Celiac With A Pregnant Non Celiac Wife

[Matt S]

Hello all,

I was diagnosed the summer I graduated high school. It's been eight years now and things are fairly under control with the usual bumps along the way. My wife (no gluten allergy), who I met in high school and was with me throughout the diagnosis, is now pregnant with our first child.

Has anyone gone through this? I know there's a chance that the baby could also have the condition. The majority of me wants the baby to have the "normal" diet and lifestyle while another small part of me wouldnt mind another gluten free person in the family. We've informed our doctor and the baby will be tested right after birth. I hope there are no complications. It makes me nervous.

How hard is it to raise a baby with the condition? Does anyone know of specific gluten-free baby foods? Being diagnosed at 17 did not really give me the chance to grow up with the lifestyle so it was certainly a big change.

We dont know if the baby will have it but i'd like to be ready

Thanks for the help!

Matt

[alamaz]

Hi Matt- Congratulations on your first! You both must be so excited.

I'm currently pregnant with our first also so I don't have much advice for you about the diffuculites of raising a child with celiac disease. I just wanted to say that you are already at an advantage since you know the signs and symptoms of celiac disease and how to live gluten-free. Many families are hit with celiac disease after establishing a "normal" life and have a lot harder time adjusting (as you probably know). As for testing right after birth do you mean genetic testing? As I understand it, the antibodies that would produce the positive blood tests won't start being made until there is gluten in the diet. However, if you do genetic testing that will let you know if there is a chance of your baby developing celiac disease at some point. I've read that it's recommended to test (via bloodwork) every two years or sooner if symptoms develop.

good luck!

[Matt S]

Thanks so much for the post! Congrats to you also on your pregnancy In terms of the testing, thats the thing--I dont know! I wish I knew the specifics and will def find a doctor to ask. I dont want any risk involved for the baby and I'm sure you know what I mean. You are right, I've had a lucky past in terms of the diagnosis. I'm the only one in my family with a positive celiac disease diagnosis but i'm sure others have gone without it. My grandfather, from what I know, had a horrible stomach.

I know that i'm certainly going to keep an eye out for stomach problems after the baby is here. Hopefully we find a good pediatrician!

alamaz I wish you the best of luck with your baby and thanks again!

[Belinda Meeker]

Hey Matt,

Gratz on the new Arrival

I found this for my new D-in-law for when she becomes expecting for the genetic history we all have and it seems quite interesting

Hope it helps and I too wish I'd of had first hand what would happen if I would of nursed my boys longer

Good Luck!

Bea

Breast-feeding May Protect Against Celiac Disease

Arch Dis Child 2006;91:39-43.

Celiac.com 12/08/2005

[Worriedtodeath]

HI Matt!!!!

We just went gluten free yesterday with all three kids, 19 months, 7years, and 10 years. While I am just starting out on gluten-free kids, let me tell you what I have discovered so far.

Wheat is in everything! I've been reading baby food labels (she likes it) and wheat is everywhere!! Read those labels. Better yet make your own. It's easy and involves nothing more than boiling some fruit or veggies to the point of softness where they can be easily mashed by a finger.

Controlling their diet is rather simple. Controlling a group of cheerio eating 2 years old in a daycare setting, playgroup, Sunday School, is awhole nother ball game. One cheerio hits the floor and BAMM into the mouth of another. Your 2 year old has no idea they shouldn't have it and has no problem being the one to happily munch on it. So it's that in that sense that I find it hard raising a Celiac baby/toddler. Controlling what she will eat until she's able to understand what she can't have is the diffucult part when you get around others.

We just had our biopsy yesterday on the 19 month old, so I never went thru the first year gluten free. But let me tell you what I would do now if I could redo or if I had another child.

1. I would be completely a gluten free pregnancy (if i could - I lived off of crackers while pregnant) but definitely while breastfeeding.

2. My baby would not have any form of gluten before the age of 2 perhpas even 3. Being in the midst of it, all I will say is it is a nightmare. If I could do it over, I would postpone the possibilty as long as I possibly could. Under 2 is where some of the greatest growth in life and greatest mental developments take place. Celiac messes badly with that. Catch up is possible but there are no guarantees. If I knew then what I know now, no gluten whatsoever.

Hope that helps!

Stacie

[Matt S]

Thanks for all the replies! Belinda, Thanks for the article! I actually had this very conversation with my wife before she went into work tonight (concerning breast feeding). It is always great to read new things out there and see the research behind the concerns we have.

