Passing Celiac On To Children

[jaimek]

Hello! I thought some of you might benefit from the email that I recently received from my Gastroenterlogist. He specializes in Celiac, and is very familiar with the disease (especially because his wife has it). I wrote him an email not too long ago, asking the chances of me passing on Celiac to my unborn child. Here is his answer:

You should not be at any increased risk, nor should your child, if your disease is well controlled. Make sure you take folic acid supplementation. Your child has a 5-10% chance of having celiac sprue. Recent evidence suggests that breast feeding may lower the risk, so consider it. Reports vary as to the best timing of introducing gluten into the baby's diet. I recommend not before 6 months, and not later than 9 months. Also, introduce it very gradually. If further issues, I would be happy to see you.

Hope this helps other people too. I know it helped me!!!!

[mmaccartney]

I don't mean to burst your bubble, but I think the percentage is a bit off.

Celiac is a genetic disease. Your child gets one gene from you and one gene from your partner. If you have Celiac, and you have one celiac gene then your child has a 50% chance of inheriting the gene, and hence predisposition to Celiac. If you have 2 celiac genes, then your child(ren) have a 100% chance of inheriting the gene, and hence predisposition to Celiac.

Note that having the genes does not indicate active celiac. It can remain inactive until triggered. This is how my children are currently. Both got the HLA-DQ2 gene from me but neither has active celiac...yet.

[Guest nini]

yeah I've heard these studies about breastfeeding and Celiac and I think that is bunk. I breastfed my daughter and she still has it...

Also I think those percentages are flawed too. It's at least 30% in first degree relatives of a dx'ed Celiac and in children of a dx'ed celiac it's even higher.

It's not so bad though, it's a really healthy diet and doesn't have to be difficult at all. My daughter eats so much healthier than the majority of her friends.

[Ursa Major]

I disagree with giving the baby gluten no later than nine months, but as early as six months. Where did he get those numbers? That sounds like a terrible idea to me. Two years or later would be more reasonable as far as I am concerned (but no earlier than 12 months).

Four out of my five children didn't even get solids until they were eight months old, and didn't eat bread (or anything with gluten) until about a year old, and I didn't even know about celiac disease then.

[jerseyangel]

yeah I've heard these studies about breastfeeding and Celiac and I think that is bunk. I breastfed my daughter and she still has it...

Also I think those percentages are flawed too. It's at least 30% in first degree relatives of a dx'ed Celiac and in children of a dx'ed celiac it's even higher.

It's not so bad though, it's a really healthy diet and doesn't have to be difficult at all. My daughter eats so much healthier than the majority of her friends.

I agree--I was the only child my mom breastfed, and I'm the only one with Celiac. (out of 3 girls). As for the percentages, I believe they are low, also. According to the U of Chicago, the incidence of Celiac in a first degree relative is 1 in 22.

[jaimek]

Wow, I was just trying to help and everyone jumped down my throat! Are any of you guys doctors? or specialize and studied Celiac? You can take it or leave it, but my doctor is extremely knowledgable of the disease. He was stating those percentages as far as my situation is concerned. I have Celiac, but my intestines are completely healed (as I have been gluten-free for 2 years). My husband does not have Celiac at all, nor does he carry the gene. So, I am going to go with his advice. I think it is great advice, and like I said, he knows what he is talking about as he specializes in the disease.

[tarnalberry]

Whoa guys! His advice comes on the heals of the most recent research on the subject! Go take a look at the studies before second guessing their results. :-) They could be flawed studies, but in these three cases (chance of first degree relative *developing celiac disease*, breastfeeding reducing the risk of developing celiac disease, and introducing wheat after 6 months *and before 9 months*), they're actually fairly good studies. (pubmed has the abstracts on these studies, if you want to look them up.)

[Katie O'Rourke]

Hi. Just wanted to say, that whether your disease is under control or not will not have any affect on whether your child inherits it, and I'm afriad I do think the percentage is slightly higher than the doctor stated. Me and my two sisters were all breastfed (i'm the oldest) yet I was the only one who got coeliac disease - I dotn know if either of my sisters have the gene, but neither have the actual disease. My dad is also coeliac, whereas his brother is ok, and my grandma was one of three and she also had it. So I'd actually guess about 30-45% chance really. And no I'm not a doctor, but I do have a degree in biomedicine, and I'm just going by my family really. Sorry if you didnt feel people were being supportive - I think they were more concerned about the advice the doctor was giving you than arguing with what you were saying.

Hope everything works out well for you anyway, good luck

[lovegrov]

I'm having a hard time with this thread. We complain because doctors and other medical people don't seem to be up on all the latest celiac info. Then we see a note from a doctor who obviously is quite up to date on the latest and what's our reaction? We argue and dispute what he says!!!!

