[mom2two]

My DD has celiac. Neither my husband nor I have celiac but obviously one of us is a carrier. I just had a baby 7 weeks early and I was eating gluten free for the baby and I told the NICU NOT to give him anything with gluten. Well...I went in to visit him today and they have put him on a calorie fortifier to help him grow faster and IT HAS GLUTEN. I am not happy but they say he really needs it and, while there are ones without gluten, this is the one he needs to grow and get out of the NICU. Should I let them continue to give it to him? Should I continue to eat gluten free for him since I am nursing or is the damage done since he's had gluten now? I don't normally eat gluten free.

Thanks for any input.
Kristen

[Fiddle-Faddle]

Congratulations on your newborn--I'm sorry you're going through so much stress right now.

Is there ANY way you can pump your milk right now and have them give it to the baby? Studies have shown that moms of preemies produce a very different kind of milk--high calorie, easy to digest, and EXACTLY what preemies need. It must be very difficult for you right now, with other responsibilities, but right now, it's the best thing you could do for your baby, and might make the difference between health and lack-of-good-health. It also ups the chance that you might be able to breastfeed the baby once the suck reflex is strong enough, and that will make a world of difference for your baby.

My first was a 4 1/2 pounder, and I had to pump for 5 days (every 3 hours) before I got a drop, but I'm SO glad I did. In his case, I strongly believe it saved his life (long story), as did wearing him skin-to-skin.

Keep an eye on things, and if there is ANY change for the worse, make a HUGE fuss. Talk to a pediatric GI, too (your older child saw one who diagnosed him, right?), and have them talk to the NICU for you.

Best of luck to you and your little one, dear, and please keep us posted.

[mom2two]

Thanks for the response Fiddle-Faddle. I should have put that I am pumping every 3 hours and it is actually going quite well. They are adding the fortifier to my brestmilk at every feeding. He is taking both mixed together through his feeding tube. I feel like pumping is about all i can do for my little guy right now.
Kristen

[lovegrov]

Whether or not your infant ends up with celiac, gluten is highly unlikely to have any negative effects at this stage. Your child is not going to develop celiac at this early age. I'd follow the NICU advice.

richard

[lizard00]

Yeah, I think at this point, it's highly unlikely to cause any damage.

He may not even have a celiac gene (unless you know what you and DH's genes are). As it was, I was dbl DQ2, which puts me in the highest risk factor to develop celiac. I ate wheat ALL the time, but it wasn't until my son was born that celiac was triggered.

I know your worried about him having celiac, and it's valid, but right now, in the NICU, trust those doctors. Explore celiac later, when he's home and healthier.

I hope things progress and you get your little one home soon!!

[ravenwoodglass]

Do let them know your concerns but I agree that it is unlikely to be an issue. They will be monitoring his weight gain and losses on a daily basis and if he does not appear to be thriving on the formula then they will switch it.

[Fiddle-Faddle]

 mom2two, on Jan 4 2009, 08:44 PM, said:

Thanks for the response Fiddle-Faddle. I should have put that I am pumping every 3 hours and it is actually going quite well. They are adding the fortifier to my brestmilk at every feeding. He is taking both mixed together through his feeding tube. I feel like pumping is about all i can do for my little guy right now.
Kristen

Good for you! That's wonderful!

You might want to speak to someone from your local La Leche League, or the hospital lactation consultant, or both (just like doctors, they vary in knowledge and experience). I found that the NICU staff was NOT knowledgeable about feeding issues--they gave my son a preemie nipple because they said he was too weak to suck on a regular one, let alone on a human breast. The lactation consultant came in the same day, checked his sucking reflex, and said it was stronger than most full-term babies she'd seen!

The doctors/nurses also told me to nurse every 2-3 hours. Again, the lactation consultant knew way more about it than they did. My baby (like most newborns) needed to nurse every 90 minutes, sometimes less. My second nursed every 20-30 minutes for the first 2 days (but went much longer periods without during the night).

Keep in mind, though, that my experiences were over a decade ago. Hopefully, things have changed and medical personnel have learned a bit! (Though I keep reading things that indicate that they haven't....

Yet one more thing for you to research is vaccines. They DON'T vary the dosage of vaccine by weight of the baby, so my preemie got 4 full-dose vaccines the day of birth!

If I knew then what I know now, I would have delayed ALL of those vaccines (none of them were necessary for a newborn, newborns are NOT at risk for hepatits B,for example, unless they are sharing needles or having sexual contact with someone!) until later, and then only let them give him ONE AT A TIME. Some (like the flu shot) I would have turned down altogether, as it contains thimerosal (a mercury-containing preservative that is clearly linked with neurological disorders).

www.nvic.org is a good place to start for research.

[mom2two]

Thank you everyone for your input and advise. I really appreciate it.
Kristen

[Beth41777]

I just found this: I was quite surprised!

Breastfeeding a Child With Celiac Disease
Some mothers continue to breastfeed well into toddlerhood, at which point some children have already been diagnosed with celiac disease. Because gluten eaten by the mother can be passed on in her breastmilk, a mother who is nursing a baby or a toddler with confirmed celiac disease needs to maintain a gluten-free diet.

If neither the baby nor the mother has confirmed celiac disease, the mother should continue to eat gluten, even if there is a history of celiac disease in the family, because there is a chance that exposure to gluten in breast milk will actually help the baby to develop a normal immune response to gluten.

