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Things Got Better, And Now They're Not

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So, my son (4) tested positive on his celiac panel last June. We pulled the gluten and found a GI who was willing to work with us w/o biopsy. We saw changes in him fairly quickly, but his healing was slow and it was September/October before his belly pain was gone. His appetite tripled and he was starting to introduce foods back into his diet that he had eliminated. He is a VERY picky eater.

Then last November, before Thanksgiving, a stomach virus made it's way through my house. He was hit the hardest. My husband, daughter and me recovered completely within a week or two. But my son, the celiac, has had a stomach ache ever since. And over the last week or so, it's been getting worse. His appetite is way down.

We went to the GI and they ran every test under the sun, including the celiac panel (His TTG was down 50 points from June), so we know we're on the right track.

His diet is essentially the same as it was since last June.

He eats:

"chex" Health Valley corn and Rice chex

Muenster Cheese (Boars Head or Trader Joe's)

Lactose Free Milk

homemade gluten-free muffins

tinkyada or Trader Joe's pasta

Fruit: mostly apples, apple sauce and bananas

cottage cheese

juice

Popsicles (Edy's or Trader Joe's, both gluten-free)

sorbet

Yes, I know his diet isn't great. But it's not terrible. I would have to starve him until he caved to get him to eat meat or beans, (Or peanut butter, or any alternative source of protein) or anything he doesn't want to, so pulling the dairy would be really tough.

So what gives? His school is the same. They don't use play dough in his classroom. Our house is 100% gluten free, even for stuff he wouldn't eat if I gave him a million dollars.

Plus I don't think it's gluten because his BM's are normal, and any cc causes yellow floating yuckies.

Feeling a little nutsy here. We occasionally go out to eat, mostly to Asian restaurants like Wagama, where he gets a plain bowl of rice noodles and we put fresh lemon or lime juice on them.

I'm just stumped. What the heck is going on here?

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I'm just wondering if that flu was just enough to upset the delicate balance and cause dairy to be a problem right now. If it was me, I would try eliminating it for a few weeks.

I haven't been to Wagamama. Is there a potential CC issue with strainers used for soba(don't always contain but often are dusted with wheat flour to prevent sticking) or other noodles that contain wheat flour?

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I would try and pull the milk too, does he do cheese? My plan is to get the kids to try new milk (we use rice milk, but I want to try hemp) by putting the new milk in the old box. lol Maybe that would help hide that you're taking it away? Have you thought about digestive enzymes or probiotics? I know probiotics helped me a lot last year, and if my test is negative I'm going back to those to see if they'll help again.

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Oh Margaret, I feel for you!!! We still have issues with my daughter and dairy is under the spot light. That's a big part of her protein!!!

So he won't eat hot dogs or chicken nuggets???!!!!

Would he eat homemade popsicles for you? I make smoothies for my kids all the time: V-8 splash juice with bananas and frozen strawberries, mangos, blueberries, peaches - any of the frozen fruit mixes - but not the raspberries/blackberries - they're a little too seedy. We take the leftover smoothies and put it into popsicle molds and freeze for popsicles. You could add some protein powder (I'm not sure what kind, I haven't done this with my kids) to the original smoothie mix to get him some protein if you are going to try dairy-free. And FYI, at least for my kids, we go heavy on the frozen strawberries because the end color needs to be pretty close to red . . . everybody knows that red popsicles taste better. :P

I would also check into the probiotics. Might try this first before going through the trama of removing dairy. I have a friend that swears by them.

Or if you try one of the alternate milks, maybe disguise it as hot chocolate or blend it with some rice milk ice cream and banana and make a shake.

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If you don't want to pull dairy just yet, I would definately try enzymes and probiotics. I don't use enzymes anymore, but I found some a while back at the health food store that actually tasted pretty good. My kids begged for them....same with probiotics, I have a cherry flavored chewable kind that they love to take. I notice the biggest difference with the probiotics, it really seems to keep things in balance.

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If you don't want to pull dairy just yet, I would definately try enzymes and probiotics. I don't use enzymes anymore, but I found some a while back at the health food store that actually tasted pretty good. My kids begged for them....same with probiotics, I have a cherry flavored chewable kind that they love to take. I notice the biggest difference with the probiotics, it really seems to keep things in balance.

Tamara, how long were your kids on them? Do you notice a relapse of symptoms when they come off of them? Do you wean them off? Could you give us the name brand that you use since we know it will be gluten-free? ;)

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So, my son (4) tested positive on his celiac panel last June. We pulled the gluten and found a GI who was willing to work with us w/o biopsy. We saw changes in him fairly quickly, but his healing was slow and it was September/October before his belly pain was gone. His appetite tripled and he was starting to introduce foods back into his diet that he had eliminated. He is a VERY picky eater.

