Nursing With Cd

[de caps]

I was told yesterday by an endocrinologist that I should not continue to breast feed because the celiac disease antibodies can be passed on to the baby. My two other children were breast fed and do not have celiac disease. Has anyone ever had any experience in this area? I don't know what to do. My GI doctor never told me to stop. I would appreciate any advise. Thank you.

[MySuicidalTurtle]

You should continue breast feed your baby.

[mothermindy]

I would continue to breastfeed. If your concerned I would get a 2nd opinion from your pediatritian. I really don't see why it would be a problem though.

[Guest zipy]

I'm breastfeeding too and was told that breastfeeding (and this is new research I think) for as long as possible can offset the onset of celiac disease in the baby if they're carrying the gene. So the longer you nurse, the less likely that the gene will express itself in the child, and more likely they'll develope it as an adult as a result of something stressful. Does that make sense? Well, breastfeeding is the best thing you can do for the baby! This goes for all sorts of allergens...not just gluten, the longer you nurse the less likely that the baby will be athsmatic, lactose intollerent, etc. Breast milk is incredible stuff!

[tarnalberry]

I was told yesterday by an endocrinologist that I should not continue to breast feed because the celiac disease antibodies can be passed on to the baby.  My two other children were breast fed and do not have celiac disease.  Has anyone ever had any experience in this area?  I don't know what to do.  My GI doctor never told me to stop.  I would appreciate any advise.  Thank you.

<{POST_SNAPBACK}>

As long as you are eating gluten-free, you are not producing any antibodies to pass through the breast milk. Do continue breastfeeding.

[skoki-mom]

I am a neonatal nurse and I have never heard of such a thing. You don't "catch" celiac disease, seems very odd to me, though I admit very freely I am not an expert! I BF both my kids pre-dx, waiting to see if they are affected. If they are, I'm sure it has much more to do with the funky gene we have in my family rather than BF!

I'm a big advocate of BF, it's the best thing you can do for your baby. I'd keep it up until you have more info because you don't want to lose your milk supply...

[de caps]

Thank you so much to everyone who responded. I'm going to continue to BF because I know it's best for my child. I really appreciate all your support.

[mommida]

Watch your diet, maintain the strictest gluten free diet possible. Breastmilk does contain antibodies from the mother.

I breastfed my daughter before both of us were diagnosed. She lost weight rapidly after she was weaned, and the affects of Celiac began rapidly taking it's toll on her. The fat of breastmilk is the most digestable fat for your child, it obviously kept my child healthier being breastfed even though it was a Celiac to a Celiac. Not to mention the emotional bond effect on health.

Good luck on your breastfeeding, and sometimes you have to follow your instincts on what is best for your child. As long as there is weight gain and growth, wet diapers, and normal b.m.'s you are doing great.

Laura

[Merika]

You CANNOT GIVE someone celiac, except via sperm and egg and DNA creation.

Breastmilk contains ALL the antibodies you make to everything. This means that if you test positive on a blood test to celiac, that your nursing child could test positive to celiac. THIS DOES NOT MEAN YOUR CHILD HAS CELIAC. As your antibody levels to celiac drop in your own body, they will correspondingly drop in your child.

Doctors are notoriously un-educated about breastfeeding. Medical schools do not teach it. Doctors give out the old wives tales they have heard as a child, and these vary wildly from doc to doc.

Keep breastfeeding. You know this doc is full of whooey on this topic and your first two kids are evidence of it. He may be otherwise wonderful....

Merika

[Guest nini]

ABSOLUTELY KEEP BREAST FEEDING... that is the best food you can give your baby... That Doc needs an edu'ma'cation... if u ask me! LOL!

[AmandaD]

Unreal. I'm also a breastfeeding mom - predx'ed I breastfed my daughter for a year and a half and my son for a year. i've been breastfeeding my newest daughter (age 1) and found out last week that i have celiac. i would totally keep breastfeeding, i still do because i've heard it can completely delay or prevent celiac disease.

