Celiac Disease And Children's Behavior

[lkforster]

Hi everyone!

 

I just joined this forum today, particularly because my 9 year old son's behavior has gotten progressively worse in recent months. The "team" at his elementary school have been quick to suggest ADD/ADHD, but as a teacher myself, I'm just not convinced that is the problem.

 

I myself have been gluten free for 14 months. In the three years prior to going gluten free, I experienced frequent stomach cramps, vomiting, and constant diarrhea-they grew worse over time, to the point that I was experiencing severe vomiting attacks 2-3 times a week, attacks that left me physically exhausted and sore. Even though I had gone to my doctor at least a dozen times, trying to determine a cause, the best she could come up with was IBS. After my last attack 14 months ago, when I missed three days of work in a row, I went to my boss to explain my absence-I felt so ridiculous explaining to her that I was sick all the time, but didn't know why. Fortunately, I have a great boss, and one who has Celiac Disease. She suggested I eliminate gluten from my diet, which I did immediately-within a few days, I felt like a new person. Because I stopped eating gluten, I have not had the test for Celiac-I have done enough research to know that if it's not in your system, the test will result in a negative reading. However, I'm 99% certain that I have Celiac-I have been "glutened" a few times since that day, unknowingly, but have been able to trace my symptoms to a single gluten source on those occasions. I miss so many foods (especially great bread!), but none of them are so good that they're worth the physical toll they take on my body.

 

As for my son...to say he is a difficult child is putting it mildly. He was easy going and downright sweet until a few years ago, when he began to physically lash out when he was upset: hitting others, stomping his feet, slamming doors, etc. At that time, my husband had just returned from a deployment to Iraq, and we thought Carter was reacting to a difference in our routine and maybe worried that his dad would leave again. He had also just started first grade, the first year that he was in school all day, and he was in a different class from his twin brother (they were inseperable until that point). However, he didn't adjust whatsoever, and the physical aggression only became more pronounced; in addition, he has become increasingly disruptive in his classroom environment, can't seem to control his impulses, and is also quite disrespectful. This only happens *sometimes*, but no one (from us parents, to his teachers, to the school psychologist, to the school SPED teacher) can determine a trigger. In the past few months, Carter's energy level has also been a problem-he complains often of being tired, despite the fact that he has a regimented bedtime and wake-up each day (10 hours of sleep total), and his classroom teacher has reported that he often "zones out" during assignments, staring into space and making no attempt to do his work, but also no attempt to engage with his peers either. His cognitive/academic skills are much higher than his classmates, but he often does poorly on tests administered via computer. In the last month, he has been complaining of headaches, and has also broken out into rashes that I assume are hives (I got them as a kid, and still do on rare occasions). Finally, Carter is a small kid-his twin brother is 6 inches taller and outweighs him by 30 pounds. He looks normal when clothed, but once he takes his shirt off, we can count ribs.

 

We have an appointment with our pediatrician scheduled for the 17th, and I'm anxious to begin the testing process. My concern is that he won't be willing to do that (our insurance is TriCare, and our provider is an overloaded military hospital). The more information we go in with, the better off we will be. Do any of you have experiences you can share, or possible resources/links that may help us?

 

Thanks for any feedback, I appreciate the support!

 

Leanne

[bartfull]

Ikforster, I'm sorry no one has answered you yet.

 

But it does sound like his behavior could be gluten related. If you found relief on a gluten-free diet, you have either celiac or non-celiac gluten intolerance. I'm not sure what the stats are on NCGI, but if you have actual celiac disease, your son has a 1 in 3 chance of having it too.

 

And you may have noticed there are other folks here who have kids with similar behavior problems that resolved on a gluten-free diet. Heck, even we adults sometimes have behavior problems when we get glutened. I myself get unbearably grumpy. And we all get brain fog.

 

If your doctor won't test him you could just put him on a gluten-free diet, but it would be better if you could get a dianosis for him because then he will have an easier time at school and camp and what-have-you.

 

Now that I've brought this thread back to the top I'm sure someone will be along soon to tell you exactly which tests he should have. (I'm one of those self-diagnosed due to lack of insurance people.)

 

Best of luck to you, and do spend some time reading here - especially in the "Parents of kids/babies with celiac" section.

[lkforster]

Thanks so much for your feedback! I have often wondered if I am truly celiac disease, or just have a gluten intolerance-either way, I still feel horrible when I consume it, so an actual diagnosis is not that important to me. Like you, I experienced the grumpies, and the brain fog was horrible at times-I once got to work late (I'm a teacher, very regular schedule) and was shocked to find the building principal in my classroom with all of my students. It had to be explained to me that I was late, and even then, it still didn't register-I kept looking at my watch and the clock, completely not comprehending what had happened. I get up at 5:15, leave the house at 6:45, arrive at school at 7:10 every single day...and yet that morning, I went blank. Awful feeling, to say the least.

 

Although a diagnosis isn't necessary for me, it definitely is for my son-without it, I doubt his school will be able to make dietary accomodations for him. We also just signed off on an IEP (Individual Education Plan) for him that allows his teacher to send him to the Special Education room when he is being disruptive-the team at his school has also clearly stated that if there's no improvement in the near future, he will most likely be designated as primarily Special Ed and removed from his mainstream classroom alltogether. I believe a diagnosis would prevent that from happening, as the cause would be considered environmental and not behavioral.

 

There is SO much information on this site, but I've already begun to collect information to arm myself with for my son's upcoming appointment. The past few years have been so frustrating, we just want a healthy family! Thanks for the support!

[Celiac Mindwarp]

It sounds like you are doing the right things here. Could you tell his school that you have suspicions and that it may take some time to get a diagnosis? Maybe they could hold off any action until you have seen the doctor and pursued testing. You could explain that he needs testing, and must eat gluten for testing, but that either way, you will be trialling a gluten-free diet with him.

You can certainly mention the genetic link making it possible for him to be affected.

Parents instincts are often right, and now you have 1st hand experience and have done research it is right to listen to the alarm bells going off.

If we can help with the doctor or school, keep asking questions

Mw

[frieze]

Thanks so much for your feedback! I have often wondered if I am truly celiac disease, or just have a gluten intolerance-either way, I still feel horrible when I consume it, so an actual diagnosis is not that important to me. Like you, I experienced the grumpies, and the brain fog was horrible at times-I once got to work late (I'm a teacher, very regular schedule) and was shocked to find the building principal in my classroom with all of my students. It had to be explained to me that I was late, and even then, it still didn't register-I kept looking at my watch and the clock, completely not comprehending what had happened. I get up at 5:15, leave the house at 6:45, arrive at school at 7:10 every single day...and yet that morning, I went blank. Awful feeling, to say the least.

 

Although a diagnosis isn't necessary for me, it definitely is for my son-without it, I doubt his school will be able to make dietary accomodations for him. We also just signed off on an IEP (Individual Education Plan) for him that allows his teacher to send him to the Special Education room when he is being disruptive-the team at his school has also clearly stated that if there's no improvement in the near future, he will most likely be designated as primarily Special Ed and removed from his mainstream classroom alltogether. I believe a diagnosis would prevent that from happening, as the cause would be considered environmental and not behavioral.

 

There is SO much information on this site, but I've already begun to collect information to arm myself with for my son's upcoming appointment. The past few years have been so frustrating, we just want a healthy family! Thanks for the support!

remember that his sl stature may also be a symptom.  If Tricare won't test, you may need to go outside, and pay out of pocket.