Stacie thanks also for your post! Thanks for the advice and I appreciate your honesty. So do you think that avoidance is the best policy untill we KNOW that the baby has it or not? That seems to make sense to me. That's really my concern, like you mentioned, with the developmental issues. I went to high school with a guy who was born with it. He had many complications at birth and spent a while in the hospital before he could go home. Also he faced complication with growth and mal nutrition (it didnt stop him from taking his own gluten-free alcohal to parties but that's another story )

My wife is also living off the crackers, like you mentioned. She loves them and I know they help with any stomach discomfort. I can honestly say I havent been this nervous since my own diagnosis. Its like having flashbacks Its a hard feeling to care so much for this child and want to give all your love to them when they arrive but also know that you could pass on the celiac disease. Not that celiac disease is a life sentence or a horrible thing but I know initially i thought it was. I hope that makes sense!

Matt

[confusedks]

Matt,

Another thing is if you decide to allow the baby gluten, you will be able to recognize the signs of Celiac right away, and you won't have to wait years and years for a diagnosis.

[LauraWass]

Hello all,

I was diagnosed the summer I graduated high school. It's been eight years now and things are fairly under control with the usual bumps along the way. My wife (no gluten allergy), who I met in high school and was with me throughout the diagnosis, is now pregnant with our first child.

Has anyone gone through this? I know there's a chance that the baby could also have the condition. The majority of me wants the baby to have the "normal" diet and lifestyle while another small part of me wouldnt mind another gluten free person in the family. We've informed our doctor and the baby will be tested right after birth. I hope there are no complications. It makes me nervous.

How hard is it to raise a baby with the condition? Does anyone know of specific gluten-free baby foods? Being diagnosed at 17 did not really give me the chance to grow up with the lifestyle so it was certainly a big change.

We dont know if the baby will have it but i'd like to be ready

Thanks for the help!

Matt

Hi Matt,

Congrats on the pregnancy! We have a 2 year old who was just diagnosed a few weeks ago with celiac disease. So far having a toddler with celiac is not that hard--she likes the new food. There are times when she wants something if she sees a friend eat it, and I have to explain to her that it gives her a tummy ache. I am not so sure if she gets it, but she does listen. We were lucky and did not have as bad of a case as I see some people have. Alana lost a little weight and she had a few symptoms, but it did not seem to really interfere with her thriving. We just have a smart pediatrician who knew to test for it after she saw her distended stomach!! So my advice is to find a great pediatrician who is familiar with celiac disease. You can test your baby to see if she/he has the gene for celiac disease, but I think you would have to introduce gluten in the diet to see if she/he would actually have the disease. Good luck!

[pugluver31902]

Hi! Im currently pregnant and here is what we have decided to do

1. I am already gluten free, and the baby will remain so also

2. With the mounting evidence of autism and mental illness linked to celiac disease I will be keeping my baby gluten free until it is at least three years old and past the age of developing autism. Then I will introduce gluten to the diet and see how baby does. Since the baby has to be eating gluten for a while before a test would even turn up positive, we will see how that goes. We may just see if baby (or toddler at this point) gets sick or not.

Good luck!

[Worriedtodeath]

HI Matt!

Only problem with this disease is that you have to eat gluten to develop Celiac. And while we have a great dr whose first thought was Celiac, my daughter's blood panels were negative. Which led us to think food allergies and took us down the path of food trials. When we came back around to wheat, we revisited the idea of Celiac since her symptoms came back. At that point, we stayed on wheat trying different "foods" still thinking a food allergy like dyes or such were causing the problem since her blood test was negative. When her weight dropped off the growth chart and the gi problems worsened, it took a month and half (very quick since we were worked in due to the severity of the situation - my friend with the same dr took 3 months) to see a ped gi. By that point we had been on wheat so long that it didn't make sense to stop wheat before the biopsy (another month). So while we have drs who are very up on Celiac even to the point of dx her as a non celiac gluten intolerant or perhaps subclinical Celiac if the biopsy isn't positive, it still takes time. 7 months from the moment the dr noticed her failure to thrive to the biopsy. 7 months of no growth, 7 months of no speech, 7 months of avearge of 8 diapers a day of poopy.

Second problem with babies/toddlers is the blood tests and biopsy are highly unrealiable simply due to their young age. They haven't eaten enough gluten long enough to be accurate with every child. Babies in general do not produce a lot of these antibodies to begin with and can still have Celiac but they don't produce enough antibodies to show up in the test. the disease itself is patchy and does not destroy the entire small intestine. It does so in spots. Spots that may or may not be visible by sight thru the scope. THus a dr may or may not biopsy the spot that has damage since he can't see damage thru the scope. Or that a baby has enough spots damaged to raise the odds of hitting a damaged spot. Then you factor in the pathologist who prepares and reads the biopsies and does he do it right? In a young child, the biopsy is not the great of test.

