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Anyone else have a child that clearly was getting gluten through breast milk and very seriously reacting? 

 

That's how it all started with us.   No one ever suggested I take gluten out of my diet and I had no idea what Celiac even was. 

 

It got so bad that my LO stopped eating for days before the doctor finally had me put him on hypoallergenic formula. 

 

I get so many comments from doctors like "gluten can't pass through breast milk" to "kids can't get Celiac symptoms until they're much older"  which is all clearly untrue.

 

Just wondered if I'm alone over here! 

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From the University of Chicago Celiac Disease Research Center:

Q: Is gluten found in breast milk?

A: There is little to no human research about the effect of gliadin, which is the portion of gluten that passes through breast milk. However, in animal studies it has been shown to have a protective effect, or help the child build up a tolerance to gluten.

We don’t know for certain, but the best evidence we have indicates that a child who is at risk for celiac disease being breastfed by a mother who eats a normal diet would not be harmed by this, and in fact, might be helped.

Regardless, we do know when it is best to introduce gluten into the at-risk child’s diet. For more details on that, please see our Winter 2010 newsletter.

 

http://www.cureceliacdisease.org/archives/faq/is-gluten-found-in-breast-milk-2

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Here is another reference: http://celiacdisease.about.com/od/celiacdiseasefaqs/f/BreastMilk.htm

This source is a medical writer, and not a doctor.  I was not able to aquire the sources that she referenced.

 

Here is what nutritionist Tricia Thompson says: http://www.glutenfreedietitian.com/newsletter/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/

 

Is it too late to reintroduce breastfeeding? 

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Here is another reference: http://celiacdisease.about.com/od/celiacdiseasefaqs/f/BreastMilk.htm

This source is a medical writer, and not a doctor.  I was not able to aquire the sources that she referenced.

 

 

 

 

But, it should be noted that first .com article draws an illogical conclusion from the valid information that is published and available.

No other VALID source agrees with her inflammatory first statements.

Question: Can There Be Gluten In Breast Milk?
Answer: Yes, gluten has been found in human breast milk. This means that if a non-celiac mother is nursing a baby or a toddler with confirmed celiac disease, the mother needs to maintain a gluten-free diet.
But does she say the nearly negligible amount that has been detected? no. This is not  good journalism.
That particular site may post misleading information about celiac, IMO. Reader beware.
 
Tricia Thompson appears to be a more reliable source.

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I have no scientific evidence to back this up, but I personally am completely, totally convinced that celiac can be triggered by gluten in breastmilk. My daughter had a traumatic birth and was put on IV antibiotics for her first week of life. I exclusively breastfed for the first five and a half months. On the day my breastmilk came in, my daughter began screaming and screaming. She screamed for hours, enough so that the hospital nurses called in the doctor because they had no idea what was wrong. After a long, horrible night, she finally fell asleep. But she was extremely fussy from then on. She had projectile vomiting, was fussy all day, and woke up twitching and screaming dozens of times each night. I took her to the doctor over and over again, and they kept saying it was just colic and it would pass. It got worse and worse until (after several months) I finally told her doctor that I KNEW something was wrong and was going elsewhere if she wouldn't help us. We got referrals to a neurologist, pediatric GI, and allergist. She had delayed reflexes, an extremely exaggerated startle response, and muscle tension that they thought could be CP. They thought the twitching might be seizures, but her EEG was normal. It was obvious to me that there was some food-related problem, but her allergy tests were negative. The GI was concerned by all the vomiting, but he did not test for celiac because she'd never had anything but breastmilk, and apparently he did not think that anything in my diet could be triggering the symptoms. I'd already eliminated all dairy, nuts, soy, and beef from my diet, and there was only slight improvement. I eventually eliminated wheat for several weeks too, but I was looking for an allergy with an immediate reaction (not thinking of celiac), and I went back to eating it after a while because there was no clear difference and I was starving. When she was about 6 months old, the GI and allergist put her on Neocate formula, a super-hypoallergenic (and very expensive!) formula. She had immediate improvement. That made it clear to everyone that the problem had been something in my breastmilk, but we still didn't know what.

Anyhow, things were great until she began solids. CP-type symptoms improved and she was discharged by both the neurologist and the GI. Once on solids, everything went downhill again. I finally did tons of research and figured out she must have celiac when she'd just turned four. I had an awful time getting doctors to listen or even run the blood tests. But once I finally found a doctor who took my concerns seriously, she came back with high positives on all tests. Her tTG-IgA was over 16x normal. The biopsy confirmed the diagnosis. She's been gluten-free for seven months now and is doing great.

