What Are The Chances Of Our Kids Being Celiac?

[Kyalesyin]

My wife and I want to have children, sometime in the near future. Probably within the next 4/5 yeas. We're both female, but the plans were that she was going to carry them because I'm by all counts infertile thanks to some internal damage.

The fact is, we're now neither of us sure that its a good idea, since I've heard in quite a few places it can be genetic, and her mother has recently [as in, within the last two years!] started suffering the same symptoms.

She's only been recently diagnosed, and I'm trying to reasure her that once she gets the hang of managing her condition she won't feel so bad about having kids. At least if our kids have the same issue it'll make mealtimes easier!

Any thoughts on this?

[eKatherine]

You want to not have kids because gluten intolerance is genetic? Everything's genetic, including being human. This is a condition that can be controlled by minor dietary manipulations, not some disease that causes babies to be stillborn or suffer horribly then die in their first month of life.

[Kyalesyin]

Aye, I know that, and I'm not sure why she's suddenly dead set against it. If it was me, I'd be ok with it, but its her body. Being diagnosed with celiac in the first place was just about her worst-case scenario when we were crossing off the list of 'could be's when were were working out what was wrong.

She can't imagine not being miserable at the moment, and doesn't want out kids to be 'suffering' the way she is.

[gfp]

My wife and I want to have children, sometime in the near future. Probably within the next 4/5 yeas. We're both female, but the plans were that she was going to carry them because I'm by all counts infertile thanks to some internal damage.

The fact is, we're now neither of us sure that its a good idea, since I've heard in quite a few places it can be genetic, and her mother has recently [as in, within the last two years!] started suffering the same symptoms.

She's only been recently diagnosed, and I'm trying to reasure her that once she gets the hang of managing her condition she won't feel so bad about having kids. At least if our kids have the same issue it'll make mealtimes easier!

Any thoughts on this?

If you are brought up gluten-free by two gluten-free parents then I doubt this will ever be an issue.

The only issue is the child being classed as "different" at school but this is changing very quickly and you are 5 years away from school. Not to mention the child is going to in some respects deal with being different either way...

Your partner and now wife has accepted this part, I can't see the issue from a coeliac POV. IMHO I would say the fact you mention elsewhere that you are both still young is a better reason to defer. It could be that your wife is just not ready to accept having a child yet with the responsibility and change of lifestyle and is using this as an excuse. Perhaps she isn't ready to carry a child for 9 months... heck it would frighten the heck out of me....

I suggest talking to her about the whole issue... being coelaic is not a reason not to have kids at all. Not being ready is a perfectly good one!

[Nic]

Hi, I can understand her fear to a point. My son was diagnosed a year ago but before he was he suffered horribly. His primary symptom was constipation but it was so severe that he would be on the floor in pain and no one knew how to help him. On the other side my youngest son had some serious problems as well (so far not diagnosed as a Celiac). He had hypotonia (very poor muscle tone) and developmental delays. His lower half of his body was like mush he dragged himself around on his elbows with the rest of him just dragging behind. Even now he has poor tone in his trunk, neck, and mouth and is still receiving phsyical, occupational, speach, and feeding therapy (although he is smart as a whip thank God). No one ever found the cause of this, maybe the meningitis he had as an infant or possibly genetic. My point is, I have 2 kids with possible genetic disorders (well the Celiac we know for sure). We have always gone back and forth on a 3rd. When Jacob was diagnosed Celiac I said "no way" to the 3rd because I would not want another child to go through the suffering that he went through. But even if the 3rd one or the 2nd one for that matter ever gets sick, they would not go through the same suffering because now that we know Jacob has Celiac, at the slightest sign of symptoms we would get them tested. It would never get out of control the way Jacob was. The same would be for you. If you do not choose to raise your children gluten-free you would just watch for symptoms. Or when the child is a little older (little ones do not always test accurately) have him or her tested.

