Serious Behavioral Issues

[millersinkenya]

I am not sure where to even start. My son, almost 4 years old, is dx celiac as of August this year. Ever since he was young, we have had so many issues with his health and his behavior. He is so intense, screams or hours, hits, kicks, etc. He can be so happy one minute and then pissed off for the littlest things. After we got the diagnosis, we immediately went gluten-free. After two days, he was a new child. He was happy, so sweet, thoughtful, did not get mad at hardly anything... was a normal kid. This lasted for almost three weeks. Then he got accidentally glutened. Since the middle of September, we have really been struggling again with his behavior. I think he is VERY sensitive to gluten since cutting it out, and I am not sure what else. I don't know what to do with him. Honestly, I wish I could have him put in the hospital and given something (I don't even know what) for nutrition that is non-allergenic and let his body just clear out. I know it sounds harsh, but how do you take a four year old off of EVERYTHING and slowly add stuff in and see the reactions they are causing? How do you find out what they are sensitive to without doing something so drastic as to cut out all foods for a while and let them clear out? I don't know if it is gluten from somewhere or milk or soy, etc. I am just so lost and tired with it. I am worried that if it is not his diet, then maybe he has some serious issues that we need to address other than by diet. But, I am a big believer that our diets have so much to do with our health. The kicker is that we live in Kenya and we do not have access to many things here.

If you have had a toddler with behavioral issues, how have you tried to see the connection with that and food?

[Di2011]

Has your toddler been formally diagnosed or do you suspect any other specific allergies, intolerances, behavioural issues, conditions etc?

Has he been tested for vitamin deficiencies?

Does he have other people (carers-friends,family,babysitters, nanny, etc) that you leave him with?

Are his Celiac symptoms only behaviour or are there others you can identify? Any other symptoms that you haven't mentioned (but aren't necessarily celiac related)?

[millersinkenya]

Has your toddler been formally diagnosed or do you suspect any other specific allergies, intolerances, behavioural issues, conditions etc?

Has he been tested for vitamin deficiencies?

Does he have other people (carers-friends,family,babysitters, nanny, etc) that you leave him with?

Are his Celiac symptoms only behaviour or are there others you can identify? Any other symptoms that you haven't mentioned (but aren't necessarily celiac related)?

Yes, he was diagnosed via biopsy. I do suspect that there is some intolerance to something... all RAST have been negative. We have not done a skin prick test. He has NOT been tested for any deficiencies. He goes to preschool each day. His teacher has celiac as well, so she is hypersensitive to his needs which is a huge blessing. He does have times at school, recess, etc., when she is not there but there are other teachers around who are aware of his celiac diagnosis. Our househelper is here with him some, but the house is gluten-free so she can not give him anything that he can't have. He does get diarrhea, migraines, sleep disturbances, etc. when glutened. He is extremely verbal and always has been. He is just so intense in all of his behaviors- even when he watches a tv show, the tv is loud. everything just seems to be so intense... like, when he was little and even now, time outs do not work. he will scream and cry and bang the door for HOURS. I am not even kidding. He will not give up fighting, everything is a fight, and he doesn't even learn why he was in time out in the first place because of his intensity surrounding the events. But, when gluten free (those 3 weeks) he was a great kids, never in trouble, never fighting about anything, very compliant and happy. I am just so overwhelmed with trying to figure out what the trigger is. There is a history of bipolar in my husbands family, but i do not believe that bipolar is a childhood disorder at this age... I really have this strong feeling that it is his food. But I dont know what. Oh, also, he is a very heavy wetter. He either pees the bed or goes through 2-3 diapers per night. Day time trained since he was 2 years old. Does that help at all?

[Di2011]

What makes you think or suspect some other intolerance?

Is it even remotely possible that your househelp feel sorry for him because he doesn't get treats? Do they wash hands etc when they get to your house? If they are live-in do they have their own supply? Take your son to markets?((I hate even thinking this but you must consider it. My mum is a grandmother and mother in half denial))

Autism is another thing you should read lots about especially its connections to diet etc.

Open Original Shared Link ((If the medical / latin is too much just do a "find/search" (CTL F) for 'conclude'. Recommend you read the intro/abstract/conclusions/recommendations of any of the medical/research reporting))

Don't be scared of "autism". It is a whole spectrum "disorder" ((I HATE this word)) and I have met/known some of the most amazing families where diet/discipline and good support mean some kids will grow up to be barely described as minor and functional OCD types. Autistic kids are some of the most sensitive (emotionally) and brilliant (intellectually) kids I've ever met.

