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Celiac Disease And Breastfeeding

taneil

Did you breastfeed your child?  

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taneil Apprentice
taneil
Posted

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
mat4mel
Posted

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
Connie R-E
Posted

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
kaylee
Posted

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
mpeel
Posted

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
gf4life
Posted

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
TrixieMom
Posted

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
eternity
Posted

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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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