Is There Anything I Can Do To Not Trigger Celiac In Newborn?

[3groovygirls]

Hi everyone!

I'm currently 9 weeks pregnant. I actually don't know if I have Celiacs or not (long story, but stupid Dr.'s don't want to test me they claim it's not genetic and I have no need since I have no symptoms. Keep in mind I'm 5'9" and 115lbs soaking wet! But I don't have diarrhea.... LOL!) but my daughter does. She is also DQ2 positive, so obviously it's genetic. My husband and I are pretty darn sure it's from my side of the family and not his (we fit the background, he doesn't, my brother and mother are miraculous "better" after going gluten-free, after my daughter did and they had the same symptoms, etc).

So anyway, my question is, I have 3 kids, 2 are seemingly fine (didn't have it on the standard blood test but we didn't have the genetic test done for them yet) but 1 child has had Celiac since birth. So something triggered it. Was it something I ate? Her birth?

Should I be eating gluten free? Would that make her LESS likely to be born with active Celiac even if she has the gene? Just curious! I wonder b/c my 3rd daughter, when I was pg with her it was when everything started going Whole Grain. I ate TONS of whole wheat, everything was whole grain, etc. With my other 2 I ate whatever the heck I wanted and pretty badly - definetly not overloading on whole wheat everything! I always wonder if that did it?

Thanks for any insight!

Linda

[lizard00]

I'm 32 weeks and have been pondering that same question since I found out I was pregnant.

The difference is that I'm already gluten free, as it seems my son, who is 4, triggered my celiac in the first place. From what I've researched, babies should be introduced to gluten around 6 months.(American Pediatric Association) However, this is currently being studied by Dr Fasano, to see if waiting longer in children that are at risk for celiac disease helps to prevent it.

Open Original Shared Link

My son seems to be fine; is tall for his age, very healthy, etc. I'm probably going to do the same with this one as I did with him... solids around 5/6 months, gradually adding in things. He didn't have gluten until 6 mos at least, not because of celiac (wasn't a thought in my mind), but because of how we added food.

I hope that helps a little

Oh, and celiac is a very common genetic disorder. What is your doctor talking about?????

[3groovygirls]

That's interesting! I'm definetly going to hold off on solids - I do that for all my kids anyway, till 6 months. I tend not to have big eaters regardless though!

What's funny/interesting about my DD with Celiac is, she reacted to it through my breastmilk. She was a projectile vomiter and I did the elimination diet. Nothing seemed to work. Finally one day my mom said "You know why not try cutting out wheat, I hear some babies are sensitive to it. I did that and BOOM she stopped vomiting. But if I'd have one piece of toast, one slice of pizza she's SCREAM for hours on end and projectile vomit. She was so skinny and got FTT. Needless to say she went on formula at 3 months old and she thrived. Then when we introduced solids she became like she was as a newborn. Losing weight, screaming, vomiting, etc. Anyway, my point being, delaying solids wouldn't have worked with her b/c she is so sensitive just getting it through my breastmilk tore her up!

Honestly, I think I might just bottle feed this if I see ANY signs of projectile vomiting again!

[wannaBAmama]

There is a recent article, I think in Scientific American magazine which is about celiac disease. It said that it is doing a trial to try to prevent celiac in people with the genetic marker and early evidence has shown that having an infant avoid all gluten for the first year appears to prevent activation of the disease later on- again it's early evidence - not enough to say for sure it works. I'm assuming this means breastmilk as well. I'm already gluten-free and am planning to stay that way (I am self-diagnosed celiac - my doc would not diagnose me because "it's a hard diet to follow" (?)) and I do not plan on having her eat any gluten her first year. After that we'll figure things out with her pediatrician.

[Amyleigh0007]

My two year old has never had gluten. She does carry a gluten sensitivity gene and since I have the Celiac gene she has a 50% chance of having that too. That is enough to scare me. She is a very healthy, happy toddler and I see no reason to add gluten to her diet. She is doing just fine without it. She loves salad, fruit and veggies and is not picky at all. If she doesn't eat gluten she can't develop Celiac disease!

