grappled with a lot of the same questions and issues that Wendy is dealing with and in a weird way, this experience made me feel like celiac wasn’t as horrible of a sentence as it once felt a few years ago. It made me remember that healing is a possibility and I’m not as broken as I once felt.
I can totally relate. I hoped to start a family in my 30s, but then my health started failing. I’ve now been diagnosed with two autoimmune diseases that affect fertility. I haven’t had my fertility tested, but I’m still too compromised to care for a child and I’m approaching 40. I always wanted children and I feel as if my health took that away. At first the realization gutted me. I am now coming to terms with it, although I still feel a pang of sorrow on occasion.
In your case, I would focus on the positive. You know what obstacles may lay ahead and you can use that information to select a partner who has the same desires, values and philosophies as you. When dating, it often seems hard to find a really good candidate, but there are wonderful people out there who will be a good complement to you and will not be fazed by the possibility of adoption.
My health declined a lot after my husband and I met, and he stood by my side. We got married when I was still in the midst of the worst. Most people would have run if given the option, but he went all in. And he is not only kind and compassionate, but intelligent, funny, optimistic – the whole package. You’ll find someone who loves you through these health issues, not despite them.
GD-
Great blog. This is an issue for a lot of women out there and I am sure that this will generate some very varied emotions. My friend was recently told because another health issue (non-celiac) that she will not be able to have kids. It is devastating to her but she worked through it similar to the grieving process. I would encourage Wendy to remain positive and consider adoption if she cannot sustain a pregnancy. There are so many kids that need homes out there and it seems as if she would be a great mother. Good luck to her.
xo-
Jersey Girl
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James T. Kirk: “Damn it Bones, you’re a doctor. You know that pain and guilt can’t be taken away with the wave of a magic wand. They’re the things we carry with us, the things that make us who we are. If we lose them, we lose ourselves. I don’t want my pain taken away! I need my pain!”
Star Trek
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Pulling out Bones McCoy. Very impressed 😉
My mother’s CD was finally diagnosed in 1962., after many years of symptoms. She was 38 years old and she had just given birth to her fifth child. She was starving to death and started having muscle spasms that made her afraid that she was going to drop her baby. I was 11 years old, and she prayed that she would live long enough that my father and I would be able to raise my younger siblings.
Then at last a specialist suggested she try a gluten-free diet and she was reborn. She went from skin and bones to robust health. She lived for nearly 50 more years before she died of causes unrelated to CD. My daughter adored her and my baby granddaughter is named after her.
The doctor who delivered her baby was my uncle. He was very worried about her during her last pregnancy, especially because her fourth and fifth pregnancies were less than two years apart. Years later, my aunt told me that he didn’t think there was any chance Mom could carry a baby to term and if she did, he didn’t think the baby would be normal. They prayed for my mom and the baby all during her pregnancy–and he also made sure Dad had a vasectomy! My baby sister was a miracle–a healthy, strong baby who brought us joy and still does.
My mother didn’t know she had CD so she wasn’t able to make informed decisions about the risks of pregnancy, but her experience was that she was healthier during her pregnancies than at other times. I wish all the best for women with CD who want to have families. God was with my mother, and he still hears and answers prayer today.
IMHO your first task is to heal the damage from the Celiac. This takes time. It took me two years to regain the 20 lbs I lost prior to knowing I was killing myself with all the extra gluten I was consuming (like Denny’s Grand Slam pancakes) in my attempt to gain weight. I would have to agree that until your body is able to nourish itself, it would be pretty difficult to nourish a growing baby. You know what your enemy is (gluten) so you are already ahead of many who won’t find out until many miscarriages later if pregnancy happens at all.
That said it is not a certain that you will never be able to carry a baby to term. Consider this a bump in the road. My daughter had three miscarriages before finding out she has Grave’s Disease. (Her insurance wouldn’t pay for an endocrinologist until she had three miscarriages, but I will refrain from entering that rant.) Once she had her disease managed she blessed us with three grandchildren in five years. All three pregnancies were considered high-risk and she was closely monitored. All three are perfect.
My infertility and trying to determine it’s cause were key factors that led to my doctor finally diagnosing my CD. Glad they did because it changed my life. As it turned out the celiac had nothing to do with my own infertility but the almost 3 year time between diagnosis and our successful IVF was good because it let my body heal. I think that’s a huge factor, letting our bodies heal from the damage, which is different for each of us.
I agree with finding a partner who is sure the y can travel the path with you no matter where it leads (bio kids, surrogates, adoption, child-free). Someone who is prepared to be realistic about all the possibilities.
