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Has Anyone Decided Not To Have Kids Based On Your Celiac Diagnosis?


SaraKat

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SaraKat Contributor

I've been on the fence with having kids anyway and now that I was diagnosed with celiac in Sept I am really leaning towards not having them. Anyone else?

Type I diabetes and other autoimmune diseases run in my husband's family too. 2 of his first cousin's and his sister have Type I diabetes and his sister was just dx'd with Sjogren's also. My side has MS and RA and now celiac. RA is on his side too.

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GlutenFreeManna Rising Star

I don't have kids yet and it's likely due to the celiac, but I have not given up yet. If we can't have them in five years we will look into adoption (actually I would like to adopt regardless but can't afford it right now). Anyway the mere threat of my kids getting this would not put me off because it's so easily treated with diet. I'm not saying it's no big deal, but there are much worse diseases out there than celiac. Actually, I don't know anyone that has perfectly healthy families with no diseases at all. Maybe some people don't talk about all their health issues, but everyone has something come up if they live long enough.

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AugieAlexMom Newbie

No. I had two boys after being diagnosed with Celiacs and we are TTC a third baby. While Celiacs can be a pain to deal with, and I am glad that my boys don't have it so far, it is so easily treated with diet that it never even occurred to me that Celiacs might be a reason to not have children. My aunt has 7 children (ages 15 to 2) who are gluten free, so I am aware of the challenges kids face being gluten free. But they still live happy, healthy, productive lives.

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tarnalberry Community Regular

Not everyone who has the genes gets it.

It has not put me off kids, as you can see from my avatar. If she gets it, she gets it. There are SOOOO many things that are passed on to our kids - if not from genetics, then from culture, or from familial bad habits. Celiac is far from the worst thing I could pass on.

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K8ling Enthusiast

I think that having Celiac is a silly reason not to have kids. If you want kids, have kids. If you don't, don't. Parenthood isn't easy, regardless. I have Celiac and knowing that I have it is the first step to treating my son if he starts to show symptoms.

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cassP Contributor

ya, i dont think you should base your desicion to have kids off of your Celiac. it really is not a big deal- everyone's got something.. and you should do what you want in life- and if having kids is part of who you are- you need to live life to the fullest!

i WOULD tho- if you're going to have a baby- i would consider your Celiac dx in your baby plan decisions- for example: Vaginal Delivery as opposed to C-Sections can postpone when someone with Celiac might actually start to express the disease. the same with Breastfeeding. that being said- you can only do what you can do- dont ever feel less than if situations call for a c-section- we cant control everything.

And- i know it's controversial-> but figure out how you want to raise your children diet-wise, and vaccine schedule wise- because those with Celiac have a higher incidence of children with Autism.

i feel very lucky that i was born in a different time: my mom had me vaginally, breastfed me, and i only had 9 vaccs. and altho we grew up eating wheat, we NEVER were the family with glasses of milk at the table, and we ate pretty healthy... i had a few issues in my childhood, but i really didnt start expressing gut issues till my late teens, and 20s.

i, personally, IF i had a good man, would TOTALLY consider having kids. i would love to take my advice above, but ive got Horrific hemmorhoids... so a C-section might be a neccessity. but i would breastfeed,etc. there's no reason to not have kids really- and having Celiac OF COURSE DOESNT mean any of your kids will have it.

good luck with your decision, and pray about it, and LIVE YOUR LIFE :)

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jerseyangel Proficient

those with Celiac have a higher incidence of children with Autism.

I'd be very interested in seeing any links you have to support that statement. Thanks.

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shopgirl Contributor

i feel very lucky that i was born in a different time: my mom had me vaginally, breastfed me, and i only had 9 vaccs. and altho we grew up eating wheat, we NEVER were the family with glasses of milk at the table, and we ate pretty healthy... i had a few issues in my childhood, but i really didnt start expressing gut issues till my late teens, and 20s.

