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momofceliacprincess

7 Yr Old Daughter W/ Celiac

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My 7 yr old daughter was diagnosed in July 2007. I have read quite a few of the posts and I'm hoping for help and answers. I will say my dd has been on the diet since Sept. We really had a problem at first with finding the right food. We have that part under control now but she is still having problems. Her stools aren't bright green and nasty any more but she still gets diarrhea alot. I have her on Lactaid milk and she takes the lactaid chewables before she eats anything with dairy in it. I got some vitamins that are gluten-free. I don't even now if she does have a problem with milk and dairy i just don't know why else she would still have the bathroom and tummy pains so much still. I know it can take a long time to heal. Is this the way it is? She is still going to the bathroom almost always right after she eats or wants to lay down and cry cause her stomach hurts. I was told to try so probiotics and I am going to day to find some. Is anyone elses little ones on probiotics? Are there any kids on other prescriptions I should look into getting to help her? Or non prescription stuff? My daughter has the behavior issues as well as the non attentive and "fog" issues. Please tell me what has helped you kids so my princess doens't have to suffer anymore! HELP!!!!!!!

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Can you share some examples of what she typically eats before she gets sick?

It might be helpful to remove dairy all together, not just rely on lactaid-type products.

It seems as though she is still getting some gluten, incidentally perhaps.

Is there a possibility she is cheating at all?

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There is a protein in milk called casein. It very well may be that she cannot digest that protein. Lactose is an enzyme. Therefore, if she is casein intolerant, she would NOT be able to use Lactaid products. I tried them, fell in love with the Lactaid chocolate milk, then had to reluctantly give them up. And I *think* Lactaid pills contain gluten, although I'm not positive on that.

I'd caution you not to switch to soy. Many people who can't tolerate casein can't tolerate soy, either.

There are rice milks and almond milks that are VERY good. Using rice milk on cereal to me tastes almost the same "real" milk and WAAAAAY better than soy milk. Just check that the brand you use is gluten-free because some are not.

If you eliminate dairy and soy, my bet would be that you would see rapid improvement. (If not, then there is a possibility that he digestive tract is so damaged that she cannot eat nightshades either. Nightshades are potatoes, tomatoes, peppers and eggplant.)

For cooking and baking, you can use coconut milk and coconut oil in place of butter. There is also a soy-free, dairy-free shortening called Spectrum. I have not used that, however, because I've had great luck with the coconut stuff in quite a few recipes.

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Welcome!

I would cut out the dairy for at least 6 months to give her time to heal and then you can reintroduce it to see how she does with it. It can cause moodiness and brain fog so that'd be the first thing.

My daughter still has behavioral issues (she'll be 8 soon). I'm thinking her are part of metals which my family is dealing with (although we aren't chronically ill).

All of my children take probiotics and my youngest is 2. We see holistic/alternative type doctors and they are very much into supplementation.

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Can you share some examples of what she typically eats before she gets sick?

It might be helpful to remove dairy all together, not just rely on lactaid-type products.

It seems as though she is still getting some gluten, incidentally perhaps.

Is there a possibility she is cheating at all?

It seems that it's anything she eats. I took her to an allergist yesterday and sagebrush was the only thing they would consider an allergy. I know Celiac isn't an allergy, people that have it get testy when they think you are saying that. That's why I made the point. I wanted to check to see if she had any food allergies on top of having Celiac. What do people do to replace dairy? I feel like I am taking all of her food staples away that would give her energy and vitamins. We buy Pamela's gluten-free free items like flour and cake mix and stuff. I bought the gluten-free product book and I've been reading all the ingredients in stuff. We eat meat and either rice or potatos or gluten-free noodles. She is very good about asking if she can have stuff and is being home schooled right now cause she is so tired all the time. I'm not sure what else to do. Am I expecting to much for her not being on the diet that long?

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I would seriously consider doing two things:

cutting out all dairy

keeping a food journal (in which you record everything she ate along with when she felt sick)

If you notice any trends in the journal (ie every time she eats corn she feels badly) then try cutting out the foods that correspond with symptoms.