The doctor did not say the chance of getting the gene was 5 to 10 percent. He said the chance of getting CELIAC itself is 5-10 percent. As you know, many, many people carry the gene but never develop celiac.

As for the 1 in 22 number for a first-degree relative -- uhh, hey, that's about 5 percent!!!! (actually a little below 5), so the doctor would have been overstating the chances, not understating.

According to the most recent research, breastfeeding MAY lower the chance, but it's definitely not a certainty. Notice the doctor did NOT say it eliminated the possibility, so of course some people who were breastfed will still get celiac. The fact that one of you or one of your children was breastfed and still got celiac proves nothing at all. And whether it turns out to be true or not, breastfeeding is extremely beneficial in other ways, so it certainly isn't going to do any damage.

Finally, the most recent research does indeed suggest that the best time to introduce gluten MIGHT be at 6-9 months. MIGHT be. You might personally disagree and that's fine, but that is indeed what the research says, at least for now. I wouldn't be stunned to see that change sometime.

So, at least from what I know, it appears this doctor actually knows what all the current research is and he's passing that along to patients. Seems to me he should be congratulated.

richard

[Ursa Major]

Sorry, Jaime, I didn't mean to make you feel bad, I apologize.

But really, it isn't even recommended to start a baby on solids before seven to eight months, why start with something that has been shown to cause a LOT of allergies, even if you don't consider celiac disease? Wheat must be one of the most allergenic foods in the world.

Unfortunately, many specialists aren't too knowledgable in their own fields. So, just because your doctor specializes in celiac disease doesn't necessarily mean he is right.

We weren't trying to attack you. But all of us have had terrible experiences with doctors, and as a result don't trust them a whole lot.

[tarnalberry]

Sorry, Jaime, I didn't mean to make you feel bad, I apologize.

But really, it isn't even recommended to start a baby on solids before seven to eight months, why start with something that has been shown to cause a LOT of allergies, even if you don't consider celiac disease? Wheat must be one of the most allergenic foods in the world.

Unfortunately, many specialists aren't too knowledgable in their own fields. So, just because your doctor specializes in celiac disease doesn't necessarily mean he is right.

We weren't trying to attack you. But all of us have had terrible experiences with doctors, and as a result don't trust them a whole lot.

Why start something that's been shown to cause a lot of allergies? According to the study, because if you introduce it before nine months, in risk-matched groups, the children have a lower risk of developing celiac disease by five years of age than if you wait until after nine months. That's what the research said. Yep, more followup research would be lovely, but that's what we have for a start.

[jaimek]

Thank you Richard and Tarnalberry. I happen to agree with both of you. I also noticed that some of the others who posted have not been diagnosed for too long, so they may be behind in the research. I know that my doctor knows what he is talking about, and was of great help to me. I was hoping others could benefit from his expertise, and I appreciate you both backing me up on this!

[jerseyangel]

Jaimek,

I apologize if I in any way hurt your feelings, or caused you to think I was attacking you or your doctor. That was not my intent. I was simply joining into a conversation, and adding my experience. Again, I am very sorry.

[Fiddle-Faddle]

Hi, Jaimek, thanks for posting the info. I totally agree with the breastfeeding thing (though obviously it's not a guarantee)--but I do question his advice on starting gluten no later than 9 months. Other potential allergens like citrus and strawberries are held off until at least a year (and families with history of food allergies are told to wait even longer). Why start gluten at 9 months? Did he have a reason for that? (I'm not jumping down youyr throat, I'm trying to find out why he would start it at 9 months.)

[happygirl]

here is the celiac.com link that has a bunch of the research on celiac and breastfeeding, as well as studies about the incidence of Celiac in families.

https://www.celiac.com/st_main.html?p_catid=9

[mmaccartney]

Wow, I was just trying to help and everyone jumped down my throat! Are any of you guys doctors? or specialize and studied Celiac? You can take it or leave it, but my doctor is extremely knowledgable of the disease. He was stating those percentages as far as my situation is concerned. I have Celiac, but my intestines are completely healed (as I have been gluten-free for 2 years). My husband does not have Celiac at all, nor does he carry the gene. So, I am going to go with his advice. I think it is great advice, and like I said, he knows what he is talking about as he specializes in the disease.

Sorry if my comment offended you, it was certainly not meant to; nor was it meant to be accusatory!! :-)

I was merely responding to the indication that:

Your child has a 5-10% chance of having celiac sprue.

Without any other information about why it was only 5%-10%, I wanted to point out to all the people reading the post that genetically the percentages are higher, more like 50% or 100% depending on your genetics. Predisposition does not mean that you will have the disease in an active state. People need to know the facts; think about a person newly diagnosed that has children (without symptoms), they could read this and think wow only a 5-10% chance cool, I don't think I'll have them tested unless they show symptoms. However if they know that genetic predisposition yields a 50% or 100% chance, they would probably think differently and pursue testing of their children.

