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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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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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