If you don't notice any trends in the journal and eating dairy-free doesn't seem to help, you might want to consider an elimination diet.

And finally have you analyzed your kitchen for sources of accidental glutening? I got sick from using our toaster. I made my daughter sick by using a wooden spoon that I thought I had cleaned well enough.

I hope she feels better soon.

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Beware that there is dairy in some of the Pamela's mixes. I know there's buttermilk in the pancake mix. Bob's Red Mill makes a pancake mix, but I think it stinks. I have a homemade pancake recipe but haven't tried it yet.

Use rice milk or almond milk instead of regular milk.

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We had the same thing. Green Poop! It took months for my son to feel better. A lot of folks here suggested pulling dairy. But the nutritionist said that unless there was blood in his stool (and there was not) that it was likely a lactose problem.

It took MONTHS for the stomach ache to go away. I was terrified we'd have to pull dairy because he refuses to eat meat or eggs and that's literally his only protein source. His poop is still weird, but we're definitely on the right track.

It takes some people a long time to heal. I would give it another month or two and then start pulling stuff if she's still not better.

The things that helped were:

Our house is 100% gluten free all the time. The only exception is take out and we usually only have that after the kids are in bed. But I NEVER have gluten ingredients in my kitchen. so, if I'm putting butter on his rice pasta, I don't have to think if it's touched a knife that's touched bread. We bought a new toaster, etc.

We was hands whenever we come in from outside, and basically assume that the whole outside world is covered in gluten. We take wetnaps with us wherever we go and make sure if he has a snack, he at least wipes his hands first.

And time. It took a long time for him to say his stomach didn't hurt.

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Hi!

I just read your post and I know this was suggested, but I wanted to let you know that I had a really hard time myself, with a lot of gluten free items, because they contained soy. I've found that I'm intolerant of any type of soy including soy lecithin. You have to be careful with cookies that contain soy flour and salad dressings that contain soy vegetable oil (there are many on the market with canola oil which was fine for me). Within a few days of cutting out the soy, the stomach pains were gone. Good luck......the food diary is a great way to narrow it down.

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Hi There.

I agree with others that some other foods might also be aggrivating her as well. Milk and corn are the most likely suspects.

Or it could be that she is still healing or a combo of both.

I also want you to know that Jiselle, my 5 year old, has been on a gluten-free diet for a year in early Jan. and she still has stomach pain. We re-did another endo/w bio and it turns out that her villi are perfect, but she still has mild gasritis. We were told as she continued to heal, the pain would lessen and eventually go away.

I know this is not what you wanted to hear,as we do not want our kids to be in pain, but it really can take anywhere from 6 months up to a year or more to heal.

As I said before, we have been on a gluten-free diet since Jan. and Jiselle got her first - IgA in April and Shaylin just got her first - last week.

Hang in there......

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Hi, I am newly diagnosed so I have been going through similar things.

I was told that some people can begin to feel better after a few days, others take months to feel normal and the pains to stop...and it takes up to a year to be completely healed inside.

I have problems with any milk but Rice milk. I tried the pills and L. milk, but I was like your daughter and couldn't handle it. It would give me horrible cramps. I tried Soy milk, but had problems with that too, so have not cut out soy products.

I was using gluten-free cake mixes, breads flours etc. trying to substitute GFt products for wheat products, but I found that I was still getting ill...not as bad as before, but still sick. Now I realize that I can only handle those noodles, breads type products in small amounts and have to stick to a more basic diet of protein, fruit and vegetables.

When I spoke to my dietician, she said to make sure to stop dairy, high fat, high sweet, stringy foods, (like roast), chocolate, corn and spicey foods because my digestive system is too damaged to handle them yet. She said I could slowly add them back one at a time when the tummy pains stop and see if I will eventually be able to handle them.

Also make sure your daughter drinks a lot of water or herbal teas like peppermint to stay hydrated and stays away from soda and other caffiene drinks until the gas pains stop and she feels better.

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