Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Breastfeeding A Possible Celiac

misclain

Recommended Posts

misclain Newbie
misclain
Posted

Hope I am doing this right - not real familiar with this BB format.

My 18 mo son was just diagnosed with celiac disease. He is currently failing to thrive, but we are so grateful to have some answers and a direction to help him. Since his diagnosis, many pieces of the puzzle have seemed to come together and we strongly suspect that my husband also has this condition, although we haven't had a chance to get him tested yet.

I am currently 21 weeks pg and it is my understanding that this condition has genetic ties, meaning that our new baby may also have this. I nursed Carter until he was 13 months and I am intending to do the same with our new arrival, but I am wondering if I will need to follow a gluten-free diet while nursing and also how soon we will be able to test the new baby to find out if s/he has it.

TIA!

Maclaine

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


angel-jd1 Community Regular
angel-jd1
Posted

Gluten can be passed through breastmilk. So that is definately something for you to take into concideration while you breastfeed. You should also be following a gluten free diet if your baby does indeed have Celiac Disease. Otherwise you will be causing them conciderable damage. :)

Best Wishes!

-Jessica :rolleyes:

misclain Newbie
misclain
Posted
  • Author

Just wanted to clarify, when you said that I should be following a gluten-free diet, did you mean that I could be passing gluten to my unborn child? or were you meaning that Carter needed to be 100% gluten-free?

We are actually a family of 6 soon to be 7. With Carter still being so young, and gluten-free being somewhat more expensive, he is currently the only one Gluten-free.

Thanks for your help!

Maclaine

ROYAL BLUE Apprentice
ROYAL BLUE
Posted

This might be a REALLY dumb question but....Everyone is saying gluten can be past through breastmilk. How about cows milk? Should we not be drinking normal milk?

angel-jd1 Community Regular
angel-jd1
Posted

I am not sure about being gluten free with an UNBORN child. The child could be carrying the genes, however it takes something to "set" the genes into action. Most likely the unborn baby hasn't had any sort of stress to set the genes into action yet. That would be a really good question to ask your doctor. Just from my own research I wouldn't see why you would need to be gluten free during pregnancy if you are NOT celiac. But do check with Doc.

If you are breastfeeding a Celiac Child you MUST also be gluten free. You will do damage to their tiny systems otherwise.

Cow's milk doesn't seem to be a problem for us. With the exception of when you first begin the healing process. Possibly a different process seeing as we are humans and well cows are cows! :D

Just my two cents!!

-Jessica :rolleyes:

gina Newbie
gina
Posted

I am a celiac and was recently contacted by a relative on my husband's side with a question about her baby. She was told that her baby tested positive for celiac desease (blood test results) and she asked me if she could be passing gluten to the baby through her breast milk. I really wasn't sure about the answer, so I told her I would go on line to see if I could get some info. I must admit I didn't think I was going to see a posting regarding gluten being passed into breast milk. So, this is absolutely true then?

Gina

misclain Newbie
misclain
Posted
  • Author

We have a GI appt tomorrow morning and then an appt with a children's nutritionist hopefully next week. Truthfully, I have gotten conflicting information on this. Based on my experience with my ds, I tend to think that you can actually pass gluten through breastmilk - however I don't have ANY medical information to back that up.

Watch this thread because I am going to pin down an answer (woman on a mission) and when I do, I will post and let you know.

Maclaine

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


seeking-wholeness Explorer
seeking-wholeness
Posted

Gina,

It certainly seems to be true in some cases. My layperson's view on the issue is this: In order for a "foreign" substance to appear in breastmilk, it must be absorbed into the milk from the bloodstream. Food proteins are NOT normally found in the bloodstream, at least in quantities expected to cause difficulties. However, if a breastfeeding mother has a leaky gut for any reason, even a mildly leaky one, enough gluten could pass into the bloodstream and be transferred to the breastmilk to cause a reaction in her nursing baby. For the baby's health, it is best to assume that the mother's gut integrity is not perfect and that gluten WILL be present in the breastmilk, so a mother nursing a celiac baby should DEFINITELY avoid ALL gluten herself. From personal experience, I know that both of my babies reacted to any hint of dairy products in my diet, and I see no reason why gluten would be any different in principle.