Sources:

Agostoni C et al. Complementary feeding: a commentary by the ESPGHAN Committee on Nutrition. Journal of Pediatric Gastroenterology and Nutrition 2008;46:99-110.

Prescott SL et al. The importance of early complementary feeding in the development of oral tolerance: Concerns and controversies. Pediatric Allergy and Immunology 2008 Feb 9 [Epub ahead of print]

Guandalini S. The influence of gluten: weaning recommendations for healthy children and children at risk for celiac disease. Nestle Nutrition Workshop Series Pediatric Program 2007;60:139-51.

Carlsson A et al. Prevalence of celiac disease: before and after a national change in feeding recommendations. Scandinavian Journal of Gastroenterology 2006;41:553-8.

Norris JM et al. Risk of celiac disease autoimmunity and timing of gluten introduction in the diet of infants at increased risk of disease. Journal of the American Medical Association 2005;293:2343-51.

Akobeng AK et al. Effect of breast feeding on risk of coeliac disease: a systematic review and meta-analysis of observational studies. Archives of Diseases of Childhood 2006;91:39-43.

Jackson KM, Nazar AM. Breastfeeding, the immune response, and long-term health. Journal of the American Osteopathic Association 2006;106:203-7.

Ivarsson A et al. Breast-feeding protects against celiac disease. American Journal of Clinical Nutrition 2002;75:914-21.

Chirdo FG et al. Presence of high levels of non-degraded gliadin in breast milk from healthy mothers. Scandinavian Journal of Gastroenterololgy 1998; 33: 1186-92.

Troncone R et al. Passage of gliadin into human breast milk. ACTA Paediatrica Scandinavica (Stockholm) 1987; 76: 453-6.

[Beth41777]

ON THE OTHER HAND A book I have (written in 2002) says new research indicates early exposure to gluten in children less than 4 months of age may be a trigger of celiac disease. (Wheat Free Worry Free By Danna Korn)

Another book Celiac Disease A Hidden Epidemic written by Peter H R Green M.D. the Director of the Celiac Disease Center at Columbia University says delaying the introduction of gluten until four months of age while still breastfeeding may be beneficial or protective to genetically predisposed children.

[Mother of Jibril]

My son was exclusively breastfed for the first six months of his life, yet he still developed symptoms of a severe intolerance to casein... just from the proteins getting through my breastmilk! Once I cut dairy out of my diet he went back to normal.

Whether there's a history of celiac disease in your family or not, nobody should be fed solid foods until they're at least four months old. It takes a while for your body to start producing digestive enzymes. If you don't digest the food then it just sits in your system... and that's when problems like allergies, autoimmune disorders, and bacterial imbalances can begin.

[Beth41777]

Last but not least, According to Living Gluten Free for Dummies (Danna Korn) "University of Colorado Scientists have published information indicating that exposing babies to gluten in the first three months of life increases the risk of developing celiac disease fivefold. Their studies indicate that waiting untill the baby is at least 6 months old decreases the risk, but waiting beyond seven months increases the risk again. In other words, the best time to introduce gluten is between 4 and 6 months of age.

I pray for health for you and your baby. Remember that even though your little one has been exposed to gluten, that of course does not spell disaster necessarily, and even it the outcome is Celiac, God will give you strength to deal with it. I hope there is an alternative (a gluten free one) for your little one to get the necessary nutrition!

[home_based_mom]

 Mother of Jibril, on Jan 12 2009, 04:22 AM, said:

My son was exclusively breastfed for the first six months of his life, yet he still developed symptoms of a severe intolerance to casein... just from the proteins getting through my breastmilk! Once I cut dairy out of my diet he went back to normal.

Whether there's a history of celiac disease in your family or not, nobody should be fed solid foods until they're at least four months old. It takes a while for your body to start producing digestive enzymes. If you don't digest the food then it just sits in your system... and that's when problems like allergies, autoimmune disorders, and bacterial imbalances can begin.

FWIW, when my daughter was born, I was told that each baby differs slightly in the age they are ready to accept solid foods. The way to know when your baby is ready is to watch the tongue. As long as the baby keeps moving the tongue towards the front of the mouth and out, they are not yet ready. Somewhere in that 4-6 month range, or maybe even a bit later, they will begin to move the tongue in the opposite direction, indicating that the digestive tract is now developed enough to begin processing simple solid foods. I thought that was really cool - babies tell us a lot even without knowing it!

[curiousgeorge]

How is he doing now? I saw you posted this a few days ago. My oldest was a NICU baby too but for different reasons. He had a bunch of food allergies as a small child and I really think it had a lot to do with the things they gave (food/drugs) him in the ICU. I would really see if they can use the other option. Ask for a GI consult etc. Celiac is triggered by stress, is not beig born a premie stress. I just can't see giving gluten to an immature digestive system when he has a young sib with celiac Is there anyway you can get them to gene test him? I would def continue eating gluten-free while your nursing.

On the soild food, my dd reached over at 2 months and grabbed a handfull of macaroni and shoved it in her mouth and chewed it. She knew exactly how to eat and waht she wanted. She completely refused any baby food when we finally gave her food. She didn't get any teeth until she was 14 months either

[bette spada]

Thank you for all the information my daughter is 22 years old, a celiac and is trying to have a baby. She miscarried in November, she did not know she was pregnant. She had sever pain went to hospital and found out see was pregnant and she had lost it all at once. She was devistated.

I knew we would have to be careful about concerns with the baby having celiacs but I did not realize the effect of immunizations and that premees are given a full dose of them.

Are we able to stop the hospitals from giving those shots?