Frustrated On Issue Of Cc And Time Lags

[Sarah8793]

Both of my kids are gluten-free/CF. I have managed to eliminate both of these from their diet (no small feat!). They are so limited in what they can eat because of being casein free also, that I let them have things like Lay's chips etc. that are a little risky as far as cross-contamination. They don't eat them every day however. The problem is that ds sometimes gets symptoms of being glutened (moodiness, anxiety, irritability). I have been keeping a journal of what they eat every day, but I don't know what food to attribute their symptoms to. For example, when ds begins to have symptoms how do I know if it was what he had for lunch that day or dinner from the night before? I can't see switching to a diet of meat, fruits, vegetables and rice only, because I wouldn't be able to pack them much for lunches. Any ideas? Sometimes I wonder if I will ever figure it out.

[hez]

It used to be that I would know I had been glutened within an hour. Which made figuring out what glutened me very easy. Now it is different. I think my lag time can be a couple of days. I find it very frustrating. It is almost imposible for me to figure out if it was something I ate or if it was cc. I wish I could be of more help. I am frustrated too!

Hez

[celiacgirls]

I would try eliminating all of the potentially cc'd foods for a while and then try them one at a time, if you can't do without them. My 2 kids are gluten-free/cf and one is soy free so I know it is hard to find things for them to eat.

Instead of Lay's potato chips, I buy Cape Cod russet brown chips. The other Cape Cod chips have a risk of cc. If we are out and hungry and need to eat, I might let them have Lay's but I try to avoid them.

Betty Crocker fruit rollups and fruit snacks are ok. I also give them popcorn, corn nuts, Dora the Explorer cereal, marshmallows, or candy. I would much rather give them candy than something with traces of gluten or casein.

[gfp]

Sarah.... I wish I could give you a simple answer.....

I just got glutened 2 nights ago.... first night I was weird but mainly only depressed, confused and hot/cold sweats...

Then last night .... I felt like just crying on the toilet floor between stuff coming out of one end then the other... and I rarely vomit from gluten... felt like crap all day until about 4-5 PM... now I feel quite a bit better but I expect either tomorrow or the day after I'll relapse then maybe be Ok for a week and have a bout or two of D....

This is really one of the most frustrating things for me.....

I have found by basically going 100% gluten-free risk free that I can get symptoms up to 4-5 weeks later.... they just get less severe and further apart...

Whereby its sorta interesting for me as an adult to limit myself to basic fruit, vegetables and washed meat for 6 weeks at a time that's me imposing that on me....so Im not sure it would be really helpful for the kids...

In general you can just cut out what you suspect... and stack the odss in their favor... so I'd say don't risk fast food the chance of CC is just to high and avoid anytihng risky as best you can (like Lay's) but in the end you can't realistically let them have a normal childhood and make it risk free.....

Damn..... I spoke to soon.... just got gripes in my tum.... so it looks like another tough night.

[Amooliakin]

I could not agree more! This is EXACTLY the problem I am having with my 8-year-old. We try to be 100% gluten-free, but there seem to be so many times when we make a tiny mistake... or don't know if we have. Then she may have a really bad day or two (cranky, irritable, tired, mopey, burping) and I have to guess what the culprit was.

To make it worse, even though I have explained all this to her school, I fear the teachers, principal, and even the school nurse, don't take it as seriously as they should. Or rather, they think that since it has been 6 months gluten-free there should be no more problems, so they blame her mood on.... her.

I wish it were simpler, but we don't live in a bubble.

Don't you wish there was a handy little tester that you could put each food into and see if it contained gluten? I saw something of this sort on the Internet for a huge price, but when I asked about it, they said they had not even really developed it yet for consumers.

My thoughts are with you and if you find a solution, please let me know. Hiden sources of gluten and CC is the worst!

[2Boys4Me]

Another question is: How do we know they are cranky/irritable from gluten, and not just because they had a bad day at school?

My son's only symptom other than occasional irritability was anemia, which obviously we can't keep track of, and we are going on the assumption that if he's crabby it's because he had a bad day at school or his brother is getting on his nerves.

[Amooliakin]

Another question is: How do we know they are cranky/irritable from gluten, and not just because they had a bad day at school?