I would also caution this super supportive community against suggesting adoption ‘because of all the great kids that need homes’. Those of us also entrenched in the infertile community really hate that suggestion. We are aware of adoption. We are also aware that it’s not for everyone, is super expensive and is often more heartbreaking than any amount of alternative reproduction methods. Just a thought from an infertile Celiac.
Margie, I hope I didn’t offend you with my statement. I totally get that adoption is expensive and can be emotionally draining. Infertility treatment can sometimes be just as expensive (if not more) and emotionally draining though, and I just hate to see couples put themselves through all that when they might end up with nothing to show for it. But I suppose the same can be said of adoption. Wendy just seemed worried that her future partner might not want to consider it. I was only encouraging her to look for a partner who would be willing to take that journey with her if that’s what she wants. And also to be open to possibilities – wherever her journey may lead her.
No offence taken Musicmidget, I just thought it might be a good idea to put that out there. A lot of people that haven’t been through the journey of infertility often suggest adoption as the go to (I’ve even had some trolls suggest that I shouldn’t have bothered with IVF because I should be adopting instead – obviously not on this site though) and I think that there are a lot of misconceptions in the wider world about how adoption works, the expense of it (average domestic adoption averages around $40k, average IVF around $8 – 10k) and the utter gut wrenching emotional toll it takes if the placement drops through due to any number of circumstances. I do think you made an awesome point though, which I totally agree with. It really is about finding a partner that will support Wendy through whatever journey she ends up taking.
I also have to say I really agree with the other posters who have indicated that she should check in with a reproductive endocronologist (RE)…they are the real experts when it comes to the science of reproduction. My RE was so much more knowledgable about celiac and the effects on my body, my reproductive organs and my ability to carry a baby than any of the other general practitioners I saw.
Dear Wendy,
As GD is so fond of saying (and he is so right on this one) everyone’s celiac is different 🙂
That being said, in reality the doctors have no clue as you wheather or not you can get pregnant and sustain it. Really. At the time you were first diagnosed, probably not as you were in pretty rough shape. Now, after living healthy for a few years, who knows?
I had friends (a married couple) that were BOTH told by Dr.s that they were infertile and would never have children. (Not celiac, but still) well when she turned up pregnant boy were they surprised! Their son is in his 30’s now, happy and healthy and no issues. Go figure. The impossible pregnancy.
The reality is unless you are actually missing your reproductive organs the doctors have no clue which way this is going to go. All you are getting is their best guess really, so roll with it.
Oh, and any children that you do have inheriting this? That is another definite maybe 🙂
Remember, there are lots of celiacs that went undiagnosed for years and years and had children in the meantime.
Discuss your concerns with your partner – you bet. Take what you have been told as total fact, umm, I don’t think so.
Relax about the whole thing and see what happens. Oh, and remember most people have “something wrong ” with them that can interfere with fertility….. but look tons of women get pregnant every day. Why not you?
Hope this helps 🙂
Joanna
Wendy,
Don’t give up hope!! A friend of mine was told the same thing when she was diagnosed with Celiac 3 years ago. She has many issues with food, not just gluten, and her Doctor told her it would be an uphill battle to sustain her own health without adding the additional needs of carrying a baby. The good news is, her little boy was born last August! 😀 Her pregnancy was carefully monitored and she was on bed rest the last month, but her son is healthy, chubby and adorable!
I hope this helps you! Best of luck to you in everything!!
-Jess
For those with celiac who continue to have neurological problems, please, please try a dairy-free diet as well. I had been diagnosed with MS and had severe nerve pain for two more years after going gluten-free that only cleared up by going dairy-free as well. Nerves take time to heal, so it was 2 weeks dairy-free before I was sure I was having an improvement. Most improvement occurred within 3 months. Going off of dairy is harder than gluten, but worth it, and you do find substitutes. I don’t even think about it now, after being off dairy for 10 years (and gluten for 12).
I was diagnosed with celiac disease 7/06. A year later i was pregnant with identical twin boys (it just happened, no help!) and had a very healthy pregnancy and produced two very healthy boys. I was watched closely by a fetal monitoring office and my doctor and ate a very strict diet with absolutely no gluten risks. I am proof that if celiac is what you are worried the most about, it can be done!
I had many GYN problems and a very early menopause (I was only in my late 30’s) and a total hysterectomy by 47 because of severe endometriosis, uterine fibroids, prolonged bleeding and a host of other issues I won’t bore you with. It was ugly.
Sadly, I could never carry to term, despite several pregnancies and then, unsuccessful infertility treatments. So much undiagnosed Celiac collateral damage.
