Struggling with whether to have kids

[Faberferrum]

Hi, does anyone else struggle with the question of whether they should have kids, as a person with celiac?  I'm 32, male, with celiac, married to a wonderful wife who doesn't have celiac.  We would like to have kids, but it's really tough for me to think of passing on a disease that will affect my kids their entire lives.  I would feel responsible for giving it to them.  I'm aware of the related statistics, but in my family my grandmother had it and both my father and his only sister have it.  Those statistics seem pretty high.  I'd love to hear anyone else's thoughts about choosing not to have kids to stop the spread of the disease.  Or anyone who's thought about this and chosen to go ahead and have kids. Thanks.

[trents]

You are probably aware of this statistic, as you say, but there is a 44% chance that your first degree relatives (which includes your offspring) will develop celiac disease. So, depending on how you look at it, there is better than an even chance your offspring will not develop celiac disease or there is a very good chance they will. But here are some offsetting factors to that risk:

1. They will grow up in a home that is very celiac aware, very vigilant as to the development of celiac disease and who will get on top of it quickly before much body damage is done.

2. They will already be very aware of how to avoid gluten and to implement work arounds. It would not  be so strange to them as it would had they developed the disease but grew up in a home that was not celiac aware.

3. By the time they may develop celiac disease there may be some medical breakthroughs that either cure celiac disease or make it possible for celiacs to safely consume gluten. There is very promising research being done right now using monoclonal antibodies.

But your question is a valid one and  thoughtful. It has come up before on this forum.

[cristiana]

41 minutes ago, trents said:

You are probably aware of this statistic, as you say, but there is a 44% chance that your first degree relatives (which includes your offspring) will develop celiac disease. So, depending on how you look at it, there is better than an even chance your offspring will not develop celiac disease or there is a very good chance they will. But here are some offsetting factors to that risk:

 

Trents, am I right in thinking this statistic is new research because when I was diagnosed I was told 1 in 10 chance that my children would have it?  The official NHS website seems to say something similar, if I am reading it correctly, but I wouldn't be at all surprised it it were out of date.  My own gastroenterologist gave me this statistic too but that was back in 2013, which seems a very long time ago now...

https://www.nhs.uk/conditions/coeliac-disease/causes/#:~:text=Family history,those with a family history.

[Scott Adams]

Are you sorry you were born because of your celiac disease? I may have felt like that at some point before I was diagnosed, but not after. Also, there are promising new treatments on the horizon that may one day eliminate the need for a gluten-free diet (which isn’t so bad even if this doesn’t happen):

 

[trents]

Cristiana, a new study came out earlier this year that showed 44% of first degree relatives of celiacs had celiac disease themselves. It was a large study with 300+ people tested by biopsy. The large number of study participants would seem to support it's reliability. I thought I saved the link but I can't find it now. Maybe Scott has it handy. Yes, 10% was the figure we were working from for years but the percentage is actually much higher than was previously thought.

Edited September 12, 2021 by trents

[cristiana]

Thanks, Trents.  Yes, I seem to remember seeing something about it on this forum but I can't recall where.  It chimed with me as my mother had osteoporosis and I wanted her to be tested but it never happened. Hopefully Scott will know where it was.

[RMJ]

Scientists have studied the development of celiac disease in at-risk children, looking at things like when to introduce gluten and how much.  Here are links to two recent journal articles.  Unfortunately, the studies don’t all agree and the recommendations change from year to year.

Can celiac disease be prevented?

Effect of food and viruses to trigger celiac disease

 

[Faberferrum]

Thank you all very much for your thoughts. It is invaluable to me in working through this issue to hear from other celiac people.

RMJ, I read through the second study you linked and found it interesting. Particularly the notes about rotavirus vaccines and Mediterranean diet.  Having trouble getting the first link to work, perhaps you could post it again?

I searched the forum for a while but wasn't coming up with too many posts related to this question, so I thought I'd start my own.  If anyone could point me to previous discussions of the topic I'd be much obliged.

Scott Adams, I'm not sorry I was born, even though I have a disease. That's a good way to put it.  Thinking about this, I realize the issue is fear. I'm afraid of having a having a child diagnosed, and then feeling sad and guilty every time I see them, feeling like I caused problems in their life.

