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What Next For My Baby Now That I'm Celiac +?


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6 replies to this topic

#1 megsybeth

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Posted 09 October 2012 - 08:42 PM

Hi Everyone,

I've been obsessing about my older son for months (well years) and I'm sure he has celiac. I just got my positive blood test today, after taking the test because of coming here to read more about my son's symptoms and realizing how many symptoms I have. It's a lot to take in but I just realized I have to think about my 8 month old who I breast feed. I've already cut out all wheat from baby's diet but my primary doctor wants me on gluten until I see a GI. I just don't know what to do. I do think the baby has reacted to my breast milk in the past. There have been mucousy diapers, green stools, gas, all more than with number one as a baby (though he was tiny and this baby is huge).

I really don't think I could wean right now. I think the hormones would make me go a little crazy. But it doesn't seem right to keep nursing him while ingesting gluten. Do you think I could talk my primary doctor into just giving me the diagnosis?

Thanks for any input.

-Megan
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#2 jlaw

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Posted 09 October 2012 - 10:11 PM

Hi Megan, I have been watching my son closely actually too, but he's 4, so completely different issues involved. So i'm sorry, but I have no idea about babies. But you don't need your doctor's permission or an official diagnosis if you are happy enough yourself that GI symptoms and +ve blood work mean celiac for you. Especially in light of possible consequences for your bub. The country where I live requires an offical coeliac or DH medical diagnosis for entry in the coeliac society, and I believe at least one state in the U.S (or is it canada?) offers rebates on gluten-free food for the medically diagnosed. But apart from that, it really is your decision.
Best of luck!
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#3 nvsmom

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Posted 10 October 2012 - 08:35 AM

I don't know if this is helpful or not (I bf my 3 boys exclusively until 6 months while I was an undiagnosed celiac) but all of my babies had green poops on ocassion, as well as mucousy too. I was told that was fairly normal, it just indicated that the baby hadn't got much of the hindmilk...

I would talk to your doctor to see if the GI appointment can be moved up. If not, I agree with jlaw, you have a positive blood test, is there any reason you need a doctor to say you have celiac? If not, I would let your doctor know you are going gluten-free and then switch your diet over.

Because your kids are so young, you might want to feed them gluten-free too. I have many friends who feed their kids gluten-free and because they've done it from the beginning, the kids don't feel like they are missing anything... and frankly, they're not missing that much, it's just food. It could save them future health problems (especially if you suspect celiac, and it will definitely save you time in the kitchen.

I suspect 1, and possibly 2 of my kids have gluten problems (have tested negative) so our whole house is gluten-free now.

Good luck to you in whatever you decide. :)
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#4 T.H.

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Posted 10 October 2012 - 11:05 AM

I would be concerned, too.

I have a friend who is a diagnosed Celiac and when her baby was born, she got glutened and he reacted, too. He ended up with a horrible case of Dermatitis Herpetiformis, which she doesn't have. Once he started crawling, whenever they went out, he would get gluten on his fingers at people's homes, put them in his mouth, and break out in DH again. It's been pretty bad. So to me, it seems very feasible that your baby could react.

It's one of those things where you need to decide, as many here have said, how important is the diagnosis to you. If you really feel like you need the diagnose, would you want to wait until after weaning to do it? Or to pump and build up an extra supply of breastmilk in the freezer so that you could do this test and have gluten-free breastmilk for the duration of the gluten challenge?

Also, for your kids and being gluten free and future testing? They have FINALLY come out with a test that does a mouth swab and can test if the kids are celiac. If I recall correctly it involves swabbing the inside of the cheek with gluten and checking for the body's reaction to it, because a celiac will actually have the beginning of an immunological reaction even in the mouth.

The test isn't covered by most insurance, and it's a couple thousand dollars, but it's something you could think about for the future if the kids are gluten free and you want them tested later. I canNOT recall the name, I'm sorry to say. The same friend I mentioned had her baby finally tested with this test at about 9 months and he tested positive for Celiac Disease. She promised to look up the name, but it's buried in her other paperwork at the moment. :P
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#5 tarnalberry

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Posted 10 October 2012 - 11:44 AM

It's a lot to take in but I just realized I have to think about my 8 month old who I breast feed. I've already cut out all wheat from baby's diet but my primary doctor wants me on gluten until I see a GI. I just don't know what to do. I do think the baby has reacted to my breast milk in the past. There have been mucousy diapers, green stools, gas, all more than with number one as a baby (though he was tiny and this baby is huge).

I really don't think I could wean right now. I think the hormones would make me go a little crazy. But it doesn't seem right to keep nursing him while ingesting gluten. Do you think I could talk my primary doctor into just giving me the diagnosis?

Thanks for any input.

-Megan


Unless you know, or have a good reason to suspect, that baby is celiac (or non-celiac gluten sensitive), there's not reason that you continuing to eat gluten will have any negative effect.

You say "baby has reacted to my breastmilk in the past", but don't elaborate. If it's off and on symptoms, but you've been on gluten the whole time, you can't make a connection to gluten necessarily. What you describe - mucousy diapers, green stool, and gas are all most frequently associated with lactose overload due to oversupply/over active letdown. As this issue *usually* gets better after a number of months, if you noticed this issue more in the past that in last month or two, chances are it's that sort of issue.

Of course, it will be worth noting if there are any changes (both on a physical level and behavior level) to baby after you do go gluten free.
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#6 megsybeth

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Posted 10 October 2012 - 12:50 PM

Thanks everyone. I just got diagnosed yesterday and my doctor has agreed that in my case it's fine to quit gluten. She's really great. I emailed her a request to get the celiac panel because I wanted it done for my other son's diagnosis and she immediately sent me the orders. And when I explained my worry about the baby she said it's fine to quit in my case.

I have no way of knowing that my younger has celiac or suspecting it's likely. I do know about foremilk/hindmilk imbalance from my first baby, where this was a common issue. But I don't remember as much mucous with that one. And early on I wondered about reactions to dairy in my system but his issues have never been so bad that I thought much of it. As he's had more solids and formula, though, there has been more gas, bloating, constipation, consistently green stool. I don't know if it's the formula, the gluten in the breast milk, other solids.

I think for me it's more of an emotional need than a logical one. My baby would probably be fine if I contined for a while on gluten. But since I just found out yesterday it's all so new to me, hard to not feel poisoned. So emotionally I need to know I'm not poisoning my baby.
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#7 StephanieL

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Posted 10 October 2012 - 04:48 PM

They have FINALLY come out with a test that does a mouth swab and can test if the kids are celiac. If I recall correctly it involves swabbing the inside of the cheek with gluten and checking for the body's reaction to it, because a celiac will actually have the beginning of an immunological reaction even in the mouth.



Can you tell me the name of this test? I have never heard of this and would love to be able to test my younger kids.

As for the OP, I am not gluten-free (my blood work was - after my DS's dx). I DO NOT feed my younger 2 kids gluten (3 and 1 years old) in the home and I don't feed the baby gluten at all. Unless there is an OBVIOUS reaction I wouldn't worry about it. You are now off gluten anyway from what I am reading, right? So I guess I am a day late ;)
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