Behaviour Suggestions

[Rondar2001]

Just wondering if anyone has any good suggestions on how to deal with a child that has been glutened.

My 9 year old daughter doesn't have an obvious reaction right after she has been glutened. She will complain of a tummy ache for a couple of days and then the mood swings hit. We can deal with the physical complaints, but the emotional ones are driving me nuts.

She flies into a tantrum at the slightest provacation and it can take over an hour to calm her down. There is no reasoning with her at all. It is like all logic has left her brain.

I know this is a reaction she has to gluten so I try not to punish her too much, but how do I make sure that she understands it isn't ok to be so disrespectful? And how do we manage these episodes with out losing our own sanity.

Any and all suggestions are greatly appreciated.

Thanks!

[seezee]

Just wondering if anyone has any good suggestions on how to deal with a child that has been glutened.

My 9 year old daughter doesn't have an obvious reaction right after she has been glutened. She will complain of a tummy ache for a couple of days and then the mood swings hit. We can deal with the physical complaints, but the emotional ones are driving me nuts.

She flies into a tantrum at the slightest provacation and it can take over an hour to calm her down. There is no reasoning with her at all. It is like all logic has left her brain.

I know this is a reaction she has to gluten so I try not to punish her too much, but how do I make sure that she understands it isn't ok to be so disrespectful? And how do we manage these episodes with out losing our own sanity.

Any and all suggestions are greatly appreciated.

Thanks!

You may want to talk to your GI about it. Our hospital has social workers to help with this aspect. Maybe that will help?

[chiroptera]

Well, I certainly am NOT trying to disagree with the pp who suggested getting a social worker, but please be careful with that because one, they made "invade your territory and read too much into this" and two, betcha they will have no experience with gluten moods.

Our five year old does the same thing. We know we are in trouble and storms a brewing when his outer ears turn red and he boom, get the red rash ring around his mouth. Then, the tantrums begin, bad. Since he only five, he is small enough for myself or my husband to hold tightly (not, "that" tight but enough to restrain him comfortably) in a big hug to help him calm down. I try to deviate his attention with pretty much anything, even if it means packing the whole family outside to play or go to the park. That usually helps although it's not realistic to do, say at ten at night. I also try to give him extra fluids of whatever he will drink. I know that probably doesn't make a difference in getting those darn gluten molecules out of his system but it makes me feel like I'm doing something.

The tantrums are very hard to handle for us, too. Our nine year old gluten-free daughters have more "mood swings" with an attitude and get mean, mouthy and hard to get along with, but they don't physically tantrum like they used too.

Good luck to you!!!!

[taweavmo3]

We have that problem here......for us, it can get pretty ugly. And, this is where my husband and I often conflict! I know how it feels to have out of control emotions after a glutening, so I let more slide. I draw the line when they hit a sibling, or are getting out of control. If that happens, they have to go to their room until they can calm down. Sometimes this means they tear everything off their bed, lol, but at least they are taking their aggression out on something, and not a person. Other than that, none of my usual discipline techniques work in a gluten mood swing. It's like they go to a different place, and are just raging mad, and do not even hear me.

I also try to just lay low if possible...I don't take them anywhere when they are in the thick of it. Any sort of gliche can cause a huge meltdown, and they are too big now for me to carry them back out to the car! I remember calling my mom crying, b/c my 5 year old was just screaming, in a horrible rage, b/c he'd had some milk. There was nothing I could do except wait for it to pass and make sure he didn't hurt himself or anyone else.

Sorry, guess I'm not much help am I??? This is why I really don't mind cooking everything from scratch, never eating out, etc......I'll do anything to avoid the kids' gluten rages that cause me to feel like a hostage in my own house!

[seezee]

Well, I certainly am NOT trying to disagree with the pp who suggested getting a social worker, but please be careful with that because one, they made "invade your territory and read too much into this" and two, betcha they will have no experience with gluten moods.

Our five year old does the same thing. We know we are in trouble and storms a brewing when his outer ears turn red and he boom, get the red rash ring around his mouth. Then, the tantrums begin, bad. Since he only five, he is small enough for myself or my husband to hold tightly (not, "that" tight but enough to restrain him comfortably) in a big hug to help him calm down. I try to deviate his attention with pretty much anything, even if it means packing the whole family outside to play or go to the park. That usually helps although it's not realistic to do, say at ten at night. I also try to give him extra fluids of whatever he will drink. I know that probably doesn't make a difference in getting those darn gluten molecules out of his system but it makes me feel like I'm doing something.

