Experience With Newborns With High Risk Of celiac disease?

[Kimmik95]

My son was diagnosed with celiac disease in November 2010. He went immediately gluten-free, and I would say out house in general is about 90% gluten-free. I have a 3 year old daughter who still eats some gluten and my husband and I eat some gluten. I am currently pregnant with a daughter (32 weeks) who has Down Syndrome. From what I understand, she has a higher chance of developing celiac disease due to the DS alone and then having a first degree sibling with celiac disease also raises her risk significantly.

I've heard alot on all sides about nursing and when to introduce solids, etc. to try to hold off any food inolerance. Does anyone have any experience with doing this? My son's doctor suggested we just go gluten-free with her, but I'm not sure I want to do that totally unless we have a reason.

Also - although my choice for feeding her at first would be to nurse, with the DS and the fact that she will be very little (growth restricted), I'm not sure that will be a possibility. Is formula gluten free?

Thanks!

[teresasupermom]

I've read a bit on this as I have a 6 month old. There are some new studies out saying that the best time to introduce gluten is between 4-6 months to reduce the risk of celiac. Because our whole house is now gluten free I am finding it hard to do that, but I have been trying to expose her to gluten. This is a very personal decision so I don't think there is one right answer. For me, I wanted to expose her because if I could keep her from having celiac that would be ideal. Living completely gluten free without ever being contaminated is very difficult. I have also read that giving hydrolized formula (alimentum, nutrimigen) lowers there chance of celiac. I will warn you those formulas are expensive. Breastfeeding also lowers there chances so bfing would be best. Regular infant formulas are gluten free though so you don't have to use hydrolized formula. I just thought I'd throw out the info on it in case you were interested.

[tarnalberry]

My son was diagnosed with celiac disease in November 2010. He went immediately gluten-free, and I would say out house in general is about 90% gluten-free. I have a 3 year old daughter who still eats some gluten and my husband and I eat some gluten. I am currently pregnant with a daughter (32 weeks) who has Down Syndrome. From what I understand, she has a higher chance of developing celiac disease due to the DS alone and then having a first degree sibling with celiac disease also raises her risk significantly.

I've heard alot on all sides about nursing and when to introduce solids, etc. to try to hold off any food inolerance. Does anyone have any experience with doing this? My son's doctor suggested we just go gluten-free with her, but I'm not sure I want to do that totally unless we have a reason.

Also - although my choice for feeding her at first would be to nurse, with the DS and the fact that she will be very little (growth restricted), I'm not sure that will be a possibility. Is formula gluten free?

Thanks!

Little (and early) babies need breastmilk even more! If you want specific advice on breastfeeding this new one (not as it relates to celiac) I would STRONGLY encourage you to find a doctor who is a member of the Academy of Breastfeeding Medicine. Most docs (even pediatricians, and certainly OBs) don't know very much at all. If you don't expect to have supply issues, plan on FREQUENT breastfeeding. Every two hours. (Yup, I set a clock. From the first time my daughter woke up after her first sleep, EVERY BLOODY TWO HOURS.)

Breastfeeding reduces the risk of celiac (possibly by altering what the intestinal bacterial flora consists of; it's totally different in exclusively breastfed babies), but if you strongly suspect any intolerance, you would also need to go gluten free. (My understanding, from a parent of a DS kid, is that gluten and dairy are often hard on their digestive systems anyway, and you might consider cutting that out of your diet while you breastfeed.)

We're in the same boat about introducing gluten - our house is mostly gluten-free, and I have no interest in feeding my daughter something I can't have ('cause it'll get all over me ). While I haven't introduced it to her before the 6month mark (she's 9mo now), I will have my husband introduce her to it at somepoint. (She's had gluten-free oats twice now, though.)

While you are thinking about all of this, consider locating the local La Leche League group (they often have very knowledgeable people running their meetings and are a good resource in general), as well as locating (if possible) any physical therapists or occupational therapists who specialize in infant nursing. That way, if there are muscular/functional issues with your daughter's ability to nurse, you've got a support system already in place to help you maximize your chances of making it work. And some moms do choose to exclusively pump. (Though, with other kids in the house, this may prove too much work.)