I hope this helps, and good luck to your relative and her baby!

gina Newbie
gina
Posted

Thanks for the quick reply to my question about gluten in breastmilk. I hope woman on a mission will have more information about this. Thanks again ladies, I will let my cousin know of the recent info.

Gina

  • 1 year later...
Janice C Newbie
Janice C
Posted

My primary teeth were almost black. They would have formed before I was born. My mother did not take anything like tetracycline while whe was prgenant.I think my mother has nonsymptomatic celiac. I wonder if a leaky gut could leak gluten into the blood and into an unborn baby. I have two alleles for celiac.

hapi2bgf Contributor
hapi2bgf
Posted

As a celiac who is due to deliver any day now, I'd like to pass on the advice given to me from my gastro. Maybe you will find some of this helpful.

1. Do not test the baby immediatly upon birth. The baby will have my blood make up and will therefore test positive for Celiacs when the child may not have it at all.

2. At some point in time the baby will need to be tested, but there is no need to test the young infant unless the baby is having problems such as failing to thrive, etc.

3. I need to maintain a gluten-free lifestyle during and after pregnancy for me (the only diagnosied Celiac in our immediate family.) All products used on the baby will be gluten-free for me. I have contact issues too.

3. When I have had a gluten ingestion reaction while pregnant, the baby is a wreck for about two days. It takes a full week for reactions to run there course in me. (What I mean about the baby is when I have an ingestion accident, the baby acts drmatically different for two days - kicks hard, restless, I have lots of pains, etc.) So I know this baby will be breast feed, but will have to have supplements of formula in the event that I have another gluten ingestion while nursing. The idea is at least I can give formula during my reaction so the baby doesn't suffer.

4. As for the delivery, according to the gastro, all IV medications are safe whether they are gluten free or not. The only way I will have a gluten reaction is to ingest the gluten. Gluten in the blood stream is not going to cause harm. (This still makes me uncomfortable, but I trust this doctor.)

5. So for me (the celiac), I get to pack my clothing bag, pack a cooler, pack my normal medications, and then head to the hospital for the delivery. I am not looking formward to the hospital since I believe they will gluten me! The OB doctors have been less than helpful regarding the celiac concerns and it is too late to switch OBs.

Best of luck with the newest addition to your family!

mommida Enthusiast
mommida
Posted

hap2begluten free - Good luck! I wish you a happy and healthy baby and delivery.

I tried finding the answer to this question through LaLeche. I could not find any article pertaining to gluten being in breast milk. There are studies saying that breastfeeding strengthens a baby's gut and could possibly delay onset of Celiac. MY clonclusion from the lack of information. If there is any chance that the nursing mother might be Celiac. She should avoid gluten. Anti bodies are in breast milk. Whether or not the specific Celiac reaction antibodies are there, I could not find any article to say. If you are going to supplement fromula make sure it is gluten free. I found Enfamil formula on a gluten free list. (That was over a year ago so check with the manufacturer's.

As a breast feeding mother you are going to notice your chid will respond differently at feedings depending on your diet. I would reccomend keeping a food diary for a referencence.

I have not been officially diagnosed with Celiac my daughter has been (17 months). We reacted to the same meals before diagnoses, and have had such an amazing recovery on a gluten free diet.

Go moms!

Laura

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

I can't site them but I have read a lot of information that does say gluten is passed through breast milk. Human bodies are very different than those of cows. Humans can pass it through but cows can't.

  • 2 weeks later...
all4gals Newbie
all4gals
Posted

Hi I'm new here. My daughter who has celiac is 5 years old, but was nursed until she was 16 months old. So this topic interested me. We did not get a diagnosis until she was 3, but she never had any related issues while nursing.

If you do a quick google search you'll find lots of good information. The general thought seems to be that nursing would actually protect a baby who has celiac disease even when gluten is introduced (so antibodies wouldn't be produced in reaction to the gluten) and that the mother does not pass gluten through her milk.

Here are a couple of links:

Open Original Shared Link

https://www.celiac.com/st_prod.html?p_prodid=381

Open Original Shared Link

It's so frustrating because so much about celiac disease is still debatable and differs from specialist to specialist. So I think we have to be careful about what source we trust.

Good luck! I have nursed 4 babies, and would go gluten-free myself if I had to. :)

Nicole

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.