Cc At School, Other Siblings Protesting gluten-free Foods, More

[teresasupermom]

Gosh, we are just having lots of problems. My dd was diagnosed with celiac in March of last year after having constant complaints of tummy aches and not growing. She had blood work and biopsy to confirm. We have a strong family history of autoimmune disorders - 2 kids with type 1 diabetes, 1 with celiac, 1 with hashimotos thyroiditis. Anyhow, we tried just having Megan (my celiac dd) gluten free. That didn't work, anitibodies still high. So then we switched everything but sliced bread, cereal, and pizza over to gluten-free. Most of our meals the whole family was gluten-free, but that is still not working. She's still complaining of being sick all the time and waiting to hear back on her latest antibody check, but I suspect it's still high. So this past week I finally decided we were going to have no choice, but to switch the whole family over. I am meeting much resistance from my other kids. Plus gluten-free is expensive. I have 7 kids so it's difficult switching everyone gluten-free, but I think it must be done.

Now, what I need help with is tips on getting the rest of my family to accept this without being resentful towards their sister. My 4 year old protests every kind of gluten-free bread even the ones that I thought tasted pretty good. My 4 year old and 11 year old (non celiacs) are quite picky eaters and both have so far refused any gluten free breads and protest gluten free cereals as well. I know I can cook things that are naturally gluten free and those go over fine. They will all eat gluten free pasta as we made the switch to that a while ago and they never really complained too much about that. With 7 kids I don't have time to cook breakfast every morning and the idea of never having bread in the house again is too hard for me to deal with right now. I guess my questions are did you have to switch your whole family over? If so how did you get your other kids to come around?

Also I am concerned about CC at school. I figure if she's getting it at home then she is probably getting it at school. What else can I do to reduce CC at school? I am just tired of her being sick.

[T.H.]

So sorry it's been so hard for you and your family! It seems like such a simple thing, to change food, but it's so basic to so much of our lives, it really can hit hard, yes?

Okay, here's a ton of little things that popped into my head on reading your post - very sorry if they are redundant!

1. The two children with diabetes - have they been tested for celiac disease? I believe there is a movement out there right now to have all type I diabetes folks get tested for this, because there is a higher risk of silent celiac disease in this population.

2. On that note - has anyone else in the family been tested for the disease? 1 in 22 people who have a close celiac relative also have the disease. If I remember right, other auto-immune disease that run in the family ups the odds of celiac disease.

3. Also, there is a good chance that all of your children will eventually develop this disease some time in their lives. Celiac experts recommend that you have your children (and yourselves) periodically screened for the disease, for the rest of their lives.

so all that said...going gluten free is something most of them may have to get used to eventually, anyway.

For your daughter's ongoing tummy aches (I'm assuming since she's been retested that it's been a while since she was diagnosed, yes?):

1) Other food issues are not uncommon for diagnosed celiacs, especially newly diagnosed ones.

- The part of the villi that digests lactose is what is damaged in celiacs, so most of us are lactose intolerant until we heal. You might want to ditch the dairy for a few months and see if that helps.

- Some 10% (maybe 15%?) of celiacs react to oats (even gluten-free ones) just like wheat, rye, and barley. If your little one is eating gluten-free oats, you might want to eliminate them for a little while and see if it helps.

- And we have seem to have a higher rate of food allergies (which sometimes aren't enough to cause hives, but cause stomach upset and/or pain). I believe soy, nightshades, and corn are some of the more common issues.

- A lot of us end up dropping processed foods for a little while, going back to basic veggies, fruits, meats, etc..., and keeping a food journal to see if we can find a connection between what we're eating and the tummy pain.

2) Celiacs can also be prone to other problems that involve the gut. H. Pylori infection is one of them - a gut infection that we are more prone to when we have eaten gluten. Blood test can test for it. Fructose malabsorption is another issue we can have - you can find dietary guidelines for this on google fairly easily (this involves fruits, grains, all sorts of things). Also, some celiacs are helped by probiotics, but I don't know how that would translate for a little one.

3) Another thing to know is that 'gluten free' does not actually MEAN gluten free. It's a legal term, and it means 'less than X amount of gluten.' That amount is typically 20ppm in the USA, although the law to regulate this is still not finalized. Some celiacs react to a little less than this, so some gluten free products can still make you ill. More often, if your little one eats a lot of gluten-free products like crackers, pasta, etc... then she can get a bit too much gluten on a daily basis. Kind of like a dieter who eats to much low calorie food can still get too many calories, if she eats enough. Another reason why some of us drop the processed stuff at first, ya know?

