What To Do When Glutened....

[mommy2krj]

My 6 year old is the diagnosed Celiac here. I thought we've been doing pretty good but now I'm not so sure.

 

His general complaints after eating gluten are usually a stomach ache and a headache. Generally, and those are the ones *he* notices. I've noticed he gets very weepy and then very angry.

 

However, he's been having some other random pains lately. Tonight, for example, he was at grandma's house. I will give her and my father in law credit, they are trying very hard to remember and check with me for most things. I don't think they get the cc part of it though. When I went to pick him up, he was just laying around. He fell asleep on the way home. When we got home he started crying that his legs hurt.

 

These are those random things that make me uncertain what to do. I know how I feel now that we're gluten free and pretty sure I've just recently diagnosed myself the hard way with NCGS. I have pains that appear only when I eat gluten, though, until today I'd never really noticed it upsetting my stomach.

 

So, what can I do for joint pain? Or leg pain in general? Especially when it seems like gluten is the cause? Just wait it out? Does giving ibuprofen or tylenol even really do anything for that kind of pain when it is caused by that? How am I certain that gluten *is* the cause??

 

I'm thinking that I need to cut his dairy intake too for now but I'm not positive I need to do that because every time it seems like that is an issue, if I go over his days I can see where there was the possibility of him getting glutened! Ah! How do you know?!?!?! This is so frustrating. He's 6 years old and he is struggling with this a bit. Though, he is doing better dealing with it than I would have thought.

 

If I take milk away from him....it is going to be that much harder for him. I know it will be better for him in the long run but he's been getting so sad. How do you explain the need to take yet another food group away? I think it's hard for him to understand because (and I am ever so grateful, I really am) unlike a lot of people here he wasn't that sick. An upset stomach every day, but he wasn't violently ill or so deteriorated like I've read about with some people.

 

Guess that was a vent and a question all in one. Sorry it got so long. I'm frustrated and not sure what to do.

[shadowicewolf]

When i was younger, I used to get really bad growing pains in my legs.

 

With celiac, we have a habit of blaming it before thinking of other causes.

 

First off, take a deep breath and try to think it over rationally. You said his symptoms were headaches, stomach issues, crying, and anger. Of the four, in this case, only one has, so far, shown up. I am leaning towards the idea that it has more to do with him growing than it does gluten.

 

As for the milk, does he have any issues after he has some? If not, I would not worry about it. Not all people with celiac have problems with diary.

[mommy2krj]

I'm still trying to pin things down. He's still complaining a lot about his stomach and his head and other aches and pains. He's had joint pains that seemed to clear up when we first started going gluten free but they come and go now.

I'm not sure on the growing pains part. I don't remember my older two having anything like that and he is the smallest of the three, by far! I would have expected my oldest son to have had them given his size and how fast he grew but I don't think he did, at least not when he was little. Now, though, I'm pretty sure his muscles are trying to play catch up to his size and that is causing some issues for him. I know growing pains probably don't have anything to do with size......but.....ahhh!

 

As far as milk....I'm not sure. I'm lactose intolerant, to a point. Ice cream (and I've found some are far worse than others) kills me but even then it can take several hours. Though, not always. Sometimes it only takes 20 minutes. I keep thinking it's some kind of weird coincidence but I go long stretches, sometimes more than 9-10 months before I'm willing to try and it's always the same reaction. But...I can drink milk and eat cheese. Though, my milk intake is limited because I can't stand the taste of regular white milk and if I buy chocolate it's gone in a couple hours (kids!). So, I'm really not sure if he's reacting to milk or not...given the fact that his stomach is still bothering him.
 

I have seen some improvement with him but he's still up and down with his stomach. His headaches seem to come out of nowhere and don't always coincide with the stomach issues. The moodiness is the first sign of trouble with him....though, sometimes it's hard to tell. And sometimes it's a general complaint that his wrists and ankles and knees hurt. Tonight was the first time he's cried about it and the first time it was just his legs in general. But right before that he was mopey and wouldn't tell me what was wrong. It was just really weird and very out of character for him. I will chalk it up to a long first week of school and being tired and probably growing (he has shot up quite a bit since we went gluten free too!) but is there anything I can do for that?