Then last November, before Thanksgiving, a stomach virus made it's way through my house. He was hit the hardest. My husband, daughter and me recovered completely within a week or two. But my son, the celiac, has had a stomach ache ever since. And over the last week or so, it's been getting worse. His appetite is way down.

We went to the GI and they ran every test under the sun, including the celiac panel (His TTG was down 50 points from June), so we know we're on the right track.

His diet is essentially the same as it was since last June.

He eats:

"chex" Health Valley corn and Rice chex

Muenster Cheese (Boars Head or Trader Joe's)

Lactose Free Milk

homemade gluten-free muffins

tinkyada or Trader Joe's pasta

Fruit: mostly apples, apple sauce and bananas

cottage cheese

juice

Popsicles (Edy's or Trader Joe's, both gluten-free)

sorbet

Yes, I know his diet isn't great. But it's not terrible. I would have to starve him until he caved to get him to eat meat or beans, (Or peanut butter, or any alternative source of protein) or anything he doesn't want to, so pulling the dairy would be really tough.

So what gives? His school is the same. They don't use play dough in his classroom. Our house is 100% gluten free, even for stuff he wouldn't eat if I gave him a million dollars.

Plus I don't think it's gluten because his BM's are normal, and any cc causes yellow floating yuckies.

Feeling a little nutsy here. We occasionally go out to eat, mostly to Asian restaurants like Wagama, where he gets a plain bowl of rice noodles and we put fresh lemon or lime juice on them.

I'm just stumped. What the heck is going on here?

I would remove dairy. Lactose is digested at the tips of the villi. If those villi arent there you're lactose intolerant. Being on dairy in someone that is first diagnosed with celiac can prevent the villi from healing. I would remove dairy immediately. Bayleigh's Dr tells all patients he diagnoses w/celiac to go casein free immediately. I kept Bayleigh on dairy for 2 months after going gluten free. She improved immediately, and after two months her reactions started all over again. Try it for a week and see what happens. You'll see instant results. We did.

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The brand of probiotics I use is "Nature's Way" Primadophilus for kids. The kids love them, there may be some better ones out there, but these are affordable. The enzymes were "NOW" chewable papaya enzymes, but we haven't used those since last summer, so you may want to check the gluten free status again. I also came across another brand of digestive enzymes for kids, called "Renew Life Buddy Bear Digest Chewable Digestive Enzyme for Kids". I couldn't find it's gluten free status online, but those might be worth checking out too.

I didn't wean off the enzymes, she seemed to be doing better after a few months, so I just never bought more after we ran out. It's so hard with these kids sometimes, it seems like it's a never ending puzzle to put together! If you do eventually have to pull dairy, it is really more doable than it seems. Good luck!

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Margaret, I feel like I'm hi-jacking your thread but I think I'm in the same place as you right now and hopefully the questions that I ask will help you with your decision, too.

Tamara, with four gluten-free/cf kids, I consider you an expert. What do you use for butter, yogurt, milk and cheese? These are all beloved staples of my daughter's diet. When we first went gluten-free, I tried to get her to drink vanilla soy milk and she would have nothing to do with it. Then we settled on Lactaid Milk. For all other dairy, we took a Lactaid chewable. (The GI had us do that for 6 weeks)

Is goat's milk/cheese alright to use?

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Thanks guys! I hadn't thought of getting him a chew-able probiotic. I can't get yogurt into him since I pulled the Danimals thanks to their flaky, "maybe there's gluten and maybe there isn't!" statement on their website.

He does eat a little cottage cheese with probiotics but not consistently.

I agree that pulling the dairy is a good idea in theory, but I'm not sure if pulling all "acceptable" (to him) protein sources would work. It may cause problems if he had no protein. He got better on the dairy over the summer, so I'm loathe to pull it now.

He will not eat any meat (including chicken nuggets and hot dogs). We are generally carnivorous folks. My friends and family love my cooking, so I really don't think it's me!

So, we'll go to the health food store this weekend and find some digestive aids/probiotics.

You guys RULE!

Thanks! This was really helpful.

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Or if you try one of the alternate milks, maybe disguise it as hot chocolate or blend it with some rice milk ice cream and banana and make a shake.

I got to thinking . . . I made an assumption here that I don't know to be true . . . Do the alternative milks have the same level of protein? calcium?

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Some mainstream pharmacies will have chewable forms of the probiotics(acidophilus)behind the counter if you ask the pharmacist. Or they can order one. I got one this way that was free of artificial sweeteners and dosed for kids.

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Margaret, I feel like I'm hi-jacking your thread but I think I'm in the same place as you right now and hopefully the questions that I ask will help you with your decision, too.

Tamara, with four gluten-free/cf kids, I consider you an expert. What do you use for butter, yogurt, milk and cheese? These are all beloved staples of my daughter's diet. When we first went gluten-free, I tried to get her to drink vanilla soy milk and she would have nothing to do with it. Then we settled on Lactaid Milk. For all other dairy, we took a Lactaid chewable. (The GI had us do that for 6 weeks)

Is goat's milk/cheese alright to use?