The tantrums are very hard to handle for us, too. Our nine year old gluten-free daughters have more "mood swings" with an attitude and get mean, mouthy and hard to get along with, but they don't physically tantrum like they used too.

Good luck to you!!!!

No, our hospital celiac program has people (dieticians and social workers) specially trained in celiac and behavioral stuff. I don't think a normal social worker would be too helpful. Usually at each appointment the GI asks about physical, social, and emotional adjustments.

Open Original Shared Link

[EmilyR83]

My baby(16 months) has a similar reaction to gluten. He will be miserable sick and the slightest thing makes him so mad, he will throw himself back as hard as he can over and over screaming and yelling. I hadnt really thought ahead to what it will be like when he is older. That is a scary thought. I guess the best you can do is talk to her and explain that being so moody doesnt help matters. Maybe you can buy her a little punching bag or something to let her frustrations out on. I couldnt imagine being such a small child and being in so much pain.

[EmilyR83]

My baby(16 months) has a similar reaction to gluten. He will be miserable sick and the slightest thing makes him so mad, he will throw himself back as hard as he can over and over screaming and yelling. I hadnt really thought ahead to what it will be like when he is older. That is a scary thought. I guess the best you can do is talk to her and explain that being so moody doesnt help matters. Maybe you can buy her a little punching bag or something to let her frustrations out on. I couldnt imagine being such a small child and being in so much pain.

[crittermom]

Hi,

My ds also has "after" affects of the gluten. I don't know how much help I can be because she just cries and cries uncontrollably. She will be cranky and moody but not aggressive towards us or her brother. Just cranky, usually she just stomps off. We remind her gently that it is the gluten talking and to try to control her words a little better. When she does hit the wall and starts the crying binge, we just sit on the sofa and hold her and let her cry it out. The crying is usually the last stage of it and she usually does this at night and basically just cries herself to sleep. It is heartbreaking. Luckily she is getting older and a little more responsible at school so we have only hit that once so far this year.

It is such a hard thing to deal with because even though you know it is the gluten, it doesn't make it any easier to deal with. Maybe if you have another adult at home to help you can trade off dealing with tantrums when they hit so each of you have a break. Good luck and I hope you dd is doing well.

[Rondar2001]

Thank you everyone for your responses.

I think it helps just to know we are not the only ones going through this. Now to get the hubby to understand that she isn't meaning to act this way; at least he ususally just gets frustrated and hides out in the garage.

[chiroptera]

OH, If your hospital has special trained social workers then I definitely would ask for their help! That is great!!!

[StacyA]

Well, I certainly am NOT trying to disagree with the pp who suggested getting a social worker, but please be careful with that because one, they made "invade your territory and read too much into this" and two, betcha they will have no experience with gluten moods.

Don't associate 'social worker' with Children Services - it's a common misconception.

Even if a social worker isn't familiar with celiac's, the social worker may be able to at least help with behavior modification, stress management for the parent, etc. Once the mood swing is set in motion, what started the mood swing (gluten or casien or whatever) doesn't necessarily determine what you do to soothe the child or help the parent cope - and those types of things are what the social worker may know.

And, if the social worker isn't familiar with celiac's, educate him or her.

[dilettantesteph]

I have the same problem with my son, diagnosed at 10, now 12. They do become better at controlling things as they get older. I don't try to reason with him much when he is in the middle of it. I think that it is like trying to talk to an alcoholic when he is in middle of bender. When he is calm we talk about ways of handling things. It is hard to get him to admit that he was unreasonable due to gluten. He generally insists that it is everyone else and not him. The next day or so, when he has gotten over the gluten affects it is easier to discuss it. The worst is when we are both glutened!!

[ciavyn]

Just a thought on this - I do not have a child with gluten issues, so this is from a psych perspective and parent perspective...when my youngest was going through some pretty impressive emotional roller-coasters when he was about 5-7 years of age, I made it clear that it was okay to be angry. Emotions are fine, especially when they may be caused by - in his case - a hormone swing, or in your little one's case, a reaction. I tried to make him understand, as best I could, that you can be angry. We taught him to go in his room, and close the door. Then he could cry or vent or throw fits, whatever he needed to, as long as he didn't ruin furniture or walls! It took a few times of bodily putting him in his room before he took the hint. Now, he's almost 10. When he gets angry or is frustrated because he got in trouble, he goes down to his room (in his case, he gets under the bed where he feels safe) and has his emotional breakdown. He might scream, tear up his bed, throw his clothes, whatever. Then he comes back up when he's under control. No one comments (except his pesky big brother) and life continues on.