The gluten-free diet should not be a concern for raising a Celiac child. Most moms (and dads, sorry) here would agree that the kids adjust very easily to the diet especially when they are little. My son was 4. There are so many good gluten-free food choices that they are never left without. My son still eats all of the childhood favorites that everyone else enjoys, ex: mac and cheese, chicken nuggets, spaghetti, and even brownies and cupcakes on special occasions. The only thing he misses is Cheerios that is only once in a while. And he doesn't so much have a problem with being "different". He very openly tells people what he can and can't eat and tells all of his pre K friends that he has Celiac. They all go home and tell their parents that Jacob has to eat special food. It is a big conversation piece at B-Day parites. Please feel free to pm me if you wife wants someone to talk to who is raising a Celiac child.

Nicole

[Guest nini]

in my humble opinion, the rewards of having children outweigh the risks... besides, Celiac is easily controlled by diet and since you know now before hand what might happen you can be better prepared for it. I have one child, she's six, but I was dx'ed when she was 3, not before she was born. If she is concerned about passing on the genes to a child, yeah, very possible, in fact, most likely, but being gluten free does not have to make you different and stand out. I would like to think that my daughter is a very well balanced, healthy, normal little girl, and she's got lots of friends that usually want HER food.

Something to consider, If the child has the genetic predisposition to Celiac and they grow up in a gluten-free household, as long as this child doesn't get into gluten they are going to be one of the healthiest kids around! I'm very greatful for my dx, because I know that my daughter won't have to suffer the same horrible illnesses and getting called a hypochondriac or being made fun of because of stinking up the bathroom at school...

Your wife is still dealing with the shock of her dx, and needs some time to come to terms with it. She needs to understand that the dx is a good thing. That now she can start to be healthy, perhaps healthier than she's ever been in her life. The diet doesn't have to be difficult, I find it very easy and not expensive at all, it's all in how you look at it. She can choose to have a victim mentality and cry and go "woe is me" or she can decide to make the best of this and embrace the gluten-free lifestyle and learn to have fun with it.

[eKatherine]

Something to consider, If the child has the genetic predisposition to Celiac and they grow up in a gluten-free household, as long as this child doesn't get into gluten they are going to be one of the healthiest kids around! I'm very greatful for my dx, because I know that my daughter won't have to suffer the same horrible illnesses and getting called a hypochondriac or being made fun of because of stinking up the bathroom at school...

What I would like to see is some research showing whether babies in utero are exposed to the gluten their mothers eat, just as gluten passes into milk. I think prenatal gluten exposure could be responsible for early childhood celiac. How else could it be that some babies seem to be born already reacting?

[gfp]

What I would like to see is some research showing whether babies in utero are exposed to the gluten their mothers eat, just as gluten passes into milk. I think prenatal gluten exposure could be responsible for early childhood celiac. How else could it be that some babies seem to be born already reacting?

Actually this gives a possibility to perhaps offset this

The two celiac antibodies are both unique in respect to two things...

IgA is specific to being tranferred through maternal milk....

IgG1, IgG3 and IgG4 cross the placenta easily and are transferred duting pregnancy.

With suitable hormones the two could be split, one mom carrying and one mom breast feeding.

but the evidence seems a bit like oats.... one study says breastfeeding reduces and another says increases...

The same with when to introduce gluten etc.

I think the whole thing depends on if the mom was gluten-free... during pregnancy and during lactation.... but quite how is beyond me!

Jegstar.... we need you here ....

[happygirl]

taken from celiac.com, based on a study by leading Celiac researcher Dr. Fassano: (I have been interested in this as well, as we want a family in the next few years)

According to a recently published large-scale multi-year and multi-center study, 1 in 133, or a total of 2,131,019 Americans have celiac disease. Alessio Fasano, MD, et. al., and colleagues screened 13,145 subjects using serum antigliadin antibodies and anti–endomysial antibodies (EMA). Those who had positive EMA results were screened again for human tissue transglutaminase IgA antibodies and celiac disease-associated human leukocyte antigen DQ2/DQ8 haplotypes, and when possible, intestinal biopsies were also given. Additionally, for those with biopsy-proven celiac disease, 4,508 first-degree relatives and 1,275 second-degree relatives were also screened for the disease. A total of 3,236 symptomatic patients and 4,126 not-at-risk individuals were screened.