Formula is gluten free, but don't just take the delivery team's and L&D nurses word for it that you need to supplement. Some of them are WOEFULLY undereducated about breastfeeding. (The requirements are shockingly low.)\

Finally, I want to encourage you to have your daughter evaluated for tongue tie at birth. It's not really common, but I know a ridiculously large number of recent babies with tongue tie. Regardless of what an OB or L&D nurse says, tongue tie DOES impact breastfeeding negatively - both for you and the baby. (One of the reasons I suggest finding out if there's a Academy of Breastfeeding Medicine registered doc near you. They know SOOO much more about breastfeeding on both sides of the mother-baby dyad.)

[T.H.]

To be really blunt re: intolerances/allergies and solid introduction - I don't personally believe doctors have a clue yet. I've seen studies that say hold off on introducing allergens because you'll be more likely to have your child develop an allergy if you don't. And I've seen studies that say don't hold off on introducing allergens, because you need to get them used to it. Some cultures eat certain allergens constantly, including at very young ages, and don't develop the allergies. Some do the same and their kids seem to be developing the allergies more frequently now. Nurse while introducing the allergen, don't nurse...

Seriously, I don't think the medical community have it anywhere NEAR figured out. There are just so many variables involved, and it's a field that has a long way to go before everything is completely understood.

However, that said? Here's what I've heard that made sense to me, and it's more a common sense approach than anything else, really. Basically, if you have a child who is in a high risk category for developing an allergy or intolerance, keep them off of what they're at risk for until they can TELL you that there's an issue. An infant can't tell you that she's crying because her stomach hurts, or that her skin is starting to itch, or that it's getting hard to breathe, and that can leave you in the dark until the problem becomes serious. An older child, 3 or 4, or perhaps later depending on how your little one develops, can talk to you and you can ask questions. So if you wait that long to introduce a potential problem food, you aren't doing damage without being aware of it.

For my two children, we didn't know there were food issues in the family before they were born. We kept my daughter off of solids for 6 months, although I'm sure she got bits and pieces from different adults plates for a while before then, and she breastfed for quite a long while after we introduce wheat. She developed celiac disease, likely at a young age, based on the symptoms. My son was snuck formula in the hospital when I was unaware but breastfed for a long time as well, and he had trouble with food from the first week of life, and he also still still developed trouble with wheat, just like his sister.

A friend of mine who had known food allergies in the family did the avoiding until the child can communicate thing, for both her children, including one who has a number of disabilities. She kept both off the potential problem food (anaphylactic allergy within the family), and then the 8 major allergens, too.

The oldest has now been introduced to the potential problem foods and doesn't seem to be having a problem. The youngest is still not developmentally able to to communicate, and they are not certain she ever will be. They are trying to decide what to do about allergens if that happens.

I think this approach can be even more important with a child like yours who may have difficulties, mentally and physically, because you likely wouldn't know for years if any delays were because of Down's syndrome, or because of the development of a gluten intolerance, etc.... Short stature, learning problems, emotional difficulties - this is all stuff that can go along with gluten. It's something my son has had for years that we thought was 'just him.' I know it'll be a pain, but it just seems easier to me to deal with any delays when you know the origin.

But again - that's really only opinion.

re: breastfeeding

I just wanted to say one thing, because of the Down's syndrome. If you can't nurse, are you considering pumping at all? I know that Down's babies are more susceptible to lung ailments like bronchitis and pneumonia. And I know that two of the most prevalent antibodies present in large amounts in breastmilk are most effective against the bacterial strains that cause pneumonia and dysentary type illness (it's one of the reasons why the WHO usually recommend breastfeeding so much in third world countries, where these two problems are more often fatal to infants.). Also, I have read - haven't research it much, though - that the immune system bonuses in the milk build up until it's pumped out, so even one feeding a day can get a lot of good antibodies and such.

Oh, also, you're child will be getting wheat, if breastfeeding ends up what works for you all, unless you are completely gluten free yourself. It does come through in the milk, although only small amounts. I went through that with dairy and my son, and had to go completely dairy free during nursing or he reacted.

Re: gluten free formula - I'm sure there has got to be some gluten-free formula out there, but I don't know if there is any that they actually test for ppm, or that is made in a gluten free factory or on a gluten free line. That wasn't something I had to deal with at the time, so I've never looked, eep!

