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smsm

New Baby/how To Handle

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I can't figure out the right sub forum for this question: I was diagnosed 2.5 years ago. I have two children and they were diagnosed at the same time (they were 1.5 and 4 at the time). Our house and our lives are entirely gluten-free and my husband never has gluten around me or the children under any circumstances. So, I am expecting our third and have been asked several times about this baby and gluten. Since I am strictly gluten-free and there will be no gluten around the baby, it will just have the gene but not celiac - correct? You have to have gluten ingested to trigger the actual disease? So, while the baby would never have gluten from me, around me or in the presence of it's (excuse the pronoun use of it!) siblings - what about out in the world? Birthday parties of peers or at a meal with just it's Dad? I can't figure out the status of what I would allow or how the baby should think of it's health. It is obviously genetically predisposed to have celiac and should therefore probably just stay from gluten as best as possible but does it need to be as strict as if already diagnosed? I may not understand the nature of how celiac develops - please help me out if I am on the wrong path or if you have any insights! Thanks!

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Think of it this way, 30 percent of the US population or so have the genes, yet they do not develop it. Of that percentage only something like 1 or 2 percent actually do.

 

The child may never develop it. Of course, its something to keep an eye on due to family members having it.

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Think of it this way, 30 percent of the US population or so have the genes, yet they do not develop it. Of that percentage only something like 1 or 2 percent actually do.

 

The child may never develop it. Of course, its something to keep an eye on due to family members having it.

Thanks for the thought! I do think that is important - the only thing that gives me pause is that 100% of the people in my immediate family with the gene did develop the disease. The population statistic doesn't seem to apply to us. In my (pretty large) extended family, nearly all the people have elected to not get tested and to suffer various health symptoms that I think might indicate that some of them have it. Of the three people that did decide to test, all of them tested positive for celiac. Not sure if that is relevant.

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My kids are all gluten-free at home. My oldest has Celiac disease. My middle was tested after being exposed 3 days a week at school durring snack time as we don't let her have gluten in the house. My youngest is only 18 months and we haven't given him gluten directly (I breastfeed and am not gluten-free so he may/may not be getting any).  When he goes to school I assume it'll be the same way, he'll get snack and we'll test him once he's been getting it for a while. 

 

We plan on testing DD every 3 years or if there are symptoms of celiac disease developing. This is the standard for first generation relatives of those with celiac disease.

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Unless you see a reason to assume that your LO has it, I would assume that he/she doesn't.  If you keep LO strictly gluten-free, you won't ever know if he/she has it - you can't find out without ingesting gluten.  If LO has gluten occasionally - at other people's houses, at preschool, with Dad, etc. - and has a negative reaction (more than one time), then you would want to go down the route of figuring out if you want to pursue testing.

 

My daughter hasn't been tested, and isn't strictly gluten free - we are 99% gluten free at home (she's had cheerios, and shares wheat-based bread with daddy when I'm not home sometimes), and she gets gluten if we share a snack with friends or when she's at preschool (though she usually opts not to eat the snack).  We've seen no symptoms, so I assume that she's not celiac at this point.  I don't know if she carries the genes; she hasn't been tested.  But we are aware of what to keep an eye out for, and will pursue testing if we feel it does become an issue.

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I would consider keeping the baby gluten-free - why risk developing an autoimmune disease with horrible symptoms and risk developing more health problems just for the convenience of being able to eat what peers are eating at birthday parties a few times a year? Packing food to share is easy, and to be honest, if he/she is allowed to eat food that the older siblings can't, it is going to cause problems.

I would say, keep him/her gluten-free until adulthood (if possible) and then he can make his own decisions regarding gluten. All3 of my kids are gluten-free even though only 2 shows signs of gluten intolerance. He isn't missing out on any vital foods and I am not risking his health for convenience's sake.

Good luck.

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My youngest Grand has been gluten-free since birth -- consequently it will likely be years before we know if she has celiac disease.  Her brother, mother and I have it so their home is completely gluten-free.  Her pre-school keeps her gluten-free as she attends the same school as her older brother and it is easier for their Mom to request both kids stay gluten-free -- also this little 3 year old does have other food intolerance although she has never had gluten -- but is the healthiest toddler this family has had -- sooooo living gluten-free can't hurt.

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Interesting to read.  My daughter is only 10, but will have to deal with this some time in the future.  Of course, by then, so many things may have changed.

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