• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Possible For Young Breastfed Baby To Have Celiac?
0

14 posts in this topic

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! :)

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

1

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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.)

1

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites
Ads by Google:


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! :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.... ;)

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events