I was told yesterday by an endocrinologist that I should not continue to breast feed because the celiac disease antibodies can be passed on to the baby.  My two other children were breast fed and do not have celiac disease.  Has anyone ever had any experience in this area?  I don't know what to do.  My GI doctor never told me to stop.  I would appreciate any advise.  Thank you.

<{POST_SNAPBACK}>

[Generic]

I also breast fed both my children. I was a dx celiac at the time, they are both very healthy. My mom also breast fed me. Shortly after weaning me i developed the celiac. The celiac comes from my dad's side of the family.

[Nicolette]

Keep breastfeeding. I have four children and i breastfed them all, including the set of twins in the middle. My last child, I breastfed for nine months and i only stopped because his teeth came through!

[Stephanie1]

I'm breastfeeding my 2 month old now and have blood work testing positive for celiac disease, still waiting on the biopsy. I was told to begin using infant vitamins including iron because I've had severe anemia and lots of weight loss. (Still having trouble keeping all foods down even though I've been gluten-free for almost a week) My milk supply has gone down a little due to I think lack of nutrients in my own body, but my daughter isn't fussy and seems to still be getting enough so both my pediatrician and GI said to continue as long as possible. Hope everything keeps going well...has anyone else used baby vitamins? I really hadn't heard of them being necessary before now...

[Merika]

Stephanie,

Are they recommending the infant vitamins for you or your dd? I'm confused. Iron supplements, IMO are a bad idea for a child. If they are worried about her iron levels, they should check hers, not make assumptions based on you. Generally, an exclusively breastfed child will get all she needs from you. She will draw your iron reserves down to nothing before she starts to suffer herself.

Studies have been done on infants and mothers in starvation times in Africa and India and show that the breastfed infants are remarkably healthy (until weaned) even if the mothers were not eating and basically starving. The human body is a remarkable being.

For information on supplements, check out www.kellymom.com and www.lalecheleague.org

Take care of yourself,

Merika

[CeliacMe]

THE DOCTOR WHO TOLD YOU TO STOP BREASTFEEDING BECAUSE THE BABY CAN "CATCH" CELIAC, IS THE STUPIDEST PERSON ON THE FACE OF THE EARTH. YOU NEED TO SWITCH DOCTORS! RUN FAR, FAR AWAY FROM THIS GUY!

[Stephanie1]

Thanks Merika!

They recommended the infant vitamins for my daughter (2 mos) It was really me that was worried to start with and I brought it up to the pediatrician just to make sure that we were doing things right. That's when he said taht we could supplement her with the infant vitamins and too look for ones with iron...but thanks for the information! Like I said, she seems fine, but I didn't want her to be lacking...now I know she's probably not!

[WRowland]

Okay, first things first.

My celiac was probably activated by a life threatening and high drama pregnancy. By the time I was six weeks pregnant I had gone thru 9 doctors who told me that if I didn't abort immediately I would DIE in days, not weeks. Then I found one that promised that he could get me alive thru a dangerous pregnancy with a live baby. (My daughter just turned 22.) I will love him forever. My daughter was born 7 weeks premature. I worked in neonatal intensive care for ten years. I knew that the neonatologists would crawl on broken glass to get a mother to breastfeed a premie. It makes that big a difference. That same beloved obstetrician told me before delivery that I would not be able to nurse my daughter because the drugs I was taking to give both of us a chance to survive would come thru my breastmilk. I was crushed. But I was also suspicious. I did my own research. I realized that I was not talking to the right doctor. I went to the neonatologists, who shrugged and said "no problem, we just need to watch the glucose closely the first 24 hours-no sweat". I nursed my daughter until she weaned herself at two, inspite of many problems.

All doctors know a little about a lot, and a great deal about a narrow range of subjects. You have to ask the right question of the right doctor. The same neonatologist who told me "no sweat", didn't have a clue how to help my milk supply come in after I delivered, was abruptly pulled off the medication, sending my kidneys into shock and blew up like a balloon. I needed a nursing nurse to help with that, and she was only half of the solution. I ended up getting my best info from LaLeche League and their panel of experts. I would consult them immediately. I bet they have a website.

