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Guest cassidy

Breastfeeding And When To Introduce Gluten

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Guest cassidy

I went to a celiac support group meeting this weekend and I was asking about whether gluten does go through breastmilk and when to introduce gluten because I had read so many conflicting theories that I didn't know what to do. They gave me an email address and I just got off the phone with Dr. Swati Kolpuru at the Center for Celiac Research.

She said based on what they know now, gluten does not go through breastmilk. She also said based on what is known now there doesn't seem to be any difference in the chances of developing celiac if the child is introduced to gluten when they are introduced to other solids (around 6 months) or if you hold off until they are 1 or 2. She also said they haven't seen a difference if the child is on a "reduced gluten diet" or allowed to eat as much gluten as they want.

She is currently doing a study to address some of these questions. They enroll babies and keep them gluten-free until 6 months. Then everyone is given a powder to mix in their their kid's food. 1/2 people get powder that contains gluten and the other half get powder that doesn't have gluten. They first test the child to make sure they have the celiac gene. Then they do periodic blood tests to make sure the baby is ok. They also have a nutritionist on board to answer any questions about the baby's diet. Everything is free and they mail you everything. The email address is: GlutenProject@Peds.umaryland.edu. A parent has to have been officially diagnosed with a biopsy so I didn't qualify, but it sounds like a great program for anyone who does qualify.

Who knows if these studies will lead to different theories than what is known now, but at least they are trying to figure everything out.

I just wanted to pass this on because what she told me wasn't what I was hearing from other sources. She talked to me for like 15 minutes and was very helpful.

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Cassidy,

Thanks so much for posting that information! I am sure it will help others....Research is so important.

Interesting...because others have said that it can be.

Laura

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Very interesting. I was wondering recently (and maybe you discussed this with her?) whether it was better to breast feed or not when the mother is a celiac but is somehow still ingesting gluten in her system. I was dx in May, had my follow up biopsy in Oct. which showed still flattened villi (i.e., NO HEALING, even though I've been very thourough on this whole gluten-free thing even down to the shampoos/lotions, etc.), found out I was 8 weeks pregnant in Nov., and am now 12 weeks. I was wondering if I continue to somehow ingest gluten so that my intestines do not recover, would that be bad then to be breastfeeding (would my elevated antibodies somehow affect the baby)? Or, vice versa, say I am healed and continue gluten-free, will my baby not develop the correct antibodies to fight off gluten? I am not a scientist, so maybe I'm just over analyzing this and not making any sense :blink:

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Cassidy,

Thanks so much for posting that information! I am sure it will help others....Research is so important.

Interesting...because others have said that it can be.

Laura

I believe that there are a number anecdotal reports of gluten passing on to baby through breastmilk, but this has not been confirmed through research. At this point, if a mom feels that being gluten free during breastfeeding is helping their baby, then there is not harm in doing so.

Michelle

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Very interesting. I was wondering recently (and maybe you discussed this with her?) whether it was better to breast feed or not when the mother is a celiac but is somehow still ingesting gluten in her system. I was dx in May, had my follow up biopsy in Oct. which showed still flattened villi (i.e., NO HEALING, even though I've been very thourough on this whole gluten-free thing even down to the shampoos/lotions, etc.), found out I was 8 weeks pregnant in Nov., and am now 12 weeks. I was wondering if I continue to somehow ingest gluten so that my intestines do not recover, would that be bad then to be breastfeeding (would my elevated antibodies somehow affect the baby)? Or, vice versa, say I am healed and continue gluten-free, will my baby not develop the correct antibodies to fight off gluten? I am not a scientist, so maybe I'm just over analyzing this and not making any sense :blink:

There is a risk to the developing fetus if a celiac mother continues to consume gluten, due to malabsorption of essential nutrients. I imagine this would be the same for breastfeeding in that it may affect the nutrient level in the breastmilk...and risk that the baby does not receive adequate nutrition.