The study determined the following:

Group Prevalence

First degree relatives 1 in 22

Second-degree relatives 1 in 39

Symptomatic patients 1 in 56

Not-at-risk individuals (overall prevalence) 1 in 133

These results are much higher than previous studies have found, and they indicate that celiac disease is perhaps the most common genetic disorder in the United States, as well as one of the most poorly diagnosed diseases.

[Nic]

What I would like to see is some research showing whether babies in utero are exposed to the gluten their mothers eat, just as gluten passes into milk. I think prenatal gluten exposure could be responsible for early childhood celiac. How else could it be that some babies seem to be born already reacting?

It is funny brought this up. I was just speaking to my sister about my youngest son and the new thoughts of the doctors that maybe Celiac caused his hypotonia and developmental delays. We were wondering if it could happen in utero due to the fact that he was an infant and I never breast fed him.

Nicole

[Luvs to Scrap]

Obviously, celiac is genetic but so is hair color, size, and lots of other things we don't worry about passing on. My DH wasn't diagnosed until we already had both of our children and now DS has celiac to. We have talked about it and even knowing that DH had celiac we still would have had both children. Both guys feel so much better on the diet and it is something that can be controlled by diet. I can think of a lot worse things for my son to have! That said--it is still a big adjustment and learning curve. I have days I am frustrated with the whole situation and other days I feel like I am finally getting the hang of things. DH's grandma was pretty upset when he was diagnosed because she is the one with celiac. Jason told her that he was more upset about her passing on the early graying of the hair than the celiac. LOL Anyway, it got her to laugh and we wanted her to know that we don't blame her and weren't upset at her.

I think your wife is probably not ready to have kids right now which is fine. You stated that you wanted to wait awhile anyway. We waited 4 years to have our son and I am glad. It gave us a chance to get to know each other better and adjust to being married. Once she is ready to have kids the gluten intollerance thing probably won't be such a big deal. Just getting diagnosed is a big shock and she will need some time to adjust to that. (Not to mention moving and being a newlywed.) Wish you the best. Kendra

[jayhawkmom]

Having children is a huge deal, whether there are medical history issues or not. I agree that the benefits outweigh the risks... I have 3. =)

But, I will add that I knew *nothing* of Celiac or Gluten Intol until a couple months ago. At that point... it was already "too late" for us. 2 of the 3 are demonstrating symptoms.... and we are learning to deal with it.

I think if you put a positive spin on gluten freedom, the children will be raised with a sense of security that will not cause issues further down the road. Heck, a lot of the gluten-free stuff we've tried is BETTER than it's non-gluten-free counterpart! I find that I prefer Montana's Chocolate Chip Cookies to say...Chips Ahoy. And, no one would be able to tell that we were eating anything "different."

It does sound like your wife might just be scared and not ready to have kids. Which is totally understandable! It is scary! Growing a human is a big responsibility and sacrifice. Just because she might not be ready now doesn't mean she won't be in a year or two.

Give her time, give her space, talk about it without pressure, and reassure her that Danna Korn (and all of us Mommies and Daddies) are here to support you both on your journey toward becoming Celiac parents.

I'll add my disclaimer here... I'm still VERY new to this and while today I'm in a very positive mood.... I wasn't yesterday. I'm also going through "gluten withdrawl" as I'm now gluten-free as well, and while I'm having difficulty adjusting - I'm making do!

Best wishes to yoU!

[Jestgar]

Actually this gives a possibility to perhaps offset this

The two celiac antibodies are both unique in respect to two things...

IgA is specific to being tranferred through maternal milk....

IgG1, IgG3 and IgG4 cross the placenta easily and are transferred duting pregnancy.

With suitable hormones the two could be split, one mom carrying and one mom breast feeding.

but the evidence seems a bit like oats.... one study says breastfeeding reduces and another says increases...

The same with when to introduce gluten etc.

I think the whole thing depends on if the mom was gluten-free... during pregnancy and during lactation.... but quite how is beyond me!