4) Have you been able to look at non-food items that might gluten your little one? Any pets she might feed, if their food has gluten and the dust poofs in the air and gets in her mouth, that can do it. Same with cat litter. Art supplies at schoool can often contain gluten, like I believe some tempera paint powder can (that's old info, though, so you might want to check it). If you live or she goes to school near construction, some sawdust and dry wall dust can contain gluten. If your chapstick or makeup is not gluten free and she kisses your cheek, etc... that can get her. If her lotion has gluten and she chews her nails, that'll do it. If her shampoo has gluten and it gets into her mouth when she rinses, or her toothpaste, flavored floss, mouthwash - there's a lot of places that one can get zapped.

I wish I could help more with the family resentment. We went gluten free, even though only one child and myself tested positive, but my son had symptoms that we hadn't even know were gluten related and they resolved when he went gluten free, so if he had resentment, it's aimed at me for making him stay on the diet too.

I've ended up trying to take the blame, mostly - I went down the route of: you should know how to cook like this. Even if you don't develop this yourself, it's likely your children may have this issue, so you'll need to know.

I also made a big deal of us supporting each other by eating this way and keeping our family safe...heh, yeah, THAT went over well with the kids. Not. One thing that helped, a little, was making food production a bit more of, well, of a production. I set up dishes that one of the kids got to make, and made semi-competitions. They got to try and make it look the best, taste the best, maybe I got some weird ingredient that none of us knew how to cook so they had to figure that out. Take pictures of it, talk about how to make it. We made a blog so the kids get to help make a post with the photos etc...

We homeschool ourselves, so I'm afraid I won't be a lot of good in the avoiding cc in school. But I'm sure many others here will have some good ideas.

[teresasupermom]

1. The two children with diabetes - have they been tested for celiac disease? I believe there is a movement out there right now to have all type I diabetes folks get tested for this, because there is a higher risk of silent celiac disease in this population.

2. On that note - has anyone else in the family been tested for the disease? 1 in 22 people who have a close celiac relative also have the disease. If I remember right, other auto-immune disease that run in the family ups the odds of celiac disease.

3. Also, there is a good chance that all of your children will eventually develop this disease some time in their lives. Celiac experts recommend that you have your children (and yourselves) periodically screened for the disease, for the rest of their lives.

so all that said...going gluten free is something most of them may have to get used to eventually, anyway.

All of my kids have been tested except for the baby and my 11 year old. My two diabetics have been tested every year with their other blood work. My 11 year old is very anti needles so we kind of decided if he wasn't having symptoms we'd hold off until he needed blood work for anything. If he has symptoms or needs blood work at any point in time we'll throw the celiac test in with it. The baby is only 5 months so it would be pointless to test her now. But yes, this was my thinking as well that there is a good chance that one more will develop it or one of my kids children when they go onto having kids will wind up with it. I am hoping with some more time they will come around.

For your daughter's ongoing tummy aches (I'm assuming since she's been retested that it's been a while since she was diagnosed, yes?):

1) Other food issues are not uncommon for diagnosed celiacs, especially newly diagnosed ones.

- The part of the villi that digests lactose is what is damaged in celiacs, so most of us are lactose intolerant until we heal. You might want to ditch the dairy for a few months and see if that helps.

- Some 10% (maybe 15%?) of celiacs react to oats (even gluten-free ones) just like wheat, rye, and barley. If your little one is eating gluten-free oats, you might want to eliminate them for a little while and see if it helps.

- And we have seem to have a higher rate of food allergies (which sometimes aren't enough to cause hives, but cause stomach upset and/or pain). I believe soy, nightshades, and corn are some of the more common issues.

- A lot of us end up dropping processed foods for a little while, going back to basic veggies, fruits, meats, etc..., and keeping a food journal to see if we can find a connection between what we're eating and the tummy pain.

2) Celiacs can also be prone to other problems that involve the gut. H. Pylori infection is one of them - a gut infection that we are more prone to when we have eaten gluten. Blood test can test for it. Fructose malabsorption is another issue we can have - you can find dietary guidelines for this on google fairly easily (this involves fruits, grains, all sorts of things). Also, some celiacs are helped by probiotics, but I don't know how that would translate for a little one.

She was diagnosed last March so it's been less than a year, but long enough that her numbers should be dropping and not rising. She just went in for a recheck on lab work on Saturday so waiting for the results to come back. We will be cutting out the gluten free oats. She's only had that a few times, but for now cutting that out. I am thinking yes, she could have other food issues, but with her antibodies still being elevated not sure if I should look into other issues yet.