But, they did not test for celiac disease when exploring recurrent miscarriages back in the 90’s. Sadly, if I had only know back then what I know now, I might have had children….but, there’s no going back.
The good news is, TREATED celiac disease results in better overall health, including gynecological matters. Many women with celiac have healthy pregnancies and healthy babies. And it’s not a “given” that we pass celiac on to our children.
That’s why your doctor said upon DX that “it could not sustain it right now.”
This has no bearing on what your future holds! 🙂 You are assuming it’s not possible, but I see it differently.
You may wish to see a reproductive endocrinologist before thinking that your chances are nil. I know I would if I were a 20 or 30 something right now. I’d be excited and hopeful for the possibilities.
Good luck, hon.
Hi, Just wanted to pipe in with my two cents worth here. I’m both a celiac and a nurse practitioner. I work in rheumatology and deal with autoimmune disease both personally and professionally. First, I’d like to say that I have 4 children, including a set of twins who were carried to term AND delivered safely at home. So having a diagnosis of celiac disease does not mean automatically that you cannot have children. I have had 3 pregnancies, full term, delivered naturally by midwives, with no losses. Having celiac is NOT a death sentence to your future potential to having children.
Second, even if your celiac disease is diagnosed as a result of pregnancy loss, it doesn’t mean that you won’t later carry a baby to term if you follow a GF diet and heal your gut first, which I highly recommend. You do want to start off on the best foot possible.
Third, it would take some super serious health issue with a patient, like, they have severe lupus nephritis that doesn’t respond to anything, that they shouldn’t have children. Who has the right to tell you that simply because you have a food intolerance. I call that ignorance.
Fourth, I used to work in the NICU and I never once saw a baby who was there because their mother or father had celiac disease. Drugs, yes. Celiac, no.
Fifth, autoimmune disease likes to play together. So if you have one disorder, the odds are greater that you will have another. Thyroid disease is often related to celiac and may actually improve on a GF diet. Sjogren’s syndrome is another. PCOS can be related but it may also be related to weight. Weight also can worsen some autoimmune diseases, especially psoriasis. And psoriasis can be related to or worsened by gluten issues. Fun, huh?
Sixth, on that note, thyroid disease can also be implicated in pregnancy loss and is likely a more common reason that celiac for infertility. My mother lost 3 pregnancies because of hypothyroidism, 2 because it was undiagnosed and 1 because they were adjusting her meds. If you have celiac, make sure you are tested and treated for hypothyroid BEFORE attempting pregnancy.
Please don’t despair. There are some really insensitive docs out there who have no idea the sentence they are imposing on someone by telling them they won’t have children because they have celiac disease. Find another provider who has or is willing to take the time to educate themselves about it. Yes, we have a greater risk of infertility but the majority of celiacs can and do have children, especially with strict adherence to the diet. God is bigger than any diagnosis!
ps I was 35 when I delivered my twins
My first piece of advice is don’t think to much about the ‘what ifs’, no matter what any doctor theorizes, if you haven’t tried to get pregnant, you really don’t know what is going to happen. I know it’s hard not to think about it and certainly it’s something that should be shared with any potential serious partner but try not to dwell on it too much, I say this as someone who did!
After I was diagnosed with Celiac Disease at the age of 27, it was a good long while before we could think of having children because before then I was medicated to the hilt for depression and anxiety that was not improving. And seizures, though those were untreated. Finally after several missteps and removing dairy I slowly got off the numerous not safe for pregnancy drugs and lost 60lbs as part of the process.
Because I was so desparate to start a family we decided to start trying at that point, despite still lingering anxiety problems, worsening thyroid and the development of constant and fairly severe back pain (which I still have to this day, seems to be neuropathic and has no diagnosed cause). I also had a very short cycle with a short luteal phase.
To the best of our predictions, we would be trying for a long while. After three months I decided we should take a break, my back pain was too much. But it quickly became apparent we were too late – I was pregnant.
It was not easy. My anxiety was overwhelming at times (since have discovered yeast affects me). I had a large hematoma burst and thought I was having a miscarriage (lost a lot of blood too). My back pain was unbearable most days. My thyroid was difficult to regulate. I went though a period of gluten reactions including seizures only to find my supposedly ‘gluten free’ pre-natals were not as advertised. (The company rep I called told me they ‘hardly ever’ tested above 20ppm). Throw in a few other accidental glutenings with seizures, a bizarre reaction to carrageenan and the general unpleasantness that comes with being pregnant and it was one of the worst times of my life!
But I am lucky, I am so, so, so lucky! Because at the end of all that crap, I had a beautiful, healthy daughter in my arms. I know not everyone will have this happy an ending but this is why I give you my second piece of advice: Fight for it.