This is a little unfair. I was born via c-section, bottle fed because I was adopted, had all my vaccines, grew up eating wheat, and was a world champion milk drinker. I've never had any health problems outside of my Celiac diagnosis

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Rachel W Apprentice

There are MUCH worse things a person can have than Celiac...Besides, its not 100% that your baby would even have IT ! No one else in my family has celiac, they are ALLLL bread eaters and have perfectly good guts ! If you think about it..and look back even 5 years, look how much gluten free has changed- heck even Betty Crocker has gluten free products and hamburger helper so , we are making progress and IF your child were to have Celiac, think how much more well educated the world would be on Celiac by then..AND being a Celiac you would know what to watch out 4 :)

Sure I have thought about my child missing out when other kids in his class have cupcakes and pizza..but, its no reason NOT to have to a baby if you wants kids B)

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Alison R Rookie

I would wait a while to make the decision about kids if I were you. Right now, it sounds like you feel your Celiac diagnosis is a heavy burden to bear. Those feelings will probably fade over the next year or so......as you get used to your new food choices.

If I thought that I had a high probability of passing on a condition that would make my child unable to live a full and rewarding life, I would agree with your statement and take actions to not have children. Celiac is not that type of a diagnosis though.

I'm cooking more this year since we went gluten free and it has cost us a lot of grocery money changing the kitchen over this month, but I already cooked a lot and I'm seeing health benefits for both me and my fiance.

I don't expect everything to ever be medically "perfect" but we live a very full and rewarding life especially since I am getting better.....and we do plan to have children if I can carry full term.

If you have kids, I would definitely get them in the kitchen with you early to teach them how to cook healthy gluten-free meals for themselves but other than that I don't think raising an additional Celiac in the home would be that different than any other child. The dietary changes have already been made, and every child has things they deal with that make them different than other kids......good and bad.

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Cypressmyst Explorer

There is nothing wrong with your genes. You are reacting to a poison in your body. Everyone with an autoimmune disorder in your family should look at gluten as a possible root cause. The two are very strongly linked.

So once you get yourself healthy again you could have kids if that is what you want, just make sure gluten never touches their lips and that they eat healthy and they will never know these illnesses. :)

That being said one of the reasons I chose not to have kids is because of my bad teeth enamel, hypothyroid, and depression. All of which have improved/disappeared cutting this poison out of my system. I have 7 billion other reasons not to have a child but this is no longer one of them. :P

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cassP Contributor

This is a little unfair. I was born via c-section, bottle fed because I was adopted, had all my vaccines, grew up eating wheat, and was a world champion milk drinker. I've never had any health problems outside of my Celiac diagnosis

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cassP Contributor

I'd be very interested in seeing any links you have to support that statement. Thanks.

i read a crapload of stuff everyday- and i never save it. i just started to google to find articles that i have read. i'll continue looking, but this is the first one i found

https://www.celiac.com/articles/21857/1/Autism-Linked-to-Moms-Autoimmune-DiseaseIncluding-Celiac-Disease/Page1.html

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cassP Contributor

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(about c-sections).

please understand- that my observations from reading new articles everyday are not an attack on anyone- sometimes a woman HAS TO have a C-section.. and vaccines are every parent's OWN PERSONAL decision.

also, i am not attacking how anyone's parents fed them as they grew up. while i wholeheartedly believe that most people have adverse effects from Wheat & Cow's milk, it doesnt mean i say EVERYONE does. some people are just fine.

we all have to be open minded to all the new studies being done everyday- because we all know (especially thru our own personal diagnosis stories) that doctors do not have all the answers yet.

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Laennie Rookie

That was very interesting about the c-sections but I'm wondering if they did any kind of study to see if there was a link between the mother's having Celiac disease? I would think that especially an undiagnosed case of Celiac in the mother would increase the chances for complications etc that might require a c-section.

I had a c-section with my son because of a few reasons. I had extreme sciatic pain & could hardly walk through half of my pregnancy. Then 2 weeks before I had him I had a heart problem (SVT) where my heart was beating at 190bpm & they had to give me a medication that actually stopped my heart for a second before it returned to somewhat normal. After that we began monitoring my heart rate regularly & noticed that I kept having a fairly high heart rate at times (which explained why I had felt so weak, faint & tired at earlier points in my pregnancy). The heart issue combined with my measuring 2 weeks later made my doctor concerned about putting my heart through the stress of vaginal delivery. After an ultrasound (that was incorrect) he decided my son's head was probably too big to make for an easy delivery & I had a c-section that day (THANK GOD!).