I realize this is anecdotal. And things are complicated because I had clear, decades-long, awful symptoms myself that have almost gone away once I stopped gluten. Although my celiac tests were negative, it's certainly possible that my daughter was reacting to some other antibodies in my breastmilk, not necessarily gluten itself. But altogether, it seems overwhelmingly likely to me that gluten from my breastmilk (combined with the antibiotics that diminished her gut flora after birth) triggered my daughter's celiac.

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I'm still nursing my youngest (she's 2 - DX at 18 months).  Yes, ABSOLUTELY, gluten was being passed in BM.  I still remember the screams in pain.  Now that we're all gluten-free and she's still nursing the only screams come from being glutened...not from me.

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I won't even try to give you an article link.  I've seen many.  I will tell you from experience, yes there were many symptoms of Celiac when my daughter was a newborn.  Projectile vomiting, "D" diapers with mucous and sometimes it was green ~ not the light mustard color of normal breastfed newborns, very tired and pale, and she ate all the time and was not gaining very much weight at all.  She kept growing in height, but no weight gain, falling off the growth chart. Trying to start rice cereal at around 7 months was horrible.  She was constipated for 4 days.

 

Well the ignorant doctor care did nothing to help and got switched to a specialist when I questioned Celiac.  She was finally diagnosed when she was 16 months old with Celiac.

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Absolutely,  my son reacted to my breast milk when I ingested gluten.   No doubt about it.  none.  As a vegetarian, I was a heavy gluten eater during my pregnancy and postpartum to try to get enough protein (gluten protein).  As a small baby, he was exclusively breastfed, had chronic diarrhea and vomiting and terrible colic, until his pediatrician told me to do an elimination diet.  She had me eliminate dairy first, no change; then soy, no change; then gluten - and everything stopped - he turned into a much happier baby.  Every single time I tested it or made a mistake, hours later he nursed and then had explosive D and/or V.  He was breastfed until he was 3.5 years old, so there were many occurrences.  He still reacts with the same symptoms to any trace of gluten in his diet.

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I have no scientific evidence to back this up, but I personally am completely, totally convinced that celiac can be triggered by gluten in breastmilk. My daughter had a traumatic birth and was put on IV antibiotics for her first week of life. I exclusively breastfed for the first five and a half months. On the day my breastmilk came in, my daughter began screaming and screaming. She screamed for hours, enough so that the hospital nurses called in the doctor because they had no idea what was wrong. After a long, horrible night, she finally fell asleep. But she was extremely fussy from then on. She had projectile vomiting, was fussy all day, and woke up twitching and screaming dozens of times each night. I took her to the doctor over and over again, and they kept saying it was just colic and it would pass. It got worse and worse until (after several months) I finally told her doctor that I KNEW something was wrong and was going elsewhere if she wouldn't help us. We got referrals to a neurologist, pediatric GI, and allergist. She had delayed reflexes, an extremely exaggerated startle response, and muscle tension that they thought could be CP. They thought the twitching might be seizures, but her EEG was normal. It was obvious to me that there was some food-related problem, but her allergy tests were negative. The GI was concerned by all the vomiting, but he did not test for celiac because she'd never had anything but breastmilk, and apparently he did not think that anything in my diet could be triggering the symptoms. I'd already eliminated all dairy, nuts, soy, and beef from my diet, and there was only slight improvement. I eventually eliminated wheat for several weeks too, but I was looking for an allergy with an immediate reaction (not thinking of celiac), and I went back to eating it after a while because there was no clear difference and I was starving. When she was about 6 months old, the GI and allergist put her on Neocate formula, a super-hypoallergenic (and very expensive!) formula. She had immediate improvement. That made it clear to everyone that the problem had been something in my breastmilk, but we still didn't know what.

Anyhow, things were great until she began solids. CP-type symptoms improved and she was discharged by both the neurologist and the GI. Once on solids, everything went downhill again. I finally did tons of research and figured out she must have celiac when she'd just turned four. I had an awful time getting doctors to listen or even run the blood tests. But once I finally found a doctor who took my concerns seriously, she came back with high positives on all tests. Her tTG-IgA was over 16x normal. The biopsy confirmed the diagnosis. She's been gluten-free for seven months now and is doing great.