Only you really know how your childs behaviour presents itself. It doesn't sound like ADD/ADHD or other typical behaviour disorders from my ( not being professional) experience.

Okay getting to be a long post now so hope I might help a bit more...

I have been mostly (mistakes/learning etc) gluten-free since June this year (with DH undiagnosed but another long story so will skip that for now -- since my last shift working at a bakery (June 2011)). I still itch every day. Pretty much all day. I wake up and itch. But I'm glad I didn't spend another night of being so itchy that I itched all night (that lasted about 5-6weeks). Itching has reduced to the point where I can see most (about 80%) healing and some of the itching is because of the healing. If I sent you pictures of my skin even now you'd be shocked. Without gluten-free I'd be a roaring mess by now. I spent a couple of months sleeping (trying to) with cold packs over as much as my body (or the worst of it) as possible. I am barely sane some days

So stick with gluten-free. It might take a significant time. I am now at about 5-6 months and the first half of that was a lot lot lot of mistakes. Give it extra time when it comes to children and behaviour. But be disciplined. Read, research and read and research and ask questions and read some more. Have lots and lots of hugs (even when the offer is rejected)

[Di2011]

Some more for you to read if you haven't already:

Google gluten child behaviour

[domesticactivist]

You might look into the GAPS diet. It is gluten free and aimed at fixing behaviour and psychological problems through restored gut health. The book is well worth reading and I have a resources page, guide to starting the diet, and an outline of the first six stages on the blog linked from my profile. You start with just homemade soups and slowly add in each ingredient and new food. It has worked wonders for our family.

Aside from that - are you sure you are 100 percent gluten free? I have a post on the blog linked from my profile about going 100 percent gluten free that might give you ideas of things to check.

[pricklypear1971]

Milk/casein is the most common alternate food intolerance associated with gluten intolerance, it seems.

Try cutting out milk for a few weeks and see how it goes.

[Takala]

Start keeping a food diary and write down everything that your child eats. And at the bottom of each page day, what sort of day he had. This way you will start to see patterns.

The two most common "problem" foods that run together with this is soy, and then dairy cow milk products.

When making a change, it's easier to change one thing at a time. So if you're adding a new food, try to make that the only new food of the day.

Most meat, fish, eggs, fruit, and vegetables are likely going to be just fine. Rice is going to likely be okay. Olive oil and coconut oil tend to be less allergenic than other things. If he's okay with peanut butter and rice, you can pretty much cope with the rest of it.

Each meal should be a protein, fruit, vegetable, and some sort of starch or carb. Since he's a kid he'll need more carbohydrate than some of us adults who have this. and are pretty low carb and higher protein and fat, but don't be afraid of feeding him some good fats, because that can be satiating and calming.

Starches/carbs instead of bread(s) can be potatoes, beans, bananas, besides rice.

For "milk" during the test phase, if you cannot find a boxed milk substitute there, such as nut milks, you can try to use canned coconut milk.

Much African cuisine is naturally gluten free anyway. Corn/maize, potatoes, beans, tapioca/cassava, all gluten free if not cross contaminated. Sorghum, sweet potatoes, etc. So is Indian.

The other thing that tends to set off children that is not exactly celiac or auto immune related, is artificial coloring aka food dyes, especially the color red. Is he eating anything with red dye in it ? Try getting rid of it and see what happens.

[dilettantesteph]

I had serious behavioral issues with both my celiac children. I didn't find out that it was gluten for years until we finally got diagnoses. It must be very hard with a child so young. It is common to become more sensitive to gluten as time goes on. You may need to take more steps to eliminate cross contamination. Do you have a gluten free household? Do you avoid products processed on lines which also process wheat? Those would be the first steps to take. You could also check things like toiletries, and other things that might be going into his mouth. Do you have a pet? Pet food can be a problem.

If those steps don't work you could explore super sensitivity or other possible issues.

[sariesue]

There is a history of bipolar in my husbands family, but i do not believe that bipolar is a childhood disorder at this age...

Have you had him tested for psychiatric problems includeing bp, autism, ADD, pervasive developmental disorders..... If he has some other condition in addition to celiac he needs to be treated. I know with bipolar disorder there has been an established theory called the kindling effect. It is that each untreated episode an individual has the worse the episodes become and the harder they are to control with medications. While bipolar disorder usually starts in young adulthood there is child onset bipolar disorder.