If you, like me, feel that having children is essential to your purpose on this earth do all you can to fight for them. Don’t let negativity consume you before you’ve even started. If you get knocked down get back up again. And if you are able to get pregnant, don’t let this disease beat you down. I have always been a weak person but fighting for my child, just dragging myself through each of those days just so I could see her, I know what I am capable of now. Just. Keep. Fighting.
Undiagnosed CD caused me to have 11 miscarriages over a five year period in the late 1980s. No pregnancies lasted more than 12 weeks. The infertility specialists knew that I had autoimmune issues and did multiple tests and some bizarre painful experimental procedures to “shock” my immune system into working correctly. However, in the 1980s, CD was not one of the autoimmune diseases that was on the radar. It was an extremely painful and difficult time in my life. I adopted a fabulous baby boy in 1992 and can’t imagine raising any other child. I was in love the moment I saw him.
I finally self diagnosed around 10 years ago, when I so sick that thought I was going to die. I asked my physician to please test for CD and her response was it is too hard to cut gluten out of your diet and refused. I went GF that day and felt 90% better within a week and have never eaten gluten again except accidently. By the time, I found a physician who would test, I had been GF for several months and tested negative. My last few health providers have not questioned the diagnosis. My gut still has not healed completely even after being GF for the last 10 years.
No doctor knows who will have children and who will not. Take good care of yourself and have faith that the life you are meant to live will manifest, be it biological or adopted children.
Good luck to you, Wendy! Suffering from autoimmune disorders does not mean no hope for a healthy baby. Like a few people have said, the state your body is in when you are first diagnosed with CD is completely different to the state it will be in now if you are 100% gluten-free and taking care of yourself. Whilst an undiagnosed celiac would be less likely to fall pregnant and sustain a healthy pregnancy, a healed celiac isn’t in a much different place from any other women, pregnancy wise, unless there are other fertility issues.
I was diagnosed with celiac disease 5 years ago – I was badly anemic and had no period for over a year. Doctors told me there was no way to tell if I’d be able to get pregnant until the time came to try and I too wondered what this would mean for my future. I was nowhere near ready for a family at that time but I knew I wanted one.
4 years down the line, I was very strictly gluten-free/healthy and I got pregnant very easily (I’m aware that I am very lucky!). I was completely surprised as I thought I would have fertility issues as some celiacs do. Who knows, perhaps I will in the future.
I was also diagnosed with hypothyroid during pregnancy but I was prescribed levothyroxine which helped me and here I am with a beautiful, healthy baby girl who is 5 months old today!
Some celiacs have fertility issues and others do not. I know it’s scary not knowing but I also think it’s important not to worry too much about it (As a worrier myself – I know this is easy to say!!) but worrying can play havoc with your desire to get pregnant, perhaps even more so than celiac disease.
Wishing you the best of luck! X
I agree 100% with the fact that your doctors do not have any idea what your future holds. We all know that when we were first diagnosed, we were so depleted of essential nutrients that we would very likely not be able to conceive a child or carry a successful pregnancy to term. I have also heard many statements that once our guts have healed, we are like any other woman of child-bearing age regarding our fertility.
However, in my personal situation – I truly believe that my Celiac disease played a factor in my miscarriage and my infertility. In a weird way, I have always known that it would. For years, I would say that I did not think my body was healthy enough to sustain a pregancy. As luck would have it, I never tried to get pregnant before my Celiac diagnosis …and in fact, I didn’t actually begin trying to get pregnant until 8 years after my diagnosis (and 4 years after my hypothyroid diagnosis). All common sense told me that I should have been healed and healthy by that point. Yet, it took me 6 months to get pregnant with my one and only pregnancy that I lost at 8 weeks. I was devastated, but I was just sure I could get pregnant again. (And, let me tell you – once you lose something that precious, you only want it again that much more.) For 3 more years, I tried to get pregnant (including charting, ovulation tests, fertility drugs, etc.) – & nothing. I was now in the category of “unexplained infertility”.
Two years ago, I had a huge set back in terms of my physical health with severe back pain and an eventual diagnosis of Fibromyalgia… which now requires me to be on several medications that are not safe for a pregnancy.
I was now faced with the heart-breaking fact that my baby-making days were over….. and I now had to try to face life as a “childless mother” who would never be able to hold her baby in her arms or watch her child grow up and be able to experience all the milestones you are supposed to. I went through a immensely heavy grieving period, mourning the loss of the child I will never have. (And, as a previous poster alluded to – adoption is not a viable option for everyone due to the immense cost involved and yes, the unpredictability also devastated a friend of mine – so, it’s not a for sure thing either.)