I am talking about a whole other level of cranky.... In my daughter's case she can't tolerate anything from anyone, she cries at the drop of a hat, she has no sense of humor, and she is tired to the bone. There are certainly times when we can't tell which is gluten and which is normal life of a kid.... but there are other times when it is all too clear.

[Sarah8793]

I am talking about a whole other level of cranky.... In my daughter's case she can't tolerate anything from anyone, she cries at the drop of a hat, she has no sense of humor, and she is tired to the bone. There are certainly times when we can't tell which is gluten and which is normal life of a kid.... but there are other times when it is all too clear.

Yes, this is my experience too. My son is 8 also and reacts just like your daughter. Even he can see that there isn't any connection to a life event. For example, the other day he got up for school, took a shower and then sat on the bathroom floor crying and didn't know why. He also gets extra tired. He is offended if someone just looks at him.

[Amooliakin]

My heart goes out to these kids like your son and my daughter. It helps that they know they have been "glutened" but to the outside world they can just look like difficult kids. And I know my daughter was very good natured until celiac reared its ugly head.

.... not to say I don't feel bad for all the kids whose symptoms are more physical...

[Juliet]

My son becomes extremely hyperactive and bounces from overly friendly and wanting every person's who walks by attention to really mean and violent. And he goes on a diarrhea/constipation cycle that lasts for three days. His reaction to CC is more extreme than it was a year ago when he was gluten free for only 4 1/2 months. He's much more sensitive, and more than half the time we can't pinpoint where he gets it from. We're 100% gluten free in the house, but he goes out and plays with other kids at the park and the mall and he's only 3 1/2, so I'm assuming it's from these situations. He never tries to eat other kids' food, but he's not the best at washing his hands before he eats and he's a thumbsucker. And for some reason, when it seemed like CC was more or less under control (we had gone 6 months without an episode) the last 2 months have been very problematic - we've had an issue with it almost every week. It seems to go in cycles.

[Sarah8793]

Just wanted to say THANKS for your responses. I guess there aren't any easy answers. It is nice to know others share my frustration. At least I'm not alone. Thank you Celiac Girls for the snack suggestions and gfp you are right about it boiling down to not being able to protect kids all the time. Sometimes I forget that I can't.

[Guest GrimTribe]

I don't really have much in the way of advice. I'm a Newbie still slogging through all the info I've found to prepare us for our pending appointment with a Ped GI.

What I notice about Steele is he is hyper sensitive about everything. He sniffles & whines over teeny things. Of course, at 5 its all a big deal.

After only a few days I already have a Things I Hate About Celiac list that's far longer than 10 items.

We couldn't go eat at Burger King like I promised him a week ago because they have absolutely nothing that's gluten-free. I knew it, but I asked anyway. Steele was inconsolable for at least an hour. He loves hamburgers, hot dogs, and all that stuff like any kid.

I cannot stand telling him he can't have it.

My eldest is baking a lemon cake today. Of course, Steele can't have any.

At 5, its totally unfair & logic doesn't matter. He wants cake! And I can't give it to him.

There are times when his mood swings way way over to super-uber-happy-go-lucky. Others he's simply a sniffling mess.

At least I found a whole food store within driving distance (translation, less than 50 miles) that has goodies of the non-gluten kind. Of course, I don't know a thing about their prices yet.

My wallet hurts!

~Raven

[gfp]

Just wanted to say THANKS for your responses. I guess there aren't any easy answers. It is nice to know others share my frustration. At least I'm not alone. Thank you Celiac Girls for the snack suggestions and gfp you are right about it boiling down to not being able to protect kids all the time. Sometimes I forget that I can't.

The fact your here asking questions and thinking about the issues is one heck of a good start!

But I think you can drive yourself mad ... its easy enough for me to do that to myself.....the whole delay thing and repercussions ... I'd swear you start then looking in the most improbably places... I went through different toothpastes (must be that) and who knows what and still kept getting little hickups...

You just can't wrap em up in cotton wool and keep em home safe like every mom wants.... if they are going to school from time to time they will probably touch someone with flour on them or something... and you'll just cope with it.... but just them like getting a cold or measles or anything else; you can't prevent everything....

As they get older then you can increasingly help them to help themselves... do everything you can of course but don't start blaming yourself or feeling like a bad mom when the odd mistakes happen.