[AMom2010]

When you said all his behaviors are intense, like the loud tv, it made me think about sensory processing disorder. An occupational therapist would be the professional to take him to to have him evaluated and treated for this condition. I believe early intervention ( before school starts) can be critical to success or failure in an educational environment. Kids with SPD are often overstimulated in a classroom setting and treatment is very important. I really hope you have access to programs that can help!

[tarnalberry]

SPD is also what came to my mind when I read the post. Or some level of sensory integration issue.

[Takala]

Have you had him tested for psychiatric problems includeing bp, autism, ADD, pervasive developmental disorders..... If he has some other condition in addition to celiac he needs to be treated. I know with bipolar disorder there has been an established theory called the kindling effect. It is that each untreated episode an individual has the worse the episodes become and the harder they are to control with medications. While bipolar disorder usually starts in young adulthood there is child onset bipolar disorder.

Oh, for the love of ****, they are in KENYA, AFRICA, where children are still, miraculously, mostly NOT in need of pharmaceutical mood altering intervention to get thru childhood ! Did you know that toddlers and pre schoolers tend to have temper tantrums when they are are tired and not feeling well, and this is normal ?

"Bipolar childhood disorder" = fraud, google it, .... you have got to be out of your depth, here. The kid needs his diet cleaned up, not to be anesthetized from it.

Open Original Shared Link

An inquiry by Senator Charles E. Grassley of Iowa revealed in 2008 that Dr. Biederman earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007, but failed to report all but about $200,000 of this income to university officials. Josephine Johnston, a research scholar at the Hastings Center, a bioethics research institute, said the documents

[sariesue]

Oh, for the love of ****, they are in KENYA, AFRICA, where children are still, miraculously, mostly NOT in need of pharmaceutical mood altering intervention to get thru childhood ! Did you know that toddlers and pre schoolers tend to have temper tantrums when they are are tired and not feeling well, and this is normal ?

"Bipolar childhood disorder" = fraud, google it, .... you have got to be out of your depth, here. The kid needs his diet cleaned up, not to be anesthetized from it.

Open Original Shared Link

I advocated testing, not medications. Yes I mentioned that medications are used and if too many episodes occur it can be harder to find effective medications in bipolar disorder because the OP mentioned a family history of bipolar disorder. But, there are many treatments that are not medications, however you would need a diagnosis in order to receive them.

[millersinkenya]

Thanks, everyone!

I guess I just really need help with cutting more things out of his diet. I assumed I would have to cut everything out and add it all back in slowly- impossible for a four year old to understand.

I think I will start with milk. We don't have anything with soy, so I think that is already cut out. I will go back and read all of the labels again. Most things we have to make from scratch here, so that is one good (but hard!) thing about it all.

I definitely will keep an eye on the bipolar thing, but I just don't know how much I believe that there is onset in childhood. Obviously, I have thought about the tendencies that he has, but I would not ever seek a bipolar disorder label for a child. There are many other things I would do first.

I have wondered about the autism spectrum. I am a special education teacher, and this has crossed my mind a lot, actually. I know an autism specialist here in Kenya, so I may try to meet with her and get her opinions. I don't know about the loudness factor on tv and such, but I am not sure that I think it is sensory processing. Although he is quirky with how he likes his clothes, etc., I know MANY kiddos that are this way and do not have SPD. I am this way with tags and such... who likes to be uncomfortable? Not me!

I will follow up with the behavioral issues with his doctor. I just want to get some ideas as to food, how and what and when to cut thing out and how to tell if they effect him or not. I think the food dyes need to go, for sure. Any other suggestions?

[kaysmom]

You mentioned that he is loud, and the tv is loud. Does he ask you to repeat things often, or do u need to speak loudly to him? Hearing problems can affect behavior. They cant completely hear and then may get aggrivated quickly. You said he is very verbal which is good, but there can still be a deficit. Have him screened. Sounds like you are already doing a great job with his diet needs.

[millersinkenya]

You mentioned that he is loud, and the tv is loud. Does he ask you to repeat things often, or do u need to speak loudly to him? Hearing problems can affect behavior. They cant completely hear and then may get aggrivated quickly. You said he is very verbal which is good, but there can still be a deficit. Have him screened. Sounds like you are already doing a great job with his diet needs.

Thanks, Kaysmom. We have had him screened. I think he was quite a bit younger than he is now... do I have to have it done every so often? I don't think he has a problem hearing, but I guess I wouldn't know unless we had him tested. Thanks for the encouragement

[mommyto2kids]

My son reacts to red dye and chocolate so eliminate those. Also it could be the age. For years I thought my daughter was special needs because she was so mean and strong willed. It was just her. Now she is six and better.

