Does Gluten Go Through Breastmilk?

[SandiB]

Hi

I am new to this, my baby girl is 4 months old and is soley breastfed and has just had her wellness checkup and her weight has dropped from birth 75% to now 25% and her head circumference from 75% to 10% her height has remained at 95%. Her CBC came back that she is anemic everything else was fine we are still waiting back on the allergy test. She has had green Mucus BM ever since she was born she has always had runny nose and a 2 months ago developed a huge rash on her neck and body. I gave up gluten 2 weeks ago and she stopped having runny nose and the rash has cleared up since Does Gluten go through the breast milk I mentioned to the pediatrician that could she be celiac but she says that babies this young don't get celiac is this true is it only when they are on solids that they become celiac? please let me know somebody because I feel that cutting out the gluten has made huge difference even in the 2 weeks that I have been off it in her symptoms.

Thanks

[Ursa Major]

Hi Sandi, and welcome to these boards. You have an uninformed pediatrician, and you are right. Yes, gluten absolutely WILL go through breast milk, as do other allergens.

That a small, breastfed baby is anemic should be a huge red flag right there! Plus the rash, horrid stools and everything else.

You are doing the right thing in giving up gluten for your baby's sake. Congratulations for figuring it out before your baby is deathly ill.

When people who have the genes that predispose them to celiac disease get those switched on through stress, illness or a traumatic event of any kind, then they will get celiac disease.

In some cases being born is enough trauma. It appears that this is the case with your baby. It is not true that babies only develop celiac disease when they start solids.

Since celiac disease is not an allergy, the tests may come back negative. Keep your baby on the gluten-free diet, first by not eating it yourself, and then after weaning by not giving it to her. Your instincts are right on and will prevent suffering and illness for your baby.

Make sure you give your baby liquid iron (a dose right for a small infant) to fix the anemia. And keep doing what you are doing, you are a great mom.

[Fiddle-Faddle]

I second what Ursa says.

Your pediatrician is greatly mistaken.

You can do a search on this board and find a thread about a baby named Megan, whose mom DEFINITIVELY proved with meticulous charts that her baby WAS affected by gluten in mom's diet passing into the breastmilk.

I believe there might even be studies proving this by now--try googling "gluten breast milk study" and see if anything comes up.

Best of luck to you! (And get another pediatrician if you can!)

[Kibbie]

Hi

I am new to this, my baby girl is 4 months old and is soley breastfed and has just had her wellness checkup and her weight has dropped from birth 75% to now 25% and her head circumference from 75% to 10% her height has remained at 95%. Her CBC came back that she is anemic everything else was fine we are still waiting back on the allergy test. She has had green Mucus BM ever since she was born she has always had runny nose and a 2 months ago developed a huge rash on her neck and body. I gave up gluten 2 weeks ago and she stopped having runny nose and the rash has cleared up since Does Gluten go through the breast milk I mentioned to the pediatrician that could she be celiac but she says that babies this young don't get celiac is this true is it only when they are on solids that they become celiac? please let me know somebody because I feel that cutting out the gluten has made huge difference even in the 2 weeks that I have been off it in her symptoms.

Thanks

Yes it does! I am currently 19 weeks pregnant and because my 3 year old has celiac disease her pediatrician is ordering a genetic test for celiac disease to be done as soon as the baby arrives so that I will know if its a "possibility" this time around. So that I can make an informed decision about my breast feeding diet when the time comes.

Anyhow huzzah to you for deciding do to this on your own! You rock!

[mommida]

I was eating gluten while breastfeeding my daughter and her stool was green mucus too. Studies have shown gluten is passed through the breastmilk. She was gene tested and has both DQ2 and DQ8 Celiac genes. ( Since I would not risk her health for the "gold standard" diagnoses she was labeled as probable Celiac. Positive blood tests.)

Find a different doctor. If at any time, official diagnoses becomes too risky for your child, stop the testing. My daughter ended up being hospitalized for dehydration when gluten was being ingested for the endoscopy with biopsy. If there is improvement with the gluten free diet that is enough proof.

[home-based-mom]

As your baby is young enough to still have frequent appointments with the pediatrician, let me suggest that you print out *everything* you can find and take it with you to the next appointment. If your pediatrician is receptive and willing to learn, then you will have done a great service to others and you might consider staying. If your pediatrician seems offended or uninterested, leave the printouts, insist they be put into your baby's file, and then find another pediatrician.

You won't get help for a medical condition about which your doctor is ignorant and unwilling to learn. But if your doctor is up to the challenge, together you could make a great team in helping your baby.

Trust your instincts.

[SandiB]

Thank you all for your replies, I am now looking for a new pediatrician.

How would I go about finding a ped that knows about celiac and what test to conduct?

[cloesb]

sometimes GI specialists have good recommendations for a local pediatrician. if you can find a local pediatric gastro-intestinal specialist, he/she will probably have a good recommendation for you. you might want to see one anyway with your daughters issues.

yes - your child can have celiac but a child cannot be properly diagnosed until 5 years old. you can, however, get the genetic test which is a cheek swab to see if your baby carries the genetic marker. its not a definitive diagnostic tool but, imo, it helps if your worried.

just remember that you are the mother and don't discount your instincts. if you think gluten is definitely affecting your child, then it probably is.

[Fiddle-Faddle]

yes - your child can have celiac but a child cannot be properly diagnosed until 5 years old.

