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Gluten In Breast Milk

gluten breast milk baby

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#1 Heather_707

 
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Posted 04 February 2014 - 06:44 PM

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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#2 IrishHeart

 
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Posted 05 February 2014 - 04:51 AM

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.curecelia...n-breast-milk-2


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#3 dilettantesteph

 
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Posted 05 February 2014 - 05:04 AM

Here is another reference: http://celiacdisease.../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.glutenfre...-for-cows-milk/

 

Is it too late to reintroduce breastfeeding? 


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#4 IrishHeart

 
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Posted 05 February 2014 - 05:30 AM

Here is another reference: http://celiacdisease.../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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 greenbeanie

 
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Posted 05 February 2014 - 06:02 AM

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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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#6 africanqueen99

 
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Posted 05 February 2014 - 07:34 AM

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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Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (8 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (4 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.  DX with gastritis.

Kid 3 (2 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 


#7 mommida

 
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Posted 05 February 2014 - 08:58 AM

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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#8 GretaJane

 
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Posted 05 February 2014 - 02:12 PM

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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#9 Heather_707

 
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Posted 08 February 2014 - 04:39 PM

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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#10 Birdsong

 
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Posted 10 February 2014 - 03:22 AM

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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#11 dilettantesteph

 
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Posted 10 February 2014 - 07:22 AM

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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#12 tri-gal

 
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Posted 17 March 2014 - 07:02 AM

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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#13 Bazicoon

 
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Posted 18 March 2014 - 12:21 AM

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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#14 greenbeanie

 
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Posted 18 March 2014 - 02:53 AM

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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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#15 dilettantesteph

 
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Posted 18 March 2014 - 07:53 AM

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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