Also, just one last aside - have the rest of you been tested? If your doc didn't suggest it right off, you might want to consider it. We had one diagnosed family member and never tested. 8 years later, we finally did and three more of us came back positive, and one negative who had symptoms resolution on a gluten-free diet. Two of us had none of the traditional symptoms, so symptoms themselves are not always a good indicator that you have the disease, ya know?

[Kimmik95]

Thanks for the info. I'm going to try to breastfeed (cheaper, easier, etc), but there are alot of unknowns, so we'll see what happens. I have one child who nursed well and one who refused, so it'll be interesting to see where this one stands.

I've read a bit on this as I have a 6 month old. There are some new studies out saying that the best time to introduce gluten is between 4-6 months to reduce the risk of celiac. Because our whole house is now gluten free I am finding it hard to do that, but I have been trying to expose her to gluten. This is a very personal decision so I don't think there is one right answer. For me, I wanted to expose her because if I could keep her from having celiac that would be ideal. Living completely gluten free without ever being contaminated is very difficult. I have also read that giving hydrolized formula (alimentum, nutrimigen) lowers there chance of celiac. I will warn you those formulas are expensive. Breastfeeding also lowers there chances so bfing would be best. Regular infant formulas are gluten free though so you don't have to use hydrolized formula. I just thought I'd throw out the info on it in case you were interested.

[Kimmik95]

My ideal is to breastfeed and I have all my resources lined up for that. My son refused to nurse as a baby and I had very little support for the nursing, so I pumped and fed for about 5 months and I absolutely refuse to do that again. I will pump for a bit to help Phoebe start nursing if needed, but it won't go 5 months. My daughter nursed like a champ for about a year, so at least I know how it's done now! From what I've learned, the people only react to gluten if it is directly ingested and babies who nurse do not directly ingest the gluten as it is broken down in breastmilk, so I wouldn't have to go gluten-free, hopefully. I've known (through forums) several babies who've had tongue tie causing nursing issues, but thanks for reminding me.

Little (and early) babies need breastmilk even more! If you want specific advice on breastfeeding this new one (not as it relates to celiac) I would STRONGLY encourage you to find a doctor who is a member of the Academy of Breastfeeding Medicine. Most docs (even pediatricians, and certainly OBs) don't know very much at all. If you don't expect to have supply issues, plan on FREQUENT breastfeeding. Every two hours. (Yup, I set a clock. From the first time my daughter woke up after her first sleep, EVERY BLOODY TWO HOURS.)

Breastfeeding reduces the risk of celiac (possibly by altering what the intestinal bacterial flora consists of; it's totally different in exclusively breastfed babies), but if you strongly suspect any intolerance, you would also need to go gluten free. (My understanding, from a parent of a DS kid, is that gluten and dairy are often hard on their digestive systems anyway, and you might consider cutting that out of your diet while you breastfeed.)

We're in the same boat about introducing gluten - our house is mostly gluten-free, and I have no interest in feeding my daughter something I can't have ('cause it'll get all over me ). While I haven't introduced it to her before the 6month mark (she's 9mo now), I will have my husband introduce her to it at somepoint. (She's had gluten-free oats twice now, though.)

While you are thinking about all of this, consider locating the local La Leche League group (they often have very knowledgeable people running their meetings and are a good resource in general), as well as locating (if possible) any physical therapists or occupational therapists who specialize in infant nursing. That way, if there are muscular/functional issues with your daughter's ability to nurse, you've got a support system already in place to help you maximize your chances of making it work. And some moms do choose to exclusively pump. (Though, with other kids in the house, this may prove too much work.)

Formula is gluten free, but don't just take the delivery team's and L&D nurses word for it that you need to supplement. Some of them are WOEFULLY undereducated about breastfeeding. (The requirements are shockingly low.)\

Finally, I want to encourage you to have your daughter evaluated for tongue tie at birth. It's not really common, but I know a ridiculously large number of recent babies with tongue tie. Regardless of what an OB or L&D nurse says, tongue tie DOES impact breastfeeding negatively - both for you and the baby. (One of the reasons I suggest finding out if there's a Academy of Breastfeeding Medicine registered doc near you. They know SOOO much more about breastfeeding on both sides of the mother-baby dyad.)

[Kimmik95]

THanks for your resonse. I agree with you that the medical community doesn't really know. I've read stuff supporting and against about every angle! I wanted some real people to tell me what they've done, so thanks!

