Help! Behavioral Problems In A Celiac Kid

[charliesmom]

My 4.5 year old is 3 months in the gluten-free diet. His case was extremely severe and we struggled with bad anemia for a year before diagnosis. 2 weeks ago i was nearly certain he was glutened. that next week he was awful at school. the only other time the teacher said she saw that behavior was when we started the gluten-free diet. Then, he was ok for a week. And then, we have this week. On monday he was fine. On tuesday he had an EPIC bad day that resulted in a 3 page note of wrongdoings from his teacher. I asked the teacher if it was normal bad behavior typical of 4 year olds and she emphatically said NO - basically his tantrums - he is basically won't communicate during them and lays on the ground, usually repeating whatever it was that he wanted and was told no.

It is obvious that they think something is wrong with him - like aspergers or ADHD or something.

- we never had these problems before - this is a sudden onset problem

- we have some tantrums at home but nothing like what they say at school

- he is in full day montessori school

- he is showing signs of anxiety again - he did this before he went gluten-free and stopped but is doing it again

So here are my questions:

- could this be from glutening?

- what types of professionals should we visit? we scheduled an appointment with an OT and a therapist/social worker

- could there be a serious underlying issue that was quashed by his anemia and illness that is now coming out?

Please give me thoughts and advice. We are desperate.

[mushroom]

Have you checked the school environment and made sure that he is not getting gluten there? This is a common source of cross-contamination. I do not know what kinds of activities they get up to in Montessori at that age, but that is where I would start.

[charliesmom]

  On 4/15/2011 at 3:19 AM, mushroom said:

Have you checked the school environment and made sure that he is not getting gluten there? This is a common source of cross-contamination. I do not know what kinds of activities they get up to in Montessori at that age, but that is where I would start.

I did review the room when we were first diagnosed and checked all the supplies. I looked up anything questionable. They don't use food products and the teacher has 99% fruits and vegetables as snacks there. I double checked to make sure Monday wasn't a gluten snack day - thinking cross contamination - and she said it was oranges. I asked if there were any new projects or art things and she said no.

We are totally stumped. Obviously he could have been cross contaminated. He eats on a tray at lunch (disposable) and the kids all get hand sanitizer after lunch to try to minimize any crumbs brought in the classroom. Of course he could have had something happen with either of those ways.

Our Sunday night dinner included these smiley face mashed potatoes that we were suspect of (he complained of a tummy ache the first time we had them) but the company assured us of not even cross contamination and it would seem weird for there to be so long for glutening symptoms to occur. Monday night was our typical taco night and we did not change any brands. We keep a gluten free house although DH and I did order a pizza after the kids went to bed on Sunday so we could have left a crumb somewhere too.

He has not complained of a tummy ache in a long time - not even after our first incident at a birthday party where I was pretty sure he was exposed. I am wondering if he does not recognize or have those types of symptoms.

[mushroom]

Hand sanitizer, while admirable for germs, does nothing for gluten unfortunately. For this you need soap and water. If kids are playing with blocks or bricks (or whatever they are manipulating that anyone else touches) there is always potential for gluten residual. I am not saying you should make your child a bubble boy, but just sayin'. How is lunch handled at the school? Do the kids wash their hands after lunch? Does your son wash his hands before he eats? (not sanitizer!)

Has he ever shown any problems with corn before? A lot of we gluten sensitives are also sensitive to corn. Just throwing out ideas here.

[rosetapper23]

This might seem like an off-the-wall comment, but I noticed that you mentioned iron anemia. Is it being treated with oral iron? If so, did you recently change the brand? I only mention this because when I was trying to overcome the anemia I'd had since age 11 when my celiac was triggered (though, I didn't get diagnosed 'til I was 47), I tried a brand that made me go nearly insane. I actually had a compulsion to beat my head and fists against the wall. This is probably NOT what's causing your son's behavioral problems, but, just in case, I thought I should mention this.

Also, I think it's possible that your son may have other food sensitivities that are causing him to act out. You might try the obvious ones first, such as soy, dairy, and oats. Also, don't forget that many of us with celiac are also very sensitive to iodine, and it can be found in iodized salt, seafood, dairy, and vegetables (such as asparagus).