Trents, you make some good points. I grew up in a celiac household, and now live with it myself. My wife is a pharmacist with good general medical knowledge who was entirely willing to learn gluten-free cooking and baking when we got married.  Our house is well equipped to support a child at risk of celiac.

[trents]

Here is the research I was referring to: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ Very recent, 2019.

But this other, much older, study found only 4.2% of first degree relatives had celiac disease: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-14-36

I'm not sure why there was such a disparity in the results between these two studies.

[cristiana]

Hello Faberferrum

Fear is a big thing, and I wear the T-shirt on that one!

But as coeliac, I honestly think my one main regret about having coeliac disease is that I wasn't diagnosed sooner as I feel my health would have been much more robust now.  (I've had issues with anemia and stuff like that.)  The thing is,  should you choose to have kids and they do develop coeliac disease, they will be spared the effects of all sorts of issues caused by delayed diagnosis.

I am a naturally pessimistic sort but when it comes to celiac disease, I see lots to be  positive about - there's a lot in the supermarkets to cater for us, significant interest and support from the medical and scientific community, as well as a vast number of "fellow travellers" these days.   I don't just mean coeliacs.  I have several friends who were diagnosed with coeliac disease around the same time as me, but also I know a number of people who in recent years have developed significant food intolerances or food allergies, so there are plenty of people who understand the complexities of a restricted diet, which makes the journey all the easier.  It seems more and more people are being touched by these issues.

I worked in hotels in my early working life and I honestly have no recollection of having to cater for a single person with a special diet, other than the odd vegetarian.  How the world has changed. 

I guess that if there was ever a good time to be a coeliac, it is now.

 

 

Edited September 13, 2021 by cristiana

[RMJ]

Trying again, it looks like I linked the same article twice, sorry.

Can celiac disease be prevented?

[Ivana]

Hello Faberferrum,

my first reaction or question to your post was the same as Scott's. Are you sorry you were born now that you have celiac? I am definitely not, nor do I resent anyone for passing on the gene to me, nor do I feel sad about it a year after the diagnosis. Life is unpredictable, and chances are if we live long enough that less pleasant things will also come our way. But that's life, if it is not one thing, it will be another... If celiac, then your childred would at least have the best possible environment to live and grow up in. Most of us probably grew up not knowing about possibly having celiac, and neither did our parents, so your children would have a much better start, and could live a perfectly healthy life. All in all, celiac alone would not prevent me personally from having children. 

[RMJ]

22 hours ago, trents said:

Cristiana, a new study came out earlier this year that showed 44% of first degree relatives of celiacs had celiac disease themselves. It was a large study with 300+ people tested by biopsy. The large number of study participants would seem to support it's reliability. I thought I saved the link but I can't find it now. Maybe Scott has it handy. Yes, 10% was the figure we were working from for years but the percentage is actually much higher than was previously thought.

Trents, thank you for saying that one study showed the 44% figure.  

High prevalence of celiac disease among screened first-degree relatives

As a scientist, when people just state that first degree relatives have a 44% chance it irritates me.  It was one study, only cited by four papers since then. Other studies show quite different, and usually lower, numbers.   One study had an almost 80% chance for identical twins.  Note that it was not 100% for identical twins, so it isn’t just genetics.

Faberferrum, have you and your wife considered genetic testing for the genes that predispose one to celiac disease? You obviously have a gene for it, but one copy or two?  If two copies your child would definitely get a copy, but if you only have one copy and your wife doesn’t have any, there’s only a 50% chance a child would have the gene for susceptibility.

[AlwaysLearning]

Have the kids!!!

Having celiac is not a disability! 

It is an occasional pain in the butt, but a person with celiac can do everything in life that a non-celiac can. They just have to pack their own food. 

Also, I highly recommend that you find some ways to change your outlook. Ask yourself why you feel as if being gluten free is such a hardship. Is it social pressures, and if so, where are those pressures coming from? Yourself? Change your thinking? Others? Change your friends.

Embrace the things in life that you can do to take control of the situation. If you miss hanging out with friends, then start inviting them over to your house where you can control the food and drink options so that you're not left out. Find interests and hobbies that don't revolve around food or drink.