But, on a more positive note, my story seems to be in the minority – which is great news for you. I actually have several Celiac friends – all of whom have two children each. So, my experience does not appear to be the ‘norm’. But, you never know. And, that’s the point… no one knows what the future will hold for you. All you can do is try to remain as healthy as possible and find a spouse who will stay by your side no matter what life throws at you and together you will figure it out.
I’ve lost 3 babies in the last 1.5yrs which has led me to be diagnosed as coeliac just 2 weeks ago. It’s amazing how you get so used to feeling awful that you stop noticing things are wrong. I’ve been gluten free for 2 weeks and have lost 4lbs and feel like a cloud had been lifted off of me. I’m so so hoping that this will be the answer for us having our much longed for baby.
Oh Eileen,
My heart goes out to you.
Please know that I honestly believe that if you give your body a chance to heal for a year and try again, you should be all right. Please, please bring your concerns to a reproductive endo who is celiac-savvy and just try to be patient for a bit.
Be good to yourself, eat well and take care.
big hugs, IH
Thanks IrishHeart! I’m feeling more hopeful now. We probably won’t wait a yr but will def give myself time to recover. X
Juts know that it takes at least 6 months to a year for substantial recovery from active celiac, so please, be patient. I want you to have a happy and healthy pregnancy!
BEST WISHES!!! 🙂
Ummm yeah eileen. Meet irish. I won’t call her an expert on this, but she’s been through more with celiac than several dozen of us put together! When it comes to warnings of “hey throw some brakes on that enthusiasm” its worth a 2nd look.
Friends wife was having celiac symptoms while they were still dating. At my insistance & nagging then finally pointing out “hey butt head you wouldn’t marry me because this disease stole my ability to have the kid you want & she’s showing symptoms” she got checked out & sure enough gluten intolerent. Their reception was all GF including the cake & soon after their 1st anniversary (again testing at my insistance) she really was pregnant. After very close monitoring, food diary & strict restrictions on where/what she could eat, Gage Robert was born this easter. It is possible for some of us, but as a bad doctor reminded me after my 2nd miscarriage…miscarriage is the body’s way of telling you something is wrong, take time, figure that out, heal, THEN decide if its time for trying again. Yes, he did follow that with the adoption lecture. The point I’m stressing is the damage took decades to get there. Its going to take longer than weeks to fix. Also from someone that’s been there, each additional miscarriage causes more damage to your uterus that increases chances of perminant infirtility.
I don’t have children. I’m turning 45 this year, and I’ve never been pregnant. I’m in a relationship with someone who never wanted children, so I think it’s a fair tradeoff.
However, my first major relationship fell apart because there were no children. People are remarkably judgmental. It never occurs to them that some people just didn’t have children because there was something in the way, like celiac.
I’m still wondering what to tell people when they get nosy. (Which is pretty often.)
gee, Lisa….That’s more than “nosy”; that’s downright rude. 🙁
What reasonable adult asks that of any woman (or man for that matter?)
I have answered it directly sometimes, with the cold hard facts hoping it would make them think twice before asking any other woman that question.
Only an innocent child with no verbal filter is excused for asking that type of personal question.
It’s no one’s business anyway–whether it happened because of miscarriage or infertility or from someone’s personal choice not to have a child. I know some childless couples–actually they call themselves”childfree”–and they have no regrets about their decision.
For many years after I stopped trying because I just could not take another miscarriage, more than once, I had students say to me “oh you’d make such a great mom!” and I put on game face and said “thanks, that’s sweet”….and then, went home and had a good cry. They had no idea how much that meant to me and yet, it broke my heart every single time. It’s still difficult for me and I hate “mother’s day”…ugh.
.
hey. maybe you should ask them in response:
“why do you want to know?’ and see what they say.
IrishHeart,
I was diagnosed a month ago, and have since been reading all of GlutenDude’s posts. I notice that you comment a lot and are always so gentle and loving with a twist of humor in all of your responses. I kind of see you as the Mom of this site!!
Xoxo
KateMcG
Irish is my voice when I don’t have the time to be. She is honest, she is passionate, she is funny, and most of all, she cares about this community deeply. Thank you for recognizing that.
Oh Kate,
Can’t thank you enough for your very kind words.
You have made my day (week, month!)
I really appreciate your comments, hon.
(you know, I have acquired several “kids/little sisters” the past few years actually–the silver lining of this disease, I guess–and for that, I am truly grateful.) 🙂
Life is very good, despite the times when things do not go our way.