[elle's mom]

My two year old has never had gluten. She does carry a gluten sensitivity gene and since I have the Celiac gene she has a 50% chance of having that too. That is enough to scare me. She is a very healthy, happy toddler and I see no reason to add gluten to her diet. She is doing just fine without it. She loves salad, fruit and veggies and is not picky at all. If she doesn't eat gluten she can't develop Celiac disease!

I agree with Amy! If it is in the family and there's even a CHANCE the child could develop celiac down the road, I feel it my duty as a parent to prevent that as much as I possibly can. The diet is scary, and hard at first, but if you're already on it or someone in your house, I would not give the child gluten. I feel it is way easier on a child to be reared without gluten, than for a 33 yo like myself to give it up after a lifetime with it! Once you're used to the diet and the social ramifications of it, it's really no bid deal! Just think of it as preventing eminant (sp?) cancer......why wouldn't you? Up the road, if your child wants the genetic test, or you want them to have it, them you could do that.

[sandy-b]

Just read about how if you have celiac, you should stay on the celiac diet and breastfeed your child, and start introducing gluten - see this article: Open Original Shared Link

[elle's mom]

Just read about how if you have celiac, you should stay on the celiac diet and breastfeed your child, and start introducing gluten - see this article: Open Original Shared Link

This is an interesting article. There are lots of percentages about the likeliness of a child developing celiac depending on different variables regarding breastfeeding & other feeding patterns, and how early or late gluten was introduced.

My point is that there is 100% chance that your child will NEVER develop celiac disease if you NEVER introduce gluten.

I breastfed my celiac dd for 12 months (gluten containing breastmilk-it DOES get through!), and held off on solids until after she was 6 months old. At that time I had never even heard of the word gluten. She developed celiac. Although she wasn't diagnosed until 2 1/2, I guarantee that she was reacting to gluten from night one in the hospital. She was labeled as "colicky" and when the "colic" didn't subside we were told by the ped that just because she was not like our #1 dd (an angel!), that did not mean something was wrong with her (actually made me feel guilty for wondering) and that this was probably just her "temperament". The ped even joked about her being "stubborn" when she wouldn't eat as an infant & had bouts of constapation when we were trying to potty train her. It is really sad, that she now at 4 still suffers from behvioral issues, I believe all stemming from her first two horrific years of life. She has really good days too, so I am hoping the bad ones will become less and less, and the good ones eventually out-number the bad ones. The effects of gluten makes life really hard for the whole family. This is something, trust me, that you NEVER want to go through. Don't even take the chance. The diet is NOTHING compared to the ramifications of gluten on a potentially sensitive child. I wish I had known about our genes ahead of time for her.

PS I am a HUGE breastfeeding advocate, just make it gluten free milk

[3groovygirls]

Thanks for the articles and information ladies!

Jackie - I TOTALLY agree with you about your daughter! You basically just described Violet's first year of life. She was MISERBLE. Labeled "colicy". Then they said she had reflux and we gave her so darn much Zantac. She is still *different* than my other kids. She's STILL clingier, she's STILL more attention needing and I really do think it was from being so miserable her first year of life.

I will definetly BF'd her gluten free for at least the first few months, but I'm not making any garuntees to go 2+ years like I did with my first 2 daughters. I'd say (since I'm not Celiac, that I know of) I'm gluten light. I do mainly eat gluten free but sometimes (b/c I have no reactions) I do get lazy and sometimes grab a sandwich or "real" cereal.....

[lovegrov]

"My point is that there is 100% chance that your child will NEVER develop celiac disease if you NEVER introduce gluten."

Yes, but there's also a 100 percent chance your child will eventually rebel and try pizza or cake or a Big Mac or whatever.