Celiac is most definitely NOT a reason to avoid having children.

[notme]

as a mom who has passed on her crappy genes to my children, i wouldn't have skipped having them.  they are my pride and joy.  i'm pretty sure they're happy i had them, lolz, 

"don't let the good life pass you by"

[ShellWhele]

Hi,

My straightforward honest answer is, you should go for it.  If you want children have them.  In the big picture Celiac disease isn't the end of the world.  You're doing ok, and your kids will  be ok too.

I say this also, as my father was legally blind, which means even with glasses he couldn't see enough to function wit out help.  No driving reading on his own etc.  He and my mom had two kids.  My sister has almost normal vision.  Mine is just like my dads.  I'm glad they were brave enough to have me.   My dad loved his life, and he showed me how to love mine too.  Parents who never expect to have kids with specials needs rise to the occasion every day.  Odds are your children will not have celiac disease, and if they do, they'll have great parents to help them navigate the gluten-free world.

Shelley

[ShellWhele]

PS.  I also have kids, and even though the odds of them sharing my blindness were incredibly low all of my kids share my visual disability.  And it's true sometimes I feel sad for them and how tough things can be, but things are tough for lost of people, and at least for us, we have a built in support group.  They're such cool people too.  I loved being their mom when they were little and I love being their mom now that their grow.  I am sure you'll feel the same way for your kids too. 

[trents]

Here's another perspective. Sure, celiac disease is a bummer. It is socially limiting and makes eating more expensive and less pleasurable. And when it goes unchecked and unheeded it can cause lasting damage to other body systems. But unlike many other diseases, we know what the cause is and we know what the remedy is. And the remedy has no side effects, essentially. It's just a gluten-free life-style. It is quite manageable. I'd much rather have celiac disease than diabetes or RA or cancer or a hundred other medical conditions.

Edited September 15, 2021 by trents

[Faberferrum]

On 9/12/2021 at 11:06 PM, trents said:

Here is the research I was referring to: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ Very recent, 2019.

But this other, much older, study found only 4.2% of first degree relatives had celiac disease: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-14-36

I'm not sure why there was such a disparity in the results between these two studies.

Thank you, I will read through that when I'm more awake.

[Faberferrum]

On 9/13/2021 at 2:50 AM, cristiana said:

Hello Faberferrum

Fear is a big thing, and I wear the T-shirt on that one!

But as coeliac, I honestly think my one main regret about having coeliac disease is that I wasn't diagnosed sooner as I feel my health would have been much more robust now.  (I've had issues with anemia and stuff like that.)  The thing is,  should you choose to have kids and they do develop coeliac disease, they will be spared the effects of all sorts of issues caused by delayed diagnosis.

I am a naturally pessimistic sort but when it comes to celiac disease, I see lots to be  positive about - there's a lot in the supermarkets to cater for us, significant interest and support from the medical and scientific community, as well as a vast number of "fellow travellers" these days.   I don't just mean coeliacs.  I have several friends who were diagnosed with coeliac disease around the same time as me, but also I know a number of people who in recent years have developed significant food intolerances or food allergies, so there are plenty of people who understand the complexities of a restricted diet, which makes the journey all the easier.  It seems more and more people are being touched by these issues.

I worked in hotels in my early working life and I honestly have no recollection of having to cater for a single person with a special diet, other than the odd vegetarian.  How the world has changed. 

I guess that if there was ever a good time to be a coeliac, it is now.

 

 

 

On 9/13/2021 at 12:38 PM, RMJ said:

Trents, thank you for saying that one study showed the 44% figure.  

High prevalence of celiac disease among screened first-degree relatives

As a scientist, when people just state that first degree relatives have a 44% chance it irritates me.  It was one study, only cited by four papers since then. Other studies show quite different, and usually lower, numbers.   One study had an almost 80% chance for identical twins.  Note that it was not 100% for identical twins, so it isn’t just genetics.

Faberferrum, have you and your wife considered genetic testing for the genes that predispose one to celiac disease? You obviously have a gene for it, but one copy or two?  If two copies your child would definitely get a copy, but if you only have one copy and your wife doesn’t have any, there’s only a 50% chance a child would have the gene for susceptibility.