3) Another thing to know is that 'gluten free' does not actually MEAN gluten free. It's a legal term, and it means 'less than X amount of gluten.' That amount is typically 20ppm in the USA, although the law to regulate this is still not finalized. Some celiacs react to a little less than this, so some gluten free products can still make you ill. More often, if your little one eats a lot of gluten-free products like crackers, pasta, etc... then she can get a bit too much gluten on a daily basis. Kind of like a dieter who eats to much low calorie food can still get too many calories, if she eats enough. Another reason why some of us drop the processed stuff at first, ya know?

Makes sense.

4) Have you been able to look at non-food items that might gluten your little one? Any pets she might feed, if their food has gluten and the dust poofs in the air and gets in her mouth, that can do it. Same with cat litter. Art supplies at schoool can often contain gluten, like I believe some tempera paint powder can (that's old info, though, so you might want to check it). If you live or she goes to school near construction, some sawdust and dry wall dust can contain gluten. If your chapstick or makeup is not gluten free and she kisses your cheek, etc... that can get her. If her lotion has gluten and she chews her nails, that'll do it. If her shampoo has gluten and it gets into her mouth when she rinses, or her toothpaste, flavored floss, mouthwash - there's a lot of places that one can get zapped.

This one I could use some help with. How do you know if there is gluten in shampoos, lotions, soaps, etc? Is it on the labels? Is there some place with a list of gluten free soaps and such?

I wish I could help more with the family resentment. We went gluten free, even though only one child and myself tested positive, but my son had symptoms that we hadn't even know were gluten related and they resolved when he went gluten free, so if he had resentment, it's aimed at me for making him stay on the diet too.

I've ended up trying to take the blame, mostly - I went down the route of: you should know how to cook like this. Even if you don't develop this yourself, it's likely your children may have this issue, so you'll need to know.

I also made a big deal of us supporting each other by eating this way and keeping our family safe...heh, yeah, THAT went over well with the kids. Not. One thing that helped, a little, was making food production a bit more of, well, of a production. I set up dishes that one of the kids got to make, and made semi-competitions. They got to try and make it look the best, taste the best, maybe I got some weird ingredient that none of us knew how to cook so they had to figure that out. Take pictures of it, talk about how to make it. We made a blog so the kids get to help make a post with the photos etc...

We homeschool ourselves, so I'm afraid I won't be a lot of good in the avoiding cc in school. But I'm sure many others here will have some good ideas.

Former homeschoolers here, but not in any way prepared to homeschool again at this time. My kids go to a small Catholic school and they are very helpful with cooperating in any way they can to reduce CC, but still it's not a perfect solution.

[dilettantesteph]

This year my son is in 8th grade. He had two study halls and lunch in the school cafeteria. He also missed 17 days of school the first quarter due to mystery glutenings. He finally told me about the study halls in the cafeteria and we asked for him to be removed from the cafeteria completely. He is in a classroom for study hall and has lunch in some chairs outside the main office. That isn't the best place for lunch, but he hasn't been sick since. He is also dong much better in school. His first math test during the ill period he was the last to finish and had to stay after for an extra hour. The mid term he just had he finished very early, looked it over and was still the first to finish. Gluten does a number on your thinking ability. The jury is still out until we get his grade, maybe he missed some pages or something LOL. Regardless he is doing much better now and much prefers being healthy to eating lunch with his friends.

We also had to go to a gluten free household. Can you try fruit and yogurt for breakfast? Some other naturally gluten free thing? Those go over better in my family than the gluten free substitutes. Fresh baked bread and muffins are also a lot better than packaged. Toasted bread is better than plain. When our family members saw how much better we did when they switched they were much better about the whole thing. They just needed to understand why it was necessary. They can still get their gluten at work/school and eating out.

[Mizzo]

Hi,

if you goto forum topic "Gluten free foods that won't break the bank" lots of good cost effective idea's there.

Also, how old is dx child? Can paper mache or playdoh be in the classroom ? If so you will need to replace with gluten-free.

I moved my dd to an end table in her homeroom to reduce cc at the desks. They snack at their desks and kids wipe the desks side to side not top to bottom, like adults, so I saw the crumbs being pushed to my girls desktop and mentioned the issue to the teacher. You could also provide a placemat for lunchtime to avoid table cc this will translate to a gluten-free zone for older kids.

Udi's is the only gluten-free bread that tastes any good IMHO also their bagels make better buns than any other brand. They are not real bagels but double for most anything else. Also they are large enough that I slice each half horizontally again to make buns for sandwiches or burgers. All Udi's takes best when brought to room temperature first.

If you install a printer you can often find a $1 off coupon for Udi' and then copy it on your copy machine for multiple purchases.

good luck.

