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

Possible For Young Breastfed Baby To Have Celiac?


samuella

Recommended Posts

samuella Apprentice

I am exclusively breastfeeding my 4 month old son and I was just diagnosed with celiac. I am going gluten-free immediately, but wondering if my son may already have been harmed by the gluten through my breast milk? He is severely underweight and we've been struggling with this the past couple of months - wondering if that could be a reaction to gluten in the milk? I've read differing opinions on this and can't seem to make sense of whether or not enough of the protein passes through breast milk to affect him. I'm going to ask my doctor for blood tests to check me for any nutritional deficiencies but I was just tested for iron for example and that was fine, so I might be fine in that department (of course won't know until more tests are done) - but I was thinking the other issue is that my breast milk might just suck if I'm deficient, you know?

Anyhow, any been there done that stories?

Thanks! :)


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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

I don't know how/if your having celiac affects the nutritional quality of your breastmilk, however I just wanted to say that yes babies can be born with celiac. It is genetic but symptoms can show up any time in life. Your children and all your first degree relatives (parents, siblings, etc) should be tested even if they have no symptoms. If the tests come back negative that doesn't mean he won't develop it later in life and you should retest yearly. You can also just decide to keep him gluten free to see if he improves and then "test" by giving him gluten later on.

suz2024 Newbie

This is just my humble opinion.

I did not find out my daughter had Celiac until she was 5, but I knew from the infancy that something was wrong. I breastfed exclusively, pumping every chance I had for those feedings at daycare. She was born at the 50th percentile and by 6 months old she was down to the 4th percentile and flagged failure to thrive. Hindsight is 20/20 and if/when I have another baby, I will be hypervigilant about eating gluten free to ensure my breastmilk is gluten free as well.

Suz

tarnalberry Community Regular

Yes, birth can trigger celiac for babies just like it can for mothers. Yes, gluten is passed in breastmilk. (Look at the actual research and there really is no controversy about this one.) So, yes, it is possible that gluten is an issue. I hope you find that she does better with you on a gluten free diet as well! (Some babies are also quite sensitive to casein (dairy protein) in mom's diet as well.)

sb2178 Enthusiast

It's also quite possible and even likely that other members of the household (especially if you have other kids) are getting small amounts of gluten on toys, teething rings, passifiers, etc. Baby chews on books, eats a few cheerio crumbs, other kids kiss him after eating crackers or bread...

samuella Apprentice

Thanks everyone! We are getting my other son tested and have suggested to my parents and sister that they get tested too. I suppose if the baby starts gaining weight now that I am gluten-free we will now he has an issue with celiac, but do you know how young babies can be tested for it? We have an appointment with a doc next week but I like to be armed with information! :)

tarnalberry Community Regular

They can test at most any age, but tests are notoriously unreliable under the age of 2. Additionally, if the baby isn't getting any gluten (from finger foods or through your breastmilk) the test is worthless - they can't see if she reacts to something until she is getting that something.


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



Celiac.com Sponsor (A8-M):



WhenDee Rookie

My daughter had a big problem with cow's milk as a baby - she was getting the proteins through breast milk.

Because the gluten problems are actually with certain proteins... it stands to reason these could pass through breast milk as well.

If your doctor blows you off - find another one who will explore the problem. I was sick for 15 years because I let doctors blow me off.

Medusa Newbie

My daughter was diagnosed ceoliac about 3 years ago, but looking back I can't help wondering how early her problems started as she had such awful colic when she was a baby. My going off cows' milk seemed to help a lot - if only I'd thought of skipping gluten too! It stands to reason that if foreign proteins from cows' milk can come through in breast milk, then wheat proteins could too. Colic in babies can reduce the whole family to tears! Must be worth going gluten free to see if it helps! Regarding tests, we've found the ones offered here in Sweden hopelessly unreliable - my eldest kept coming up negative or at least not properly positive, but finally got diagnosed as she passes out if she is exposed to gluten. Hard to argue with that. It really irritates me that coeliacs are expected to make themselves sicker on purpose to get a "proper" diagnosis! Just getting better on a gluten free diet doesn't count... I have been known to point out to health professionals that there is no known sickness resulting from gluten deficiency.... ;)

  • 3 weeks later...
momtok&m Explorer

I'm just wondering how everything turned out? I also wonder, if a BFing mom has celiac and is eating gluten...her BM would maybe not be as healthy? Maybe lower amounts of fat or other nutrients since your own body isn't absorbing nutrients.

tarnalberry Community Regular

BM is fairly amazing - mom has to be *severely* malnourished for breastmilk to change it's nutrient profile. This is one reason why WHO recommends extended breastfeeding, particularly in developing countries; it gets the babies a bit farther along with better food than may be available to older children/adults.

Noomers Rookie

I was in the exact same boat a few months back. I was diagnosed with celiac when my son was 5 months and I was breastfeeding too. You can check out the thread I started about it here.

Nothing changed after going gluten-free, sadly. I ended up switching to Alimentum formula (hypoallergenic) and my son (now 7mos) is thriving. Strangely, I found that when I was pumping while introducing the formula, my milk had almost no fat in it (which was not he case when I was nursing my other children). And I wasn't exactly starving to death (I was just a few pounds out of my normal range at that point). It's definitely worth a try to see what being gluten-free for a time will do. For me it didn't help, but it very well might for you.

samuella Apprentice

Sorry for the delay in responding, folks! Things have been pretty hectic around here!

So one month gluten-free and it's not helped the baby at all. His poops did change within days of me going gluten-free but not sure if that wasn't just a coincidence. I'm noticing some slight digestive improvement for myself, but nothing big. Sigh. I had more blood tests done and apparently I am slightly iron deficient so am taking iron now, but everything else came back good, including zinc and Vit B12. Still waiting for my Vit D. Not sure it's a quality of breast milk issue, unless the low iron could be really messing with it.

We have however discovered he may be tongue tied and upper lip tied, which could be the problem! So we are waiting for an appointment with an ENT and will see from there if we are going to do anything about it. Oh the fun never ends!!

In other news my oldest son, who is 7, tested positive for celiac with the blood test so we are waiting for a referral to a pediatric GI for more testing. And my sister also had a positive blood test! My mom is going to get tested too. I'm not very popular in the family at the moment, hehehe.

tarnalberry Community Regular

Tongue tie can absolutely prevent baby from getting enough milk. I hope it can be clipped soon!!

Archived

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

  • 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.