We had not considered it, but I am looking into it now. Thanks

[Faberferrum]

On 9/13/2021 at 2:50 AM, cristiana said:

Hello Faberferrum

Fear is a big thing, and I wear the T-shirt on that one!

But as coeliac, I honestly think my one main regret about having coeliac disease is that I wasn't diagnosed sooner as I feel my health would have been much more robust now.  (I've had issues with anemia and stuff like that.)  The thing is,  should you choose to have kids and they do develop coeliac disease, they will be spared the effects of all sorts of issues caused by delayed diagnosis.

I am a naturally pessimistic sort but when it comes to celiac disease, I see lots to be  positive about - there's a lot in the supermarkets to cater for us, significant interest and support from the medical and scientific community, as well as a vast number of "fellow travellers" these days.   I don't just mean coeliacs.  I have several friends who were diagnosed with coeliac disease around the same time as me, but also I know a number of people who in recent years have developed significant food intolerances or food allergies, so there are plenty of people who understand the complexities of a restricted diet, which makes the journey all the easier.  It seems more and more people are being touched by these issues.

I worked in hotels in my early working life and I honestly have no recollection of having to cater for a single person with a special diet, other than the odd vegetarian.  How the world has changed. 

I guess that if there was ever a good time to be a coeliac, it is now.

 

 

Isn't that the truth?  Even in the ten years since I've gone gluten free things have changed drastically.

[Faberferrum]

Again, thanks to each of you for sharing your thoughts and experiences.  I appreciate it.  I will try and keep a more hopeful outlook on the issue.  I haven't made up my mind yet, but it's good to hear some more positive perspectives.

One side question that has occurred to me:  Do most celiacs feel symptom free as long as they eat gluten free?  I have regular gas/bloating and discomfort, even though I stick to the diet.  Some brain fog too sometimes.  I have to watch my sugar intake and eat regular meals.  So I guess I feel like celiac affects me in a negative way almost daily, despite following the diet religiously.  It hasn't been a 'switch to gluten free and carry on with your life' experience. Should I be looking for something else wrong with me?

[trents]

22 minutes ago, Faberferrum said:

Again, thanks to each of you for sharing your thoughts and experiences.  I appreciate it.  I will try and keep a more hopeful outlook on the issue.  I haven't made up my mind yet, but it's good to hear some more positive perspectives.

One side question that has occurred to me:  Do most celiacs feel symptom free as long as they eat gluten free?  I have regular gas/bloating and discomfort, even though I stick to the diet.  Some brain fog too sometimes.  I have to watch my sugar intake and eat regular meals.  So I guess I feel like celiac affects me in a negative way almost daily, despite following the diet religiously.  It hasn't been a 'switch to gluten free and carry on with your life' experience. Should I be looking for something else wrong with me?

Most celiacs develop intolerances to other, non-gluten, foods over time. It can be almost anything but dairy seems to be the most common culprit. Developing an intolerance to eggs is not uncommon. About 10% of celiacs react to oat protein the same way they do wheat/barely/rye.

[AlwaysLearning]

There are a lot of hidden sources of gluten out there. Though I'm sure you're already doing wonderfully at being gluten free, here are some areas to double check.

Did you go through all of your toiletries to get rid of gluten shampoos, conditioners soaps, etc? Cosmetics too, lip balm, lotions. Your organic grocery store should have options that say gluten-free on the label or shop online.

There are also plastics that contain gluten to make them more flexible. I have heard horror stories about dental appliances like bite plates and retainers. I think I got glutened from a pair of reading glasses a few years ago.

When you went gluten free, did you replace cutting boards, pots and pans with non-stick coatings, mesh sieves, everything plastic (anything that is porous or scratched that can trap gluten)? Your toaster? Did you scrub the barbecue grill down to bare metal? Do you share a kitchen with people who are not gluten free?

If you are choosing gluten free foods based on ingredients, I recommend that you stop. Even if none of the ingredients "should" contain gluten, the facility in which they are processed could be contaminated. Same goes for alcohols that "should" be gluten free because they are distilled. Play it safe for a while and only buy things labeled as gluten free to see if that helps. If it does help, only add back in some of those other products one at a time and do more-extensive research on the first. Learn to look for and avoid ingredients that are danger zones, such as "natural flavor". 