Michelle

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Guest cassidy
Very interesting. I was wondering recently (and maybe you discussed this with her?) whether it was better to breast feed or not when the mother is a celiac but is somehow still ingesting gluten in her system. I was dx in May, had my follow up biopsy in Oct. which showed still flattened villi (i.e., NO HEALING, even though I've been very thourough on this whole gluten-free thing even down to the shampoos/lotions, etc.), found out I was 8 weeks pregnant in Nov., and am now 12 weeks. I was wondering if I continue to somehow ingest gluten so that my intestines do not recover, would that be bad then to be breastfeeding (would my elevated antibodies somehow affect the baby)? Or, vice versa, say I am healed and continue gluten-free, will my baby not develop the correct antibodies to fight off gluten? I am not a scientist, so maybe I'm just over analyzing this and not making any sense :blink:

Sorry, I didn't ask her any of your questions. If you have been officially diagnosed then your baby would qualify for the study and you could contact her yourself and ask. It seemed like a great resource and if I qualified for it I definitely would have joined.

I believe that there are a number anecdotal reports of gluten passing on to baby through breastmilk, but this has not been confirmed through research. At this point, if a mom feels that being gluten free during breastfeeding is helping their baby, then there is not harm in doing so.

Michelle

I really had thought that gluten did go through breastmilk, I read that in many places. My own mother told me that I had D every time she breastfed me when I was a baby. I certainly think that people should do whatever they feel comfortable with. I was simply posting what this doctor told me. It seems like she is leading the research and if anyone would know the latest it would be her. At the same time, she did say that everything she told me is based on what we know now and that may change once they complete this study and other studies in the future.

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Dionne - I was diagnosed when my son was 2 and I had breastfed him for 18 months. In our case, my malabsorbtion didn't effect him - he obviously knew what he needed and got it all!! However, I think it gave me more problems as it obviously left me with even less in the way of nutrients.

Sounds like a very interesting study. As the breastfeeding, in hindsight, effected me so badly (being undiagnosed at the time), I often wonder if it was worth it in terms of having passed any protection on to DS.


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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Very interesting. I was wondering recently (and maybe you discussed this with her?) whether it was better to breast feed or not when the mother is a celiac but is somehow still ingesting gluten in her system. I was dx in May, had my follow up biopsy in Oct. which showed still flattened villi (i.e., NO HEALING, even though I've been very thourough on this whole gluten-free thing even down to the shampoos/lotions, etc.), found out I was 8 weeks pregnant in Nov., and am now 12 weeks. I was wondering if I continue to somehow ingest gluten so that my intestines do not recover, would that be bad then to be breastfeeding (would my elevated antibodies somehow affect the baby)? Or, vice versa, say I am healed and continue gluten-free, will my baby not develop the correct antibodies to fight off gluten? I am not a scientist, so maybe I'm just over analyzing this and not making any sense :blink:

No person should ever have to "fight off gluten"

Several studies have shown that gliadin (the bad protein from gluten) IS transmitted in breastmilk.

Also antibodies are transmitted with breastmilk, so sending bad antibodies that could potentially attack your baby's intestine isn't such a good idea.

Healthy mom's make healthy babies - don't eat gluten.

If you're absolutely positive that you aren't eating gluten, think about casein. Someone here posted a study that shows that casein (from milk) can cause similar damage in some people.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Sorry, I didn't ask her any of your questions. If you have been officially diagnosed then your baby would qualify for the study and you could contact her yourself and ask. It seemed like a great resource and if I qualified for it I definitely would have joined.

I really had thought that gluten did go through breastmilk, I read that in many places. My own mother told me that I had D every time she breastfed me when I was a baby. I certainly think that people should do whatever they feel comfortable with. I was simply posting what this doctor told me. It seems like she is leading the research and if anyone would know the latest it would be her. At the same time, she did say that everything she told me is based on what we know now and that may change once they complete this study and other studies in the future.

Personally, I think more gets into breastmilk than researches know (or admit?) I know my own children were very much impacted by what I ate during breastfeeding...I simply avoided foods that seemed to correlate with their health issues. Didn't clear it up completely, however, (I was not gluten free either) until they grew to about 20 pounds. I have heard the anecdote that once babies get to about that weight, their GI systems settle down. Don't know if that's true or not, but it seemed to work that way with my boys. :)

Michelle

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Dionne - I was diagnosed when my son was 2 and I had breastfed him for 18 months. In our case, my malabsorbtion didn't effect him - he obviously knew what he needed and got it all!! However, I think it gave me more problems as it obviously left me with even less in the way of nutrients.

Sounds like a very interesting study. As the breastfeeding, in hindsight, effected me so badly (being undiagnosed at the time), I often wonder if it was worth it in terms of having passed any protection on to DS.

