Lots Of Behaviour Problems And Food Intolerances In Child

[nocornhouse]

Hi, my son was diagnosed celiac yesterday, although we have been totally off gluten for about 6 weeks when the testing was finished.

My son was not eating a lot of gluten prior to the testing, we noticed too much gluten set him off, and got very very ill during the gluten challenge that occured right after a bout of pneumonia which may have influenced it all for the worse.

He has always had adhd type behaviour problems, brillant temper tantrums etc that have been mostly resolved through food restrictions. He has been reacting to more adn more foods, although I suspect that is because of the underlying gut damage and so that will resolve with time. he is 9

His behaviour problems have gotten worse since the fall of illness, although I see slow improvement without gluten. He has anxiety and does not want to go out, to the point of hiding to avoid going out. His fits include raging for hours. He hasn't gone to school in two months. He is lethargic (also aenemic, should be picking up some iron supplements today) and doesn't want to go out and play, walk, slide, skate... Overall he is calmer than before, less angry, but really things ain't great as he doesn't want to do much of anything.

Just looking for some insight from others who may have gone through this...things that helped? How long it took to help things resove? Anything helpful:) I am just worn out with it all.

[domesticactivist]

We've been there and GAPS made a world of difference for us.

[xjrosie]

Hi there.

My daughter is newly diagnosed also. She just turned ten ans is still in the "my life sucks" phase. She has diabetes too, so that does contribute.

To be honest, I couldn't really find anything to get her out of her slump, but I did notice that as time goes on, she gets a little more cooperative and a little less negative.

It's been three weeks now, and while she still has bouts of sadness, she is mostly understanding of what's going on and that it doesn't really limit her.

She has already missed about ten days of school, mostly because she refused to get up (and I'm not strong enough to haul around a 70 pound lump of dead weight). I tried all forms of punishment to get her going, and nothing worked. She refused to do homework, and had a hard time focusing in school. Now, her teacher has noticed a huge improvement, she's caught up on all her homework, has been doing her homework, and (for the most part) gets up when I call her.

Good luck to you. My best advice is to give it more time.

[samie]

My daughter has some of the same problems to when gluten. Though it has gotten better now that she has been gluten-free for six months. She use to throw fits all the time. She doesn't have many anymore. she is diabetic to. Some cellists have problems with lactose dairy or soy till their intestines heal. My daughter seem to have problems with lactose so Im giving her lactose free stuff to see if that helps.

[nocornhouse]

We've been there and GAPS made a world of difference for us.

Thanks...it is a good reminder that the GAPS intro worked for us before and can again! And, now that I know we have trouble with oxalates full gaps may be an option.

[nocornhouse]

My best advice is to give it more time.

I will remember that! thank you.

It is good to hear that your daughter is working past the refusing to go to school phase, I hope my son gets there really soon. Thankfully I work from home and can somewhat deal with it, and he is now better enough that he spends the day reading etc. and no longer lying there watching TV feeling ill.

[nocornhouse]

My daughter has some of the same problems to when gluten. Though it has gotten better now that she has been gluten-free for six months. She use to throw fits all the time. She doesn't have many anymore. she is diabetic to. Some cellists have problems with lactose dairy or soy till their intestines heal. My daughter seem to have problems with lactose so Im giving her lactose free stuff to see if that helps.

thanks for the encouragement that will time things will improve.

I have removed dairy and soy as well as high and medium oxalate foods to let our guts heal (son has diagnosis, I am sure some of the rest of us are to follow). I found we reacted to them, particularly since the gluten challenge were were ate more gluten then we have in years, and all got sick (I cooked the same thing for everyone!). We also avoid all corn (allergy) and artificials, and certain fruit/veg families. I am hoping that things improve once we have some gut healing in place, I just wish the insane and lethargic behaviour could be done by tomorrow. The diagnosis gives me hope because I know our guts will improve without gluten, even if we have to do other things too, that one thing I have right!

I have seen evidence of the healing too - my son has actually put on 8lbs on gluten free with all the extra gut healing restrictions!

cellists: I like that, makes me think of people playing the cello with happy intestines due to no gluten

[Victoria5]

In 2006, I began working on a Masters/Education. For 2 years I read every single medical article I could get my hands on about celiac disease, its affect on children and learning, and how schools work with celiac kids and their families. My classmates were sick of hearing about it! Until I put it all together for my final Action Research Project presentation. THEN, they got it. They understood. My obsession was because of my own children: 4 with active celiac, 1 with gluten intolerance/gene who acts very, very much like the children described here (thank you for sharing!).

