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Enterolab Results In On My 2 Kids, Feeling Overwhelmed Right Now

Sarah8793

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Sarah8793 Enthusiast
Sarah8793
Posted

The results from EnteroLab came today for ds(7) and dd (4). They each received one of my main celiac genes and a gluten sensitive gene from dh (didn't know he had until now). Both need to go off gluten AND Casein. :o:( Only ds has the autoimmune reaction going. Thankfully dd has a score of 9 on that and over 10 is considered an autoimmune reaction. I am gluten-free and cf but it seems much easier to worry about myself as opposed to 2 growing kids. I'm going to put them on the diet. We have a birthday party to go to this saturday, and another one coming up in a few weeks. I'm not ready to deal with all of this. It seems so unfair for them. Dh is asking if they can have g or c on special occasions, but just not in the house. I replied to him that that is the same as saying it is okay to smoke cigarettes now and then. I know that cheating is not okay (I never do), but then on the other hand, I think that if I would have been on a gluten-free &cf diet as a kid with periodic deviations I still would be way healthier than I am now. As I type this I can almost hear what many of you will be saying about this and please give me your 2 cents on this even if you think differently. My feelings on this come from my own memories of childhood and wanting to fit in. Just feeling torn right now even though I know what needs to happen. Thanks for reading.

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Nic Collaborator
Nic
Posted

I am not sure how much research you have done on this disease. I understand you have it but sometimes we research better when it is for our kids. For example, my father has Celiac (59 yrs. old) and he just doesn't eat anything that is obviously gluten. He doesn't even pay attention to the small stuff. Then my son got diagnosed and here I came to this forum. And everything I read about that can happen from small amounts of gluten, I research to make sure of the validity. It is very scary. I did not know until my son got sick, that Celiac's who do not follow a strict diet are at a higher risk for other autoimmune diseases and also Lymphoma. That scares the heck out of me. I do understand your feelings completely. While I was waiting for my son's test results I was already saying to myself, "well maybe he can have just a little once in a while". But once we got the positive, I knew I couldn't especially with all the risks. Even a small amount that shows not symptoms can be hurting them. Sorry to be a downer :( .

Nicole

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I am not sure how much research you have done on this disease. I understand you have it but sometimes we research better when it is for our kids. For example, my father has Celiac (59 yrs. old) and he just doesn't eat anything that is obviously gluten. He doesn't even pay attention to the small stuff. Then my son got diagnosed and here I came to this forum. And everything I read about that can happen from small amounts of gluten, I research to make sure of the validity. It is very scary. I did not know until my son got sick, that Celiac's who do not follow a strict diet are at a higher risk for other autoimmune diseases and also Lymphoma. That scares the heck out of me. I do understand your feelings completely. While I was waiting for my son's test results I was already saying to myself, "well maybe he can have just a little once in a while". But once we got the positive, I knew I couldn't especially with all the risks. Even a small amount that shows not symptoms can be hurting them. Sorry to be a downer :( .

Nicole

No, you aren't a downer by any means. I just got the results a few hours ago and I think I am still in some denial. :rolleyes:

mommida Enthusiast
mommida
Posted

I think it is normal to go through this stage of denial, anger, self pity, and the list will go on.

You are just going to deal with the emotions as they come.

You can find a gluten free casein free replacement for just about everything. So you need to find safe foods you enjoy, starting with gluten-free Cf birthday cake and ice cream for that party. (we aren't CF so if someone who is would post their best recipe or suggestions.)

It gets so much easier, I promise.

L.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I think it is normal to go through this stage of denial, anger, self pity, and the list will go on.

You are just going to deal with the emotions as they come.

You can find a gluten free casein free replacement for just about everything. So you need to find safe foods you enjoy, starting with gluten-free Cf birthday cake and ice cream for that party. (we aren't CF so if someone who is would post their best recipe or suggestions.)

It gets so much easier, I promise.

L.