Breastfeeding is worth it. It's still the perfect food for babies...providing the correct nutritition at each developmental stage, and providing immunity. The body will do its best to ensure that the baby is getting the nutrition it needs. Breastfeeding is also a stage of normal breast development, and decreases the chance a woman will develop breast cancer (cuumulative effect based on the length of time a woman breastfeeds all of her children.)

Michelle

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Breastfeeding is worth it. It's still the perfect food for babies...providing the correct nutritition at each developmental stage, and providing immunity. The body will do its best to ensure that the baby is getting the nutrition it needs. Breastfeeding is also a stage of normal breast development, and decreases the chance a woman will develop breast cancer (cuumulative effect based on the length of time a woman breastfeeds all of her children.)

Michelle

I agree :) As for normal breast development, why does it make small breats shrink even more? :ph34r:


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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I agree :) As for normal breast development, why does it make small breats shrink even more? :ph34r:

Just because it's normal, doesn't mean we have to like it. LOL! :lol: I'm not too thrilled with the shape I'm in after breastfeeding 3 kids (6 years total.) The thing is, though, it's pregnancy, not breastfeeding, that creates the physical change in shape. So whether you breastfeed or not, they'll never look the same again. :P

Michelle

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I had also read that it was transferred through breast milk - and this made a lot of sense to me as Im coeliac and for the first 3 months of my life i failed to thrive despite my mother thinking i was being breastfed plenty - she then switched to formula (gluten free) and i immediately started to thrive.

re breast shape sure some changes are due to pregnancy but the vast majority of the difference is the breast feeding unfortunately :)

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I had also read that it was transferred through breast milk - and this made a lot of sense to me as Im coeliac and for the first 3 months of my life i failed to thrive despite my mother thinking i was being breastfed plenty - she then switched to formula (gluten free) and i immediately started to thrive.

re breast shape sure some changes are due to pregnancy but the vast majority of the difference is the breast feeding unfortunately :)

Breastfeeding itself has little impact on the shape of the breasts. It's the enlargement during pregnancy that makes the big difference. I got huge during pregnancy and immediately afterward (engorgement). Once breastfeeding was well established, the size reduced and stablizied. The pregnancy growth and engorgement are going to happen regardless of whether a mother breastfeeds or not. Check out this info: http://parenting.ivillage.com/baby/bbreast...0,,3wvw,00.html

Michelle

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actually, if you search pubmed, you'll find a number of studies supporting the theory that the 33-mer that triggers the autoimmune response DOES go through breastmilk. quite a surprising number of studies for something supposedly without research. I posted links to a bunch of them nearly a year ago. this definitely is not a new area of research.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Many babies do much better on formula than breastmilk simply because their mothers aren't properly instructed in just how often you have to nurse a newborn. Most doctors are still telling new moms that they should nurse every 2-3 hours, when in reality, if it's your first baby, you might have to nurse as often as every half hour during the first week!

With my first, I was pumping every 3 hours around the clock--and I did not get a single DROP until the 5th day (thank God, he latched on as soon as there was something in there!). Had the baby latched on before that, I would have assumed that he was getting plenty.

With my second, I let him nurse whenever he wanted, because I was so relieved that he latched on right away. The nurse came in and scolded me for letting him nurse every half hour--she actually said I should let him cry until it was "time." :ph34r:

The doctors and nurses are about as on top of breastfeeding as they are with celiac (in other words, they haven't got a clue).

As far as breastfeeding being something that should be a personal decision--I do wonder about that. I mean, that's like saying that drinking lots of alcohol during pregnancy is a personal decision, or that feeding gluten to a celiac should be a personal decision, isn't it? We KNOW how much better breast milk is than formula. You can make breast milk gluten-free very easily--just stop eating gluten! (And don't forget--cows eat gluten, so milk-based formula would NOT be any more gluten-free than human milk!) Not that it should be compulsive to breastfeed; it's just that people treat the idea so casually, as though it's a choice like what color shirt to wear, when it literally can be a life-or-death decision.

Just ask TCA--she discovered through her meticulous charts that Megan was reacting to the gluten she got from nursing until TCA went gluten-free.

