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We have finally determined (through elimination and challenge) that gluten is the culprit causing DD's health problems (it manifests as mostly respiratory). She is currently miserable and we'll be waiting anxiously for it to clear out of her system in a few days.
But then what? I've been looking up info on gluten-free living and we've been getting a decent start on meal planning, but I'm not sure what else we should be doing now. What kind of docs know about intolerances? We've been through pediatricians, allergists and pulmunologists with nobody thinking it could be food related (I had to push this one on my own). So who do we talk to, if anyone? A nutritionist? Our pediatrician? Does she need some sort of other testing to back up what we found? Allergist found nothing when testing for IgE. She doesn't exhibit any of the listed symptoms of celiac, but do we have to test for that? Ugh... At least I feel glad knowing we've sorted out what it is! Now to figure out how to live with it all...

As for the living part: for those of you with intolerant LOs, does your whole family eliminate the problem substance? And does anyone have any suggestions for how to explain all this to a toddler? She gets so upset when she sees other kids having things she can't have, even if I have something really similar or even better for her. I can't imagine that gets any easier as kids get older. In any event, thanks for any input and all the advice that has got us to this point. I would never have figured it out if it weren't for a friend and others here.
 

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A GI doctor would normally deal with intolerances, but since it's respiratory symptoms, I don't know. DD2, DS and I are gluten free. DH and DD1 are not. But the foods I make for dinner are safe for all of us (though if it's burgers, DH and DD2 will have buns, for example). And once in a while I'll make pizza for DH and DD2. I work hard to make treats for the kids so that they won't feel left out. But for my DD2, since this started around 13 months old, we said things were "happy food" and "not happy food" because they would make her "not happy" (screaming all night long). She caught on pretty quick. She's more likely to sneak things now at 4yo than she did when she was younger. She used to always ask before trying something. And even now she knows what's safe and what isn't, but sometimes the draw is too much for her (though not very often), and DS, who's 8yo won't risk it at all. He's very in tune with cross contamination.
 

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We're all gluten free. I think that if one person has an issue, it's likely others will too, although I think adults are usually slower to show improvement than kids. I prefer keeping a gluten-free household. At first it was more expensive because we relied a lot on pre-made GF stuff, but over time that's lessened, and the cost difference between GF and just eating healthy isn't that great (we just needed the push of starting GFCF to actually eat healthy
).

We've done no testing for foods, and I'm fine just telling people that we cannot eat X.

For the kids, I try to focus on all the great, tasty foods we can eat. And since I've learned about so many new foods and new meals since we started this, I've been excited too. I'll admit, I wasn't excited the first 6 or 12 months, I was just glad to be feeling a bit better, but I worked my way around to being excited, it just took a while. And if you know anyone else with different dietary needs, I found a lot through our local homeschooling group actually, that helps normalize things. I tell the kids that different people need different things for their bodies to feel good so they have lots of energy to play. Simple explanation, I admit, but it seems to be holding (for the most part) with my kids, ages 3 and 5.

Oh--re: celiac/gluten intolerance, based on family history and symptoms, I highly doubt my daughter has celiac, but I will say we have allergies, or whatever I need to for the short version to explain to people that we are bringing our own food. I don't trust people on the cross-contamination issue, and it's too stressful (for them and me) to try to explain how to not get gluten into something (besides something simple like cut up fruit and veggies). Oftentimes I'll just say thanks, we have allergies, I brought food for us, and nobody asks more, so no more explanation is needed. I over-explained at first, when I was getting used to this.
 

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I have been mostly gluten free since DS was a newborn. He has wheat/oat issues but I'm not sure if it's seperate issues or just gluten in general (we are trialing wheat yet again right now due to DH's insistence).

What I can tell you is that you can find substitutes for pretty much anything available out there, bread, pasta, pizza, condiments, bakery, etc.

So I would start collecting those, and then if you know your DD is going to be around non-GF food, have a similar substitute available for her.

natural food stores and co-ops are great resources for this and there are also online stores that are exclusively GF.

ETA: sorry, I see you already said you are giving her similar options. Is she old enough to understand that if she eats something it may make her sick?
 
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