At that point I had never even heard of Celiac disease before. Looking back now I believe that I had symptoms since junior high at least but it wasn't until after I had my son that I started having the severe GI problems.

I'm also a negative blood test, positive diet case so I don't have an official celiac diagnosis but my primary doctor & my family believe that I am celiac. So I'm not really sure if possibly being Celiac played into any of those problems for me or not but I'm honestly surprised that there was no mention of the possibility of the mother's having Celiac.

Anyway, I did breastfeed my son for 6 months & he had frozen breastmilk for about 3 months after that. He has been low weight & we have questioned the possibility of him having Celiac but haven't actually gone through any testing yet because there is no good indication that he really is.

As for the original question posted. Even worrying that my son might possible have Celiac doesn't deter me from the idea of having more kids. I'm currently on my 3rd cycle going through fertility treatment and TTC again. If you really want children, this should have no real impact on you having children (unless like me you have fertility issues & having trouble actually getting pregnant).

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zeta-lilly Apprentice

So you're thinking of not having kids at all? Or adopting instead? Because if that's the case, as common as celiac is, chances are that the kids you adopt will have some faulty genes of their own. I don't consider celiac disease to be that bad, and in your case, your family's other autoimmune disorders could very possibly be triggered by gluten intolerance in the first place.

Honestly, it wasn't a factor because I know what to look for and if my kids start to have problems I know what to do about it. I know that's pretty much the only big genetic risk either me or my husband have and otherwise we have good genes.

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  • 1 month later...
nuttmegs17 Apprentice

I am thinking that if I have celiac I may decide to not have kids. Not bc I dont want to pass it on to them b/c living gluten-free is possible, but bc I am concerned about the effect of pregancy on my body. I hear it's considered "stress" and can trigger other autoimmune diseases? I already had graves (in remission), and am almost positive I have celiac (or some other autoimmune problem). i am terrified of triggering a third....is this weird?

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K8ling Enthusiast

My celiac was actually triggered by pregnancy. I also would say, however, that you shouldn't completely rule out kids just because of this. I am currently pregnant with my second child and I have had a normal pregnancy aside from the horrible morning sickness.

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cassP Contributor

I am thinking that if I have celiac I may decide to not have kids. Not bc I dont want to pass it on to them b/c living gluten-free is possible, but bc I am concerned about the effect of pregancy on my body. I hear it's considered "stress" and can trigger other autoimmune diseases? I already had graves (in remission), and am almost positive I have celiac (or some other autoimmune problem). i am terrified of triggering a third....is this weird?

i totally understand what you mean... when i first self dx and ONLY thought i had Celiac... i didnt think that pregnancy should be ruled out at all... no reason to consider yourself less than... then i was dx with Hashimoto's.... big deal i thought- plenty of people have babies with this- its a little more complicated- but it's totally do-able

then i got dx with Grave's on top of that- then i went thru a depression thinking... "man- maybe that's why ive had such crappy luck inlove- maybe God doesnt want me passing down my crappy genes"... it was awful..

anyways- kind of out of that now... but genes aside... having 1 or 2 thyroid conditions can make a pregnancy more complicated- i dont think you should rule it out- but yes- it will take a little more tweaking with the doc. altho i dont know what it would be like for you with only the Graves- and it being in remission. just bring all this up with your doc

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  • 2 weeks later...
thleensd Enthusiast

I think this is a good honest discussion to be having. For me, Celiac may have decided for me whether or not I will have children (through birth or adoption).

I've grown up with the thought that I would have kids one day, but sometimes life throws surprises. I still hope to have them, but I'm getting to a place where I need to consider that I may not.

I'm about to turn 35, and was diagnosed with Celiac two years ago. I'm very strictly gluten-free, but still sick. My particular case was very dire, and my body is still fighting to recover. I'm also underweight and have a very small frame. One of my Celiac issues has left me with severe back/hip issues and muscle/nerve issues. Because of this, I am not sure if I could put my health on the line for a pregnancy, even if I felt better in a couple of years.