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yes there is massive engorgement from pregnancy and after birth etc but i still dont think its mainly pregnancy that causes the sagging and massive changes to breasts. i was not able to breast feed unfortunately and although mine were massively engorged after birth they went down soon after with no noticeable differences to firmness or shape and no sagging - unlike my friends who breastfed for 6mths plus who complain of having to pick them up to put them into bras. hey perhaps im just genetically predisposed to not have this problem, but i very much doubt it.

im pro breastfeeding (if you can and are comfortable with it - yes its a choice) so i certainly dont think people should avoid it for purely cosmetic reasons! though i think there should be more facts and less mantra which puts unnecessary pressure on women to breastfeed. there are too many breastfeeding nazi's (for clarity im not referring to PP's! just mean generally) and the reality is that plenty of women JUST CAN'T do it regardless of their desire to do so and others pressure that they must or they are negligent mothers.

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yes there is massive engorgement from pregnancy and after birth etc but i still dont think its mainly pregnancy that causes the sagging and massive changes to breasts. i was not able to breast feed unfortunately and although mine were massively engorged after birth they went down soon after with no noticeable differences to firmness or shape and no sagging - unlike my friends who breastfed for 6mths plus who complain of having to pick them up to put them into bras. hey perhaps im just genetically predisposed to not have this problem, but i very much doubt it.

im pro breastfeeding (if you can and are comfortable with it - yes its a choice) so i certainly dont think people should avoid it for purely cosmetic reasons! though i think there should be more facts and less mantra which puts unnecessary pressure on women to breastfeed. there are too many breastfeeding nazi's (for clarity im not referring to PP's! just mean generally) and the reality is that plenty of women JUST CAN'T do it regardless of their desire to do so and others pressure that they must or they are negligent mothers.

I won't get into the politics of breastfeeding here...it's just not the forum for that. But have to say that way too many women get poor support in their breastfeeding efforts...making the transition to successful breastfeeding stressful and difficult. ;)

When it comes to how breasts handle the changes during pregnancy and afterward had a lot to do with original shape and size, heredity and reaction to gravity. After my first pregnancy, my breasts (and the rest of my body) handled all the changes quite well. Same with my second pregnancy. Then came my third baby...a combination of it being the third time 'round, age and the effects of gravity took it's toll. Also ended up with tummy stretch marks that I did not get with the first two. BTW, I went from a C to an F cup, and then even larger with engorgement. My breasts never saw that size again during the breastfeeding period(s) (once breastfeeding was well established). If anything, breastfeeding helped, not exacerbated the problem. :)

Michelle

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I don't have Celiac disease, but my son and husband do.... and I'm expecting our second child soon. My son's pediatric gastro, who is part of Columbia Presbyterian's Celiac Disease Center in NYC, recommended that I breastfeed our next baby and follow a gluten free diet while breastfeeding. And, she recommended starting to introduce gluten around 5 months in very small amounts.

Also, just in case it helps anyone to hear recommendations, they didn't recommend that I follow a gluten-free diet during pregnancy (I'm not celiac). This came from both Peter Green (head of Columbia's celiac disease center) and our pediatric gastro.

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Guest AutumnE

If it were me looking back on our history, I would get genetic testing done through enterolab on him before introducing gluten. I didnt introduce any kind of gluten till she was a year old but not due to gluten since I wasnt aware of it back then. I made all of my own baby food with organic fruits and vegetables. Since we waited till she was six months old to introduce solids (reduces chances of diabetes developing) I didnt have to do cereal. Avocado was her first food and she still loves it, excellent for brain growth. I never fed desserts of any kind like prepared baby food. I always figured fruit was enough of a dessert. I would make it once a week and freeze it in ice cube container size and bag it and label it. Since you only introduce new foods every five days and there are so many different kinds of veggies and fruits and then at 10 months you have meat that time went very fast introducing all the new foods.

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Guest AutumnE
I don't have Celiac disease, but my son and husband do.... and I'm expecting our second child soon. My son's pediatric gastro, who is part of Columbia Presbyterian's Celiac Disease Center in NYC, recommended that I breastfeed our next baby and follow a gluten free diet while breastfeeding. And, she recommended starting to introduce gluten around 5 months in very small amounts.

Also, just in case it helps anyone to hear recommendations, they didn't recommend that I follow a gluten-free diet during pregnancy (I'm not celiac). This came from both Peter Green (head of Columbia's celiac disease center) and our pediatric gastro.

Betsy-I would consider following the gluten free diet. I dont know if gluten would cross the placenta or not but I know you are told to not ingest peanuts if you have peanut allergies in your family while pregnant to reduce the risk of it happening to your child so it sounds like the foods would cross it. It would also make cross contamination less likely for your whole family.

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