I realize this is anecdotal. And things are complicated because I had clear, decades-long, awful symptoms myself that have almost gone away once I stopped gluten. Although my celiac tests were negative, it's certainly possible that my daughter was reacting to some other antibodies in my breastmilk, not necessarily gluten itself. But altogether, it seems overwhelmingly likely to me that gluten from my breastmilk (combined with the antibiotics that diminished her gut flora after birth) triggered my daughter's celiac.

wow, thank you for sharing.  I can definitely relate and our stories are similar.   I've had stomach issues my whole life and no one ever suggested Celiac.  I just had positive Gliadin results on my bloodwork recently and now it all adds up.   The only way I figured it out with my son was by switching him to Nutramigen Hypoallergenic formula and then slowly introducing food.   Because he's been gluten free so long, I can't really get a positive Celiac diagnosis and doctors will continue to give me the "If it works for you, that's fine, but I think you might be nuts" look.   

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I registered on this site after reading this thread. I'm so happy to see others with the same questions I had / have about breast feeding.

 

My daughter is now 14. Up until last week she had heartburn and diarrhoea every day and often felt a little nauseous after eating. She's small for her age and has ADD and Dyscalculia. She also suffered from anxiety (requiring referral to a child psychologist at age 11) and has experienced many, many other unexplainable issues. None of which have ever been given much attention to by Doctors.

 

She suffered with terrible colic as a baby. She was breast fed and used to vomit a lot, cry and be generally unsettled all the time. I found her old baby book last night that had all her clinic details in it and the comments noted by the health visitor about how unsettled she was. At 6 weeks old she was hospitalised as she had terrible reflux and it used to make her lose her breath. We were sent home with a bottle of Gaviscon and the advice to keep her upright as much as possible.

 

Her height growth chart showed a substantial drop in growth over the years yet this was never questioned. We were told she was just going to be a 'small package'. I'm 5'6" and her Dad is 5'7" so they felt this was justified. I always thought we were kinda average and wouldn't have produced short kids.

 

After recently reading lots of information about gluten, I am now absolutely 100% convinced my daughter has been affected by this since birth despite being told she couldn't have been because she was breast fed.

 

She was blood tested for Celiac and that was negative but that means nothing as far as I'm concerned, she IS affected badly by gluten.

 

She has been eating a gluten free diet for the last week and the improvement in her is amazing. She no longer has stomach pain or diarrhoea. No heartburn or any of the other weird things she was experiencing. She now sleeps better and she hasn't felt as anxious as she used to.

 

It's early days for us but I have no doubt this is what we need to do. I feel huge amounts of guilt that my ignorance about this subject has meant she lived all her life being affected. I'm angry that the medical profession never picked up on this but I'm angrier that I didn't either. I'm an educated person, why didn't I ever join the dots?!

 

I don't believe Doctors are all knowing. The proof is in the pudding, regardless of what they tell you 'can't be'.

 

Because my daughter is now 14, it's very unlikely she will grow now. She hasn't grown at all for the last 2 years so I expect that's her done. I wish with all my heart I'd picked up on this and made the connection when she still had a chance to grow properly in a healthy way.

 

I thank God for the internet now, I didn't have access to all this information when she was small but I do now and can at least try to make things better for her from here on in.

 

Good luck to you all, especially those whose instincts are telling them something different to what the experts say.

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There is still a lot of hope for growth for your daughter.  My daughter was diagnosed at age and she did a lot of maturing and growing after that.  Don't give up hope yet.

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Based on my direct experience, absolutely.

Celiac and gluten were not on my radar until they forced their way on.

I had a similar experience to others:

my bf baby had what might be called colic, terrible gas, bloating, screaming, obvious intestinal pain, regurg (not spit up because he needed to burp, but curdled milk vomit), eczema. Upon intro of solids at 4 months at rec of pediatrician (cereals), terrible food "allergies" became obvious, including refusal of all food until I solved the problem. (It still took a while to convince the doc, and they still seem to brush it off as he is growing fine - yeah he is growing fine because Mom figured it out and changed her and his diet! the issue has not gone away... I digress). 

Son did  not test pos for any IgE allergies, all labelled as IgG and enteropathy and also Food Protein Induced Enterocolitis Syndrome (FPIES to other stuff, not gluten). Meanwhile, I was suffering onset of severe intestinal symptoms, flu-like, tired, brain fog, balance etc. etc. I had no idea why. I only connected the dots after I took gluten out of my diet so that my baby could nurse without reacting. I kept a three month log of his food and my food in great detail, as well as reactions.  I'm 100% sure he was reacting to my diet.

 

I gather the level of protein that passes to BMilk varies from person to person and probably even meal to meal for a particular individual for various reasons. My theory is that because of my undiagnosed post-partum induced celiac, my gut was leaking ....so more proteins may have been passing straight to my BM without getting broken down fully, hence his reactions to my BM.  who knows, but I wonder.