My GI doctor, primary doc, acupuncturist all agree that I probably couldn't survive a pregnancy right now... but let's say I'm healthy in 3 years and able to get pregnant, I'll need to think about it again then. But, my guy is quite a few years older, already has two grown kids, and I'm concerned that I may have missed my prime time.

I have considered foster parenting or adoption - maybe even an older child. Who knows, there may be a child waiting for parents that has a wheat allergy, gluten intolerance or Celiac! The age of my guy plays into that, too - by the time I'm healthy he may be ready for retirement!

That being said, one of my Celiac friends has a 1yr old and has elected to include gluten in the baby's diet. She is now feeling Celiac symptoms and is frustrated about that because... well, you can imagine life with a little one with drooly-teething crackers everywhere. :)

Good luck with your thought process. Only you can decide what's right for you!

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Mothering3 Apprentice

I hear it's considered "stress" and can trigger other autoimmune diseases? I already had graves (in remission), and am almost positive I have celiac (or some other autoimmune problem). i am terrified of triggering a third....is this weird?

Its true that pregnancy puts stress on certain systems of the body. However, it is also 'what our bodies are designed for'. (I put quotes, because I don't intend to imply that everyone is "meant" to get pregnant and have kids...I believe we are "meant" to live diverse lives.) So really it is a stress that could be compared to the stress of rigorous excercise. Yes rigorous exercise can stress systems of our body. Like pregnancy, it can even cause injury or illness. But also *not* using our bodies that way, when they were designed for such activities also takes its toll in certain ways. There are health benefits to pregnancy, and for some people who have autoimmune diseases, their disease goes into remission during pregnancy and breastfeeding. (There are also people who have their disease triggered...)

So I would definitely not rule pregnancy out. Also, I have to say that in my own experience, having babies was such an incredibly cool experience in terms of trusting my own body and seeing what it is capable of. I think this could be an even more awesome experience if you have struggled with health challenges. (I had babies before I developed health problems.)

In any case, the choice to have children should be based on whether you really want to raise children. If you do, then even your physiology needn't stop you. If you can't become pregnant, you can make your family in a different way (adoption, etc.) and I would encourage you to. If its what you really desire, don't limit yourself. And if its not really what you desire, or if you desire it only for more trivial reasons like your ego thinks it would be good to pass on your lineage or whatever...meh. Forget it. Its so much work, and anyone can have a rich life and enjoy kids without having their own.

Best wishes in your discernment.

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chili Apprentice

I have 3 children 5,3 and 1 year...I just found out I have celiac. All pregnancies were amazing..all 3 kids were healthy...mind you my last pregnancy was a little more difficult...just with the way I was feeling. I think it is because my celiac was very active during my 3rd. I think I started getting symptoms after my second daughter...

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Mothering3 Apprentice

Yeah, I should add I have 3 kids as well: 10, 5, and 2. All my pregnancies were healthy, and I had really beautiful, natural births without complication, and breastfed all my babies too. Maybe I would have been even healthier if I was gluten-free back then, but in any case, it was a great experience. I would even think about doing it again if my husband hadn't put his foot down! lol

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luvs2eat Collaborator

I have 3 daughters. One was diagnosed w/ bipolar disorder before I was diagnosed w/ celiac disease in my late 40s. I was diagnosed w/ celiac... the bipolar disorder kid was diagnosed about 5 years later. Her younger sister was diagnosed about 3 years after that and has suffered the most serious manifestation of celiac (possible refractory, serious urinary tract issues) and oldest daughter was diagnosed w/ celiac last year after undergoing aggresive chemo for later state breast cancer!!

A friend asked me if I'd have had kids if I'd known about all these health issues that might crop up. She's recently married a man w/ familial polycystic kidney disease and is wondering if having kids is a good idea? I told her that the whole thing is a crap shoot and would I have not had kids knowing what I know now? Yeah... I'd have had them anyhow. The bipolar and breast cancer are fairly random... and the celiac disease is pretty much managed w/ a completely gluten free diet.