[T.H.]

Oh, goodness, I SO feel for you! That sounds SO much like our son. I'm just sitting here thinking of the holes in my son's bedroom door from when he'd be having a screaming fit and attacking the door - for hours, just like you said! When he was smaller, he'd have one of his screaming rage-tantrums until he was exhausted, fall asleep, and on the worst days, he'd wake back up and keep tantruming!

He had huge issues with learning, like his brain just couldn't retain memory properly, until we eliminated gluten (at age 8). He couldn't even remember all the names of the letters, and then after going gluten free, he went from that to reading in less than a year. HUGE difference.

My daughter (also a celiac) has sensory issues when she's glutened (I do, too!). Sounds are too loud, touch can be more painful, taste and smell are unpleasant and distracting. She ends up having anxiety and OCD issues (especially with clothes and planning) when she is exposed to gluten and a few of her 'bad' foods, too.

My kids would have been poster kids for behavioral disorders, but it's ALL been food, we've discovered. I've been shocked at what different kids we have, once we found a diet that wasn't hurting them any more. It's made me a big advocate for doctors to check a child's diet before they ever make a behavioral disorder diagnosis.

Considering that you have had some correlation between diet change and behavior, it sounds like a food cause for at least some of the issues are likely, yeah?

When we went gluten free, my son got a little better, but there was obviously something still 'wrong,' so this is what we did.

1. Got really careful with the gluten-free food prep. Some 'whole' foods, like grains and plain nuts, turned out to be contaminated from processing and we had to find new sources.

2. Started a food journal, where I wrote down time eaten, amount of food eaten, EVERY ingredient in the food, and then behavior and sleep and the timing for that. And I would put down every behavior you're concerned about. OCD, sensory issues, tantrums, whatever. At least that way, you can see what diet might affect, and what is unaffected by diet. Re: the ingredients - Some foods have some weird unexpected ingredients that you'll want to watch out for. For example, salt will often have anti-caking agents added, powdered sugar has a starch added, baking powder has a few different ingredients. I don't know what labeling laws are in Kenya, so you may have to do some research to find out all the ingredients. If you don't know what's getting your itty-bitty, I'd write it ALL down.

3. Took the kids off the 8 major allergens (dairy, wheat, soy, tree nuts, peanuts, fish, shellfish, and eggs).

4. After a couple weeks, I started looking for correlations in the food journal. Some of the behaviors with our son show up 24 hours after ingestion, and some people have reactions delayed up to 48 hours.

5. Still keeping the journal, we eliminated any suspected foods. And when our son was acting like he was healthy and not reacting, we slowly started adding in foods, also still keeping the food journal. One ingredient at a time, usually one new food a week, depending on success. On adding foods back in, we noticed some foods didn't show a reaction until he'd had it a few days in a row, so we started having day 1 with just a little of the food, seeing how he did. Then if that went well, he could pig out on the food the next day, and we'd make sure to have a lot over the next few days, to see how he did.

When we did this, we tried to be SUPER careful to avoid ALL of the allergens and suspected foods, so I looked on allergy sites to find hidden sources and alternate ingredient names for any of the 8 major allergens. Avoiding all 8 pretty much ensured that we didn't get any food dyes or artificial preservatives or additives because we had to make everything from scratch.

This helped immensely. I noticed a difference in behavior within days. Between both my kids, dairy, corn, soy, and eggs all turned out to be issues, some more than others. The corn wouldn't have shown up without this diet, because like gluten, it's in just about everything processed, out in the USA. Not sure what the most commonly used starch is for processed food in Kenya - tapioca/cassava, perhaps?

With my daughter, over the past year we've found out that she has trouble with almost all grains, to a certain extent. Not sure if it's contamination or the grains themselves, but we're trying to figure that out.

Another thing to consider: your little one might be an oat sensitive celiac (Avenin sensitive enteropathy is what it's called). A small percentage of celiacs have this issue, although it's not celiac specific. If your little one IS oat sensitive, even gluten-free oats can make him ill, and unfortunately a lot of gluten-free food can be contaminated with gluten-free oats because the same care is not taken to avoid cc as there is with wheat, rye, and barley.

Did you by any chance add in a new gluten-free product or food when the behavior issues cropped up again? If you did, might be worth seeing if that new food came into contact with gluten-free oats. Or possibly drop products from that company for a while and see if it helps.

Or maybe see if products with gluten-free oats are being offered at the preschool, perhaps?

Wishing you good luck!