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Celiac and bf help


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My dh is an undiagnosed celiac. Yes, we are sure that he has it. My question is concerning our newbie that I am bfeeding. Does anyone have experience with gluten going through the milk and causing their baby to have painful gas?

 

I eat limited gluten just due to ease of cooking, but do eat a small amount of it at times. It seems to be related to her problems, but it could also be milk, onions, beans, or who knows what else. We haven't been able to directly link gluten to the problem.

 

I ate gluten twice in the last 3 days after not having any for 2 weeks and she had painful gas more than 24 hours after the second time and it is mostly at night.

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I don't have experience with gluten, but do with dairy. My ds reacts terribly to milk products. He had HORRIBLE colic as a baby. His screaming and crying as a newborn were awful. When I gave up dairy entirely out of MY diet, he became a completely different baby. I spent the next 2+ years having to avoid it scrupulously--each and every time I slipped, the poor guy had a rough time.

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I don't have experience of it, but a quick google tells me that it's possible.

The issue with gluten is that symptoms are not always instant, so it might be hard to make a direct correlation based on timing. Probably the only way is to eliminate it entirely for a while and then try it again.

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We nursed until DS was 2.5 years old. He was diagnosed with egg and dairy allergies when he was ~1 year of age and those certainly did pass through the milk and cause discomfort. (And major spewing.)

But DS still was having problems after I eliminated those items from my diet. They were testing for additional allergies, including gluten. He was finally diagnosed with a sunflower allergy. :glare: Most 'alternative' foods w/o eggs and dairy have sunflower in them.

I am celiac, but diagnosed long after bf'ing, so I don't know first hand. But do know my doctors were testing my son that at the time.

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FWIW, there are gluten allergies/intolerances that are not celiac. :) The only way to be sure your husband or baby has celiac is for each of them to undergo a biopsy of the small intestine. I think there may be a a blood test, now, that is being used, but as of 3 years ago when my son was diagnosed, biopsy was the only way.

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Whether it is an intolerance or celiac doesn't make a whole lot of difference to my dh because he gets sick as a dog if he gets any amount of it whatsoever. Either case the treatment is to not eat gluten at all.

 

For my dh we will probably have her tested for celiac but if it doesn't come back positive that won't answer whether she is intolerant or not.

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I'd say it's definitely possible, but dairy products can also cause those symptoms in nurslings. I'd take yourself on an elimination diet to see if you can pinpoint the culprit. You can do the top culprits altogether, or one at a time. If you go off all of them at once just make sure you only reintroduce one every two weeks or so.

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Whether it is an intolerance or celiac doesn't make a whole lot of difference to my dh because he gets sick as a dog if he gets any amount of it whatsoever. Either case the treatment is to not eat gluten at all.

 

For my dh we will probably have her tested for celiac but if it doesn't come back positive that won't answer whether she is intolerant or not.

 

Our ped no longer cares why we can't have gluten just that we can't. We stopped trying to test to figure it out.

 

I breastfed three babies while on gluten (we didn't disocver gluten was a problem until after baby #3)

With #4 (gluten free/dairy lite), we immediately noticed his movements were completely different than the other 3. For the first time, normal breastfed poop. I had cravings and had gluten. His movements for couple of days was the same as the other three - liquid poo. Whe we started solids, he is the only baby with solid movements and not liquid with some solid swimming in it. I tried gluten again and he had that runny runny poo.

 

I say it can cross into breastmilk, can make babies sick. Whether you can find a dr to agree is a whole 'nother thread. And testing for the under 3 year old crowd is highly unreliable. So that route may not be much help. They need to ingest lots of gluten for a reasonably long time to have enough damage to note. Damage levels of 1 and 2 won't get you a dx of Celiac.

 

Edited to add that I am undiagnosed Celiac along with 2 of the kids. We were too sick to continue eating gluten to get tested again in a year but not sick enough for everyone to agree to call it Celiac. But everyone agreed we shouldn't eat gluten.

Edited by servin
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I have been gf, dairy free and soy free for 7 years with no dx. It wasn't worth continuing to try to get one after I tried going gf and it made a huge difference.

I have nursed 3 since then and I always keep them gf until I can test them. Ds4 will stay gf for a lot longer because he has a diagnosed autoimmune condition. I just figure that it can only be to his benefit to keep his potential allergen load as low as reasonably possible.

 

My cousin had to cut out gluten and airy for her nursling even though she had never had to go gf for herself. It helped lots.

 

All the best to you and your family in working this out.:grouphug:

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FWIW, there are gluten allergies/intolerances that are not celiac. :) The only way to be sure your husband or baby has celiac is for each of them to undergo a biopsy of the small intestine. I think there may be a a blood test, now, that is being used, but as of 3 years ago when my son was diagnosed, biopsy was the only way.

 

A word of warning--a biopsy is an extremely imperfect measure that is highly dependent upon what area is sampled. Also if the gut is healed (like someone has been abstaining from wheat for an extended time) the biopsy shows NOTHING. The biopsy can only show damage--so someone who has been avoiding wheat will not have damage.

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My dd has celiac disease and my dh has the latent form. When ds came along i asked about nursing and gluten. My doctor said that gluten DOES NOT pass through breastmilk. I have never been on a GF diet and nursed ds for 15 months. We know for a fact (testing was done at birth) that he has one of the 2 genes for CD, but so far he does not have it.

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My dd has celiac disease and my dh has the latent form. When ds came along i asked about nursing and gluten. My doctor said that gluten DOES NOT pass through breastmilk. I have never been on a GF diet and nursed ds for 15 months. We know for a fact (testing was done at birth) that he has one of the 2 genes for CD, but so far he does not have it.

 

 

My ped and ped gi say the same. However, neither of them can produce one single study that proves that. I couldn't find any either (4 years ago). at that time, there was not a study that examined breast milk for gluten. I challenged both to show me proof that it does not. The best they could come up with is a study of various size molecules that do and don't pass through breast milk and the conclusion that since gluten is the size of this then it is likely to behave the same way. But at that time, no one had actually tested breast milk for gluten. However, other studies show that molecules bigger than gluten pass through the breast milk. So we all decided to agree to disagree on that one. After all, it wasn't until I weaned #3 early after putting her on strict gluten free diet that she started growing again. She did fine on breast milk (gluten loaded - she did have liquid poo that never ever had any solid parts at all her entire life but was at least growing) until we added in wheat based solids. By the time we thought gluten, it took weaning her and removing all gluten to get her well.

 

GLuten issues are such a complete wild west show that current theories are being disapproved nearly daily. And add in the latent form in which there are no currently recognized symptoms of and the waters just get murkier. The sad thing is it is only after lots of damage is done that one begins to figure out it's gluten. Our oldest will be nearly 6 inches shorter than where he should have been because of undiganosed Celiac that didn't show with the typical normal symptoms. We are crossing our fingers that puberty will jumpstart his growth and give a decent catch up.

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Lets just say better safe then sorry. I didn't know we had Celiac in the family (husband's side) when I had and nursed (both extended ~ 4yrs) my girls. Both now have Celiac, and my youngest also was dx at 13months with type-1 diabetes, and at 4yrs with Hashimoto's disease. All three are linked.

 

More and more autoimmune diseases are being linked to gluten, as well as a whole list of other common illnesses. What I've found through research is it's not the whole gluten molecule, but the Gliadin protein that travels through the mother's milk. It's enough for me to say to others, why take the chance? There are so many other things you can eat, and you bf (at least most women do) for only a year or less, it's not that hard to go GF.

 

If only I'd know then, what I know now, I would have maintained a GF diet though-out my pregnancies and while breastfeeding.

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