I actually wondered about this a while ago and tried to find info on prevalence of reactive infants at birth from undiagnosed celiac moms. Also info on passing gluten to newborns through breast milk.

There's not a lot of info out there on these specific questions, but I can probably find studies on other proteins and antibody reactions. I do my pubmed searches at work since the university connection gives me full access to the journals online and right now I don't have time.

I do find the question interesting , however. Does the mom passing anti-gluten antibodies help the newborn by offering some protection? Or does she quicken the destructive process? And does it matter if she is celiac and eating gluten?

I actually suspect that the best way to find the answer to this is to poll the moms on this site. There is an amazing collection of knowledge here.

[gfp]

I actually wondered about this a while ago and tried to find info on prevalence of reactive infants at birth from undiagnosed celiac moms. Also info on passing gluten to newborns through breast milk.

There's not a lot of info out there on these specific questions, but I can probably find studies on other proteins and antibody reactions. I do my pubmed searches at work since the university connection gives me full access to the journals online and right now I don't have time.

I do find the question interesting , however. Does the mom passing anti-gluten antibodies help the newborn by offering some protection? Or does she quicken the destructive process? And does it matter if she is celiac and eating gluten?

I actually suspect that the best way to find the answer to this is to poll the moms on this site. There is an amazing collection of knowledge here.

And the celaics.....

I was bottle fed, my mother is celiac (not diagnosed until 65 though) my brother was breast fed and is non celiac.

My mother would have been eating gluten in both pregnancies.

I thought you might find it interesting

love the avatar: put down any hot liquids and click Open Original Shared Link

taken from celiac.com, based on a study by leading Celiac researcher Dr. Fassano: (I have been interested in this as well, as we want a family in the next few years)

According to a recently published large-scale multi-year and multi-center study, 1 in 133, or a total of 2,131,019 Americans have celiac disease. Alessio Fasano, MD, et. al., and colleagues screened 13,145 subjects using serum antigliadin antibodies and anti–endomysial antibodies (EMA). Those who had positive EMA results were screened again for human tissue transglutaminase IgA antibodies and celiac disease-associated human leukocyte antigen DQ2/DQ8 haplotypes, and when possible, intestinal biopsies were also given. Additionally, for those with biopsy-proven celiac disease, 4,508 first-degree relatives and 1,275 second-degree relatives were also screened for the disease. A total of 3,236 symptomatic patients and 4,126 not-at-risk individuals were screened.

The study determined the following:

Group Prevalence

First degree relatives 1 in 22

Second-degree relatives 1 in 39

Symptomatic patients 1 in 56

Not-at-risk individuals (overall prevalence) 1 in 133

These results are much higher than previous studies have found, and they indicate that celiac disease is perhaps the most common genetic disorder in the United States, as well as one of the most poorly diagnosed diseases.

Yes of course the previous studies were fundamentally flawed because they included lots of celiacs in the non celiac group. That is they presumed celiac was so rare 1:5000 that they had more non symptomatic celiacs in the control than diagnosed ones in the test group.

[tarnalberry]

the chances, as were mentioned in the fasano study someone posted, are around 5%. thing is, celiac is totally controllable, and, once on the diet, no more of a health threat than no having it. having bi-polar or the genes for cystic fibrosis, breast cancer, haemophilia, or sickle cell anemia run in the family might be a good reason to reconsider having kids (though I'm not saying it's a reason to not have them), but celiac? nope. since you're aware of it and know to have any potential kids tested for it and will already have knowledge of the gluten-free diet, it's relatively minor in the world of "what negative legacy could I leave my kids with, medically?" comparitively speaking.

BUT! this change is new and very big to her. when first faced with it, particularly if she hadn't heard of it before, it can seem earth-shaking, because it changes the core of what you were taught. ('what, wheat is bad?!') so I'd suggest shelving the children conversation for four months, while she gets the hang of the diet, and comes to understand what it's like to have the condition from a state of understanding where it's easier to respond less on pure emotion. she may still feel the same way in the end, and that's ok, but she'll have more experience to support her opinion.

