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Breastfeeding A Possible Celiac
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14 posts in this topic

Hope I am doing this right - not real familiar with this BB format.

My 18 mo son was just diagnosed with celiac disease. He is currently failing to thrive, but we are so grateful to have some answers and a direction to help him. Since his diagnosis, many pieces of the puzzle have seemed to come together and we strongly suspect that my husband also has this condition, although we haven't had a chance to get him tested yet.

I am currently 21 weeks pg and it is my understanding that this condition has genetic ties, meaning that our new baby may also have this. I nursed Carter until he was 13 months and I am intending to do the same with our new arrival, but I am wondering if I will need to follow a gluten-free diet while nursing and also how soon we will be able to test the new baby to find out if s/he has it.

TIA!

Maclaine

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Gluten can be passed through breastmilk. So that is definately something for you to take into concideration while you breastfeed. You should also be following a gluten free diet if your baby does indeed have Celiac Disease. Otherwise you will be causing them conciderable damage. :)

Best Wishes!

-Jessica :rolleyes:

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Just wanted to clarify, when you said that I should be following a gluten-free diet, did you mean that I could be passing gluten to my unborn child? or were you meaning that Carter needed to be 100% gluten-free?

We are actually a family of 6 soon to be 7. With Carter still being so young, and gluten-free being somewhat more expensive, he is currently the only one Gluten-free.

Thanks for your help!

Maclaine

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This might be a REALLY dumb question but....Everyone is saying gluten can be past through breastmilk. How about cows milk? Should we not be drinking normal milk?

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I am not sure about being gluten free with an UNBORN child. The child could be carrying the genes, however it takes something to "set" the genes into action. Most likely the unborn baby hasn't had any sort of stress to set the genes into action yet. That would be a really good question to ask your doctor. Just from my own research I wouldn't see why you would need to be gluten free during pregnancy if you are NOT celiac. But do check with Doc.

If you are breastfeeding a Celiac Child you MUST also be gluten free. You will do damage to their tiny systems otherwise.

Cow's milk doesn't seem to be a problem for us. With the exception of when you first begin the healing process. Possibly a different process seeing as we are humans and well cows are cows! :D

Just my two cents!!

-Jessica :rolleyes:

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I am a celiac and was recently contacted by a relative on my husband's side with a question about her baby. She was told that her baby tested positive for celiac desease (blood test results) and she asked me if she could be passing gluten to the baby through her breast milk. I really wasn't sure about the answer, so I told her I would go on line to see if I could get some info. I must admit I didn't think I was going to see a posting regarding gluten being passed into breast milk. So, this is absolutely true then?

Gina

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We have a GI appt tomorrow morning and then an appt with a children's nutritionist hopefully next week. Truthfully, I have gotten conflicting information on this. Based on my experience with my ds, I tend to think that you can actually pass gluten through breastmilk - however I don't have ANY medical information to back that up.

Watch this thread because I am going to pin down an answer (woman on a mission) and when I do, I will post and let you know.

Maclaine

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Gina,

It certainly seems to be true in some cases. My layperson's view on the issue is this: In order for a "foreign" substance to appear in breastmilk, it must be absorbed into the milk from the bloodstream. Food proteins are NOT normally found in the bloodstream, at least in quantities expected to cause difficulties. However, if a breastfeeding mother has a leaky gut for any reason, even a mildly leaky one, enough gluten could pass into the bloodstream and be transferred to the breastmilk to cause a reaction in her nursing baby. For the baby's health, it is best to assume that the mother's gut integrity is not perfect and that gluten WILL be present in the breastmilk, so a mother nursing a celiac baby should DEFINITELY avoid ALL gluten herself. From personal experience, I know that both of my babies reacted to any hint of dairy products in my diet, and I see no reason why gluten would be any different in principle.

I hope this helps, and good luck to your relative and her baby!

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Thanks for the quick reply to my question about gluten in breastmilk. I hope woman on a mission will have more information about this. Thanks again ladies, I will let my cousin know of the recent info.