Whoa--that idea of "properly diagnosed" is based on a very narrow-minded and archaic definition of celiac.

Waiting for a child to develop enough intestinal damage in order to label it a "proper" diagnosis of celiac is like waiting for someone with a peanut allergy to go into anaphylactic shock before diagnosing him with a peanut allergy.

IF A VERY YOUNG CHILD IS REACTING SEVERELY TO GLUTEN, AND THE REACTIONS DISAPPEAR ON A GLUTEN-FREE DIET, THAT IS A FAR MORE DEFINITIVE DIAGNOSIS OF CELIAC THAN ANY LAB TEST.

Any doctor who would have a mother feed her symptomatic child gluten for five years in order to obtain the so-called "gold standard" of diagnosis is ignoring the mandate of "first, do no harm."

Also, "the genetic marker" you refer to is slightly complicated. Here in the US, 2 genetic markers are recognized as being linked with celiac--but in Europe and Asia, 7 are recognized. So if you are in the US, and have one of the 5 that Europe and Asia recognize, but your US doctor says you don't have "the celiac gene," then what?????

There are people who have posted on here who do NOT have those markers, but who have biopsy-diagnosed celiac.

You see how flawed the current system is....

[SandiB]

you were right the allergy tests all came back negative! Now the old Pediatrician wants to send my dd to a neurologist? You would think that first call would be a GI considering all the gi things that are going on

Well I found a new pediatrician and he said it was celiac without doing any tests.

[Ursa Major]

you were right the allergy tests all came back negative! Now the old Pediatrician wants to send my dd to a neurologist? You would think that first call would be a GI considering all the gi things that are going on

Well I found a new pediatrician and he said it was celiac without doing any tests.

A neurologist? To do what? That is totally crazy!

Good for you for finding a new doctor for your little one. The old one deserved to be fired!

[SandiB]

My dd wasn't really focusing on faces (she would focus on objects) but never look at you - until I stopped the gluten, and now she does more and more every day. Also she has a few other developmental delays - head control when she is upright is a bit floppy not as good as it should be, and she isn't holding onto things like she should but these things seem to also slowly getting better since I have stopped the gluten. She has always arched her back as if she was in pain in her tummy as a result when put on her tummy she has rolled over since she was 10 weeks old. Has anybody else experienced the above things in their babies who turned out to be celiac or is the pedi right that I should see a neurologist?

[Ursa Major]

My dd wasn't really focusing on faces (she would focus on objects) but never look at you - until I stopped the gluten, and now she does more and more every day. Also she has a few other developmental delays - head control when she is upright is a bit floppy not as good as it should be, and she isn't holding onto things like she should but these things seem to also slowly getting better since I have stopped the gluten. She has always arched her back as if she was in pain in her tummy as a result when put on her tummy she has rolled over since she was 10 weeks old. Has anybody else experienced the above things in their babies who turned out to be celiac or is the pedi right that I should see a neurologist?

It sounds like symptoms of autism. But even though true autism is genetic, gluten and dairy can bring on the same symptoms. That is why quite a few autistic kids will recover from autism when put on a gluten-free/casein free diet (and if they don't, they are often much better......... as in high functioning autism instead of low functioning). The gliadin and casein were affecting their brains like opioids, making them dopey and unresponsive and unable to think and communicate clearly.

Your daughter is coming out of that state. I think you can safely skip the neurologist and keep doing what you are doing. I don't remember if you have eliminated all dairy and soy from your own diet as well. If you have not, it will be a good idea if you do. I bet your daughter's progress would be even faster then.

[Fiddle-Faddle]

My oldest did experience what you describe. He is almost certainly celiac (had many symptoms--we never bothered with testing, but only figured out the gluten thing with him a couple of years ago) and also had developmental abnormalities and was diagnosed as autistic at age 3.

Before you get nervous, he is doing wonderfully well, and today, at age 12, would probably lose the diagnosis of autism if we were to bother getting him tested. He is totally mainstreamed in all classes, with no aid whatsoever, has friends, plays the violin, plays floor hockey, and is a junior black belt in Tae Kwon Do.

I think the an appointment with a neurologist or at least a pediatric developmental specialist is a good idea. If your daughter is flagged as having developmental delays FOR ANY REASON (autism, PDD, or anything else), then the earlier you get help, the more likely it is that she will overcome any difficulty.

For our son, early intervention was SO important! If you wait until they are school-age, that's 3-4 YEARS of help lost that can't be made up. And if everything is fine, then you've lost nothing except a few hours to go to the appointment.

[SandiB]

Well the earliest appointment with the neurologist we can get is a month away. And I guess it won't harm anything just to have a consultation and see what they say.

One of the first things the Pedi recommended at her 2 month check up because of all her GI issues was to come off dairy and Soy and she also put her on Prevacid because she thought she may have silent reflux (she never spat up) does anybody know if prevacid has gluten in? As she is still on that. Both those things happened at the same time, I saw a big improvement in her so I never knew which one it was that made her improve.

[Fiddle-Faddle]

My daughter had reflux--the easy cure was to nurse her half as much (one side instead of two) twice as often (well, maybe not so easy, as that meant nursing 20 times a day instead of 10, but at least that meant I got to sit down!). That pretty much ended the reflux.

I don't know about Prevacid, but I bet someone who knows will post!