Gluten exposure was once explained to me early on as having the same affect as rat poisoning, it kills slowly.

However, after reading so many articles, interviewing so many parents, and seeing the affects of gluten on my own children first hand, gluten has more of the same affect as alcohol, making our children high functioning 'drunks'! Gluten affects the brain and body in much the same way as alcohol does, and like alcohol, it affects each person quite differently: ability to focus and balance, memory loss, uncontrollable or sudden angry outbursts, depression, lack of interest, exhaustion, black outs, etc. I have seen all of this at different times and in each of my children (or myself) over the past 7 years, some heartbreaking and some terrifying moments that non-celiacs just wouldn't understand.

From what I have learned, repairs can take anywhere from 6 months to 2 years or longer. The sad truth is, in worst case scenarios (when the gluten free lifestyle is not strictly adhered to or caught early enough), the damage may not be completely repaired.

My oldest children are now able to explain to me what happens when they are exposed. My eldest says she becomes angry at everyone for everything and can't stop the anger, so she isolates herself until she feels the worst affect has passed. She added that she can't think straight, is illogical and overly emotional. My next eldest says she feels like all the energy has been zapped from her (she was also anemic), that something is squeezing her until she feels like she is going to explode. She also says her bones hurt, like fibromylagia (this limits what she does today). When she has been exposed, everyone knows it within 15 minutes as she becomes verbally mean to her siblings and has become violent at moments. My middle daughter says she hurts all over, has 'major brain fog', feels extremely agitated and even the smallest thing will set her off, is lethargic, just not wanting to do anything, and even nauseated. Though they all were good students, all have said they can't remember what teachers have told them, what they wrote in their notebooks or read, or events of the day, and math was their toughest concept to grasp.

My youngest daughter, Calli, the very editor of the Celiac Kids Club online magazine (GIG is our sponsor), now 10, is going through the stage of "It isn't fair. I HATE celiac disease!"--almost on a daily basis. She writes about her experiences, her frustrations and others' reactions to her, and things she learns about celiac disease as the celiac mouse character, Swheats, in her magazine. The magazine creation helps her understand the condition, and allows her to vent a bit, too. (We'd LOVE to have other kids, or their parents, share with us, too!)

My son, only 7, says he can't stop his anger (which I believe), and every night he begs me to scratch his back or put lotion on him because it feels like his skin is crawling (that would make me unable to sit still, too).

Yes, they do grow out of it and they do eventually decide on their own that they don't like the affect of gluten on them! Its that time between now and their own moment of self-realization that is exhausting for parents.

You will go through phases:

1. You control everything in their environment until YOU see improvement.

2. They improve and think all is better, then beg for gluten items and you will be tempted to give in.

3. They start to sneak gluten when they think you will never know (but as a parent, you WILL know!)

4. They realize (expect this to be late teen years) they don't like the feeling of gluten in their bodies and they will stop having it in their diet.

This forum is a great place for support. Check into local support groups as soon as possible. And make sure you take a break at least once a week, just you by yourself, away from the stress that celiac disease throws at you. My battle with celiac disease a daily adventure. I never know what to expect.

It isn't the child that wears you down, it is the disease. Stay strong!

[nocornhouse]

.

It isn't the child that wears you down, it is the disease. Stay strong!

That is one dissertation I would love to read! Thanks for the information, it makes me feel so much more like this is a part of how celiac takes hold of people and I can deal with it! The examples from your family really help me understand better. I see different reactions in all our family members too, and I have made our house gluten-free (as you said, control his environment! but our daughter is better without it, I am sure better without it - and need to be the next one tested -, and hubby will never admit he is better without it). At least I have gone through a 3 year journey with gluten so have watched its devastating affect on us...we pulled it out as part of an elimination diet for food allergies, eventually put it back with no immediate results but 6 months later something was wrong with our son and that continued to get worse, until this summer when I was baking a lot for the market and we connected the gluten dots, so we started pullen gluten back out of his diet (and all of ours, it was making me sick too), but then the doc wanted a gluten challenge so we put it back in full force (more than we had eaten in three years) and I have never seen my son so sick, we only made it two weeks on gluten (every one else wasn't doing well either). I have been able to see loud and clear how gluten affects his health, his behaviour, and things I never would of thought of like his ability to read and focus on things like board games. Whenever I want to pull my hair out I keep remembering how much better he is than 2 months ago, 1 month ago etc. I have also started to figure out what a gluten reaction is for him which gives me patiences with his meltdowns (he found some rice crackers with soy sauce in the cupboard them this week, must feed those to the squirrels, but I knew the next day would be bad, it was, but I saw his frustration levels and quick temper and new what it was from which helps me be a more understanding and calm mom)