Again, ask the right question of the right doctor. Even pediatricians are sometimes pathetically ignorant. They's give lip service to "breast is best", but are clueless when there even a minor problem.

So let's break down your question, one step at a time:

The endocrinologist is probably giving you real information, but incomplete.

Endocrinologist, not GastroEnterologist or Immunologist, etc. is a tip off here.

IF YOU HAVE HIGH LEVELS OF CIRCULATING ANTIBODIES IN YOUR BLOOD, they MAY also be in your breast milk if they are IG A type. IG G type are generally too large to cross into breast milk. Even iff they are present the level may not be high enough to be significant.

IF THOSE ANTIBODIES ARE PRESENT, they MAY react to the lining of your baby's digestive tract in a similar way that they affect you, almost. They may cause some mal-absorption of nutrient when present. BUT, they are not being produced continuously from your baby's immune system, and they are being denatured at some level by the baby's stomach acid, it's reasonable to expect that the effect would be much diminished compared to you. EVEN IF IT WAS CERTAIN that the baby's absorption was being altered, the benefits of breast feeding probably still outweigh the risks. Breast milk is a powerful survival advantage for all infants, but especially for a potential celiac. It contains maturation factors that help seal the intestinal tract to keep large molecules from crossing into the blood stream during the first year of life.

CELIAC IS NOT PRIMARILY A SYSTEMIC, ANTIBODY-MEDIATED DISEASE. It is more accurately described as a localized, auto-immune disease. The bulk of the damage is caused by lymphocytes infiltrating the lining cells of the small intestine and causing localized physical erosion. If the erosion lasts long enough, the potential for complications exists. But remember, how much exposure is required to develop this level of disease. Many on these forums were quite symptomatic and very ill for many years, if not decades and they're still here, and still have the capacity to heal completely. The antibodies are associated with a small part of the disease in it's most severe form. But if you are not eating gluten, your milk does not contain gluten, and your baby will not react to gluten by sending her lymphocytes to damage her small intestine.

WHY DO YOU HAVE CIRCULATING ANTIBODIES ? is a serious question. It implies that you was still consuming hidden gluten. This is a management question for both you and your baby. When you manage your exposure, your antibody levels should fall to zero in your blood, and thus in your milk. IT may be enough to monitor your exposure (monthly ?) while your are nursing to insure that your levels are dropping and staying low.

HAS YOUR NUTRITIONAL STATUS BEEN EVALUATED ? Many celiacs need some form of vitamin/mineral supplementation in the first years after diagnosis. Pancreatic insufficiency is also common, so that digestive enzyme supplementation is also helpful. Especially amylase with glycoamylase and galactosidase. The baby may also need some additional vitamin/minerals to compensate for low level mal-aborption. Your malabsorption may be more important than your baby's. If you aren't absorbing nutrients, they can't get into your breast milk, and can't get into your baby. These are management issues not deal breakers. Don't give up on what you want because the doctor isn't willing to say he doesn't know how to manage this, or too lazy if he does.

I am trying to put this into perspective for you. Both you and your baby deserve to have a choice here. Neither this disease, nor any doctor should take that choice away. There are good reasons to hang in there, work it out and keep nursing. There are also good reasons to let it go, if it's too much to manage. But you, and only you know how much you want it, how much you are willing to do to have, and when it's too much for you and your baby. You need true expert advice to make these decisions, not half-truths.

[hafadai43]

I would definitely breast feed your baby. As skoki mom said, you can't "catch" celiac disease. If you have it in your genes, it's there for life, but you cannot just catch it from breast feeding or anything like that. Even if you have celiac disease, breast feeding is one of the healthiest things you can do for you and your baby. I am certainly going to breast feed my little miracle when he/she gets here....but that's not for quite awhile! I'm only 2 months along. Just make sure you watch your diet!

Rachel