You hang in there. If you need any help, give a shout.
We’re here for you!
xx IH
I like that answer, Irish, thank you.
You bet, Lisa 😉
My heart breaks for you. I would not wish infertility on my absolute worst enemy.
I was diagnosed with endometriosis when I was 17, told at that time that they had no idea if I would ever be able to get pregnant, so I always knew adoption was probably in the cards for me.
Whenever a relationship would get to the serious-level of children-talk I was always 110% honest about my body’s odds, and my hope to adopt. If they didn’t want to hear it…then maybe it was good we had the conversation sooner rather than later.
I am so incredibly lucky to have an amazing husband who was/is supportive of every turn on this road, and has been open to adoption since day one.
While it is a heavy burden to bring in to a relationship-looking back I feel grateful that we were able to have the conversation early on and get on the same page.
Even though I knew about my inevitable infertility for a long time, the reality of it being true was still a very hard pill to swallow. If you ever need someone to talk to, please don’t hesitate to reach out.
-Chelsea
I was told the same thing.
Did not even have a period on my own for 10 years.
I went strictly gluten free, but also completely organic and began juicing vegetables/fruit/greens (kale/dandelion, etc.) to replenish vitamins and minerals was missing and help rest and heal my digestive tract. That’s ALL I did.
3 years later I sit typing this with one hand while holding my squirmy 13-month-old on a lap that can barely fit her because I am due to deliver my second in less than three weeks.
I was diagnosed with CD when I was 34 years old and engaged. I started my gluten-free lifestyle nine months before I got married and ten months before becoming pregnant with my first child. I was 35. The first two trimesters went smoothly and then I went into preterm labor. I was on bedrest and then delivered my daughter at 37 weeks. My daughter is almost 18 and she herself was diagnosed with CD at the age of 7. My next pregnancy was a very difficult one and I lost the baby at 19 weeks. I became pregnant again at age 37, and this time carried full-term, but it was considered a “high risk” pregnancy. It was monitored closely and as with my first pregancy had preterm labor during much of my third trimester. My OB said I had an “irritable uterus.” Happily, my son arrived, just 9 days ahead of his due date and he is now 14 years old. My husband wanted to have another child and we tried for almost two years to conceive again. However, it was not meant to be. At age 41, I entered menopause. My reproductive years ended early and I believe my CD is an underlying cause. I am now 53 and have many ongoing health issues that I believe are linked to my CD that was undiagnosed for much of my life.
Thank you Gluten Dude for providing this discussion forum, and I wish the writer of the note you shared the best of luck with her future family!
Please, read some relevent, positive information about pregnancy after going GF!! 🙂 :
“Patients known to have CD should expect to have near-normal fertility potential with appropriate diet,
See more at: http://contemporaryobgyn.modernmedicine.com/contemporary-obgyn/news/tags/celiac-disease/reproductive-effects-celiac-disease#sthash.bjTe3gVK.dpuf
“And the good news is that with proper treatment with a gluten-free diet and correction of nutritional deficiencies, the prognosis for future pregnancies is much improved.”
http://consults.blogs.nytimes.com/2010/02/03/can-foods-contribute-to-infertility/?_php=true&_type=blogs&_r=0
“If you’re infertile and you have celiac disease, there’s hope: many previously infertile women were able to conceive successfully after being diagnosed with celiac disease and adopting the gluten-free diet.”
http://celiacdisease.about.com/od/medicalguidelines/a/Undiagnosed-Celiac-Disease-Can-Lead-To-Infertility.htm
This is a horrible topic to speak about. I will not say much because this has been really tough for me. I’ve had several miscarriages and no one understands what you go through until it happens to you. It’s awful. My husband and I still struggle with this. And the people in our lives, including our own families, are very insensitive. My sister can hold hands with her husband and get pregnant. They make very insensitive comments to us at times. My own mother in law harasses us about “not having grandkids of her own” in the most snide voice you can imagine. She does it in front of people. I don’t like to talk about it.
So with that said, I’m SOOOOO very sorry for all the people who have had to go through this, especially because we struggle so much with this stupid disease in other aspects. I can’t read all the comments. I’d be crying all day. Just know that my heart is with you all.
Rhianna this isn’t my first suggestion on how to deal with your situation, but in my life it was the most effective: when being humiliated in public about not giving mom grand-kids. I spoke up & said “I did give you grand kids but they all died you insensitive bitch & you don’t even have the heart or compassion to admit they exsist if nowhere but my heart!!” Then walked away for a good cry.