I'd never consider forcing a child to be gluten-free just because there's a chance he or she might develop celiac. The odds the child not NOT develop celiac are even higher. My youngest is 16 and neither one of mine had ever shown any signs.

richard

[lizard00]

Yes, but there's also a 100 percent chance your child will eventually rebel and try pizza or cake or a Big Mac or whatever.

I'd never consider forcing a child to be gluten-free just because there's a chance he or she might develop celiac. The odds the child not NOT develop celiac are even higher.

richard

I couldn't agree more. Being the celiac in my house, I do know what gluten can do. I lived it. My husband knows what gluten can do. We don't wish it on our children, but I can't imagine trying to force a restricitve diet on my child with no medical/dietary basis. But, you can believe that at the first sign of anything, I would have my kid(s) go gluten-free in a second. It's a sticky situation and a tough decision to make.

[elle's mom]

I couldn't agree more. Being the celiac in my house, I do know what gluten can do. I lived it. My husband knows what gluten can do. We don't wish it on our children, but I can't imagine trying to force a restricitve diet on my child with no medical/dietary basis. But, you can believe that at the first sign of anything, I would have my kid(s) go gluten-free in a second. It's a sticky situation and a tough decision to make.

I do agree with what you two are saying about not forcing the diet on a teen-ager, I mean you probably couldn't anyway. I was more referring to when they are babies &/or elementary age children. I think it is our jobs as parents to make decisions for them until they are old enough to make informed decisions themselves. It just makes me nervous to wait for "the first sign" when there seem to be many that suffer in silence, or are asymptomatic. I wonder if a teenager would necessarily want to tell mom & dad or dr. that they have d or c.

[Ange7894]

"My point is that there is 100% chance that your child will NEVER develop celiac disease if you NEVER introduce gluten."

Yes, but there's also a 100 percent chance your child will eventually rebel and try pizza or cake or a Big Mac or whatever.

I'd never consider forcing a child to be gluten-free just because there's a chance he or she might develop celiac. The odds the child not NOT develop celiac are even higher. My youngest is 16 and neither one of mine had ever shown any signs.

richard

I completely disagree that there is a 100% chance the child would rebel. Why would they rebel if they never feel deprived? I've been gluten free for almost 4 years and honestly have found so many awesome gluten-free versions of foods I never thought I could eat again that most of the time the diet doesn't bother me. If the child is gluten-free from birth, they know nothing else. They'd be more likely to rebel or cheat if they ate gluten for a few years and then had to give it up. Sure maybe for some kids the curiosity would get the better of them, but you can't make that claim about every single child in the world.

[Ange7894]

This is a huge question I'm debating right now as I'm currently almost 35 weeks pregnant. I know how hard it was for me when I was first diagnosed, and I still have moments where I get so mad I have this awful disease. Usually the diet doesn't bother me as I've found a lot of great gluten-free versions of things and most of the time I don't feel like I'm missing anything. I usually get the most upset when I either go to a party and can't join in on all the food there, or if I'm starving and want more than anything to grab some fast food.

Those first few months (at 27 years old) were the hardest of my life. Not only was it difficult to learn the diet, but it was extremely difficult mentally and emotionally. I am desperate to protect my daughter from having to deal with that... at any age. I'm especially concerned she could develop it young where she wouldn't fully understand what was happening and why she suddenly wouldn't be able to eat her favorite things. Plus the physical symptoms of the disease are so horrible that I would NEVER want her to go through them. I'm kind of liking one idea someone mentioned in this thread about having the child be gluten free until they're much older and then give them the option of trying gluten. At least by that point they would understand it, and be able to make an informed decision. Plus, if they have a reaction, they could switch back to gluten-free without feeling that overwhelming sense of loss and deprivation because they would already know the diet.