I'm probably being overly paranoid. I know my husband would tell me I am. But, me being overly paranoid is what got us here. And this was out of character for him. I'll keep an eye on it and see if it happens again. I think I may start a journal and see if there is a pattern or some kind of common link. My mil did cook him supper tonight....so it could be a cc issue too. *sigh* So many what ifs, it could bes and maybe it's....it's hard to keep track of them all sometimes! Trying to pluck the most likely one out of them is getting harder!

[mommy2krj]

Oh, and thank you shadowicewolf.....you're always there with a comforting word and able to get me thinking rationally again. I really appreciate it! I try not to panic over every little thing but this is kind of leaving me a little lost.

[AnnRD]

My 6 year old is the diagnosed Celiac here. I thought we've been doing pretty good but now I'm not so sure.

 

His general complaints after eating gluten are usually a stomach ache and a headache. Generally, and those are the ones *he* notices. I've noticed he gets very weepy and then very angry.

 

However, he's been having some other random pains lately. Tonight, for example, he was at grandma's house. I will give her and my father in law credit, they are trying very hard to remember and check with me for most things. I don't think they get the cc part of it though. When I went to pick him up, he was just laying around. He fell asleep on the way home. When we got home he started crying that his legs hurt.

 

These are those random things that make me uncertain what to do. I know how I feel now that we're gluten free and pretty sure I've just recently diagnosed myself the hard way with NCGS. I have pains that appear only when I eat gluten, though, until today I'd never really noticed it upsetting my stomach.

 

So, what can I do for joint pain? Or leg pain in general? Especially when it seems like gluten is the cause? Just wait it out? Does giving ibuprofen or tylenol even really do anything for that kind of pain when it is caused by that? How am I certain that gluten *is* the cause??

 

I'm thinking that I need to cut his dairy intake too for now but I'm not positive I need to do that because every time it seems like that is an issue, if I go over his days I can see where there was the possibility of him getting glutened! Ah! How do you know?!?!?! This is so frustrating. He's 6 years old and he is struggling with this a bit. Though, he is doing better dealing with it than I would have thought.

 

If I take milk away from him....it is going to be that much harder for him. I know it will be better for him in the long run but he's been getting so sad. How do you explain the need to take yet another food group away? I think it's hard for him to understand because (and I am ever so grateful, I really am) unlike a lot of people here he wasn't that sick. An upset stomach every day, but he wasn't violently ill or so deteriorated like I've read about with some people.

 

Guess that was a vent and a question all in one. Sorry it got so long. I'm frustrated and not sure what to do.

Don't cut out the dairy--especially in a growing child.  Milk has the highest quality protein we can eat and also the most absorbable form of calcium. Having celiac disease damages the small intestinal cells--which are the cells that make the enzyme "lactase" which is needed to digest the lactose in milk, yogurt and cottage cheese.  If you think he is reacting to dairy, put him on "lactose free (LF)" milk, LF yogurt and LF cottage cheese or use "Lactaid Fast Act" supplemental lactase enzyme pills. 

Most celiacs can be temporarily lactose intolerant while they are symptomatic and undiagnosed. Once diagnosed and they stop eating gluten and the small intestinal villi heal and reestablish, sometimes the person's own lactase enzyme production returns and the person can consume "normal" lactose-containing milk/dairy again. Sometimes it doesn't return and the person is permanently lactose intolerant.  In children, it is more likely to return to normal. So try lactose-free dairy products for a while and see if he is better.

Right now there are no ways to "un-gluten" someone--but I know that that is an area of research and scientists are trying to come up with a compound/drug that would bind the gluten proteins and render them un-dangerous--but nothing is out there yet.