[Fiddle-Faddle]

here is the celiac.com link that has a bunch of the research on celiac and breastfeeding, as well as studies about the incidence of Celiac in families.

https://www.celiac.com/st_main.html?p_catid=9

Thanks, Laura! The research on breastfeeding/celiac is fascinating. I wonder why they are not analyzing breastmilk (especially from mothers of children with celiac) to see what's in it that makes the difference. They already know that mothers of premies produce a totally different milk than mothers of full-term babies (and the premie moms produce EXACTLY what a premie needs, surprise, suprise). Seems to me, they'd learn a lot about the human immune system in general if they'd only look at the source (breastmilk, colostrum, etc.).

I swear, they'll find the cure for cancer one day--in breast milk! If only we could convince them to look at it instead of trying to make pills...

[Girl Ninja]

I'm curious... Is there an increase in risk after 9 months of age? My son was exclusively breast fed for the first year.

[tarnalberry]

I'm curious... Is there an increase in risk after 9 months of age? My son was exclusively breast fed for the first year.

Yes. As I noted, the study showed that, compared to control groups, introducing wheat after six months and before nine months produced the lowest risk. It was a small change, so don't worry that you're going to cause him to develop celiac because you exclusively BF'ed. These are small effects on small effects, and changes in one thing offset changes in another. Quite frankly, if I have kids, I'm more inclined to go for the other benefits of exclusively breastfeeding for the first year, and take the small increased risk (according to studies) from not introducing wheat prior to nine months. There's a lot of other things in the medical world than celiac disease.

[CarlaB]

I would imagine most kids in the study who did not receive gluten at 6-9 months weren't exclusively breastfed for a year as that is pretty rare to find. It would be interesting if the authors of the study would compare exclusively breastfed kids to the group that was introduced to gluten.

I exclusively breastfed mine until they would sit on my lap and eat off my plate, which was at about a year.

[Guest nini]

sorry, wasn't trying to offend. was only trying to present my experience...

I am well aware of those being the most current studies, however, I am within my rights to find fault with the methodology of the studies and think that since my real life experience seriously contrasts with the current studies, that maybe just maybe I don't have to agree with the current studies.

[tiffjake]

Sorry if my comment offended you, it was certainly not meant to; nor was it meant to be accusatory!! :-)

I was merely responding to the indication that:

Without any other information about why it was only 5%-10%, I wanted to point out to all the people reading the post that genetically the percentages are higher, more like 50% or 100% depending on your genetics. Predisposition does not mean that you will have the disease in an active state. People need to know the facts; think about a person newly diagnosed that has children (without symptoms), they could read this and think wow only a 5-10% chance cool, I don't think I'll have them tested unless they show symptoms. However if they know that genetic predisposition yields a 50% or 100% chance, they would probably think differently and pursue testing of their children.

I agree with Richard and Tiffany, that this doc is right on the mark. About the genetics, you do NOT get your parents genes copy for copy. Think about this; I have green eyes. My mom had blue eyes, my dad brown. My sister has blue eyes. My Paternal-grandmother had blue, and grandfather had brown. My maternal grandfather had brown and my maternal grandmother had GREEN! Not my mom, or my dad. This is one example! You get a combination of your grandparent's genes (which your parents also have, but they CARRY many more traits than they DEVELOP) so you can have celiac three generations back in your family, but no one in your living family have the disease!

The doc's numbers are right on track. You, and in this case, her child, would be at a higher risk, because the gene will be passed along, but that DOES NOT mean that the child will develop the disease. That doesn’t matter how many copies of the gene that the child inherits.

Just food for thought.

[chrissy]

all three of my girls with celiac were nursed for 16 months-------sure wish it would have protected them!!!

[Fiddle-Faddle]

all three of my girls with celiac were nursed for 16 months-------sure wish it would have protected them!!!

Who knows--maybe it did. Maybe without your having nursed them, they would have been part of some other, more frightening statistic linked with celiac, such as twisted bowel, autism, or even SIDS.

[lovegrov]

My main reaction was that many of us get so upset because doctors don't seem to be up on the latest celiac information and don't know how to diagnose people. I'd have been much better off if my doctor had been up on it. This guy, however, IS up on the best info we have at this point and passes it to his patients. He seems top be exactly the type of doctor we want out there. Yet the IMMEDIATE reaction (go back and look at the first posts) here is to jump on it and criticize the research. It's absolutely true that the research might turn out to be wrong in the future, but this is the best that's out there now and this doctor is actually up to date on it.

richard