When Chris' doctor suggested the gluten-free for Phoebe, I thought it was a descent idea. I mean, why deal with possible gluten-free issues while we are still trying to figure out her DS issues? I was thinking of keeping her gluten-free until she's 3 or 4 and can communicate better.

I plan on breastfeeding and will pump for a short time, but I won't do an extended pump and feed. I did that with my son for 5 months because he refused to nurse and it was awful. My daughter nursed like a champ, so I'm figuring that at least now I know what it's like to nurse a child! From what I've read, gluten must be directly ingested in order to react and that's not the case with breastfeeding because the gluten is broken down before being ingested. I know Dairy is different. This is something I would discuss with a professional in detail though. The gluten-free thing would be tough for me.

We have not yet been tested. I have the paperwork to take my daughter, but I'm waiting until I can get paperwork so we can both do it at the same time (she's only 3). My doctor was being a jerk about it, so I'm going to switch doctors. I'm actually going to see if my OB can give me the paperwork for the bloodwork so I don't have to go through getting into a new doctor's office and whatever they want to do to consider me a new patient. It just seems silly considering a see a doctor at least once a week and sometimes twice a week. I'm not quite sure what my husband is waiting for on that front.

To be really blunt re: intolerances/allergies and solid introduction - I don't personally believe doctors have a clue yet. I've seen studies that say hold off on introducing allergens because you'll be more likely to have your child develop an allergy if you don't. And I've seen studies that say don't hold off on introducing allergens, because you need to get them used to it. Some cultures eat certain allergens constantly, including at very young ages, and don't develop the allergies. Some do the same and their kids seem to be developing the allergies more frequently now. Nurse while introducing the allergen, don't nurse...

Seriously, I don't think the medical community have it anywhere NEAR figured out. There are just so many variables involved, and it's a field that has a long way to go before everything is completely understood.

However, that said? Here's what I've heard that made sense to me, and it's more a common sense approach than anything else, really. Basically, if you have a child who is in a high risk category for developing an allergy or intolerance, keep them off of what they're at risk for until they can TELL you that there's an issue. An infant can't tell you that she's crying because her stomach hurts, or that her skin is starting to itch, or that it's getting hard to breathe, and that can leave you in the dark until the problem becomes serious. An older child, 3 or 4, or perhaps later depending on how your little one develops, can talk to you and you can ask questions. So if you wait that long to introduce a potential problem food, you aren't doing damage without being aware of it.

For my two children, we didn't know there were food issues in the family before they were born. We kept my daughter off of solids for 6 months, although I'm sure she got bits and pieces from different adults plates for a while before then, and she breastfed for quite a long while after we introduce wheat. She developed celiac disease, likely at a young age, based on the symptoms. My son was snuck formula in the hospital when I was unaware but breastfed for a long time as well, and he had trouble with food from the first week of life, and he also still still developed trouble with wheat, just like his sister.

A friend of mine who had known food allergies in the family did the avoiding until the child can communicate thing, for both her children, including one who has a number of disabilities. She kept both off the potential problem food (anaphylactic allergy within the family), and then the 8 major allergens, too.

The oldest has now been introduced to the potential problem foods and doesn't seem to be having a problem. The youngest is still not developmentally able to to communicate, and they are not certain she ever will be. They are trying to decide what to do about allergens if that happens.

I think this approach can be even more important with a child like yours who may have difficulties, mentally and physically, because you likely wouldn't know for years if any delays were because of Down's syndrome, or because of the development of a gluten intolerance, etc.... Short stature, learning problems, emotional difficulties - this is all stuff that can go along with gluten. It's something my son has had for years that we thought was 'just him.' I know it'll be a pain, but it just seems easier to me to deal with any delays when you know the origin.

But again - that's really only opinion.

re: breastfeeding

I just wanted to say one thing, because of the Down's syndrome. If you can't nurse, are you considering pumping at all? I know that Down's babies are more susceptible to lung ailments like bronchitis and pneumonia. And I know that two of the most prevalent antibodies present in large amounts in breastmilk are most effective against the bacterial strains that cause pneumonia and dysentary type illness (it's one of the reasons why the WHO usually recommend breastfeeding so much in third world countries, where these two problems are more often fatal to infants.). Also, I have read - haven't research it much, though - that the immune system bonuses in the milk build up until it's pumped out, so even one feeding a day can get a lot of good antibodies and such.