So in hindsight, if I had known about Celiac and the effects of gluten, I would have not introduced gluten until my children were old enough to not have developmental delays, to not have their physical growth affected, and to have been old enough to "weather" a gluten challenge. an older child may still have taken the same amount of time to dx but an older child wouldn't have two or three growth spurts and several mental developments during that time frame like an baby would. I just wouldn't take that chance if I could do it again.

Stacie

[Matt S]

Wow, all i can say is thanks so much to everyone for all your responses. I'm glad that we are not the only couple to go through this! Since I posted last we had our first ultrasound and things are looking good. I think, from reading the posts and talking with Val, we will go no gluten initially. I agree that there isnt a reason to risk any developmental delays in the beginning. Those years are so important and, from reading the posts, any complications could just add to the daily task of new parenthood ! We are going to look for a pediatrician soon and I'm making it a point to ask about their understanding of celiac disease. If anyone knows of any in the Reading PA area, please let me know! We are delivering at St. Joe's hospital which has a good reputation with their maternity area so they may even have someone knowledgable on staff.

I'm so glad that this community is willing to share experiences. Sometimes it feels like you are out in space with this stuff and then to get on here is a breath of fresh air!

[cruelshoes]

Please consider this study by the American Academy of Pediatrics before making the final decision about when to introduce gluten. There may be benefits to introducing gluten within the 4 - 6 month timeframe for a child that is prone to celiac disease.

See this link: Open Original Shared Link

Link to full article: Open Original Shared Link

The AAP published a study in the May 18, 2005 issue of the Journal of the American Medical Association. In it, it was reported that children that are prone to celiac disease have a greater risk of developing celiac disease if gluten in introduced prior to 4 months or after 7 months. These children were followed for an average of 4.8 years.

Here are the findings:

The Findings

Fifty-one children (3.3%) developed evidence of celiac disease. Twenty five of these children had biopsy confirmed cases. Major findings included:

Children exposed to wheat, barley, or rye in the first three months of life had a five-fold increased risk of celiac disease autoimmunity compared to those exposed at 4-6 months. Children not exposed until their seventh month or later were also at increased risk, but only slightly.

Among the 41 children who were at the greatest risk according to their genetic markers, those exposed to wheat, barley, or rye in the first three months of life had nearly an eight-fold increased risk of celiac disease autoimmunity compared to those exposed at four to six months.

No protective effect of breastfeeding was observed.

These findings were consistent even when the researchers limited their analysis to only the 25 cases of biopsy-confirmed celiac disease.

FWIW, we introduced gluten to both of our older kids at 6 months. One developed celiac and one did not. We followed this study with the blessing of our pediatrician and introduced gluten to our youngest at 5 months. Time will tell if that strategy is beneficial. I have also read studies that breastfeeding CAN have a protective effect.

Not trying to tell you what to do, only asking that you take this study into consideration. Good luck with whatever you decide to do.

[Matt S]

Thanks for the post of that study. It brings more interesting points to consider. It's almost like we ask ourselves is it better to know sooner or later? Is there an actual benefit to inducing it early? We will certainly take each piece of information into consideration. It's wierd to think that it just came on for me and that now, as a parent, it will be another level of watching. When that baby arrives, the role totally changes. Its stressful!

[lovegrov]

First, it would be an absolute waste of time to do any kind of celiac testing right after birth. Testing generally isn't accurate until after two years or later.

Virtually everything I've ever read says to feed your child like any other child. If you start seeing symptoms, then you start checking it out. Of course you an keep your child gluten-free for a few years, but eventually he or she is going to want to know why he or she can' have those things all the other kids are having. I personally wouldn't want to do that to my child simply because he MIGHT have celiac, particularly when the odds favor the child not having celiac.

richard

[Matt S]

Richard. Thanks for your pleasant response. I'll be sure to keep your opinion in mind.