Are you  being sabotaged by your grocery store or food manufacturers? I have accidentally bought dairy free items instead of gluten free items because the manufacturer used the same color of green across the top to label them "free" for both otherwise identically-packaged products. And my grocery store frequently slips gluten products onto the shelves that are supposed to be the gluten-free section. Grrrrrr.

Is your spouse as well informed about the areas for error as you are? If not, I think there are a few "newbie" posts here on the forum that should cover the basics for what to be careful about.

Is there anything else in your environment that could be causing your ongoing symptoms? Do you work around chemicals, have mold or mildew issues in your home, etc.?

You can also go see a doctor and get tested for vitamin deficiencies. You might just have something a little out of whack that could easily be fixed with either diet or supplements. Or a deficiency could be a clue to help figure out if something else is going on. Food/symptom diaries are also a good tool to discover additional food intolerances/reactions or hidden sources of gluten.

Anyway, I know it is tough. I just accidentally glutened myself last week because of the gluten free section in the grocery store containing gluten items ... and just managed to get rid of the hemorrhoids. Yes, feel free to laugh at me. It totally sucks that we have to work so hard to be diligent. And even if it is someone else's mistake, we still blame ourselves for not catching it.

Consider it all practice for when you have those kids of your own and the little terrors end up accidentally glutening you every time you turn around. 

[ShellWhele]

3 hours ago, AlwaysLearning said:

There are a lot of hidden sources of gluten out there. Though I'm sure you're already doing wonderfully at being gluten free, here are some areas to double check.

Did you go through all of your toiletries to get rid of gluten shampoos, conditioners soaps, etc? Cosmetics too, lip balm, lotions. Your organic grocery store should have options that say gluten-free on the label or shop online.

There are also plastics that contain gluten to make them more flexible. I have heard horror stories about dental appliances like bite plates and retainers. I think I got glutened from a pair of reading glasses a few years ago.

When you went gluten free, did you replace cutting boards, pots and pans with non-stick coatings, mesh sieves, everything plastic (anything that is porous or scratched that can trap gluten)? Your toaster? Did you scrub the barbecue grill down to bare metal? Do you share a kitchen with people who are not gluten free?

If you are choosing gluten free foods based on ingredients, I recommend that you stop. Even if none of the ingredients "should" contain gluten, the facility in which they are processed could be contaminated. Same goes for alcohols that "should" be gluten free because they are distilled. Play it safe for a while and only buy things labeled as gluten free to see if that helps. If it does help, only add back in some of those other products one at a time and do more-extensive research on the first. Learn to look for and avoid ingredients that are danger zones, such as "natural flavor". 

Are you  being sabotaged by your grocery store or food manufacturers? I have accidentally bought dairy free items instead of gluten free items because the manufacturer used the same color of green across the top to label them "free" for both otherwise identically-packaged products. And my grocery store frequently slips gluten products onto the shelves that are supposed to be the gluten-free section. Grrrrrr.

Is your spouse as well informed about the areas for error as you are? If not, I think there are a few "newbie" posts here on the forum that should cover the basics for what to be careful about.

Is there anything else in your environment that could be causing your ongoing symptoms? Do you work around chemicals, have mold or mildew issues in your home, etc.?

You can also go see a doctor and get tested for vitamin deficiencies. You might just have something a little out of whack that could easily be fixed with either diet or supplements. Or a deficiency could be a clue to help figure out if something else is going on. Food/symptom diaries are also a good tool to discover additional food intolerances/reactions or hidden sources of gluten.

Anyway, I know it is tough. I just accidentally glutened myself last week because of the gluten free section in the grocery store containing gluten items ... and just managed to get rid of the hemorrhoids. Yes, feel free to laugh at me. It totally sucks that we have to work so hard to be diligent. And even if it is someone else's mistake, we still blame ourselves for not catching it.

Consider it all practice for when you have those kids of your own and the little terrors end up accidentally glutening you every time you turn around. 

Such an awesome source of info!!! I'm so glad you shared this. My kids are grown, and I have been gluten-free for awhile know, but still managed to glutamate myself last week, and I hadn't even thought to read the labels on my shampoo and cosmetics.  Thanks