It has been a process. I am unDX but sure I have celiac. my son is being followed by GI specialists, thankfully, they are open to the possibility that he could have celiac disease. Not sure if we'll ever know. he is now 16 mo and gluten free for  close to the past year of his life.

 

What I am finding hard now is he is board of the food he can have and it is very tricky to introduce new foods because of his FPIES www.iaffpie.org
Curious if any other Celiac Mom's on this thread dealt with FPIES.
 

Anyway, best to you. I hope you get referred to GI docs. We have docs at the hospital who are at least following us, and having a proper conversation, as well as giving us time with a dietician. thank goodness!

 

 

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can ANYBODY send me a picture of exclusively breastfed baby poo with ciliac? The doc's think my baby might have it but she has no symptoms that seem what you guys describe. She has little rocks like sand in her poo but it is the normal mustardy color and is growing fine and everything else is spot on for a baby with no problems. She's not fussy, she doesn't vomit or spit up any unusual amounts. I just don't understand what's going on with her poo. Any insight would be awesome.

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Welcome to the forum, Bazicoon! I don't have any photos, sorry. But you know that pears can make a baby's poop look sandy, right? I don't know about looking like little rocks - that does sound a bit strange - but my daughter still has sandy-looking poop when she eats lots of pears.

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My undiagnosed at that time celiac son's poo was very loose such that the diaper couldn't contain it.  We had to stop leaving him with the baby sitter because she wouldn't clean it up enough.  She said that we would need to give him a bath and left him dirty.  It was normal for us, but clearly not for her other clients.  At that point I had never heard of celiac and was eating gluten.

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Thanks for the replies! Her poo looks completely normal except that it has the little stones in it. I have looked every where I can think of to try to figure out what is going on and I keep coming up empty handed. It is so frustrating. It doesn't seem to be bothering her at all but I want to find out what it is just in case it is Celiac or another big issue. She was born a month pre-mature and had a partially collapsed lung and I am so paranoid that there may be something wrong with her other organs.

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Also the doctors have no idea what is going on either they have never seen anything like it and I can't go to another doctor because I am on base in japan. We don't have options here.  :(

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When my celiac was about two weeks old I brought her for a checkup and her belly was severely bloated. Dr sent her straight to gastro that day to check her out. Her stomach was full of air, she had blood in her stool and was jaundice. Dr told me to stop nursing ASAP and put her on hypoallergenic formula. His first thought was severe allergies. Once I stopped nursing her she made a complete turnaround, belly went down, blood was gone, and jaundice disappeared. She did very well her first year but was very up and down once she started solids, and we got the diagnosis of celiac a few weeks shy of her third birthday. So.... In my experience though we didn't get our diagnosis until quite a bit later (partially from denial on my part), I would say yes, gluten can be passed through breast milk.

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Ditto all the people who said yes. Both from what my paediatric GI told me and from personal experience even trace amounts of gluten ingested by myself could lead to a serious glutening for my baby. Her poos would turn black and become like little pebbles that would roll out the side of her nappy. Poor darling.

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I have just identified an issue with gluten in my little one when we introduced wheat cereal last week. (Sudden refusal of food when he had been eating like a champ. Runny, mucousy green-yellow stools with increased frequency. Increased spit-up, irritability and restlessness.) I have not gotten pediatrician verification yet, but there is family history of Celiac's on both sides, so I decided to do an exclusion diet between now and his 9mo checkup in a few weeks to see if there is improvement. (It's only been 4 days at this point.) If he does have Celiac's and gluten does pass the milk barrier, I'm thinking it may explain a lot about his almost constant irritability, frequent reflux and fussiness after nursing, constant rooting, etc... since birth. I am not gluten sensitive and very much love my breads, pastas and baked goods. Looking back over meal plan and spikes in his crabby behavior, I see a corrolation between my gluten intake and his discomfort. Here is my question... does anyone have a scientific idea of how long it will take to rid my milk supply of gluten? And, as selfish as it is, after I am systemically clear, does anyone know if it is possible for me to occasionally indulge and know how long that little treat will take to process out again? (You know... like how you can have an adult beverage while nursing as long as you wait a couple hours and pump'n'dump before nursing again.) If I have to be completely gluten-free for the next 17 months, then so be it. But, if I can sneak in a cranberry bliss bar this Christmas without hurting my boy, it would be nice.

