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Hello all,

I am new here and new to celiac disease... there sure is a lot to learn!

I am still breastfeeding my daughter (just turned a year old). They suspect that she has celiac. She has been gluten-free for almost 3 weeks now and we have seen a huge improvement. She has already started to gain weight and is sleeping better and eating better for that matter. My question is: given that she is gluten-free and she is still breastfeeding do I need to be on a gluten-free diet as well? Does the gluten that I eat affect her in any way? I have continued to eat gluten because she seems to be doing alright but our pediatrician said that any amount of gluten in her diet can cause damage to the intestines and I'm not sure if that includes from breastmilk...

Thanks for your help!!

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Welcome to the group!

My son was exclusively breastfed for the first six months. During that time we figured out that he's extremely sensitive to casein... the amount that was getting through my breastmilk was enough to give him colic, diarrhea, projectile vomiting, and make his intestines bleed :( Once I took dairy products out of MY diet he recovered within a few weeks.

So... definitely, you should be on a gluten-free diet too as long as you're breastfeeding. You might be surprised what it can do for your health too :)

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My son also had severe symptoms while he was exclusively breastfed. He would spit up all the time, and had the stinky malabsorption poop. Sorry if too much information, but if you're serious about continuing to breastfeed and keep your daughter gluten free, you should be gluten free as well.

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I read a study a year or so ago that gluten IS passed in breast milk, so yes, you do need to be gluten-free.

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We were just at the Ped. Gastroenterologist on Wednesday at a prominent Children's Hospital for my daughter's "issues". She is 13 months old and still breastfeeding.

No growth or new teeth since 7 months old, sleep has started to go downhill (she was sleeping in 3-4 hour chunks at night, started waking every 40 min to 1.5 hours) and has major food intolerances since 1 month. These food allergies (10 different foods) were confirmed by a registered allergist and are cell-mediated allergies (delayed reaction); all food contact only through my breastmilk. Through these allergies we had eliminated wheat, rye, spelt and barley, but were still consuming kamut and had not eliminated the trace amounts from x-contamination or gum, spices, etc.

After 3 weeks of both of us being completely gluten-free Joy has grown 1", 1 shoe size and has 1 tooth cutting through with 3 more on their way.

Our Ped. GI Doc sayed gluten most definitely crosses through breatmilk.

Hope that helps,

Stephanie wheat, rye free 11/07, gluten-free 1/09

mother of 3 gluten-free kiddos, ages: 4.5, 3, and 1

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I breastfeed my son who has celiac dx until he was 11 months old and I definetly think gluten passed through (Although at the time we did not know it, it is very apparent now that he has been gluten free). When he was exclusively breastfeed he had so many problems that have now gone away. For me, I enjoyed the bond of breastfeeding enough that I would have given up gluten if I would have known. The fact that you have breastfeed this long, I have now doubt that if you want to continue to breastfeed you can make the diet change successfully.

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Thank you all for your replies, they are very much appreciated. It is nice to know that other people are going through the same things as we are.

My daughter is just getting over a UTI and has just finished her antibiotics. The side effects of the antibiotics (Septra) that she is on are gut issues. That said she has been waking up at night with gas and bloating. I am not sure at this point if it is due to the drug side effects or if it is the gluten in my diet. I am giving the drug a few days to come out of her system and see how she does. If she is still having gut issues towards the end of the week then I will definitely go on a gluten-free diet as well.

I have no issue being on a gluten-free diet if it means that I can continue to breastfeed. A few months ago before celiac was even a possibility I was on a dairy and soy free diet. I had no idea how many products contain hidden dairy and/or soy. I did that for almost 2 months, so I am no stranger to changing my diet for the sake of breastfeeding. I also really enjjoy the bond. It is also a sure-fire way for her to get calories. She isn't a big kid and not the greatest eater. I want to ensure that she gets enough calories in a day and the only way to do that at the moment is to continue to breastfeed her.

Again, thank you all for your replies and words of wisdom!

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Thank you all for your replies, they are very much appreciated. It is nice to know that other people are going through the same things as we are.

