[Kelgs]

Hello Everyone,

My husband has celiac disease and has been gluten-free for almost 5 years now. I have three boys ages 8, 5 and 1. My older two had a blood test 4 years ago and we were told they were not celiac. However, they do have occasional tummy troubles and joint pain but the biggest problem is behavior. Since my husband is gluten-free many of the things we eat are also gluten-free. When my boys have gluten they really seem to change. Could they really be affected by it? My 8 year old becomes very angry, mean and aggressive, my 5 year old starts crying over everything and loses control easily. I took them 100% off of gluten 2 weeks ago and they seem like totally different children! The house is actually peaceful! I homeschool them so I can REALLY see a difference! I am happy but also sad if gluten is really the cause. I just can't believe gluten could cause such behavior problems. Most everyone tells me if they don't have constant tummy trouble, gluten is not the cause. Does anyone else have children where gluten causes behavior issues.

Thanks,
Kelly

[Guhlia]

Gluten can absolutely cause behavioral problems. That's a fairly common symptom in young children.

[gf4life]

My oldest son has behavior issues as his most prevalent symptom. He is normally a very sweet guy, but give him some gluten and he turns into a horrible, angry, moody little brat. Punching things, throwing things, beating up his brother, slamming doors, screaming "I HATE YOU", etc. Thank God we found out about gluten before his teenage years! It could have been a nightmare.

My daughter gets very emotional and cries a LOT if she gets glutened. Sometimes the way I know she has been glutened is because she can't stop crying about everything and she starts having night terrors again. She will just start screaming in her sleep and nothing I can do will comfort her much at all. The next morning she won't remember at all. She only does this when she has gluten.

In fact all of my kids tend to be more emotional when they get glutened. I was always told I was an emotional child, always moody and crying. The littlest thing would set me off. I also had joint problems and tummy troubles from a very young age. I now have some irreversible damage since I did not know I needed to stop eating gluten untill I was 30!

If your husband is confirmed to have Celiac, then your children should have been tested at least once every 2 years, more often if they have symptoms. One test 4 years ago would not be enough to say they don't have it. A lot of people (especially children) test false negatives, there are too many things that can mess up the tests, from there not being enough damage to cause positive levels of antibodies (still damage, but not severe), to the lab not knowing how to run the test properly, or the doctor not understanding that the tests are not 100% accurate, I've even heard that certain levels of cortisone in the blood can alter test results, and if you went even a few days without gluten before the tests that can be enough to alter the results too.

I've also read that people with neurologial gluten-caused problems often have less intestinal distress and test negative on the blood/biopsy, because the gluten is attacking their brain more than their intestines. It sounds reasonable to me. I know my children, especially Ben, are completely different while gluten free than they were on a gluten filled diet.

[lonewolf]

My 11 year old son was having behavior issues last year at home and was having problems with concentrating at school. His teacher wanted me to get him tested for ADD. His grades were not as good as they should be and he was starting to be disruptive in class. I opted for going to the pediatrician to look into food sensitivites first. He tested negative on all blood tests (and later even negative through Enterolab). We decided to try the diet anyway and within a week his teacher said that he was "a completely different child". We can tell when he's been glutened by his behavior - anger, whining, even almost paranoia. Since I'm gluten-free already, it's not that big a deal to have one more in the family (my 15 yo daughter is gluten-free too). He has minor digestive issues - mostly constipation, but the behavior is THE big thing.

[celiacgirls]

Bad behaviour is one of my daughter's only symptom. Eating gluten or casein causes her to be angry, aggressive, and defiant. The only test she has ever had is the Enterolab test.

My other daughter does have stomach issues but she is more anxious and ADHD-like when she has eaten something. Her blood tests were negative but her Enterolab tests were positive.

It is sad that they can't eat almost anything the other kids are eating but they couldn't have been happy with the way they felt before, either. Our home life is much more peaceful now.

[Kelgs]

Thank you! Thank you everyone who has replied. I feel so much better knowing my boys are not the only ones out there with this problem. I joined a group for parents of celiac kids and they had never heard of this. I am so glad I'm not crazy!

Thanks again!
Kelly

[Electra]

It can definitely effect behavior. My daughter has the worst temper tantrums I've ever seen and I've worked in child care for over 12 yrs. now. She totally goes balistic and it goes beyond just getting her way and her behavior changes when she is not getting gluten. I have a 5 yr. old that has been vomiting since infancy and we can't figure out why, so today I took him for a blood test because I'm almost positive he has Celiac disease too. He used to be very calm (I think it's because he lost most of his food when he vomited) but lately he's not throwing up as much but he completely freaks out when things don't go his way and can't be reasoned with. He also gets very hyper and you can't seem to calm him down and this is so uncharacteristic of him, so I'm thinking since he's no longer throwing up the foods that have gluten he's having other reactions to them. By the way my daughter tested negative for Celiac but she has dermatitis herpetiformis so we know she has Celiac. Blood tests on children often come back negative even if the child has Celiac, so sometimes the only way to tell is to cut gluten out of their diets.