Edited by ChristiM

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Welcome to the site, Christi.  The gluten takes a bit to get out of your system so there's no option of "sneaking" a little gluten treat and going back to nursing.  Oh, how I wish it was a simple pump and dump situation!!

 

If you truly think your boy is having an issue with gluten you might want to "gluten light" him for the time and then consider blood testing him in the future.

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That's what I was afraid of. We did get the blood test done, and it did come back negative. But, since I had already eliminated gluten from our diets for a couple of weeks before the test, resulting in a noticeable improvement in behavior, sleep and appetite which is only continuing to improve, and because he's so young, his doctor has us going gluten free until he is closer to 2 and we can do a better controlled reintroduction and test. I guess I'll just have to figure out how to fake it until then. Thanks for the response.

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Please consider getting yourself tested before going gluten free or gluten free light for your nursing baby.  I went gluten free for my nursing baby for similar reasons as others listed above - chiefly my sanity for caring for such a sick, fussy, miserable baby when exposed to gluten!  I NEVER suspected that *I* had a gluten problem.  And given your history, you may not.  But I never thought that I would be unable to reintroduce gluten after going gluten free for my nursing baby.  That thought just *never* occurred to me back then!  I thought it was like taking  a year or two off from eating apples . . . no big deal.  not . . .

It would have been really helpful in our family's journey for me to have had the full panel of celiac tests done *for myself* before going gluten free for my child.

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Breastmilk has mother's ANTIBODIES in it.  (From research I have seen it also has gluten in it.)  It is possible your baby's gluten reaction symptoms are from you.

If you weren't Celiac or gluten sensitive before, you could be now.  The stress of the pregnancy would be a likely trigger for auto immune disease.

There is also another scenario for how a woman's body changes genetically, fetal maternal micro chimerism.  You can actually have DNA deposited in your body that matches your child ~ completely different from your own DNA.

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    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
    • Yeah their shreds raw are nasty but melted in recipes they are decent, they make 2 different shreds a cutting board super stretchy version and a plain, they also sell that mac and cheese sauce by itself for use in other recipes. https://store.veganessentials.com/daiya-deluxe-cheeze-sauces-p5079.aspx The company makes a decent cream cheese and cheese cake also if you can stomach the xantham gum.

      I am going to copy and paste something from another thread thread and link you a list of alternatives. " Violife...makes vegan Feta...I have been dying to try their cheeses and hear good reviews. They also make other cheeses.
      https://store.veganessentials.com/just-like-feta-by-violife-p5342.aspx
      Kite Hill makes great Ricotta, the truffle cheese from them....yeah you will eat the whole thing in one sitting stuff is addictive,  decent cream cheese if you can stomach xantham gum (only one they have that has it).
      
      Miyoko Creamery makes great mozzarella and even a smoked version I hear they make great cream cheese and wheels also but I have not gotten any. Leaf Cuisines makes the best smoked gouda, and a strong garlic and herb cheese

      Tree line Scallion is glorious, and their garlic and herb is milder then Leaf cuisines but decent flavor...the peppered is meh.

      Daiya Blocks flavor wise are better then the shreds, the jalapeno Havarti is one my my dads favorites and he loves their cheddar...again xantham gum so not for me. Their cream cheese is decent but noticeable artificial. Their shreds come in 2 formulations a high melt version (cutting block) and standard I they taste better cooked into recieps over raw.
      Daiya recently started offering cheese sauces...like the stuff they used to sell with their mac&cheese but just the sauce.

      Lissanatti makes the best "raw" shreds for cheddar and mozz.

      Parma makes great Parmesan sub...the better then bacon one is SUPER addicting.

      I heard good reviews on so delicious cheese....but corn makes makes me not even able to do a chew and spit taste without an allergic reaction.

      I recently found a creamery you can contact about getting cheeses...I found their sauce on a site and got it.....great Alfredo sauce.
      http://www.parmelacreamery.com/
      https://www.luckyvitamin.com/m-28232-parmela-creamery
        Dairy Free cheese products  NOTE CHECK FOR GLUTEN FREE ON THEM
      https://store.veganessentials.com/cheese-alternatives-c6.aspx

      Other gluten free options for everything else  
    • Dairy is dairy on a elimination diet, your trying to void all the proteins, lactose, whey, casein, and the enzymes, hormones, pus, etc that could be setting off issues. I would even say wait at first on the dairy free alts. IF anything go with the fewest ingredients ones without starches or gums like the plain kite hills, tree line, leaf cuisines and miyoko. And completely sideline the crazy ones like daiya, or the blends of more then 2-4 ingredients.
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