[charliesmom]

The theory with the hand sanitizer is to knock the crumbs off the other kids hands to minimize cross contamination risk. It was the best I could get the school to agree to for after lunch and I figured it had to be better than nothing and the dietician seemed to think it would be acceptable.

He eats food from home on a disposable tray and washes hands before eating, sanitizer after with the rest of the class.

As for Iron supplements - he is still on them. We have been using the same brand for over a year. He took massive amounts and it was recently decreased because he is no longer anemic! This was exciting news for us. They are just doing a supplement for 6 more weeks to help him along because his ferritin is still borderline (but finally normal!) but his CBC was off - but that could be the massive growth spurt he is having. He grew more than 4 inches in 3 months.

As for other food sensitivities.... the thought makes me want to bang my head. I realize this is where we are probably heading and it makes me want to cry - it is so overwhelming. I guess we should start with a food diary?

Do you guys think this could be gluten related?

[CeliacMom2008]

Just to give you more to contemplate...my son's symptoms from glutening don't show up for 3 days...it's a pain because you don't know what triggered it, but we had 2 episodes where we knew exactly when he ingested the gluten and it helped us figure out glutenings for us are a week long progress. He goes through extremem fatigue, emotional mayhem, then cramps and the big D.

Gook luck!!

[charliesmom]

  On 4/15/2011 at 7:53 PM, CeliacMom2008 said:

Just to give you more to contemplate...my son's symptoms from glutening don't show up for 3 days...it's a pain because you don't know what triggered it, but we had 2 episodes where we knew exactly when he ingested the gluten and it helped us figure out glutenings for us are a week long progress. He goes through extremem fatigue, emotional mayhem, then cramps and the big D.

Gook luck!!

Great info - thanks! I am definitely suspected Sunday night again... He was acting really weird in the middle of the night too on Sunday. He came into our bed at 4 am (unheard of generally) and was thrashing around banging his head etc. DH and I were concerned.

[Cara in Boston]

The tantrums you describe sound EXACTLY like the shocking behavior we suddenly saw in our 5 year old last fall. That is what (along with a stomach ache) brought us to the doctor in the first place. He has no other symptoms so I imagine that if he gets glutened that will be our first clue. He's only been gluten-free for about a week so I don't yet know . . .

Cara

[charliesmom]

  On 4/15/2011 at 8:53 PM, Cara in Boston said:

The tantrums you describe sound EXACTLY like the shocking behavior we suddenly saw in our 5 year old last fall. That is what (along with a stomach ache) brought us to the doctor in the first place. He has no other symptoms so I imagine that if he gets glutened that will be our first clue. He's only been gluten-free for about a week so I don't yet know . . .

Cara

Some of the huge weight on my chest just lifted. Thank you for sharing.

[charliesmom]

Well 2 days have gone by and none of these insane tantrums. He is still showing anxiety signs though. But I have kept him out of school to be in a better environment. He has an OT evaluation on Wednesday so that will be interesting. My husband is convinced it is gluten related. I am feeling like it is probably gluten but reserving judgment so i am not blind sided at his evaluation.

[nmlove]

Just a thought. Could you get the school to agree to wipes instead of hand sanitizer? Too much hand sanitizer isn't good anyway.

[reklew6]

  On 4/18/2011 at 1:56 AM, nmlove said:

Just a thought. Could you get the school to agree to wipes instead of hand sanitizer? Too much hand sanitizer isn't good anyway.

I just tried to post for the first time with something similar. Our 8 year old boy diagnosed with celiac three years ago. Also "diagnosed" ADHD. However, blood work showed high adrenaline and low serotonin. Trying to understand if the celiac diet with have him on might not be best for his body.... he eats gluten-free bread, gluten-free pasta, white rice and plenty of meat. Lots of fruit, but not as much veggies. Trying not to medicate as our tests of meds did not go well AT ALL. I keep coming back to diet being part of the issue/solution, but have to believe I'm not alone in this.

I saw the post about corn...which reminded me about the refined sugars info I just read about. Wonder if there is a connection with refined sugars....

Sorry I'm not much help. I DO agree with the sensation of wanting to bang your head against a wall. I need the parent manual for this one!