Thanks for your support. I have a good gluten free cake recipe. The only icecream I have tried is soy. So, do I just bring his own cake and icecream to the party?

wolfie Enthusiast
wolfie
Posted
The results from EnteroLab came today for ds(7) and dd (4). They each received one of my main celiac genes and a gluten sensitive gene from dh (didn't know he had until now). Both need to go off gluten AND Casein. :o:( Only ds has the autoimmune reaction going. Thankfully dd has a score of 9 on that and over 10 is considered an autoimmune reaction. I am gluten-free and cf but it seems much easier to worry about myself as opposed to 2 growing kids. I'm going to put them on the diet. We have a birthday party to go to this saturday, and another one coming up in a few weeks. I'm not ready to deal with all of this. It seems so unfair for them. Dh is asking if they can have g or c on special occasions, but just not in the house. I replied to him that that is the same as saying it is okay to smoke cigarettes now and then. I know that cheating is not okay (I never do), but then on the other hand, I think that if I would have been on a gluten-free &cf diet as a kid with periodic deviations I still would be way healthier than I am now. As I type this I can almost hear what many of you will be saying about this and please give me your 2 cents on this even if you think differently. My feelings on this come from my own memories of childhood and wanting to fit in. Just feeling torn right now even though I know what needs to happen. Thanks for reading.

((((HUGS))))) At least you know now, though, and you can prevent them from suffering down the road. It is a hard adjustment to make for anyone, but I think it is much harder for kids. What I have learned over the past few weeks since DS has gone gluten-free is to make sure that there are plenty of gluten-free treats available for him. We found these great italian ice and italian ice popsicles at Wal-Mart made by Philly Swirl and they are marked gluten-free right on the package! I bet they are casein free, too. He loves them!! Have you read Danna Korn's Celiac Kids book? It is a great read. As far as the cheating goes, I have been explaining to DS why it is important not to cheat (trading lunch at school, guessing if something is gluten-free or not) and he is doing very well. If there is a special occasion, just make sure you have the gluten-free & CF equivalent for them. There are tons of great treats out there, you just have to find them or learn how to make them.

Thanks for your support. I have a good gluten free cake recipe. The only icecream I have tried is soy. So, do I just bring his own cake and icecream to the party?

I would. I send DS to events with his own treats. Have you tried Rice Ice Cream? Or maybe a non-dairy sorbet type?

mommida Enthusiast
mommida
Posted

Yes, you bring your own cake and ice cream. With kids you have to bring a safe favorite type of candy and snack food too. It is best to pack an assortment that your kids can pick out the replacement. You have to trade them for all the forbidden foods they get handed to them. Call ahead and find out the menu so you can make a similar meal.

The really funny thing- your kids are going to be happier being more in charge of their diet. Get yourself a nice cooler/ picnic basket, and have the kids help you pack it. They may even surprise you by choosing fruit for their snacks, but have them make decisions about what they are eating.

L.

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Nancym Enthusiast
Nancym
Posted

If you set the expectation that wheat is ok for special occassions, then they'll probably grow up with the notion that wheat is probably ok for them to eat. It is going to be harder for people who don't have drastic, violent reactions to get it straight in their head that it isn't good to eat it.

My instinct is that you should take the whole family gluten-free and CF and do everything in your power to keep them that way. Then you won't be sending mixed up messages.

Guest nini
Guest nini
Posted

it's easier on kids when you give them choices and a sense of control over their diet.

when my daughter is invited to a party, I usually take all her food unless the other parent of the child whose party she's going to has made accomodations... like making sure there is a certain ice cream or candy she can have. But I usually take her a pizza already cooked up and a gluten-free cupcake.

they cannot cheat even a little bit, even a molecule is enough to do ongoing damage, and most of us after we have been completely gluten-free for a while, even a tiny amt. is enough to cause us to feel very ill for quite a while. But even if you aren't one that gets symptoms when glutened, there is always damage being done even if you don't feel it.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
((((HUGS))))) At least you know now, though, and you can prevent them from suffering down the road. It is a hard adjustment to make for anyone, but I think it is much harder for kids. What I have learned over the past few weeks since DS has gone gluten-free is to make sure that there are plenty of gluten-free treats available for him. We found these great italian ice and italian ice popsicles at Wal-Mart made by Philly Swirl and they are marked gluten-free right on the package! I bet they are casein free, too. He loves them!! Have you read Danna Korn's Celiac Kids book? It is a great read. As far as the cheating goes, I have been explaining to DS why it is important not to cheat (trading lunch at school, guessing if something is gluten-free or not) and he is doing very well. If there is a special occasion, just make sure you have the gluten-free & CF equivalent for them. There are tons of great treats out there, you just have to find them or learn how to make them.

I would. I send DS to events with his own treats. Have you tried Rice Ice Cream? Or maybe a non-dairy sorbet type?