Because I've been gluten-free for almost 4 years, I feel pretty well educated on what gluten-free options are out there now, and more restaurants and manufacturers are coming out with gluten-free versions of things all the time. I don't feel starting a child gluten-free from birth as a negative thing. I'm confident if I were to go this route, she would never be deprived of all the yummy treats her friends would have; she would just have a different version. I also think that since we'd be sharing this diet, it would be easier for her to accept and grasp. I would think a child having to be the only one in the family needing to change their diet would be very isolating and would make the transition much more difficult. I know, because isolation is a very common feeling when you're surrounded by family and friends who can eat whatever they want, and you have to sit there and just watch.

[tarnalberry]

I completely disagree that there is a 100% chance the child would rebel. Why would they rebel if they never feel deprived? I've been gluten free for almost 4 years and honestly have found so many awesome gluten-free versions of foods I never thought I could eat again that most of the time the diet doesn't bother me. If the child is gluten-free from birth, they know nothing else. They'd be more likely to rebel or cheat if they ate gluten for a few years and then had to give it up. Sure maybe for some kids the curiosity would get the better of them, but you can't make that claim about every single child in the world.

They'll rebel because they want to do what "they're not supposed to". It's nothing to do with feeling deprived or not, it's just the lure of the forbidden fruit. Sure, it probably won't happen until the tween or teen years, and yeah, maybe not 100% chance, but 99% (no, no, no particular study on this one, but I'm sure you can find studies on other forms of teen rebellion). Rebellion has nothing to do with deprivation - it has to do with kids (at different ages, there's a "rebellion" phase at two years old too!) trying to find out how much control and power they have over their own environment, how much power they have to make their own decisions. They will find something to rebel about, regardless of how not-deprived they feel.)

The thing is, you can have your kid be gluten free from birth, but their world will not be gluten free. They will see their friends have tasty looking, and tasty smelling, things that have gluten. They'll try them, and as they get older, they'll "rationalize" it by saying you don't know they have to eat gluten free. Again, every single one? No. But the odds are FAR more likely than not.

My current plan is to leave gluten out of the picture for at least a year. While studies so far suggest that the optimum time frame to introduce wheat is between 4 and 7 months, I don't plan on introducing solids that early, and I plan on introducing things slowly. I'd like the child to be able to communicate, in some fashion, how they feel in a manner other than crying or screaming. (I'm going to try to teach baby sign language, so perhaps that will let us communicate earlier, perhaps not. We'll see. Maybe it'll be around two years before I introduce it. I think it will really depend on the kid.)

But I also want to introduce it at a time when things are still *mostly* in my control. Waiting until after the kid has started school, or is regularly at friends' houses makes it nearly impossible to determine, through dietary testing, if gluten is really the problem - since the environments are completely uncontrolled. If I'm starting gluten free, and then try adding it later, I doubt there will ever be enough gluten in her body to register reliably on a test, unless she decides (along with us) to eat gluten long enough for a test. So, I anticipate dietary testing is going to be our main evidence for a while.

[Ange7894]

Yes, I'm aware that children will test their parents and their environment at all stages of their development. But if a child chooses to rebel in this situation there is not even a 99% guarantee she'd choose eating gluten as her outlet. I'm sure some kids might, but you can't claim that it WOULD happen in every situation. I'm aware of how "un-gluten free" the world is. I've lived with this disease for 4 years, so believe me I know how easy it is to get contaminated. I even get contaminated in my own home sometimes because my husband doesn't eat gluten free. I know I won't be able to protect her from everything, and a big fear of mine is when she gets to be school age and is around friends at school where she can either be contaminated or make the wrong choices. My feeling though is if she's brought up in a house where she's constantly educated on why she has to eat this way, all I can do is hope this information will help her make the right choices. Isn't that all we can do as parents; teach them what we can and hope they make the right choices? Regardless of what the lesson is? If a child is deathly allergic to peanuts, and they're aware of this fact, do you really think that kid will choose a PB&J sandwich as a way to rebel? My logic is the same with gluten.