I definately don't feel like an expert! But we have gotten pretty used to it, and I have to keep it affordable since we are a family of 6. For butter, I use Smart Balance w/flax oil (not the buttery spread, that one contains whey). I get it at Walmart, and I'm pretty sure it says gluten free right on the tub (I'm out at the moment). I know alot of people use Earth Balance butter sticks, but those are too pricey for me. For milk, we use Almond Breeze or Naure's Harvest Hemp milk. We also drink Minute Maid Orange juice for kids....it has the same calcium/vit D as milk. I read somewhere (dari free.com I think?) that calcium in fortified orange juice is absorbed more readily than cow's milk. Don't know if that's true or not, but it's interesting.

For yogurt and cheese, we just do without. I've tried soy yogurts, but none of us really liked the taste very much. Hunt's lemon and lemon meringue flavor pudding is also casein free. And on a side note....I have tried adding dairy back into my diet at one point, and two things happened. One, cheese didn't taste nearly as good as it used to! And second, I actually started craving more dairy, which I figured was not a good thing. It's out for good now.

So for everyone who's kids absolutely love their dairy, if you do eventually pull it, they might actually start eating a better variety of food. Just my two cents, I know every kid is different! As for protein, I've gone to alot of Vegan websites, as well as nutritional breakdown sites to try and gauge exactly how much protein and calcium etc. that my kids should be getting. I have found that it's actually quite easy, and they don't need as much as I thought. Here's an example of protein requirements:

Ages 1 to 3 - 1300 calories and 16 grams protein

Ages 4 to 6 - 1800 calories and 24 grams protein

Ages 7 to 10 - 2000 calories and 28 grams protein

I also try to add in as much healthy fat as I possibly can....I use olive oil and coconut oil quite a bit. I cook in it, I put it in rice, pasta, veggies, etc. And if your child will eat muffins, you can add gobs of good stuff in them w/out kids even knowing! Ground up flax seed, veggie puree...you name it.

Hope that helps some! I still have alot to learn myself, but we've adjusted pretty well so far!

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I can totally relate ! My gluten/casein free son (age7, recently diagnosed) hardly eats anything. Now he cant have "real" milk, he doesn't want any milk. He does love the amond chocolate milk, you should try it, if you haven't yet. Almonds have tons of calcium in them so it is a great milk substitute. My son eats dry cereal (mesa sunrise) with a glass of chocolate almond milk for breakfast (and snack in the day). It is funny to see him with a bowl of dry cereal and a spoon ! For cheese we use Tofutti. They have a cream cheese (he likes it on toasted Ener-G corn loaf bread or tapioca burger buns), I am grateful for , since he doesn't like margarine, butter, jelly, etc. They also do slices...we like the mozzarella one, it has a decent texture. You should also try Real Foods corn thins. They are so bland, they couldn't offend anyone. They are basically just popped corn, sunflower oil,& salt, they kind of look like rice cakes, but are thinner & more appealing. One thing you could do is arrange for your son to have a playdate at someones house and have the friend offer new foods (obviosly pre-arrange by you), so he thinks it is new and exciting, not from Mommy ! I'm not sure, but I think Toffuti does a cottage cheese ? Tofutti doesnt have any milk proteins or lactose (unlike most lactose/dairy free stuff)

If your son eats sauce on his pasta you could blend it with vegeatables, thats what I do.

Good luck

Anyone else have tips for such finnick eaters ?

Thanks

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I got to thinking . . . I made an assumption here that I don't know to be true . . . Do the alternative milks have the same level of protein? calcium?

So I was at Trader Joe's last night and looked at the rice milk and almond milk and NO they do not have the protein . . . forgot to check the calcium <_<

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Margaret, do you think he would eat a peanut butter cookie?

I think I've seen this recipe on the board, too, getting rave reviews. It has a fair amount of sugar but most kids are eating a bunch of jelly when they are having their peanut butter and the egg gives it a bit more protein . . . may be worth a try.

http://allrecipes.com/Recipe/Flourless-Pea...ies/Detail.aspx

(three ingredients: Peanut butter, sugar, egg)

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Just thought I'd give you all an update.

He's been on Miralax and Probiotics for a couple weeks now. He is still complaining of stomach pain, but he's EATING again. So, I'm not sure what made the difference. The Miralax didn't make much of a difference in his BM's. He never seemed particularly constipated to me, but the Doctor wanted to try it.

But suddenly, he's back on the food. He even ate a new kind of muffin on Monday, so that's good. Unfortunately the recipe calls for almond flour so, I can't pack them for lunch at his nut free preschool. :rolleyes: But it's good to add something that has protein that's not dairy!

thanks again for all the good suggestions. I really think the probiotics made a big difference.

-Margaret

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