My daughter is just getting over a UTI and has just finished her antibiotics. The side effects of the antibiotics (Septra) that she is on are gut issues. That said she has been waking up at night with gas and bloating. I am not sure at this point if it is due to the drug side effects or if it is the gluten in my diet. I am giving the drug a few days to come out of her system and see how she does. If she is still having gut issues towards the end of the week then I will definitely go on a gluten-free diet as well.

I have no issue being on a gluten-free diet if it means that I can continue to breastfeed. A few months ago before celiac was even a possibility I was on a dairy and soy free diet. I had no idea how many products contain hidden dairy and/or soy. I did that for almost 2 months, so I am no stranger to changing my diet for the sake of breastfeeding. I also really enjjoy the bond. It is also a sure-fire way for her to get calories. She isn't a big kid and not the greatest eater. I want to ensure that she gets enough calories in a day and the only way to do that at the moment is to continue to breastfeed her.

Again, thank you all for your replies and words of wisdom!

You can do it!

We are still breastfeeding at age 2 and found out through breastfeeding at 12 weeks gluten was an issue. We though know that breastfeeding can throw off tests because of its healing nature so scopes cant be done till your not nursing anymore unless there is allot of damage.

Keep up the great work!

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Reading this topic has brought yet again another revelation for me. My daughter was born by emergency c-section (breech birth and pre-eclempsia.) I really believe that both of us were emotionally and physically traumitised.

I had a horrible time getting her on the breast and after frustrating her and bearing the pain (again, I had just been fileted), I decided to pump. Things were fine until my incision got infected. I had to feed her stored breast milk while I took antibiotics.

She developed horrendous colic by about three weeks. After many weeks of watching her suffer and cry constantly, I began to realise that every time I ate dairy (or tomatos or oranges or spices or chocolate) she would react to it. NOT that I ate much of anything spicy or acidic or full of caffeine, but you get the point. It seemed like no matter what I ate, she cried. Finally I ate only dried fruits, raw nuts, and water for a few days and she started to improve. I added meat proteins and some mild fruit, but could not have even one small pat of butter or she would pull her knees up and howl in pain. This went on til she was 3 and half months old, then suddenly stopped.

By the time she was 7 months old, my milk just simply dried up--couldn't pump more than a drop or two. We started her on formulas, and had an awful time finding one that she could tolerate. We eventually put her on Carnation, which she seemed to do ok on.

When it came time to introduce grains, she would only eat the simple rice cereals for the longest time, then sweet potatos. She was very slow to go on to solids and would get constipated a lot, which continued well into her youth.

By 18 months old my daughter had begun to have terrible phobias, which I will not detail, but now that I look back on I am nearly convinced had something to with her celiac.

Now, my point (yes, I do have one :) ) is that not only are you all very lucky to be able to continue to breast feed, but that I also agree completely that everything the mother ingests will affect the child on some level. And lest we forget, celiac is a genetic disorder/disease, so your child was born with it. Unfortunately, babies can't tell us what's wrong, so they cry. Fortunately, they don't remember the pain or suffering.

Good for you for being so committed to your children's health and well-being!

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Just wanted to throw in my .02. Gluten DEFINITELY passes through breastmilk. We started the gluten-free diet for my older son when my younger was just a couple weeks old. I noticed the younger one (exclusively BF at the time) started having stinky orange poop - definitely not the usual yellow mustard-seed breastfed baby poop. I took glutens out of my diet - it went away. Then I purposely introduced gluten again - same reaction. Stinky, orange poop (and a lot of it). That's when I permanently went gluten free. My older son had diagnosed allergies to soy, dairy, and eggs, so I was also off those as well (turns out youngest is sensitive to those as well).

Being on a restricted diet is hard, believe me I understand! :D But as you know, SO worth it when you know you're giving your baby the absolute best start in life that you can give. Keep up the good work, mama!

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Just wanted to throw in my .02. Gluten DEFINITELY passes through breastmilk. We started the gluten-free diet for my older son when my younger was just a couple weeks old. I noticed the younger one (exclusively BF at the time) started having stinky orange poop - definitely not the usual yellow mustard-seed breastfed baby poop. I took glutens out of my diet - it went away. Then I purposely introduced gluten again - same reaction. Stinky, orange poop (and a lot of it). That's when I permanently went gluten free. My older son had diagnosed allergies to soy, dairy, and eggs, so I was also off those as well (turns out youngest is sensitive to those as well).