I pulled up the magazine, I will put it up for the kids when they are hanging out at the computer with me. Thanks.

And thanks for the last inspiring line, I will be showing it to hubby!

[dilettantesteph]

My son was diagnosed at age 10. That year he missed a third of school while we figured out how the diet worked for us (I was diagnosed too) and our super sensitivity. It was a very trying time as the school principal was giving me all sorts of grief for not sending him in when he was throwing up. When we came here for help, people kept telling us that the food that was making us sick shouldn't be making us sick. People were telling me that he was pretending to be sick to miss school. Since that food made me sick to, I believed that he really was sick. The throwing up is hard to fake too. He had terrible behavior issues. He performed poorly in school, and he was always punching his sister at home.

Now 4 years later he is a wonderful young man. He is an almost straight A student and he and his sister get along great. He stopped throwing up, and we have for the most part figured out a diet that works for us, consisting mainly of dairy, fruits and veggies. There is a light at the end of the tunnel.

[researchmomma]

In 2006, I began working on a Masters/Education. For 2 years I read every single medical article I could get my hands on about celiac disease, its affect on children and learning, and how schools work with celiac kids and their families. My classmates were sick of hearing about it! Until I put it all together for my final Action Research Project presentation. THEN, they got it. They understood. My obsession was because of my own children: 4 with active celiac, 1 with gluten intolerance/gene who acts very, very much like the children described here (thank you for sharing!).

I would love to read this!

My oldest children are now able to explain to me what happens when they are exposed. My eldest says she becomes angry at everyone for everything and can't stop the anger, so she isolates herself until she feels the worst affect has passed. She added that she can't think straight, is illogical and overly emotional. My next eldest says she feels like all the energy has been zapped from her (she was also anemic), that something is squeezing her until she feels like she is going to explode.

This is exactly how my daughter reacts so far. We are new to this but had to regluten her for a test and this is EXACTLY what she said to me after one day off her gluten-free diet.

My youngest daughter, Calli, the very editor of the Celiac Kids Club online magazine (GIG is our sponsor), now 10, is going through the stage of "It isn't fair. I HATE celiac disease!"--almost on a daily basis. She writes about her experiences, her frustrations and others' reactions to her, and things she learns about celiac disease as the celiac mouse character, Swheats, in her magazine. The magazine creation helps her understand the condition, and allows her to vent a bit, too. (We'd LOVE to have other kids, or their parents, share with us, too!)

My daughter did not test positive for Celiac but she is gluten sensitive obviously. I hope she will read the magazine even though it is geared for Celiac Disease. That is great that your daughter is doing that!

[nocornhouse]

My son was diagnosed at age 10. That year he missed a third of school while we figured out how the diet worked for us (I was diagnosed too) and our super sensitivity. It was a very trying time as the school principal was giving me all sorts of grief for not sending him in when he was throwing up. When we came here for help, people kept telling us that the food that was making us sick shouldn't be making us sick. People were telling me that he was pretending to be sick to miss school. Since that food made me sick to, I believed that he really was sick. The throwing up is hard to fake too. He had terrible behavior issues. He performed poorly in school, and he was always punching his sister at home.

Now 4 years later he is a wonderful young man. He is an almost straight A student and he and his sister get along great. He stopped throwing up, and we have for the most part figured out a diet that works for us, consisting mainly of dairy, fruits and veggies. There is a light at the end of the tunnel.

Thank you, I am going to get hubby who is stomping around saying no one else misses this much school for celiac, to read it. I can totally understand missing school because you are trying to get the diet right! This week I realized that either coconut, coconut milk or something in the coconut milk is not good for his gut....maybe the high fat content? anyways, their went another two days of school, and that was after a ped appoint and before two days of snow days...another week gone! One day I will have it all right, thankfull we have a wonderful principal who is happy to have him try to cope with half days for now (hopefully he can).