Good Luck!!

[Queen Serenity]

My 11 year old was just recently diagnosed with Asperger's Syndrome, which is a form of Autism. I have had Celiac's since he was born, but was not diagnosed until he was nine months old. I have been doing a lot of research, and I believe that gluten is connected to behavior. He is a very angry child, and shows no cooperation in school. I also believe that if celiac's runs in the family, then gluten can affect a non-celiac member. I am having my son tested on Tuesday, just as a precaution, because he hasn't been tested in a few years. If the blood work comes back negative, I am still going to try a gluten free diet with him. It's not going to be easy, but if it will change some of the negative behavior, then I will be one happy mom.

Vicki
gluten-free since 1995

[Kelgs]

Vicki,
I would with out a doubt try the gluten-free diet for you 11 year old. It has made a world of difference in my boys even though ther bloodwork was neg.
Good Luck!
Kelly (Mommy of Alex 8, Ethan 6 and Zac 1)

Queen Serenity, on Jan 14 2007, 12:30 PM, said:

My 11 year old was just recently diagnosed with Asperger's Syndrome, which is a form of Autism. I have had Celiac's since he was born, but was not diagnosed until he was nine months old. I have been doing a lot of research, and I believe that gluten is connected to behavior. He is a very angry child, and shows no cooperation in school. I also believe that if celiac's runs in the family, then gluten can affect a non-celiac member. I am having my son tested on Tuesday, just as a precaution, because he hasn't been tested in a few years. If the blood work comes back negative, I am still going to try a gluten free diet with him. It's not going to be easy, but if it will change some of the negative behavior, then I will be one happy mom.

Vicki
gluten-free since 1995

[Kristin2]

My older daughter has gluten intolerance and an auto-immune (probably colitis, not celiac). The gluten causes temper tantrums and hyperactivity. If you'd known her before being gluten-free you'd think she had autism. She also gets exema and the look of a sunburn on her face. Since being gluten, casein, egg, and other foods-free all of these symptoms have disappeared. When she gets something in her system she is sensitive to her face turns red within minutes. We've used this as a quick indicator.

My younger daughter has some of the digestive problems, but really responds with hyperactivity. We tried to put some gluten back into her diet, wondering if she'd outgrown it, but she reacted with extreme hyperactivity. Imagine having a four-year-old who, literally, can't stop moving. After about a week, we pulled out all the gluten indefinately. Within a couple of days, she was focused and calm.

Neither girl has all of the screening markers for celiac. But when they've been tested, they had already been on a gluten-free diet, so the results are not valid. I'm not willing to put them through a gluten diet just to tell me to remove the gluten, since I know the removal works. My older daughter did have an endoscope put through her from stem to stern, and they did find damage in the lower intestine, but not the upper. That's why she has a different auto-immune diagnosis than celiac. I was told it will be a few years before a valid test can tell us exactly which auto-immune she has. In the meantime, she takes medication (Pentasa) and we control her diet. Otherwise, she doesn't gain height nor weight.

[darlindeb25]

Wow, I keep telling my son he should be gluten free. He asked his doctor to test him for celiac disease and that doctor told him, "I do not think it is necessary to test you now for that!" Joe is the 2nd son I have that was told that same thing by a doctor, and they wonder why we lose faith in them!!!

Joe is 25 years old now and he was this child, My oldest son has behavior issues as his most prevalent symptom. He is normally a very sweet guy, but give him some gluten and he turns into a horrible, angry, moody little brat. Punching things, throwing things, beating up his brother, slamming doors, screaming "I HATE YOU", etc. Thank God we found out about gluten before his teenage years! It could have been a nightmare. This paragraph discribes Joe so well and the sad thing is, I didn't know anything about gluten when he was little, or believe me, he would be gluten free now. He too has ADD, he had so much trouble in school. I remember him as a very young child throwing himself on the floor and crying that nobody loves him. Picture him now as 6'3" and 300#, still slamming doors, punching things, and screaming foul things at people. He has been in jail 3 or 4 times for his temper, he has never hit anyone, but he scares them. His hands are huge, he wears a size 17 ring now and 2 years ago he nearly broke his hand slamming it into a wall in a fit of rage. His doctor now has him on Prozac, saying he may be bipolar. I know he isn't, in my heart, I know that gluten-free is probably his answer. He wants to be different, yet it's like he can't control this behavior.