Oh, also, you're child will be getting wheat, if breastfeeding ends up what works for you all, unless you are completely gluten free yourself. It does come through in the milk, although only small amounts. I went through that with dairy and my son, and had to go completely dairy free during nursing or he reacted.

Re: gluten free formula - I'm sure there has got to be some gluten-free formula out there, but I don't know if there is any that they actually test for ppm, or that is made in a gluten free factory or on a gluten free line. That wasn't something I had to deal with at the time, so I've never looked, eep!

Also, just one last aside - have the rest of you been tested? If your doc didn't suggest it right off, you might want to consider it. We had one diagnosed family member and never tested. 8 years later, we finally did and three more of us came back positive, and one negative who had symptoms resolution on a gluten-free diet. Two of us had none of the traditional symptoms, so symptoms themselves are not always a good indicator that you have the disease, ya know?

[T.H.]

From what I've read, gluten must be directly ingested in order to react and that's not the case with breastfeeding because the gluten is broken down before being ingested.

Sadly, there's a new study on it. I came across this reference to it, in january 2010:

Open Original Shared Link

Kind of a bummer, yeah?

[Kimmik95]

Thanks for the reply. That was actually from a study in 1998 on 6 mothers. There's been lots of contradictory stuff since then. I'm planning on talking to a lactation consultant here in the next week or so, so I'll see if she has any info that's recent for me.

Sadly, there's a new study on it. I came across this reference to it, in january 2010:

Open Original Shared Link

Kind of a bummer, yeah?

[CrunchyChristianMama]

My ideal is to breastfeed and I have all my resources lined up for that. My son refused to nurse as a baby and I had very little support for the nursing, so I pumped and fed for about 5 months and I absolutely refuse to do that again. I will pump for a bit to help Phoebe start nursing if needed, but it won't go 5 months. My daughter nursed like a champ for about a year, so at least I know how it's done now! From what I've learned, the people only react to gluten if it is directly ingested and babies who nurse do not directly ingest the gluten as it is broken down in breastmilk, so I wouldn't have to go gluten-free, hopefully. I've known (through forums) several babies who've had tongue tie causing nursing issues, but thanks for reminding me.

Just so you know, my DD reacted to gluten via breastmilk. I know I'm just one person and not a study, but it is possible.

Also, because she has DS they may try to wisk her away after birth and start testing and such. I would INSIST that this be delayed at least an hour so that you can have lots of skin to skin time as that has been shown in study after study to be super important to developing a good breastfeeding relationship. Don't even let them wipe her down first and bundle her up if possible. Just go straight to mom's tummy and breast.

[Darn210]

Hi Kimmik,

First, congratulations on your upcoming arrival.

Now, a little info on breastfeeding and DS. Many DS babies can't breastfeed because of low muscle tone and an inability to latch on. Some will even use special nipples on bottles that basically provide a slow drip with no real suction from the baby. It's been a while, so I'm not sure what is used now. Also, I know you've been doing a lot of DS research so I'm sure that you are aware that many babies are born with heart issues. They burn a lot of energy just to pump their blood so sometimes higher calorie content milk is needed just to gain weight. You can do this by adjusting the formula, it is made with a higher powder to water ratio than the directions say. With breast milk, you would have to pump and add formula to that. Hopefully, this will not be an issue and you will not need to do this at all or you may not need to do it for every feeding. Your daughter's pediatrician will be the one to determine if this is required based on her growth. Just wanted you to know that this may happen.

I'm a firm believer in breastfeeding for the baby. Don't give up on the breastfeeding even if you have to pump. If your daughter does not breastfeed well or needs supplemental calories added, your doctor/her pediatrician can write a prescription for a hospital grade pump . . . much much better than pumps you can get at Babys R Us . . . well at least 10 years ago they were. Plus your insurance will pay for all/part of the cost.

I hope this is all info that you don't need . . . I hope she latches on and sucks like a champ . . .

On a side note, if you haven't already done it, I would make contact with a local Down Syndrome support group. They are the ones that know exactly what you are going through and can tell you what to expect and plan for. Everyone I've ever met have been really good-hearted people.

Best Wishes.

[Kimmik95]

I'll definitely put more thought into the breastmilk issue. I dread the idea of going gluten free. Thanks.