[pugluver31902]

I would have tp personally disagree with introducing gluten to my child at a young age. There are so many studies and threads going on about how gluten in a gluten sensitive child has huge effects on thier behavior in negative ways. I would not want my child to be on gluten while at such a critical stage of personality development. Whether or not a child is introduced to gluten as a baby, child, or adult, celiac can be triggered by anything such as puberty, surgery, or pregnancy. If Celiac carries certain gene characteristics, as it does, it is something that I feel is already programmed into thier DNA. While I think a study on introducing gluten at certain months is quite interesting, I would be very skeptical about giving it much credence as it didnt even follow the kids to five years old. Celiac may very well be brewing by that age, and just not testing positive. Especially since they are finding more and more Celiac's are asymptomatic and testing in children is known to be unreliable. But like I said, that is my opinion. For me personally, as I had said before, my husband and I feel strongly to keep our baby off gluten until they are past critical stages and then introduce gluten. Even with that plan, they may be fine for years and develop celiac later. I dont think there is really any foolproof plan.

[Belinda Meeker]

Thanks for all the replies! Belinda, Thanks for the article! I actually had this very conversation with my wife before she went into work tonight (concerning breast feeding). It is always great to read new things out there and see the research behind the concerns we have.

Stacie thanks also for your post! Thanks for the advice and I appreciate your honesty. So do you think that avoidance is the best policy untill we KNOW that the baby has it or not? That seems to make sense to me. That's really my concern, like you mentioned, with the developmental issues. I went to high school with a guy who was born with it. He had many complications at birth and spent a while in the hospital before he could go home. Also he faced complication with growth and mal nutrition (it didnt stop him from taking his own gluten-free alcohal to parties but that's another story )

My wife is also living off the crackers, like you mentioned. She loves them and I know they help with any stomach discomfort. I can honestly say I havent been this nervous since my own diagnosis. Its like having flashbacks Its a hard feeling to care so much for this child and want to give all your love to them when they arrive but also know that you could pass on the celiac disease. Not that celiac disease is a life sentence or a horrible thing but I know initially i thought it was. I hope that makes sense!

Matt

Matt I was told enstead of my niece eating tons of crackers to try ginger teas and such for the nausea I'm with Stacy all the way if I knew then wht I know now NOW WAY would I of ever ate gluten or it's hidden friends

Good Luck!

Bea

[pugluver31902]

Glutino makes a great gluten free cracker. Its just like a ritz.

[Jodi Mills]

1. I would be completely a gluten free pregnancy (if i could - I lived off of crackers while pregnant) but definitely while breastfeeding.

2. My baby would not have any form of gluten before the age of 2 perhpas even 3. Being in the midst of it, all I will say is it is a nightmare. If I could do it over, I would postpone the possibilty as long as I possibly could. Under 2 is where some of the greatest growth in life and greatest mental developments take place. Celiac messes badly with that. Catch up is possible but there are no guarantees. If I knew then what I know now, no gluten whatsoever.

Hope that helps!

Stacie

Staci,

That is good that the whole fam is gluten free. I was a celiac toddler, and my mom didnt find out it ws celiac until i was about 6. I know i was a hassle for her. anyhow just wanted to say hi.

[Worriedtodeath]

And just to show you how quickly a md will change his mind about Celiac (and not to highjack your thread but it sort goes along with it)

All of my baby's biopsies came back normal (I still haven't seen the report to be able to know if that really is the case or what they call normal) even though he felt sure she would present with villi damage upon examination. HOWEVER she didn't. Instead she came back with a lactase deficiency making her lacotse intolerant. GUESS WHAT! He demanded we put her back on gluten after a week of gluten free with noticeable improvement and remove all diary out of her diet even though 4 months early the 3 week long food trials conducted by the allergist showed she didn't have a lactose problem then. OF course, 2 days of ingesting cheerios and honeymaid graham bee crackers have produced another bout of diaherra. Now he thinks that when we finish out two weeks of no diary we will then declare she has a wheat allergy even though the allergist strongly disagrees since her diaherra isn't linked to her eating food as in she eats and doesn't within 2 hrs develop diaherra. TO him that means it isn't an allergy but something else wrong with her like Celaic disease since you should eat and then get sick sometime soon not 2 or 3 weeks later!!!!!!

So we have two specialist pointing at each other claiming the other's test is unreliable in young children and the negatives both generated shouldn't be considered a negative because of her young age. While the ped says who cares I think she's Celiac since I have seen her through both of you and I say she should be off of wheat/gluten for life. But none of the 3 will dx with anything.

SO who wants to be in this boat???? It sucks!!! I told my husband we will do the two weeks to show the lactose developed after being on wheat and then we will do things my way. Both of my other kids asked to stay gluten free when given the chance to go back on gluten. NOW what does that tell you

IF I had only known, I would have never gone down this route. So I would still if I could do it over again never never have gluten in the house or around my kids until no one could agrue the validity and reliability of the tests. After this, I am putting my foot down since no law says I have to feed her gluten just a healthly balanced diet.