She was revealed for the monster she was being & even her own friends started reminding (shaming) her in public that her grand children died of miscarriage. Almost a year after my miscarriage started getting sympathy & prayer cards from moms friends that had been through same thing. One even said it made her feel good to finally stand up & say her miscarried & still born children did exsist. I encourage “the childless” to admit our children died because of this disease. Like it or not they really are victims of the damage this disease causes.
I agree, don’t dwell on what may happen, ive got two sons and i have coeliac. Im a believer in positive thinking and the more you dwell on negatives the more you draw things to you. If a man loves you he wont be put off by what may happen, be upfront from the start. Eat healthily and think positive!
I may be off topic and on my own island over here, but does anybody feel, as I do, that you don’t want to pass on your illnesses to a child? I was diagnosed with Hashimoto’s 30 years ago, endometriosis 10 years ago, and celiac 2 years ago. I also have a few other things that I don’t like to discuss. I know you can’t protect your child from everything, but I can protect my potential children from my genes.
No offense to anyone who chooses to have a child. More power to you. You are probably a lot stronger than me and better equipped to help your child in the world. I just don’t want to pass any of this along. I am single and in my late 30’s, so any chance I have is quickly running out, but I honestly think given the chance, I will opt out of having my own children.
Maybe adoption could be in my future one day if I find the right person! And please wish me luck in trying to find someone who understands this decision and can live with everything I bring to the table. I have a lot of auto-immune baggage!
Hi, i didn’t know i had coeliac when i had my boys, even so, there’s no guarantee they wld get it and both have been tested and are fine. Furthermore, whilst it is a serious illness it can be lived with if your sensible and whilst i wldnt wish it on them its not something that they cldnt learn to deal with. Sorry i thought your words were a bit harsh, there’s nothing selfish abbout a woman wanting children
I’m sorry if I came across as harsh. That was not my intent. My post is about my feelings about my situation. I don’t only have celiac. I have other things too that I do not wish to pass on to any children I could have. I also have two diseases that could make it very difficult for me to conceive and carry to term if I chose to have children, so this is my personal decision that I have made for myself.
I was only posting to see if anyone else was in the same boat as me. If you are not or your feelings are different, I totally respect that.
Sorry i was a bit stroppy and you’ve obviously got more to deal with than most so your decision is understandable. I never had to think about it as i wasn’t aware but i still think id have gone onto have a family. Shouldn’t have been so stroppy i realised afterwards that i may have been a bit harsh myself and i know were all only trying to offer support
And P.S. This was not an easy decision for me to make! I always thought I would have kids one day.
KV I feel the same ways sometimes. Too many miscarriages broke my heart, celiac & a dozen other NOW problems come with it & I have a dozen or more markers for serious illness that killed various family members (cancer, heart disease, diabetes altzheimers, etc). I wanted my children & they died anyway.
I also have a hard time buying the “adoption is too expensive” arguement. When every state is DESPERATE for foster parents & they pay you for the care of those children (yes even babies) I have a hard time with “custom babies” that cost a bloody fortune. I’ve opened myself to “my children” finding me by whatever path they need to (father w kids, foster, adoption) because that allows the universe more options to provide.
This disease already places so many restrictions on our lives WHY limit the child you will accept to a red blonde blue eyed girl with a brother no more than 2 years younger from the southern most village of nimibia…umm yeah something that precise is going to cost a fortune & take forever.
Re: infertility (been there, done that)
Just a reminder to women experiencing fertility issues to make sure they get good chiropractic care. There has been at least one seemingly science supported study regarding chiropractic resolving infertility. http://revivechiropracticwellness.com/index_files/Page658.htm
Betsy the only time I’ve ever heard of chiropractic “resolving infirtility” was when the doctor was (cough) “donating” more than some back adjustments. While I will support chiropractors having statistically higher fertility than other professions…that impact on their patients is questionable at best.
I have six children…yes SIX,(no help needed, in fact, no trying) despite at LEAST a decade of undiagnosed CD. After my fourth being 4lbs full-term, yet healthy (just uber-petite) I was finally diagnosed with hypo-thyroid disease. Next one was 5lbs, and number 6 weighed in at 6lbs and I was pushing 40! All BEFORE finally being diagnosed with CD last year. Our first came after not having a period in almost two years! Six pregnancies, no miscarriages and I’m sure celiac through all. Don’t believe everything doctors will tell you. How many times did a dr tell you nothing was wrong before getting your celiac diagnosis? Hang in there. A great resource for achieving (or preventing) pregnancy is the all-natural Creighton method. Google it. It works. Best of luck
This is a really powerful post. I’m so sorry to hear about the difficulties you’re going through. I’m 18 and just about two months ago I was diagnosed by blood test with celiac disease which I inherited from my dad. But I need to get a biopsy to confirm for insurance and school purposes, yet my doctors have stalled and stalled. I keep trying to explain to people how frustrating, infuriating, and sickening this is, but the only side of CD that they see is the stomach aches. It goes so far beyond that, and it’s terrifying. So thank you for sharing your story, and for starting this important conversation that begins to get to the deeper effects of CD.
