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Celiac Disease And Breastfeeding


taneil

Did you breastfeed your child?  

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taneil Apprentice

I read a study that said that a baby that is breastfeed for more than 2 months has 2/3 less chance of developing Celiac Disease/Gluten Intolerance. I would like to find out what everyone's experience on this is.


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mat4mel Apprentice

My 2 yr old dd with Celiac was breastfed until just recently, only because I am 27 weeks pregnant and it is uncomfortable. She never received any formula. We introduced solids around 6-7 months but she never ate MUCH until 1 1/2 or so (just preferred to nurse). I have two other kids, the first was mostly bottlefed b/c of my ignorance and my 2nd was breastfed until she was 2 1/2, but was supplemented with formula between 6 months and a year because I was pregnant and had a decreased milk supply. Anyway, the 2 yr old is the only one I am sure has celiac, which is funny b/c she is the one that had the MOST breastmilk! But I wonder how much worse she could have been if I didn't breastfeed her. I am definitely breastfeeding my next child, due in August, and am now gluten free and will stay gluten free atleast while I am breastfeeding (maybe longer, since we don't know where the celiac gene is coming from-- me and/or dh)

Mel

Connie R-E Apprentice

My first son was 100% breastfed and that was how we discovered celiac!

He had such bad colic, I had to find out what was wrong. I heard he would outgrow it, but no one could tell me why he was colicky...

So, thinking what was going in was coming out and why?, I omitted wheat and then gluten from my diet and he stopped being colicky-period! Also, his ear infections stopped. :)

Now, he is anaphylactic to wheat and has celiac reactions to gluten.

Our second is also breastfed and won't have gluten for a very long time as we don't keep it in the house!

Connie

kaylee Rookie

I am currently in the process of weaning my 19-month-old toddler with celiac. He, too, as in the previous post, was incredibly irritable almost from birth. And, unlike what kept being said, he did NOT grow out of it.

Looking back, two things stand out: first, the lack of help from the pediatrician was quite extraordinary, really. I went to her a number of times very distressed for not understanding my son's virtually constant bad mood and progressively worsening bouts of screaming after we introduced solids. Her systematic response was that he was teething and that babies cry. She clearly took me for a highly neurotic, fussing first-time mother (She finally agreed there was a problem when he reached about 15 months, and suggested acid reflux medication, which helped a bit with the screaming).

The other thing is, that unlike you, Connie, I did not think to eliminate gluten, but I did try eliminating just about everything else. How did I miss it?? That's like what we hear about craving what's worst for us in food allergies. I stopped dairy, soy, oranges, peanut butter, caffeine, and various other things and saw strictly zero change in his symptoms.

When it finally dawned on me that we should try eliminating wheat and we saw immediate spectacular change, it still took me a few days to realize I had to stop it too. Now that we've both been gluten free my son is almost constantly happy - a pure delight to be around. This changes dramatically with ingestion of the slightest trace of gluten now - including when I have it and it passes through the breastmilk. I made a real mistake last week and ate some (well, quite a bit, I'm afraid) dried pineapple rings. We paid for that for a good five days of nonstop whining. Dried fruit I think is often dusted with wheat. I just thought, and I will no longer "just think" this, that the amounts present would be so small that once metabolized through me they would be inoffensive. So much for that idea....

I don't know yet if I have celiac myself. I have a number of symptoms and related conditions, but I've been off gluten for several months now and can't be tested until I've stopped breastfeeding and gone back to eating gluten for the 6 weeks required. In the meantime, we all feel pretty good on this diet and I don't regret this prolonged breastfeeding experience at all. My son went through the wringer with what I now know was constant pain for months and the close contact has been a beautiful part of our relationship. If the breastfeeding while eating gluten was a bad thing - well, obviously I feel badly about that, but I didn"t realize, no one else realized including the doctor, and I guess I'm mainly just glad that we did figure out the problem quite early on, that we went through several months but not years of unexplained symptoms.

Wow, that feels good to say all that!

Best,

Kaylee

  • 4 weeks later...
mpeel Newbie

Samantha is still nursing at 4 years old. I am not completely gluten-free but she does not react to the gluten I ingest. However, I am not sure she is still getting milk. She was tentatively diagnosed a year ago.

Michelle

mom to Beth, 7 1/2 and Sam, 4

gf4life Enthusiast

I breastfed all three of my children between 17-19 months each. They did not seem to have any delayed growth or diarrhea problems during this time, but once they were on solids and getting gluten in their diets their growth suddenly dropped from the 95th percentile to the 5th percentile. My daughter had some projectile vomiting and until going gluten-free this last spring she had reflux problems. My middle boy had a severe bout of diarrhea that caused him to severely drop weight, and he has had skinny legs and thighs ever since, and is very short for his age. They all did seem to be a little gassy during their infancy, but they certainly couldn't have been described as colicky, since I've seen babies with colic who were much worse than mine were...

I know that the doctors never would have tested them, had I not insisted. I am so glad I did. Everyone is thriving now that we are all gluten-free!! :D

God bless,

Mariann

TrixieMom Rookie

My son is 14 months and has been diagnosed with celiac disease for a month. I breast feed until he was 12 months old - but he had symptoms from birth - with bm etc.(I ate gluten never thinking.) It was only at about 8 months that he started dropping in the weight chart - he is just below the 10% now - down from about 75%.

Trixie


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  • 2 weeks later...
eternity Explorer

My son is 16 months old and still breastfeeding. He was diagnosed with celiac last week. He is gluten-free and I am eating a gluten-free diet also so that he can continue nursing.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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