[gfp]

My eldest is baking a lemon cake today. Of course, Steele can't have any.

If he's in the same kitchen he is having some... its pretty much impossible to bake from scratch and him not breath it in....if he's in the same room....

BUT.....

At 5, its totally unfair & logic doesn't matter. He wants cake! And I can't give it to him.

Yes you can there are 101 great gluten free recipee's out there.... including lemon cake.....

My wallet hurts!

I can get that.... specific gluten free stuff can be pretty expensive and yep kids are kids and of course it makes no sense to him now....

However .... just going off me as a kid.... I was really a picky eater (never really liked chocolate ever) but I'd always eat stuff I baked together with my mom....

If you make gluten-free goodies from scratch then they do take some time BUT they are nowhere near as expensive as buying them pre-made.... Yes it will take some time but maybe you could turn that into some quality time between you where you make him special treats he can lick the bowl ...

[Juliet]

"My eldest is baking a lemon cake today. Of course, Steele can't have any."

As was mentioned just before me, there are lots of great recipes, and even some great and easy mixes (I love Pamela's Products Chocolate Cake mix using the sour cream recipe) that you can use. And how I normally handle it is I make cupcakes, and whatever isn't eaten the first day I freeze. Then the next time there's a party or someone is having another type of baked treat, I just thaw one out (or microwave - depending on how quickly it's needed), frost it and hand it over. I even got some great individual cupcake holders for transportation. It's hard to eat 16 cupcakes in one sitting, but the frozen ones last for 2 months easily and that way the money isn't wasted. Same thing with gluten-free bread. And, although they're pricey, you can often find frozen gluten free hot dog and hamburger buns at Whole Foods. I also make gluten free biscuits and make "mini Krabby Patties" for our son. And under the baking section here, someone posted a microwaveable hamburger bun recipe that's done in like two minutes you could use. It CAN be done, it just takes adjusting.

[kbtoyssni]

Another question is: How do we know they are cranky/irritable from gluten, and not just because they had a bad day at school?

Gosh, I can't even tell if my crabbiness if gluten or stress or just a bad day either, and I imagine it's much harder to figure out someone else's crabbiness. Even my stomach acts up sometimes and I have no idea if it's gluten or stress.

It's relativly easy to bake cakes. There is a large start-up cost (xantham gum which is around $15 for a tiny package is absolutely essential, but you hardly use any so it lasts a long time, and buying several kinds of flours at one time adds up, too), but once you get past that it's not much more expensive than regular cakes. The only difference in ingredients is the flour products and it's maybe $1-2 more per cake for the gluten-free ingredients once you average it out.

[JennyC]

I don't really have much in the way of advice. I'm a Newbie still slogging through all the info I've found to prepare us for our pending appointment with a Ped GI.

What I notice about Steele is he is hyper sensitive about everything. He sniffles & whines over teeny things. Of course, at 5 its all a big deal.

After only a few days I already have a Things I Hate About Celiac list that's far longer than 10 items.

We couldn't go eat at Burger King like I promised him a week ago because they have absolutely nothing that's gluten-free. I knew it, but I asked anyway. Steele was inconsolable for at least an hour. He loves hamburgers, hot dogs, and all that stuff like any kid.

I cannot stand telling him he can't have it.

My eldest is baking a lemon cake today. Of course, Steele can't have any.

At 5, its totally unfair & logic doesn't matter. He wants cake! And I can't give it to him.

There are times when his mood swings way way over to super-uber-happy-go-lucky. Others he's simply a sniffling mess.

At least I found a whole food store within driving distance (translation, less than 50 miles) that has goodies of the non-gluten kind. Of course, I don't know a thing about their prices yet.

My wallet hurts!

~Raven

You should try the Kinnikinnick website. They have gluten-free hotgdog/hamburger buns. He can still have those things! They have LOTS of GREAT products. Glutano is also a great brand with lots of options.

[Guest JennyK]

Both of my kids are gluten-free/CF. I have managed to eliminate both of these from their diet (no small feat!). They are so limited in what they can eat because of being casein free also, that I let them have things like Lay's chips etc. that are a little risky as far as cross-contamination. They don't eat them every day however. The problem is that ds sometimes gets symptoms of being glutened (moodiness, anxiety, irritability). I have been keeping a journal of what they eat every day, but I don't know what food to attribute their symptoms to. For example, when ds begins to have symptoms how do I know if it was what he had for lunch that day or dinner from the night before? I can't see switching to a diet of meat, fruits, vegetables and rice only, because I wouldn't be able to pack them much for lunches. Any ideas? Sometimes I wonder if I will ever figure it out.