Thanks for telling me how well things are going now for you both!

[Ginnie64]

In 2006, I began working on a Masters/Education. For 2 years I read every single medical article I could get my hands on about celiac disease, its affect on children and learning, and how schools work with celiac kids and their families. My classmates were sick of hearing about it! Until I put it all together for my final Action Research Project presentation. THEN, they got it. They understood. My obsession was because of my own children: 4 with active celiac, 1 with gluten intolerance/gene who acts very, very much like the children described here (thank you for sharing!).

Gluten exposure was once explained to me early on as having the same affect as rat poisoning, it kills slowly.

However, after reading so many articles, interviewing so many parents, and seeing the affects of gluten on my own children first hand, gluten has more of the same affect as alcohol, making our children high functioning 'drunks'! Gluten affects the brain and body in much the same way as alcohol does, and like alcohol, it affects each person quite differently: ability to focus and balance, memory loss, uncontrollable or sudden angry outbursts, depression, lack of interest, exhaustion, black outs, etc. I have seen all of this at different times and in each of my children (or myself) over the past 7 years, some heartbreaking and some terrifying moments that non-celiacs just wouldn't understand.

From what I have learned, repairs can take anywhere from 6 months to 2 years or longer. The sad truth is, in worst case scenarios (when the gluten free lifestyle is not strictly adhered to or caught early enough), the damage may not be completely repaired.

My oldest children are now able to explain to me what happens when they are exposed. My eldest says she becomes angry at everyone for everything and can't stop the anger, so she isolates herself until she feels the worst affect has passed. She added that she can't think straight, is illogical and overly emotional. My next eldest says she feels like all the energy has been zapped from her (she was also anemic), that something is squeezing her until she feels like she is going to explode. She also says her bones hurt, like fibromylagia (this limits what she does today). When she has been exposed, everyone knows it within 15 minutes as she becomes verbally mean to her siblings and has become violent at moments. My middle daughter says she hurts all over, has 'major brain fog', feels extremely agitated and even the smallest thing will set her off, is lethargic, just not wanting to do anything, and even nauseated. Though they all were good students, all have said they can't remember what teachers have told them, what they wrote in their notebooks or read, or events of the day, and math was their toughest concept to grasp.

My youngest daughter, Calli, the very editor of the Celiac Kids Club online magazine (GIG is our sponsor), now 10, is going through the stage of "It isn't fair. I HATE celiac disease!"--almost on a daily basis. She writes about her experiences, her frustrations and others' reactions to her, and things she learns about celiac disease as the celiac mouse character, Swheats, in her magazine. The magazine creation helps her understand the condition, and allows her to vent a bit, too. (We'd LOVE to have other kids, or their parents, share with us, too!)

My son, only 7, says he can't stop his anger (which I believe), and every night he begs me to scratch his back or put lotion on him because it feels like his skin is crawling (that would make me unable to sit still, too).

Yes, they do grow out of it and they do eventually decide on their own that they don't like the affect of gluten on them! Its that time between now and their own moment of self-realization that is exhausting for parents.

You will go through phases:

1. You control everything in their environment until YOU see improvement.

2. They improve and think all is better, then beg for gluten items and you will be tempted to give in.

3. They start to sneak gluten when they think you will never know (but as a parent, you WILL know!)

4. They realize (expect this to be late teen years) they don't like the feeling of gluten in their bodies and they will stop having it in their diet.

This forum is a great place for support. Check into local support groups as soon as possible. And make sure you take a break at least once a week, just you by yourself, away from the stress that celiac disease throws at you. My battle with celiac disease a daily adventure. I never know what to expect.

It isn't the child that wears you down, it is the disease. Stay strong!

Hi Victoria5

I found your info very helpful. Thank you for writing all this info. My son doesn't have anger problems but he has told me his brain is in a fog, and his bones hurt. I have a better insight to what he is going through.

Thank you

[mommyto2kids]

Victoria,

Is your thesis posted somewhere that we could read it? Would you ever share it. We'd sure appreciate it. Thanks for all your insight?

[Aly1]

Yes, I've been reading along on this post and I would also love to read that thesis!

[LaceyR]

This is all such great info, very encouraging!