What I wanted to teach him - what we all have to learn as we move into adulthood - is that emotion are not bad. It's all in how we channel them. Small children may not be able to grasp this, but over time, as they get older, they find a safe way to have their emotions, and then they do not fear them or try to suppress them - neither of which is healthy. Just a thought, and again, I can't directly relate because as far as I know, they do not have gluten issues. But all kids have emotions, and this is what has worked in our house.

Best of luck, and hang in there. Too soon they're grown up and you wonder what happened!

[Juliet]

My 6 year old son does the same thing and it lasts for about 5-7 days. It is no fun. I try to help him pinpoint where the anger is coming from (sometimes that's enough to get him to wind down when he realizes it's truly nothing and he's just angry), let him know he's better than the emotions that are controlling him, and that we love him. It's also sad because he acts a bit bipolar at times and almost obsessively and possessively loving (ready to cry when he remembers a slight rejection say from a friend that happened months before, holds onto us as if he's afraid we'll never come back if we do something like go to the bathroom). We just do our best to try to stay in control and make sure we cry from frustration after he's asleep. I tried talking to some therapists, but at least for us they weren't much help. Of course, neither knew what Celiac Disease was and that it can dramatically affect behavior either.

If you can go to a support group (if you're not near Boston), they may be able to help point you in a better direction. Right now we just try to grin and bear it while where protective gear!

[Juliebove]

I just now saw this. Don't know how I missed this when it was first posted.

Daughter is 11 now and no longer does this. BTW she does not have celiac, but food allergies.

She used to have fits like this far more often before we learned of the food allergies at age 6. I do not know if the fits she had after were related to allergies or not. We do eat out a lot and it is possible she ate something she shouldn't have. I recently found out that the enchilada sauce she had at one place had peanut butter in it and at another place had peanut butter, wheat and dairy! She seemed to have no reactions to these foods, so I don't know.

I do know that when she got very upset like this, there was nothing anyone could do to help her. You can not use the phrase "time out" to her even now. I think this stems from a very bad experience at a neighbor's house. I wasn't there so don't know exactly what happened. The neighbor put her in a time out in their small bathroom after she hit their puppy with a stick. She was about 2 or 3 then. Can't remember the exact age.

The only other time out she had ever gotten was by me where I made her sit quietly on the couch for 2 minutes. That didn't go well. She was not quiet and had to be restrained. That time it was for running out the door and crossing two streets by herself at about 18 months.

Anyway, when I got to the neighbor's house, she was screaming like a banshee and trying to beat the door down. Since then that is what she has done when we've tried to put her in a time out. Her arms would be bruised from the pounding and she would also either vomit or pee on the floor. It was NOT good so I tried not to use this as a form of discipline. Luckily she doesn't do too many bad things so doesn't much need discipline.

My husband however would not tolerate her screaming, angry fits and would try to shut her in her room. This only made things worse.

What I learned to do was try to get her in another room. It did not work to tell her to go to her room. That only made her more hysterical. She does not sleep in her room, but sleeps in mine on a separate bed. If I could get her to that bed, it did help slightly to calm her down. I would get her to lay down and perhaps I would lay there for a little while. If she could calm down slightly, I would let her cry or whatever she needed to do. But if she was hurting me by hitting or kicking, I would leave. If she was screaming at me, I would leave.

If I could not get her into another room, I would either go into another room myself or at least get away from her. And then I would not pay any attention to her. I have a rule and that is, if she can not speak to me quietly and rationally, she can not speak to me at all. I will not tolerate screaming, name calling, or telling me what to do.

In her case it seemed to take a good hour of hysteria. By then she was just exhausted and only then would she calm down. She did tell me once before we knew of her allergies that she "wished God had not maked me". I have to wonder if it is not because she felt so sick all the time. I have food allergies myself and was not diagnosed until a few years ago. I just thought everyone felt sick to their stomachs all the time. I used to get angry with people smiling. I would think... How can they smile when they feel so bad? But it was only after I felt better that I realized how bad I really had felt.

Her behavior in school is different now too. They used to think she had ADD. She would sometimes act spaced out and would not pay attention. That's all over now. I do think we are much better with the diet now, especially since she can read food labels for herself. My husband used to feed her allergens such as Teriyaki because he doesn't believe in food allergies. She will no longer go out to eat with him unless it's at a restaurant where they know her and make special food for her. She has also admitted to sneaking the allergens at a younger age, thinking that it wouldn't matter. So who knows? She may have had bread or something on those occasions where she acted out. I do keep it in the house, but away from her food.