Just last week I asked him to be tested for celiac disease and that is when he told me what his doctor said. I told him to find a new doctor! I honestly would love to have him come live with me here on Long Island, yet until he gets help for his temper, I can't handle him, I can't put myself in that emotional state again. Believe me, Joe is a very sweet guy, a big ole teddy bear. He loves kids and they love him. When he is in a good frame of mind, you could not ask for a nicer man. My kids are all softies like their mom. I wish gluten was not a factor in our lives, yet it is and it will be forever and ever and I truly believe that if he could go gluten-free, he would be a different man.

[SofiEmiMom]

YES! YES! YES! Behavior can definitely be affected by ingesting gluten in a gluten intolerant child (and adult for that matter). Myself and my two daughters aged 4 and 6 are gluten intolerant. Behavior changes are dramatic in them when they get glutened....and usually that is the only symptom. They are both very quiet, sweet girls normally who are excellent at school and both very talented reserved little artists who quietly paint and play their instruments (violin and piano) on a normal day...when they accidentally ingest gluten (usually from school and at grandparents house) they become extremely angry, defient, aggressive, screaming children. The change is astonishing. Their behavior is night and day. It's like Jekyl and Hyde. As challenging as it can be to have to be on a gluten-free diet I feel unbelievably blessed and thank GOD that I know that my children are gluten intolerant. I sincerely cannot imagine how fantastically miserable our life would be if we didn't know. My children would be different children and I would be a very depressed Mother! Above all, follow your own instinct and intuition and don't listen to what other people/doctors tell you. You are your boys' Mother and are most in tune to what is causing their behavioral issues:).

[darlindeb25]

That is so true SofiEmiMom. There is so much to be said for, "If I knew then, what I know now!" Joe called me tonight and was telling me had a lung xray yesterday. He has been ill for almost a month now, under a doctor's care. He called me the other night and was very hoarse and told me this had been going on for 3 weeks, to which I reminded him, my sister and I were both hoarse for an entire summer one year, which is another symptom of celiac's.

Tonight he said this new doctor told him he is suffering from what he feels is bronchitis and put him on yet another med. Then he mentioned to me that he was going to stop taking his prozac, which has helped a little. He also had gained a lot of weight since going on prozac, up to 340#. That is when I asked him to not just stop the prozac, that he should wean off if slowly and to request his doctor give him something different which may work better for him, to which he replied he has not taken the prozac for over a month. I asked if he would try gluten-free for at least 3 weeks and see if it makes a difference and he told me he has no idea how to do it. He thinks he now understands that he has to do this himself and learn to control his aggressive behavior--which is very easy to say when you are not angry and very easy yo forget when the aggression hits hard again.

I am so afraid he will end up in some huge mess with this aggressiveness. I live 800 miles away and always felt so helpless with him. Believe me, if I had known about celiac disease when he was a child, he would be gluten-free now and I am sure, a much happier guy. Yet, I also know, until he is ready to understand gluten-free may help, then I can't help.

I am so happy you were able to help your children.

[Donde]

Kelgs, on Jan 7 2007, 01:53 PM, said:

Hello Everyone,

My husband has celiac disease and has been gluten-free for almost 5 years now. I have three boys ages 8, 5 and 1. My older two had a blood test 4 years ago and we were told they were not celiac. However, they do have occasional tummy troubles and joint pain but the biggest problem is behavior. Since my husband is gluten-free many of the things we eat are also gluten-free. When my boys have gluten they really seem to change. Could they really be affected by it? My 8 year old becomes very angry, mean and aggressive, my 5 year old starts crying over everything and loses control easily. I took them 100% off of gluten 2 weeks ago and they seem like totally different children! The house is actually peaceful! I homeschool them so I can REALLY see a difference! I am happy but also sad if gluten is really the cause. I just can't believe gluten could cause such behavior problems. Most everyone tells me if they don't have constant tummy trouble, gluten is not the cause. Does anyone else have children where gluten causes behavior issues.

Thanks,
Kelly

Hi
i have two kids they both gluten free and i agre with you gluten has to do somenthing with angry behavior, my son acts diferent he gets sad when he eats gluten my dougther gets very angry over anything she is like on controlling then she become normal i talk to my doctor about it but he said girs are like that. I dont think so she is getting better now that we know that she is gluten free but she still has this bad, bad temper and get very anxious, when i see her getting like that i ask her what do you eat today.
only mothers knows and see we are so conecte too our kids i agree with. somen times it is so scary the way she gets.i think it has to do we the food \ my kids are 13 and 11 years old.
pardon my spelling.
Cllaudia

[Celtica]

Well, It was thought that I may have Aspergers Syndrome in my early teens, and(connected?) I definitely had bad social anxiety. Went off the Gluten at 19, and 3 years later I'm a different person. The difference has been amazing. I'm out there doing customer service, great reputation for being good with customers, just, you know, living my life in ways that wouldn't have been likely a few years ago.

I'd actually be interested in hearing if anyone else who either has Aspergers or has been thought to have it has had an almost complete disappearance of Asperger symptoms by going Gluten-Free?