Being on a restricted diet is hard, believe me I understand! :D But as you know, SO worth it when you know you're giving your baby the absolute best start in life that you can give. Keep up the good work, mama!

I went on a gluten free diet while breastfeeding my second child because my first child had celiac and actually weaned himself (probably because my milk was harming him) by the time he was 4 months old. I wasn't going to take any risks w/#2. And what I learned from it is that I actually feel a lot better on a gluten-free diet. My symptoms were so mild I didn't notice until I went off and then back on gluten. So if you go gluten-free for the sake of your child, pay attention to how you feel as well. After all, the disease is genetic and it had to come from somewhere. (I still don't know if #2 is gluten-sensitive but there is some evidence indicating she is. I just keep her gluten-free to be safe and because it's easier for #1.

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So I did go on a gluten-free diet and it seemed to help. Not too long after going on a gluten-free diet our pediatrician suggested that I supplement with formula to help her gain some weight. She decided after getting some formula that she didn't want to breastfeed anymore and she weaned herself. I was pretty disappointed. It is the right thing for her though as she has started to gain weight really well since being on the formula.

I went on a gluten free diet while breastfeeding my second child because my first child had celiac and actually weaned himself (probably because my milk was harming him) by the time he was 4 months old. I wasn't going to take any risks w/#2. And what I learned from it is that I actually feel a lot better on a gluten-free diet. My symptoms were so mild I didn't notice until I went off and then back on gluten. So if you go gluten-free for the sake of your child, pay attention to how you feel as well. After all, the disease is genetic and it had to come from somewhere. (I still don't know if #2 is gluten-sensitive but there is some evidence indicating she is. I just keep her gluten-free to be safe and because it's easier for #1.

B'sgirl: Although my daughter weaned herself I noticed an improvement in how I was feeling gluten-free and I haven't gone back to eating gluten even though she has been weaned. I wouldn't say that I was feeling ill before going gluten-free but I definitely feel better now. I wouldn't have called myself a gassy person before, but having been gluten-free for awhile now I have had zero gas or bloating and feel great! You are absolutely right, it has to come from somewhere... I guess that somewhere is from me.

My eldest daughter doesn't seem to have the same level of gluten intolerance that the little one has but I am going to get her gluten-free too. She is a very gassy child and I bet that some of that is due to her having some gluten issues. It is going to be harder to get her to be gluten-free since she has grown accustomed to having certain foods but in the long run I think it will be better for her.

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...my first child had celiac and actually weaned himself (probably because my milk was harming him) by the time he was 4 months old.

Interesting! My sister's son also weaned around the same age. One more thing to add to the list of reasons why I suspect he has a problem with gluten. ;)

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Interesting! My sister's son also weaned around the same age. One more thing to add to the list of reasons why I suspect he has a problem with gluten. ;)

My youngest was about 4 months when we ( after our testing through ellimination) went gluten-free . she was close to weaning because she would not latch long or often , just scream and arch her back all day long. I fought hard and wont go into that but at 6 months she was nursing normal and often. her teeth are stained in the front from low enamel from gluten. That whole first year was a fight.

We had a great easy birth at home.

Gluten DOES pass through breast milk. dispite what our Gi said , sigh

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My youngest was about 4 months when we ( after our testing through ellimination) went gluten-free . she was close to weaning because she would not latch long or often , just scream and arch her back all day long. I fought hard and wont go into that but at 6 months she was nursing normal and often. her teeth are stained in the front from low enamel from gluten. That whole first year was a fight.

We had a great easy birth at home.

Gluten DOES pass through breast milk. dispite what our Gi said , sigh

I had the same experience with my daughter. She would always scream and arch her back all of the sudden and I never understood it. She quit doing when she was about 6 months old too. I can't remember when I started avoiding gluten with her so I'm not sure if there is a connection. I am still not sure if she can tolerate it or not. I just don't give it to her. The few times she's had it I think she gets diarrhea but it could have been caused by something else as well. I plan to just play it safe until she is old enough to tell me how she feels after she eats.

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