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Possible For Young Breastfed Baby To Have Celiac?
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I am exclusively breastfeeding my 4 month old son and I was just diagnosed with celiac. I am going gluten-free immediately, but wondering if my son may already have been harmed by the gluten through my breast milk? He is severely underweight and we've been struggling with this the past couple of months - wondering if that could be a reaction to gluten in the milk? I've read differing opinions on this and can't seem to make sense of whether or not enough of the protein passes through breast milk to affect him. I'm going to ask my doctor for blood tests to check me for any nutritional deficiencies but I was just tested for iron for example and that was fine, so I might be fine in that department (of course won't know until more tests are done) - but I was thinking the other issue is that my breast milk might just suck if I'm deficient, you know?

Anyhow, any been there done that stories?

Thanks! :)

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I don't know how/if your having celiac affects the nutritional quality of your breastmilk, however I just wanted to say that yes babies can be born with celiac. It is genetic but symptoms can show up any time in life. Your children and all your first degree relatives (parents, siblings, etc) should be tested even if they have no symptoms. If the tests come back negative that doesn't mean he won't develop it later in life and you should retest yearly. You can also just decide to keep him gluten free to see if he improves and then "test" by giving him gluten later on.

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This is just my humble opinion.

I did not find out my daughter had Celiac until she was 5, but I knew from the infancy that something was wrong. I breastfed exclusively, pumping every chance I had for those feedings at daycare. She was born at the 50th percentile and by 6 months old she was down to the 4th percentile and flagged failure to thrive. Hindsight is 20/20 and if/when I have another baby, I will be hypervigilant about eating gluten free to ensure my breastmilk is gluten free as well.

Suz

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Yes, birth can trigger celiac for babies just like it can for mothers. Yes, gluten is passed in breastmilk. (Look at the actual research and there really is no controversy about this one.) So, yes, it is possible that gluten is an issue. I hope you find that she does better with you on a gluten free diet as well! (Some babies are also quite sensitive to casein (dairy protein) in mom's diet as well.)

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It's also quite possible and even likely that other members of the household (especially if you have other kids) are getting small amounts of gluten on toys, teething rings, passifiers, etc. Baby chews on books, eats a few cheerio crumbs, other kids kiss him after eating crackers or bread...

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Thanks everyone! We are getting my other son tested and have suggested to my parents and sister that they get tested too. I suppose if the baby starts gaining weight now that I am gluten-free we will now he has an issue with celiac, but do you know how young babies can be tested for it? We have an appointment with a doc next week but I like to be armed with information! :)

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They can test at most any age, but tests are notoriously unreliable under the age of 2. Additionally, if the baby isn't getting any gluten (from finger foods or through your breastmilk) the test is worthless - they can't see if she reacts to something until she is getting that something.

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My daughter had a big problem with cow's milk as a baby - she was getting the proteins through breast milk.

Because the gluten problems are actually with certain proteins... it stands to reason these could pass through breast milk as well.

If your doctor blows you off - find another one who will explore the problem. I was sick for 15 years because I let doctors blow me off.

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My daughter was diagnosed ceoliac about 3 years ago, but looking back I can't help wondering how early her problems started as she had such awful colic when she was a baby. My going off cows' milk seemed to help a lot - if only I'd thought of skipping gluten too! It stands to reason that if foreign proteins from cows' milk can come through in breast milk, then wheat proteins could too. Colic in babies can reduce the whole family to tears! Must be worth going gluten free to see if it helps! Regarding tests, we've found the ones offered here in Sweden hopelessly unreliable - my eldest kept coming up negative or at least not properly positive, but finally got diagnosed as she passes out if she is exposed to gluten. Hard to argue with that. It really irritates me that coeliacs are expected to make themselves sicker on purpose to get a "proper" diagnosis! Just getting better on a gluten free diet doesn't count... I have been known to point out to health professionals that there is no known sickness resulting from gluten deficiency.... ;)

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I'm just wondering how everything turned out? I also wonder, if a BFing mom has celiac and is eating gluten...her BM would maybe not be as healthy? Maybe lower amounts of fat or other nutrients since your own body isn't absorbing nutrients.

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BM is fairly amazing - mom has to be *severely* malnourished for breastmilk to change it's nutrient profile. This is one reason why WHO recommends extended breastfeeding, particularly in developing countries; it gets the babies a bit farther along with better food than may be available to older children/adults.

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I was in the exact same boat a few months back. I was diagnosed with celiac when my son was 5 months and I was breastfeeding too. You can check out the thread I started about it here.

Nothing changed after going gluten-free, sadly. I ended up switching to Alimentum formula (hypoallergenic) and my son (now 7mos) is thriving. Strangely, I found that when I was pumping while introducing the formula, my milk had almost no fat in it (which was not he case when I was nursing my other children). And I wasn't exactly starving to death (I was just a few pounds out of my normal range at that point). It's definitely worth a try to see what being gluten-free for a time will do. For me it didn't help, but it very well might for you.

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Sorry for the delay in responding, folks! Things have been pretty hectic around here!

So one month gluten-free and it's not helped the baby at all. His poops did change within days of me going gluten-free but not sure if that wasn't just a coincidence. I'm noticing some slight digestive improvement for myself, but nothing big. Sigh. I had more blood tests done and apparently I am slightly iron deficient so am taking iron now, but everything else came back good, including zinc and Vit B12. Still waiting for my Vit D. Not sure it's a quality of breast milk issue, unless the low iron could be really messing with it.

We have however discovered he may be tongue tied and upper lip tied, which could be the problem! So we are waiting for an appointment with an ENT and will see from there if we are going to do anything about it. Oh the fun never ends!!

In other news my oldest son, who is 7, tested positive for celiac with the blood test so we are waiting for a referral to a pediatric GI for more testing. And my sister also had a positive blood test! My mom is going to get tested too. I'm not very popular in the family at the moment, hehehe.

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Tongue tie can absolutely prevent baby from getting enough milk. I hope it can be clipped soon!!

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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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