I also think being older helps her to better explain to me when she is in pain or having other medical issues.

[T.H.]

It's so motivating, isn't it??

My son is the same with dairy. It's like I suddenly have 'demon child.' So hard to cope with.

It was starting all over again - I was at my wits end - and then we found out corn does it to my son now, too!

Everything from scratch, all the way.

Now if I only knew how to cook better. :-)

Shauna

We have that problem here......for us, it can get pretty ugly. And, this is where my husband and I often conflict! I know how it feels to have out of control emotions after a glutening, so I let more slide. I draw the line when they hit a sibling, or are getting out of control. If that happens, they have to go to their room until they can calm down. Sometimes this means they tear everything off their bed, lol, but at least they are taking their aggression out on something, and not a person. Other than that, none of my usual discipline techniques work in a gluten mood swing. It's like they go to a different place, and are just raging mad, and do not even hear me.

I also try to just lay low if possible...I don't take them anywhere when they are in the thick of it. Any sort of gliche can cause a huge meltdown, and they are too big now for me to carry them back out to the car! I remember calling my mom crying, b/c my 5 year old was just screaming, in a horrible rage, b/c he'd had some milk. There was nothing I could do except wait for it to pass and make sure he didn't hurt himself or anyone else.

Sorry, guess I'm not much help am I??? This is why I really don't mind cooking everything from scratch, never eating out, etc......I'll do anything to avoid the kids' gluten rages that cause me to feel like a hostage in my own house!

[leecindy417]

I am new to all of this so please forgive me if I come across the wrong way.

If you know your child has a gluten allergy and you know what the consequences are going to be then why do you allow them to have it?

My son was recently diagnosed so you will most likely see me on here asking pretty silly questions. Thanks for understanding.

[Rondar2001]

No silly questions here.

We don't purposly let them have gluten. All of my daughter's issues come from cross-contamination or the rare bone headed move on my part.

Although we try our best, I think it's inevitable to get glutened once in a while. You can't beat yourself up about it, it happens to anyone who takes the chance to eat anything. Once it does, you just to plug your way through it.

Welcome to the board, you will find alot of great advice here.

Thanks again to everyone else for your suggestions.

[leecindy417]

No silly questions here.

We don't purposly let them have gluten. All of my daughter's issues come from cross-contamination or the rare bone headed move on my part.

Although we try our best, I think it's inevitable to get glutened once in a while. You can't beat yourself up about it, it happens to anyone who takes the chance to eat anything. Once it does, you just to plug your way through it.

Welcome to the board, you will find alot of great advice here.

Thanks again to everyone else for your suggestions.

[leecindy417]

Okay. So you mentioned cross contamination. Is there such a thing as having a little gluten allergy or a little celiac disease? The reason I am asking is because my son was recently diagnosed and has symptoms but they are not always present. Can I still toast his gluten free bread in the family toaster? Does he need his own butter? What if we did the gluten free diet but maybe are not as strict with it? Is gluten free the same as wheat free? Can anyone recommend a place I can go to get all my questions answered? I have so many. Thank you so much.

[seezee]

Try one of the celiac centers at a children's hospital. There are several around the country.

Open Original Shared Link

This one has lots of resources. You can order a DVD or watch the videos online. They also have good resources for school.

Open Original Shared Link

We went to a nutritionist at our hospital where they have a celiac class that was about an hour long. Then more recently we went back to learn how to get better nutrition and more fiber on a gluten-free diet. You may want to look for a pediatric GI doctor who specializes in celiac. The ones that don't seem to have outdated and inaccurate information.

As far as I know there is no such thing as a little celiac.

Oh and I found getting a book about celiac and kids super helpful. If you search there are many. I liked the one by Dana Korn.

[Rondar2001]

There is no such thing as a little celiac. My daughter doesn't always have symptoms and it is hard for us to tell when or what got her as she doesn't have an immediate response. I have found that the longer she is gluten free, it takes less to show a reaction and the reaction tends to be more severe. You may find this to be the case with your little guy as well.

You will need to keep him as gluten free as possible. We do have a mixed kitchen in our house, but some families choose to have their kitchen completely gluten free. To do this, we try to keep one counter for gluten free foods only. I also keep a set of wooden spoons and a strainer that are kept free of gluten. She also has a shelf in our pantry for her foods. He will need his own toaster (I bought a cheap one for under $10 at Walmart that works well enough), and I was able to purchase bread bags in case she goes to a relatives and wants her toast.

