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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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samuella

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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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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