Know that you’re not alone, and a lot of people, especially on here, are rooting for you!
Please know this is completely honest, and no one has forced me to write this. I am a 37 year old woman who has been trying for 9 years to get pregnant I finally got pregnant 2 weeks after I contacted priest Iyare on his website, It was simply amazing. I had history of recurrent miscarriages and was also diagnosed with genetic problems but using his system I got pregnant naturally at age 37& after 2 HSGs and 4 negative IUIs including 6 induction Clomid cycles and laparscopy. I had zero side effects.. God bless you and reward you. I HIGHLY recommend this product!” anybody who need his help to get pregnant or get any other problems solved should just Google his name ( Prophet Iyare ) and you will get all his details you can use in contacting him.
Margaret From USA
I just wanted to put this out there to encourage anyone who has coeliacs not to give up!! I was sooo sooo sick for over 2 years ending in me no longer being able to walk from my bed to the bathroom… when my husband at the time wasnt home, I would crawl on my hands and knees to the bathroom, kitchen etc. That was almost 15 years ago. As mentioned by somebody else above I went to the doctors many many times, with diagnoses ranging from “you’re fine” to “you have anoxeria” over the course of the 2 years. I definitely didnt have anorexia – I am a foodie through and through.
Finally my salvation arrived in the form of my regular doctor going on maternity leave. I got a substitute doctor… a little Russian pocket rocket called Rosie who took one look at me and said you’re not well. I burst into tears and just could not stop… for someone to finally look at me and see what me and my family and friends had been seeing for months at least (by this time my skin was almost a grey colour, I had lost so much weight as I could not keep anything down and I just looked sickly). She said to me whilst giving me the most giant hug for such a little woman “dont worry, we will get to the bottom of this”. She proceeded to get my blood tested for everything possible and sent me for an ultrasound. The ultrasound showed nothing but within a couple of days my blood tests had come back showing conclusively that I had coeliacs. For those who understand, normal iGa levels are 1-8… I was at 16… apparently that was off the charts, but I’m sure people have had higher… for me, that made me so unwell. I will never forget Rosie… she changed my life, and in such a simple way… just a few blood tests (and a lacroscopy to finalise) and I could now take steps to get myself well again.
I never hugely thought about the implications that coeliacs would have on my fertility… it was there in the back of my mind, but it wasnt until my husband at the time and I tried to get pregnant that it came to the forefront… still, although it was devastating at the time, I knew I would have no trouble loving a child that biologically wasnt mine, and my husband agreed, so we knew that we had a back up plan (adopting). After trying for 6 months, we went to fertility treatment. 2 rounds of Clomphin did not work, and after a little while and due to many many other things our marriage dissolved (dont worry though, this story is a happy one!!)
I left my very stressful job that I had been in for 8 years and went travelling overseas for 4 months. In Spain through a mutual friend I met my now partner around 2 1/2 years ago. I decided a month after meeting him, and after constant contact, that I would visit Sydney on my way home (I’m from NZ) to see if there was anything between us. I never left. I had told him about my fertility issues fairly early on in the relationship and we decided that we would get checked out again together. After quite a bit of money spent (fertility clinics arent cheap!!), we both came back with an all clear and clean bill of health. There was apparently nothing obvious that would stop us from having kids. After my previous struggles I was still VERY doubtful. Around 9 months later at Xmas/New Years time while we were on holiday and I was relaxed and happy, we decided to try. Last month we realised I was pregnant… conception occurred around New Years. I’m now 9 weeks and feel great other than the morning sickness. We have had an early first scan due to my age (35) and the baby looks healthy and has a strong heartbeat. Everything continuing to go well, we will have a healthy baby in September.
I just wanted people to see that its possible to get pregnant if you are looking after yourself, being as strict as possible with your GF diet and possibly if you just relax and try to reduce stress, even if you have been very sick with Coeliacs. I only got on here to find information on whether coeliacs is always passed on to your children (similar concerns to one of the other writers above), but have ended up learning alot, but also being so saddened by some of the comments and concerns from Coeliac sufferers wanting to become mothers. It seems there are quite a few of us above, so the odds must be good. I just wanted to share my story in the hope it might give hope, and wish everyone the best of luck with their situations and stories!!