You should also keep a dedicated tub of margarine, jelly, peanut butter, etc. as these containers tend to collect bread crumbs easily. I mark all of these with a green sticker so everyone knows, I use these for cooking her meals to make sure it is kept safe.

If you are wondering about which foods are safe, I would start with a natural foods store to start. Their staff is usually knowledgeable and they tend to have a bit more of a selection. Once you have a handle on reading labels, then venture out a little more. Also starting with fresh foods and meat is a good way to get going.

Lastly, I would suggest joining your local Celiac group if there is one. Ours had a ton of information to hand out when we joined and the information was invaluable. There is also the opportunity for the kids to get to know each other with things like Christmas parties and summer camps.

Hang in there, it does get easier.

[leecindy417]

Thank you so much for the reply. I will definitely try the web sites you suggested as well as the nutritionist. I did find it odd that our pediatric GI doctor never recommended a nutritionist. To tell you the truth I would change doctors if I could but he is the only one in the area. We live about ten minutes outside Albany, NY and Albany Medical Center is a hopsital known for its great reputation. He preactices out of Albany Medical Center. This guy called me with the biopsy results said to do a gluten free diet and he would mail me a packet of information. I waited for the packet before starting the diet figuring it would have useful information. It was a print out of a web site I had already been to! There was never even follow up scheduled. My husband and I now have a meeting scheduled with him for Monday to get more answers. The next closest pediatric GI doctor is Boston, MA. which is a five hour drive for us not to mention the wait to even get in to see one of the doctors there.

Try one of the celiac centers at a children's hospital. There are several around the country.

Open Original Shared Link

This one has lots of resources. You can order a DVD or watch the videos online. They also have good resources for school.

Open Original Shared Link

We went to a nutritionist at our hospital where they have a celiac class that was about an hour long. Then more recently we went back to learn how to get better nutrition and more fiber on a gluten-free diet. You may want to look for a pediatric GI doctor who specializes in celiac. The ones that don't seem to have outdated and inaccurate information.

As far as I know there is no such thing as a little celiac.

Oh and I found getting a book about celiac and kids super helpful. If you search there are many. I liked the one by Dana Korn.

[leecindy417]

Wow! Thank you so much for all the information. What a help. It's the little things you can't really research on the computer that bug me. Like the toaster, peanut butter, jelly, etc all being separate. I really thought maybe someone could be a little bit celiac so it is good to know that is not the case. If you think of anything else you want to add please feel free to email me anytime. The more information I have the better. After our meeting with the pediatric GI doctor this Monday I am hoping to have more answers from him as well and begin the diet once and for all. Thank you again.

There is no such thing as a little celiac. My daughter doesn't always have symptoms and it is hard for us to tell when or what got her as she doesn't have an immediate response. I have found that the longer she is gluten free, it takes less to show a reaction and the reaction tends to be more severe. You may find this to be the case with your little guy as well.

You will need to keep him as gluten free as possible. We do have a mixed kitchen in our house, but some families choose to have their kitchen completely gluten free. To do this, we try to keep one counter for gluten free foods only. I also keep a set of wooden spoons and a strainer that are kept free of gluten. She also has a shelf in our pantry for her foods. He will need his own toaster (I bought a cheap one for under $10 at Walmart that works well enough), and I was able to purchase bread bags in case she goes to a relatives and wants her toast.

You should also keep a dedicated tub of margarine, jelly, peanut butter, etc. as these containers tend to collect bread crumbs easily. I mark all of these with a green sticker so everyone knows, I use these for cooking her meals to make sure it is kept safe.

If you are wondering about which foods are safe, I would start with a natural foods store to start. Their staff is usually knowledgeable and they tend to have a bit more of a selection. Once you have a handle on reading labels, then venture out a little more. Also starting with fresh foods and meat is a good way to get going.

Lastly, I would suggest joining your local Celiac group if there is one. Ours had a ton of information to hand out when we joined and the information was invaluable. There is also the opportunity for the kids to get to know each other with things like Christmas parties and summer camps.

Hang in there, it does get easier.

[seezee]

There is a link on this forum to help you find doctors. You may want to see if there is one in Albany? We went to three pediatric GI doctors before I settled on one we both liked. It's really worth it. I found it is really important to find one that talks to my daughter and answers her questions. This doctor also knew about the complications, what to check for and how to treat it. I think there is a long list of things they should check for when your child has celiac most of which can be treated.