Thank you! :) I am going to go to Wal-Mart today and look for the Philly Swirl popsicles. I haven't read Danna's book yet, but will be soon. I'm going to be buying cookbooks now too. Are you substituting with a gluten-free bread? Is your whole family gluten-free now? This is another decision. Basically my dh is out numbered. :lol:

Yes, you bring your own cake and ice cream. With kids you have to bring a safe favorite type of candy and snack food too. It is best to pack an assortment that your kids can pick out the replacement. You have to trade them for all the forbidden foods they get handed to them. Call ahead and find out the menu so you can make a similar meal.

The really funny thing- your kids are going to be happier being more in charge of their diet. Get yourself a nice cooler/ picnic basket, and have the kids help you pack it. They may even surprise you by choosing fruit for their snacks, but have them make decisions about what they are eating.

L.

Love these ideas! I can see my kids going for this. I'm feeling so much better now. Thank you! :)

If you set the expectation that wheat is ok for special occassions, then they'll probably grow up with the notion that wheat is probably ok for them to eat. It is going to be harder for people who don't have drastic, violent reactions to get it straight in their head that it isn't good to eat it.

My instinct is that you should take the whole family gluten-free and CF and do everything in your power to keep them that way. Then you won't be sending mixed up messages.

This makes sense. The denial is going away. :lol: I think I knew this but was in a temporary moment of disbelief. I would like to have all of us go gluten-free-cf, but not sure about how dh will feel. I think he is shocked right now also, but will most likely come around and do it with us.

when my daughter is invited to a party, I usually take all her food unless the other parent of the child whose party she's going to has made accomodations... like making sure there is a certain ice cream or candy she can have. But I usually take her a pizza already cooked up and a gluten-free cupcake.

I think I can manage substitutes for cake and icecream, but not sure about pizza. Is there even such a thing as gluten-free and cf pizza? or a recipe?

mommida Enthusiast
mommida
Posted

I would wait a while before even trying the bread. It is way better toasted or grilled. Give yourselves time to forget what normal bread is like before you try gluten-free CF replacement stuff. We like the Chebe bread mixes.

L.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
I would wait a while before even trying the bread. It is way better toasted or grilled. Give yourselves time to forget what normal bread is like before you try gluten-free CF replacement stuff. We like the Chebe bread mixes.

L.

Another good idea. :) Yes, I started the gluten-free bread immediately for myself when I went gluten-free and I haven't forgotten the difference yet. I have an old bread machine that I used years ago (long before I went gluten free). Would thoroughly cleaning it be o.k.? Or would it be better to get a new one? Or do they turn out better in the oven? Thanks again for your help. There isn't a way to convey how much it helps.

wolfie Enthusiast
wolfie
Posted
Thank you! :) I am going to go to Wal-Mart today and look for the Philly Swirl popsicles. I haven't read Danna's book yet, but will be soon. I'm going to be buying cookbooks now too. Are you substituting with a gluten-free bread? Is your whole family gluten-free now? This is another decision. Basically my dh is out numbered. :lol:

Love these ideas! I can see my kids going for this. I'm feeling so much better now. Thank you! :)

This makes sense. The denial is going away. :lol: I think I knew this but was in a temporary moment of disbelief. I would like to have all of us go gluten-free-cf, but not sure about how dh will feel. I think he is shocked right now also, but will most likely come around and do it with us.

I think I can manage substitutes for cake and icecream, but not sure about pizza. Is there even such a thing as gluten-free and cf pizza? or a recipe?

Kinnickinnick makes frozen pizza crusts that are Gluten-free Casein-free. They are AWESOME!!! They come in packs of 4. I eat them all the time.

mommida Enthusiast
mommida
Posted

I think a good thorough cleaning will be enough. The bread maker I had was very easy to clean, that is why I say that. I just bake the bread in the oven because some of the recipes require mixing for a longer time period and the consistency is like a thick cake batter. I love the Bette Hagman French bread recipe! It is perfect right from the oven, but does not last much longer than that. The consistency changes in about half an hour.

L.

celiacgirls Apprentice
celiacgirls
Posted

My 2 girls and I are all gluten-free/CF. 2 of us just started the CF part about 2 weeks ago so we are very new to it. I think it is easier for them that I am on it too. I cook gluten-free/CF but DH does still have his regular bread, milk, etc. I also make sure there are plenty of safe treats for them to have.