[teresasupermom]

This year my son is in 8th grade. He had two study halls and lunch in the school cafeteria. He also missed 17 days of school the first quarter due to mystery glutenings. He finally told me about the study halls in the cafeteria and we asked for him to be removed from the cafeteria completely. He is in a classroom for study hall and has lunch in some chairs outside the main office. That isn't the best place for lunch, but he hasn't been sick since. He is also dong much better in school. His first math test during the ill period he was the last to finish and had to stay after for an extra hour. The mid term he just had he finished very early, looked it over and was still the first to finish. Gluten does a number on your thinking ability. The jury is still out until we get his grade, maybe he missed some pages or something LOL. Regardless he is doing much better now and much prefers being healthy to eating lunch with his friends.

We also had to go to a gluten free household. Can you try fruit and yogurt for breakfast? Some other naturally gluten free thing? Those go over better in my family than the gluten free substitutes. Fresh baked bread and muffins are also a lot better than packaged. Toasted bread is better than plain. When our family members saw how much better we did when they switched they were much better about the whole thing. They just needed to understand why it was necessary. They can still get their gluten at work/school and eating out.

Fruit & yogurt is an excellent idea. They would all eat that.

Hi,

if you goto forum topic "Gluten free foods that won't break the bank" lots of good cost effective idea's there.

Also, how old is dx child? Can paper mache or playdoh be in the classroom ? If so you will need to replace with gluten-free.

I moved my dd to an end table in her homeroom to reduce cc at the desks. They snack at their desks and kids wipe the desks side to side not top to bottom, like adults, so I saw the crumbs being pushed to my girls desktop and mentioned the issue to the teacher. You could also provide a placemat for lunchtime to avoid table cc this will translate to a gluten-free zone for older kids.

Udi's is the only gluten-free bread that tastes any good IMHO also their bagels make better buns than any other brand. They are not real bagels but double for most anything else. Also they are large enough that I slice each half horizontally again to make buns for sandwiches or burgers. All Udi's takes best when brought to room temperature first.

If you install a printer you can often find a $1 off coupon for Udi' and then copy it on your copy machine for multiple purchases.

good luck.

Placemat is a great idea as well. They do eat at their desks for snack time and their is no playdoh in the classroom. (She is 7 and in the 2nd grade.) I will check out the Udi's bagels. So far Udi's is the only bread that is going over well.

I just got her actual numbers in IGA was 53. Nurse said highly positive and this is up again from 3 months ago so something must be done. I am going to try the placemat idea with the inlaws too. I think that might help there since no way can I get them to go gluten free. I am trying to reduce the amount of time she eats there and will have to talk to them some more as well.

The good news is we are making headway with the other kids. It was so funny last night. My 11 year old refused to try gluten-free bread for a PB&J sandwich. So we had sloppy joes for dinner and were trying out The Grainless Baker's hamburger buns. They were not a hit. However, he refused dinner and came up to me and asked if he could make a pb&j instead and said gluten-free bread for it was fine. He ate the whole sandwich no complaints. So at least I know we are making some headway there.

[SilverSlipper]

Our whole family eats gluten free. One exception is my oldest daughter (autism) has significant eating issues so she will eat differently than us on most nights. None of us could get used to bread, so we removed it completely from the house for three months. Upon re-introducing it to our celiac kid and our youngest daughter (6), they loved it. I baked it (since the smell of bread is so yummy) and they ate it fresh from the oven with butter and honey. Then we toasted it for meals. So, things became better. We gave up on cereal (other than the occasional box of lucky charms) although I keep some cereal at my desk for a snack item. Our breakfast is typically pancakes, bacon, eggs, yogurt, fruit, grits (some combination) or chebe's cheese biscuits. I pre-cook things and we just microwave during the week. We've tried many different recipes to find ones that our whole family enjoys and that seems to be the trick. Everyone has a say in how things taste. Our littlest doesn't mind the gluten free food and if she happens to bring home something from school (a cookie or cracker from a party) she is very quick to warn our celiac girl that the item has gluten. Kind of cute actually.

We also do the nestle toll house cookie recipe with different flours. The cookies are yummy and I freeze half of the dough (already balled up) for quick snacks.

In place of bread, we frequently use lettuce wraps (romaine) for sandwiches. Probably not the yummiest for pb&j, but lunchmeat, cheese, veggies are very good.

[curlyq]

A few ideas for breakfast that I had for you are:

-cooked rice with milk and sugar

-pre-cook hard boiled eggs and keep them in the fridge, serve with fruit, yogurt, milk, etc...

-I make a lot of things ahead of time (waffles, pancakes, breakfast casserole, etc. and keep them in the fridge or freezer. They re-heat quickly in the microwave or toaster)