Gina

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My primary teeth were almost black. They would have formed before I was born. My mother did not take anything like tetracycline while whe was prgenant.I think my mother has nonsymptomatic celiac. I wonder if a leaky gut could leak gluten into the blood and into an unborn baby. I have two alleles for celiac.

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As a celiac who is due to deliver any day now, I'd like to pass on the advice given to me from my gastro. Maybe you will find some of this helpful.

1. Do not test the baby immediatly upon birth. The baby will have my blood make up and will therefore test positive for Celiacs when the child may not have it at all.

2. At some point in time the baby will need to be tested, but there is no need to test the young infant unless the baby is having problems such as failing to thrive, etc.

3. I need to maintain a gluten-free lifestyle during and after pregnancy for me (the only diagnosied Celiac in our immediate family.) All products used on the baby will be gluten-free for me. I have contact issues too.

3. When I have had a gluten ingestion reaction while pregnant, the baby is a wreck for about two days. It takes a full week for reactions to run there course in me. (What I mean about the baby is when I have an ingestion accident, the baby acts drmatically different for two days - kicks hard, restless, I have lots of pains, etc.) So I know this baby will be breast feed, but will have to have supplements of formula in the event that I have another gluten ingestion while nursing. The idea is at least I can give formula during my reaction so the baby doesn't suffer.

4. As for the delivery, according to the gastro, all IV medications are safe whether they are gluten free or not. The only way I will have a gluten reaction is to ingest the gluten. Gluten in the blood stream is not going to cause harm. (This still makes me uncomfortable, but I trust this doctor.)

5. So for me (the celiac), I get to pack my clothing bag, pack a cooler, pack my normal medications, and then head to the hospital for the delivery. I am not looking formward to the hospital since I believe they will gluten me! The OB doctors have been less than helpful regarding the celiac concerns and it is too late to switch OBs.

Best of luck with the newest addition to your family!

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hap2begluten free - Good luck! I wish you a happy and healthy baby and delivery.

I tried finding the answer to this question through LaLeche. I could not find any article pertaining to gluten being in breast milk. There are studies saying that breastfeeding strengthens a baby's gut and could possibly delay onset of Celiac. MY clonclusion from the lack of information. If there is any chance that the nursing mother might be Celiac. She should avoid gluten. Anti bodies are in breast milk. Whether or not the specific Celiac reaction antibodies are there, I could not find any article to say. If you are going to supplement fromula make sure it is gluten free. I found Enfamil formula on a gluten free list. (That was over a year ago so check with the manufacturer's.

As a breast feeding mother you are going to notice your chid will respond differently at feedings depending on your diet. I would reccomend keeping a food diary for a referencence.

I have not been officially diagnosed with Celiac my daughter has been (17 months). We reacted to the same meals before diagnoses, and have had such an amazing recovery on a gluten free diet.

Go moms!

Laura

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I can't site them but I have read a lot of information that does say gluten is passed through breast milk. Human bodies are very different than those of cows. Humans can pass it through but cows can't.

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Hi I'm new here. My daughter who has celiac is 5 years old, but was nursed until she was 16 months old. So this topic interested me. We did not get a diagnosis until she was 3, but she never had any related issues while nursing.

If you do a quick google search you'll find lots of good information. The general thought seems to be that nursing would actually protect a baby who has celiac disease even when gluten is introduced (so antibodies wouldn't be produced in reaction to the gluten) and that the mother does not pass gluten through her milk.

Here are a couple of links:

http://www.nuworldfoods.com/glutenfreeandm...l_free.asp#ANS7

http://www.celiac.com/st_prod.html?p_prodid=381

http://www.csaceliacs.org/library/breastfeeding.php

It's so frustrating because so much about celiac disease is still debatable and differs from specialist to specialist. So I think we have to be careful about what source we trust.

Good luck! I have nursed 4 babies, and would go gluten-free myself if I had to. :)

Nicole

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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