They should only wisk her away if she's having some issues because of the growth restriction. If the doctors feel that it's necessary to take her directly to the NICU, I won't argue. I trust my doctors and her initial health is the most important. My doctor was telling me (before the IUGR diagnosis) that the last two babies with DS he worked with didn't even go to the NICU. Overall, she seems very healthy, just not growing well. He said they will do an echocardiogram, but it's not something that's urgent as her heart looks fine.

As far as breastfeeding goes, I have two other kids, so I've been through it before. The issue Phoebe will have will revolve around lack of muscle tone due to the DS and then any issues that may come from the IUGR.

Just so you know, my DD reacted to gluten via breastmilk. I know I'm just one person and not a study, but it is possible.

Also, because she has DS they may try to wisk her away after birth and start testing and such. I would INSIST that this be delayed at least an hour so that you can have lots of skin to skin time as that has been shown in study after study to be super important to developing a good breastfeeding relationship. Don't even let them wipe her down first and bundle her up if possible. Just go straight to mom's tummy and breast.

[Kimmik95]

Thanks for the info. I'm a very Type A personality - I think I had all the reasearch and talking to people done within about a week of receiving the DS diagnosis at 16 weeks! I have 2 other children, one of which I pumped and fed for 5 months and the other who nursed for about a year, so the process of breastfeeding isn't a question. I have my plans in place - it's just a waiting game on the little one at this point. My only real question is about people's direct experience with newborns who have a high chance of celiac disease and their thoughts on introducing solids and keeping (or not keeping) their children gluten-free.

Hi Kimmik,

First, congratulations on your upcoming arrival.

Now, a little info on breastfeeding and DS. Many DS babies can't breastfeed because of low muscle tone and an inability to latch on. Some will even use special nipples on bottles that basically provide a slow drip with no real suction from the baby. It's been a while, so I'm not sure what is used now. Also, I know you've been doing a lot of DS research so I'm sure that you are aware that many babies are born with heart issues. They burn a lot of energy just to pump their blood so sometimes higher calorie content milk is needed just to gain weight. You can do this by adjusting the formula, it is made with a higher powder to water ratio than the directions say. With breast milk, you would have to pump and add formula to that. Hopefully, this will not be an issue and you will not need to do this at all or you may not need to do it for every feeding. Your daughter's pediatrician will be the one to determine if this is required based on her growth. Just wanted you to know that this may happen.

I'm a firm believer in breastfeeding for the baby. Don't give up on the breastfeeding even if you have to pump. If your daughter does not breastfeed well or needs supplemental calories added, your doctor/her pediatrician can write a prescription for a hospital grade pump . . . much much better than pumps you can get at Babys R Us . . . well at least 10 years ago they were. Plus your insurance will pay for all/part of the cost.

I hope this is all info that you don't need . . . I hope she latches on and sucks like a champ . . .

On a side note, if you haven't already done it, I would make contact with a local Down Syndrome support group. They are the ones that know exactly what you are going through and can tell you what to expect and plan for. Everyone I've ever met have been really good-hearted people.

Best Wishes.

[brendab]

I must chime in on breastfeeding and gluten! My 5th baby had food issues coming through my milk from about 4 months on and they were severe in the digestive tract. When I had even a small amount of gluten, a tiny taste of some scrumptious cookie, he would have a bowel movement that would literally burn his bum, leaving large blisters that would bleed and ooze for up to two weeks! Very painful for the little guy so I had to be VERY, VERY strict in staying gluten free. To this day, he's 3 in July, he has to be gluten free and now tells me is bum hurts after a glutened poo comes out. Poor kid Oddly enough, he's does not have DS but he is mildly tongue tied but nursed rather well.

[Kimmik95]

Thanks for the response. I think I'm just going to play it all by ear. Now I know to watch out for the breastmilk at least.

I must chime in on breastfeeding and gluten! My 5th baby had food issues coming through my milk from about 4 months on and they were severe in the digestive tract. When I had even a small amount of gluten, a tiny taste of some scrumptious cookie, he would have a bowel movement that would literally burn his bum, leaving large blisters that would bleed and ooze for up to two weeks! Very painful for the little guy so I had to be VERY, VERY strict in staying gluten free. To this day, he's 3 in July, he has to be gluten free and now tells me is bum hurts after a glutened poo comes out. Poor kid Oddly enough, he's does not have DS but he is mildly tongue tied but nursed rather well.