[shadowicewolf]

No problem

 

A food journal would be a good idea. If anything, it would help narrow things down a bit. 

 

 

I'm not sure on the growing pains part. I don't remember my older two having anything like that and he is the smallest of the three, by far! I would have expected my oldest son to have had them given his size and how fast he grew but I don't think he did, at least not when he was little. Now, though, I'm pretty sure his muscles are trying to play catch up to his size and that is causing some issues for him. I know growing pains probably don't have anything to do with size......but.....ahhh!

 

It certainly could be.

 

 

As far as milk....I'm not sure. I'm lactose intolerant, to a point. Ice cream (and I've found some are far worse than others) kills me but even then it can take several hours. Though, not always. Sometimes it only takes 20 minutes. I keep thinking it's some kind of weird coincidence but I go long stretches, sometimes more than 9-10 months before I'm willing to try and it's always the same reaction. But...I can drink milk and eat cheese. Though, my milk intake is limited because I can't stand the taste of regular white milk and if I buy chocolate it's gone in a couple hours (kids!). So, I'm really not sure if he's reacting to milk or not...given the fact that his stomach is still bothering him.

If you can do both milk and cheese, it could be something in the ice cream that is causing your issues (sweeteners and the like).

 

How long has it been since he was diagnosed? Sometimes, it can take time on the diet to be able to see some improvement.

 

If it has been a while, then i would consider it.

 

 

I have seen some improvement with him but he's still up and down with his stomach. His headaches seem to come out of nowhere and don't always coincide with the stomach issues. The moodiness is the first sign of trouble with him....though, sometimes it's hard to tell. And sometimes it's a general complaint that his wrists and ankles and knees hurt. Tonight was the first time he's cried about it and the first time it was just his legs in general. But right before that he was mopey and wouldn't tell me what was wrong. It was just really weird and very out of character for him. I will chalk it up to a long first week of school and being tired and probably growing (he has shot up quite a bit since we went gluten free too!) but is there anything I can do for that?

I think the first week back can be hard for anyone.

 

Have his vitamin levels been checked recently? Sometimes if a person is low in one vitamin level, it can cause all sorts of issues.

 

 

My mil did cook him supper tonight....so it could be a cc issue too.

I would suspect it too.

 

I would also suspect getting CC'd at school too.

 

A food journal would be a good idea. If anything, it would help narrow things down a bit.

 

I can't tell you how many times i've sat down and tried to figure out what made me sick. But in the long run, compared to being on a gluten-y diet before diagnosis, CC, while making us sick for a while, is just a little road bump in comparison.

 

Hope he gets feeling better.

[mommy2krj]

He was diagnosed in July....so definitely still healing.

I can do milk in small amounts....like a cup at a time. Chocolate milk is my most recent reaction and it was a very strong reaction so I haven't tried it again. I'd had a cup of regular milk and then had a small bottle of chocolate milk and probably some cheese with supper too. I did figure out that it has something to do with the powdered form of milk. I have the same strong reactions to packaged hot chocolate. If I make my own hot chocolate, no reactions. Though....it could definitely be a reaction to a sweetener too. Hmmm....

He is vitamin D deficient, though it isn't severe like some I've seen. We are working on that.

 

I think we're going to get some utensils and a strainer just for at grandma's. She tries so hard, I hate to see all that effort ruined because she used a wooden spoon.

He doesn't eat anything at school that didn't get packed here. They do have a fruit and veggie snack at school that everyone shares. That should be alright, right? They're usually individual servings....so no sticky gluteny hands touching his stuff. But there are still the kids in the neighborhood that bring their snacks outside. :/

He seems to feel better today. He's gotten really good at playing when he's not feeling the best though. I am going to work on a food journal with him and see what that shows us. He has been eating a lot the last couple of days, now that I think about it.

 

Thanks again for being the voice of reason. Kids can be so weird with their issues sometimes.....even the "normal" everyday issues.