What is CC? The only thing I could think of is carbon copy, but I'm thinking that's not it.

[Juliet]

"CC" at least on this board means "cross contamination" - the biggest problem, particularly with kids since they don't know how to clean their hands too well, that people who must go gluten free (or probably any food allergy/intolerance) have to deal with.

[Guest JennyK]

"CC" at least on this board means "cross contamination" - the biggest problem, particularly with kids since they don't know how to clean their hands too well, that people who must go gluten free (or probably any food allergy/intolerance) have to deal with.

Of course! I should have figured that one out! Thanks for letting me know.

[mandasmom]

"My eldest is baking a lemon cake today. Of course, Steele can't have any."

As was mentioned just before me, there are lots of great recipes, and even some great and easy mixes (I love Pamela's Products Chocolate Cake mix using the sour cream recipe) that you can use. And how I normally handle it is I make cupcakes, and whatever isn't eaten the first day I freeze. Then the next time there's a party or someone is having another type of baked treat, I just thaw one out (or microwave - depending on how quickly it's needed), frost it and hand it over. I even got some great individual cupcake holders for transportation. It's hard to eat 16 cupcakes in one sitting, but the frozen ones last for 2 months easily and that way the money isn't wasted. Same thing with gluten-free bread. And, although they're pricey, you can often find frozen gluten free hot dog and hamburger buns at Whole Foods. I also make gluten free biscuits and make "mini Krabby Patties" for our son. And under the baking section here, someone posted a microwaveable hamburger bun recipe that's done in like two minutes you could use. It CAN be done, it just takes adjusting.

I think its a mistake to assume that every bad mood or bad behavior is related to gluten--some probably are but just as many bad moods and bad days are due to something else!! Id beware of allowing Celiac Disease to define everything in your childs life---they have a lifetime of coping to due in a gluten filled world and they need to develop the skills necessary to find their way. Bad behavior is bad behavior no matter what the cause!!!

[gfp]

I think its a mistake to assume that every bad mood or bad behavior is related to gluten--some probably are but just as many bad moods and bad days are due to something else!! Id beware of allowing Celiac Disease to define everything in your childs life---they have a lifetime of coping to due in a gluten filled world and they need to develop the skills necessary to find their way. Bad behavior is bad behavior no matter what the cause!!!

Sorry, your relatively new and I don't know you so well.... but I did want to say something here....

Are you actually celiac yourself? I ask because the mood swings with gluten are really really hard to control... even for adults...

The thing is I know when I get glutened I actually end up saying/doing things I know I shouldn't.... but its almost like your body just does them anyway and short circuits the part of the brain saying "ooh don't say that" .... its literally like I know I shouldn't and I try not to but my body and some other part of my brain just refuses to cooperate.

I know this is REALLY REALLY hard to appreciate if it doesn't happen to you.... so please don't take offense but in some ways its like dealing with someone with a split personality.... and "punishing" one personality for what the other one did is IMHO not productive when the person can't control which one...

[Juliet]

Mandasmom - I'm not really certain what my quote had to do with emotions, except for the part where I said I made "mini Krabby Pattties." I was actually referencing Spongebob Squarepants - he makes "Krabby Patties" at the "Krustry Krab" and my son thinks it's fun to eat the same things Spongebob does.

And you're right about the moods - sometimes it's all about a bad day. But my son when he gets glutened, his moods are DRAMATICALLY different than the rest of the time; he vascillates between happy, overly outgoing, hyper, and really mean. And he absolutely cannot hold still - he'll literally shake when you have him stand in one place no matter how short a time it is. And whenever it does change like this and I begin to seriously wonder what's wrong (or as my husband says, begin to question my own ability as a parent ) he then also will get diarrhea and he sweats profusely when he sleeps. So, in some ways I'm lucky - I have physical symptoms which accompanies the emotional that last for a few days. So I can almost always tell when and if it's a gluten problem. I think it would be much more difficult if that weren't the case.