[gfp]

the chances, as were mentioned in the fasano study someone posted, are around 5%. thing is, celiac is totally controllable, and, once on the diet, no more of a health threat than no having it. having bi-polar or the genes for cystic fibrosis, breast cancer, haemophilia, or sickle cell anemia run in the family might be a good reason to reconsider having kids (though I'm not saying it's a reason to not have them), but celiac? nope. since you're aware of it and know to have any potential kids tested for it and will already have knowledge of the gluten-free diet, it's relatively minor in the world of "what negative legacy could I leave my kids with, medically?" comparitively speaking.

BUT! this change is new and very big to her. when first faced with it, particularly if she hadn't heard of it before, it can seem earth-shaking, because it changes the core of what you were taught. ('what, wheat is bad?!') so I'd suggest shelving the children conversation for four months, while she gets the hang of the diet, and comes to understand what it's like to have the condition from a state of understanding where it's easier to respond less on pure emotion. she may still feel the same way in the end, and that's ok, but she'll have more experience to support her opinion.

i agree totally and just want to add that the UK has come a long way in the last 5 years and as for 10 years ago being a celiac is far simpler. Once testing catches up you can expect life to be completely different. I say this having just returned from Italy where kids are routinly screened pre-school. You can find certified gluten-free resto's allover if you just ask and when you do ask its not like you have two heads. Even dining in any resto the waiter usually knows a friend or relative with celiac disease.

By the time you have the baby (don't know how you are planning to conceive but add any delays to 9 months) and you start having any problems outside your control, for instance starting school or wanting to eat out once the child reaches 5 you can expect this to have changed again.

[Eeyorific]

What I would like to see is some research showing whether babies in utero are exposed to the gluten their mothers eat, just as gluten passes into milk. I think prenatal gluten exposure could be responsible for early childhood celiac. How else could it be that some babies seem to be born already reacting?

I know I'm not part of a "Study" nor am I a doctor.. Only a mother who went through this EXACT thing with my son. I am not able to have anymore children, but if I were, and had more, had I still be on a NGF diet (just went gluten-free 10 months ago) I would go gluten-free strictly for that babies sake, given what we have learned to be true in our family.

[Nic]

I say this having just returned from Italy where kids are routinly screened pre-school. You can find certified gluten-free resto's allover if you just ask and when you do ask its not like you have two heads. Even dining in any resto the waiter usually knows a friend or relative with celiac disease.

Is Celiac more common in Italy or are they just more aware of it? I am wondering because I was reading a thread on here where people were talking about the affiliation with Celiac and the Irish. My husband is Irish (non Celiac) but it is my Italian side that has been passing it along (father, aunt, son, 3 cousins, possibly grandfather who was never tested because God forbid anyone knew he had "D"). I have heard a lot about this being common in "Northern Europe". I wasn't sure about Italy.

Nicole

[gfp]

Is Celiac more common in Italy or are they just more aware of it? I am wondering because I was reading a thread on here where people were talking about the affiliation with Celiac and the Irish. My husband is Irish (non Celiac) but it is my Italian side that has been passing it along (father, aunt, son, 3 cousins, possibly grandfather who was never tested because God forbid anyone knew he had "D"). I have heard a lot about this being common in "Northern Europe". I wasn't sure about Italy.

Nicole

As far as I know there are no real differences in haplotype R peoples which includes celts and italians.

The numbers from screening are available in different countires but some like the UK have hidden them from public view.

Italy has a screening rate of 1:133, identical to studies in the US but has a diagnosis rate of 1:200 ....

There are local clusters such as Kerry and even a small one in Western Norway but both of these seem to be more Spanish influence than Italian dating back to the Armada? So I think the main difference is simply screening.

I am starting to wonder if these clusters themselves were not part of the whole non-identification of celiac.. that is people were using incidence rates of 1:5000 until 10 yrs ago and still use 1:1000 if they want to screw people from getting tested .... so if one family had 2-3 people and the Dr. became aware and then found others and all along the 1:133 figure was correct then its easy to see how even this triggering a study and 1:500 would be regarded as exceptional.