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  • 4 weeks later...
T.H. Community Regular

If I had not had kids (I've had two now) and was contemplating pregnancy right now, in the physical shape I'm in? I don't know if I would have done it. I do know I would have seriously considered NOT having children, but since I have them already, I sometimes think that may make it too easy for me to say 'I would adopt.'

I still get glutened so easily that I would be very worried I would not be able to have a healthy pregnancy, now. I had hyperemesis that I would speculate now was my body trying to avoid gluten desperately - looking back, anything with gluten in it made me sicker than everything else. I react to gluten so much worse now than I did when I was eating it regularly, it makes me cringe to think how sick I might get now. And it wasn't a small thing. Most of both my pregnancies was spent focusing on not vomiting for long enough to get some fluids/calories to digest.

And if there are vitamin deficiencies that aren't taken care of yet, that's a legitimate issue. My sister-in-law is very low in iron and her doctor has warned her that getting pregnant might very well kill her, because some of her vitamin levels are so low that the pregnancy could be too much for her. Depending on the vitamin, it can be a really, really serious problem.

Don't get me wrong, even with all that nausea and vomiting and all... I still loved pregnancy. I'm not even sure how I did, but I really did. I rubbed my belly constantly, I thought it was awesome getting big and round and fat, because it felt like this was the shape I was supposed to be, and that was wonderful. I loved feeling my little ones move inside me. I talked to my baby from the second I knew there was one in there. Giving birth felt a bit like meeting a person I'd been getting to know in my womb for the past months. It really can be a beautiful thing.

But it was also one of the most miserable, horrible times in my life, at the same time, because I did not have an easy pregnancy or an easy birth, and definitely not an easy time with the last baby. Not the worst or the scariest by any means, but pretty darn awful. And no offense to everyone who had really lovely births and pregnancies, but honestly? That makes a huge difference, and you do NOT know what you're going to get. Celiac or not, healthy or not, you just don't know. It's something everyone should honestly consider, IMO, before they get pregnant.

I still remember crying when my second child was a few months old. We'd bought all these books for 'big sisters' about the new baby in the family, and it had all these lovely stories and pictures of the new baby, and holding them, and feeding them, and what it would be like, and what they would do, and my daughter looked at me and asked why none of the books talked about OUR baby?

Because with our baby, I was supposed to be on bedrest for weeks due to blood loss, but couldn't because my son was reacting to my milk because of foods that I ate, and he screamed 20 hours a day, sleeping in 5 minute snatches, for his first weeks of life. My husband actually timed him a few days, because he couldn't believe we were figuring out the amount of screaming correctly. Even when we figured out some of the food, he cried and fussed for months, for hours and hours every day. It was a nightmare. I was so depressed my husband was scared to death. I can't even REMEMBER one single thing about my older child during that whole first year of her younger brother's life, let alone time with my husband.

You don't know what a pregnancy is going to be like, or a birth, and if you have concerns - well, i guess I'd investigate them. See if you can find an OB/GYN who is willing to talk with a GI doctor about possible issues, see if anything will be a problem. Do you take vitamin supplements? And can they be absorbed differently by a fetus than by you? Are you vitamin deficient? What other auto-immune diseases ARE in your family, because yea, I think worrying about triggering one might be a risk. I don't know how high of one, and I don't think docs necessarily know either, but...I believe I'd be thinking about it now, after what I've learned.

And re: any child could have a problem, adopted or not? That's true, but it's a choice between bringing a child into this world with a challenging condition, or giving love to a child who already IS in this world with a challenging condition. Really different thing.

I would never say 'don't have a child' lightly, because it's a huge, huge deal. Very personal, always something to think about carefully, and when we know we're not in an emotional place. But sometimes it might be the right one for you, too.

It's something I am experiencing vicariously, as some very good friends of ours have a little one who is severely mentally handicapped, just a year old now, and it's been so heartbreaking. They've been doing genetic testing and every other type of testing you can think of as part of a 'should we try for other children ever' process, so I've seen how deeply painful the thought is to even contemplate.

I wish you the best of luck in making your decision.

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