[charliesmom]

  On 4/20/2011 at 6:04 PM, reklew6 said:

I just tried to post for the first time with something similar. Our 8 year old boy diagnosed with celiac three years ago. Also "diagnosed" ADHD. However, blood work showed high adrenaline and low serotonin. Trying to understand if the celiac diet with have him on might not be best for his body.... he eats gluten-free bread, gluten-free pasta, white rice and plenty of meat. Lots of fruit, but not as much veggies. Trying not to medicate as our tests of meds did not go well AT ALL. I keep coming back to diet being part of the issue/solution, but have to believe I'm not alone in this.

I saw the post about corn...which reminded me about the refined sugars info I just read about. Wonder if there is a connection with refined sugars....

Sorry I'm not much help. I DO agree with the sensation of wanting to bang your head against a wall. I need the parent manual for this one!

Man, I hear you - my son really needs a manual. And the food things -it's so hard - he's 4! It's so hard to tell.

We had his evaluation.... he's been fine the last couple of days. I REALLY think his behavior issues were diet related. The OT thinks he might have a minor sensory modulation issue (which gets confused with ADHD all time - worth a look) but she thinks mostly that he's smart and trying to get his own way.

I am really relieved. And we really know diet and behavioral problems are totally related in our house.

[celiac-mommy]

2 things I noticed that I had to have changed when my son was in preschool-the handwashing AFTER lunch is sooooo beyond important! My son was getting sick daily from kids going from the food tables to the toys. Gluten was everywhere in that room!!! Once the handwashing was implemented after meals and snacks, the glutening stopped. Also, I had to buy the school all new cutting boards for ONLY fruits and veggies. Even though the cutting boards were sent thru the sanitizer after each use, they were cutting bread and bagels on the same boards and the crumbs were getting pushed into the knife grooves and then glutening my son

[Deana Huneke]

Although in theory hand sanitizer sounds good for pushing off the crumbs, it is only dropping all the crumbs into the classroom wherever they do their hand sanitizer. Ask your doctor or dietician for a letter of medical necessity for the entire class to wash their hands. My daughters letter of medical necessity states that the entire class mush wash their hands with gluten-free soap and water upon entering the classroom at the begininng of the day, upon completion of art, immediately after lunch and anytime the classroom uses a product they are unsure of. My daughter is also unable to eat in the cafeteria due to cross contamination and an aide sits with her at lunch. Although my daughter has a g tube and is fed through it through part of the school day and multiple food allergies (dairy, soy, beef, wheat and cherries) as well as allergies to adhesives, barium, bee stings and latex, the biggest challenge is still gluten and wheat. She is being given a personal aide to start kindergarten as she will be in a regular classroom with only one teacher. Your son qualifies for a 504 through the school and the school must follow the what is set forth by your doctor.

[weluvgators]

It is good to hear that he seems to be feeling better. Behavior changes are one of the symptoms that we monitor for gluten exposures (anxiety is particularly telling for us that gluten is a top suspect). We also had a huge run in with crazy antics for one of our kids that seemed to be rooted in hand sanitizer exposure. It was awful, and she was super crazy from it. We have pushed our school to wash hands with soap and water, and they do it at the start of the day and after lunch. This year we were able to eliminate the daily snack, as that was a huge problem for our children. Their classrooms are primarily gluten free, and the younger one is supposed to be dedicated gluten free with any gluten containing items to be consumed in the cafeteria - execution is not perfected here yet, but we continue to emphasize this medical need for our child.

Where are the other kids eating their lunches? We have also had to pull our kids out of the cafeteria to see improved health (chronic symptoms developed for both of them with that daily exposure). We keep a dedicated cutting board and knife in each of our children's classrooms (they are stored in a clear, plastic bin that we have labeled for each of them with snacks for unexpected events). We also have a dedicated popcorn bowl in the younger one's classroom.

I would definitely suspect the potatoes and the pizza in the house on Sunday. How thoroughly did you and DH wash up after eating the pizza? We have serious protocols for cleaning dad when he comes back in the house and has been eating gluten (no gluten is allowed in our home). The Italian buffet he indulged in was terrible, and it is hard to make sure you get it all gone.

Good luck with it all! I know how exhausting and crazy this stuff can be. And we have found some really great help working with an occupational therapist for one of our children. It is also helping to evaluate and document when school has a notable affect on her abilities! I think OT/PT involvement can be especially important for children that struggle with gluten ataxia issues.