I've decided that sometime within the first year of her life once she's born, I'm going to get her genetically tested. That will be the only way to know for sure. I think if I try and make this decision any other way I'll go crazy wondering if I'm making the right choice. Plus the option of just introducing gluten (regardless of when it's introduced) and waiting to see if she has a reaction is just absurd to me. I wouldn't wish a Celiac attack on anyone, so I certainly wouldn't want my child to go through one.

[nmlove]

This such a touchy subject. Our daughter's 7 months. Her two older brothers have celiac. We enrolled her in Dr. Fasano's research study. Because of her age, she's in an observational group. But they did genetic testing (waiting for results) and they take blood/stool samples every 6 month. We're keeping her gluten-free until a year but then we'll decide where to go from there. So they'll notice a rise in ttg levels if we give her gluten and she reacts. Past 3 years, we'll probably have her tested annually (assuming she's genetically predisposed). Plus, I now know what celiac is, the wide array of symptoms, etc. so any changes and you can be sure gluten-free is our first thought. Good luck with your baby! Beautiful times.

Oh, also, both my boys were night and day as infants. I exclusively breastfed. Both gained super fast (one 20 lbs by 4 1/2 months, the other by 3 1/2 months). Both ate a lot (and a lot of solids eventually). But the first was my colicky, don't put me down baby and the other was as content as could be, even with being a "I don't need much sleep" kind of baby.

[tarnalberry]

I've decided that sometime within the first year of her life once she's born, I'm going to get her genetically tested. That will be the only way to know for sure. I think if I try and make this decision any other way I'll go crazy wondering if I'm making the right choice. Plus the option of just introducing gluten (regardless of when it's introduced) and waiting to see if she has a reaction is just absurd to me. I wouldn't wish a Celiac attack on anyone, so I certainly wouldn't want my child to go through one.

While I don't agree with the reasoning behind your choice, the only thing that really matters is that YOU are COMFORTABLE with your choice. Anything else is going to feel forced - to both you and your daughter. Be confident that you are making the best decision for YOUR FAMILY AT THIS TIME; it's all we can do.

[lizard00]

Be confident that you are making the best decision for YOUR FAMILY AT THIS TIME; it's all we can do.

I think that this is very important. Our daughter is now just about 5 months old, and our ped basically told us that if we wanted to start her on solids, we could. But no rush. He's also totally in agreement with holding off on gluten if we want. We have really given this some thought, as we KNOW that both of them are at risk, to the degree, I'm not sure, but I know that they have at least one copy of the DQ2 gene. At this point, we've decided to hold off until she's a year old before we introduce gluten. Which isn't really that hard. While she won't be able to specifically say, hey, my stomach hurts or whatever, they can communicate much better even at that age. And we'll do it as a new food, all by itself, so there is no doubt as to whether she reacts to it or not.

We are comfortable with that, and for now, it works for us. But to ANY parent facing this dilemma, make your own informed decision and be comfortable with it.

[Ange7894]

I agree. I don't think there is a right or wrong answer to this topic. I think the parents and family need to do what they feel is best for their child or children. Everyone is different, and I believe parents and kids will all react differently to this situation. I'm the kind of person that doesn't just go on faith that a doctor knows everything and never questions anything. if I did, I never would have been diagnosed with Celiac in the first place. The first doc I went to dismissed it as IBS and basically told me to eat more fiber and drink more water. I knew there was more going on, so I persisted and got a second opinion. Sure enough, the blood test confirmed the diagnosis as did the biopsy, and I was relieved that there was an actual reason for my symptoms. Just because my pediatrician said it wasn't necessary to make her gluten-free from birth, doesn't mean I need to follow that. I've done some reading on the genetic testing, and it's not this horribly invasive procedure some might think it is. It's a cheek swab. It's not cheap mind you, but it's worth the cost if I can know for sure if she carries the gene. I'm confident that no matter the results, I can then make a better informed decision. Whatever happens as she gets older, I'd have to cross those bridges as I get to them.