I am aware that they may cheat on the diet but I do not say it is ok. Like someone said it is like smoking a cigarette. They might find after being on the diet that they do get sick if they eat a piece of cake at a party. I always provide a really good treat when they go to a party or whenever the other kids get something they can't have. I'm still struggling with what to give them. We used to rely on candy and ice cream but with the CF part, that doesn't work so well. They eat a lot of Skittles, Starburst, and popcicles. As far as I can tell those are gluten-free/CF.

Even though my DH can eat whatever he wants, I think he is the one struggling with this the most. So don't be surprised if it takes yours a while.

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
My 2 s and I are all gluten-free/CF. 2 of us just started the CF part about 2 weeks ago so we are very new to it. I think it is easier for them that I am on it too. I cook gluten-free/CF but DH does still have his regular bread, milk, etc. I also make sure there are plenty of safe treats for them to have.

I am aware that they may cheat on the diet but I do not say it is ok. Like someone said it is like smoking a cigarette. They might find after being on the diet that they do get sick if they eat a piece of cake at a party. I always provide a really good treat when they go to a party or whenever the other kids get something they can't have. I'm still struggling with what to give them. We used to rely on candy and ice cream but with the CF part, that doesn't work so well. They eat a lot of Skittles, Starburst, and popcicles. As far as I can tell those are gluten-free/CF.

Even though my DH can eat whatever he wants, I think he is the one struggling with this the most. So don't be surprised if it takes yours a while.

Thank you for the tips. :) Yes, I can see how this will be hard for my dh. He said what about when I want to eat icecream (a craving he only gets 3-4 times a year). I told him that I didn't mind watching him eat icecream, but that it would be hard for the children, and asked that he eat it out instead. He was understanding. I think it would be much more difficult for him if he had a big sweet tooth.

Guest nini
Guest nini
Posted

there is a very simple way to make homemade (ice cream) for your family that is not only gluten-free but cf and vegan as well...

peel and cut up and freeze bananas (freeze them on a cookie sheet w/ wax paper then transfer to a freezer bag)

add frozen bananas to your blender, add in whatever liquid you want, rice milk, soy milk, water, add frozen fruits for a fruity flavor, add vanilla extract for a vanilla flavor, add chocolate flavored soy milk or rice milk (making sure it is gluten-free) for a chocolate flavor, add your fave nuts if you like, in fact you can add anything you want... but it's really healthy, really easy and really yummy, and this way you can even give the kids ice cream for breakfast! the base is the frozen bananas, and whatever else you add to it makes the flavor. I personally liked the chocolate soy milk with frozen strawberries (mixed with the bananas of course)

Sarah8793 Enthusiast
Sarah8793
Posted
  • Author
there is a very simple way to make homemade (ice cream) for your family that is not only gluten-free but cf and vegan as well...

peel and cut up and freeze bananas (freeze them on a cookie sheet w/ wax paper then transfer to a freezer bag)

add frozen bananas to your blender, add in whatever liquid you want, rice milk, soy milk, water, add frozen fruits for a fruity flavor, add vanilla extract for a vanilla flavor, add chocolate flavored soy milk or rice milk (making sure it is gluten-free) for a chocolate flavor, add your fave nuts if you like, in fact you can add anything you want... but it's really healthy, really easy and really yummy, and this way you can even give the kids ice cream for breakfast! the base is the frozen bananas, and whatever else you add to it makes the flavor. I personally liked the chocolate soy milk with frozen strawberries (mixed with the bananas of course)

Yummm! :) I am going to make this today for my kids! We are going to the water park today, and I usually stop and get them ice cream on the way home, but instead I'll stop at the store and get the ingredients to make this. Thank you!!

Guest nini
Guest nini
Posted

you'll want to freeze the bananas for a few hours first... what I like to do is prepare the bananas ahead of time and keep them in a freezer bag and that way I can pull some out whenever I am in the mood.

Oh and more liquid equals a smoothie, less liquid equals ice cream! Oh and you can add just a tiny amt. of salt to bring out the sweet flavors (yes salt!)

another good flavor is the frozen banana base, maple syrup and chopped walnuts! add in vanilla extract if you like and use the chocolate soy milk for a yummier treat! It is soooooooo yummy....

you could also use frozen peaches, frozen blueberries, mixed frozen fruit blends...

I can't waid to try pistachio's with it...

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