I'm Wondering If My 10 Year Old's 10 Years Of Problems Are Related To His Diet?

[azmom3]

My 22 month old recently tested positive for celiac through bloodwork, so I"ve been researching and reading like crazy and posting questions for all of you. I also know the chances of his brother and sister or us have is increased, right? Now I'm wondering if our 10 year old might also have it.....here's his story. I'm not sure how many of these symptoms are related to celiac or something else, but I'll list out what things we've seen with him since birth.

-induced 6 days early (told he was going to be very large) - he weighed a perfect 7lbs 9 oz.

-jaundice - went away quickly with just sunlight from home

-eyes - two different doctors mentioned that one of his eyes seemed "lazy" -this also went away over time

-breastfeed exclusively for 10 days, then supplemented until 2 months, then stopped. He cried almost 24/7, stopping only to nurse/take a bottle for a very short time, then would scream again. There were bouts that lasted 6 hours straight, then he'd sleep for 10-15 minutes and start up again. When we would burp him, he projectile vomited almost every single time. I'm not joking...we used bath towels over our shoulders and couldn't be near furniture or anything that could be damaged. He seemed to never sleep (I've had two other babies so I know it's not the norm now). He would take 10 minute cat-naps all day and night. I learned to take catnaps with him as I just could not function anymore without the sleep. That's one of the reasons I started supplementing at 10 days...so my husband could give him a bottle and let me get 2 hours consecutive sleep while he consoled him. Also, I was questioning whether my milk came in or for whatever reason he wasn't getting nourishment from me. He saw probably 5-6 doctors and we had him in the office about 3 times per week over his first few months of life. They told me he had colic. One doctor had me give him rice cereal through a bottle at about 2 months old (I didn't know any better to even question this. I was willing to try anything to help him and figured the doctors knew better than I did). We switched formulas many times, finally settling on Nutramigen. He was drinking an 8 oz. bottle every 2 hours and screaming as if he wanted more. It seemed consoled when he would drink more, but then the screaming would continue. We tried binkies, and they would help for 30 seconds, then he'd spit them out and scream more. I think I cried as much as he did during this time. The colicky type screaming episodes stopped around 4 months.

-From 2 months to 15 months, he had chronic ear infections. Every time we went for a check up after antibiotics were finished to make sure the infection went away, we were told it was back..almost always in both ears. Finally had tubes put in at 15 months and didn't have another ear infection until 5 years old.

-Had tonsils, adnoids, and tubes removed at 4 1/2 years old (he was born with very large tonsils that were interfering with his sleep...maybe this was part of the sleep problem he was having since birth??) Prior to this, he had only slept through the night maybe once or twice. Since having them removed, he always sleeps through the night...WHAT A RELIEF FOR US!

-Around 3 years old, he starting having severe cramps in his legs, mostlly the calf area. He would scream bloody murder. We'd be driving and I'd have to pull over, take him out of his carseat and hold him until the pain would subside enough to put him back in. We went through numerous blood tests and other things trying to figure out what was wrong...was told it was growing pains. These symptoms went on and off for about 2 years.

-He was a chunky baby, average size by 2 1/2 or 3 and on the skinny side by age 4. He's 10 now and weighs 59 pounds and is average heighth. It was always written off as that's just his build. All the men on my side of the family are very thin. A little story here....he was at a friends house and his friend says "cool, you have six pack abs!" His mom then pointed out that those were his ribs!

-Around 5 years old, when he started kindergarten, we noticed behavioral problems. I blamed myself, thinking I'm a bad mom and why can't I control my child. Now, he's 10 and my husband and both agree that something just doesn't seem right and it's definitely out of the norm. He is a teacher's dream student, very well mannered, loves school, cooperative, etc., but at home, he is completely out of control more times than in control. One of my nieces had recently been diagnosed with bipolar and ODD. When I looked at the symptoms, the ODD describes our son perfectly. And it was the first time we could explain why he's great in some settings and not in others. He has virtually every symptom. He has "outbursts" as we refer to them as, along with a lot of anger over very small things. He will hit people and things on his way to his room after getting in trouble. Then, another time, he is just a perfectly sweet, happy boy. Have other people been diagnosed with ODD but find the symptoms improve from going gluten-free?

-Also, just in the past month or so, he started getting the extreme leg pain again. He seems very pale and tired all the time. He's never had an issue with the tiredness since he had his tonsils out 5 1/2 years ago.

-I'm taking him back to the doctor again, but figured I'd check here and see if anyone can shed any light on any of this stuff so maybe I know what things to press for with the doctor this time.

Thanks for reading my incredibly long post!

[lonewolf]

It certainly sounds possible. I'd ask the pediatrician to do some tests while he's still on gluten and then try the gluten-free diet no matter how the results come back. My 11 year old son has had some behavioral issues that went away when he went off gluten. We're doing a challenge right now and some of those behaviors are slowly creeping back in. We're going to do Enterolab when he gets back from camp since all his tests were "normal" and I really want to get to the bottom of this.

Good luck

[Fiddle-Faddle]

Wow. You have been through the wringer, haven't you

You might want to try a trial gluten-free, casein-free diet (if you're not already doing so) and see if it makes a difference. Arm yourself in advance with tried-and-true kid-successful recipes from people on this board who have already been through it and order some decent wheat-free bread on-line (there's a recent thread on mail-order breads that several people were just RAVING about).

There's a fantastic baking book by Annalise Roberts with a recipe for chocolate chip cookies that tastes as good as any homemade-from-scratch that I've ever made or tasted! If your kids can handle peanut butter, the easiest cookies in the world are made from 1 cup peanut butter, 1 cup sugar and 2 eggs--mix, drop, bake, watch them disappear.

If your kids are chicken nugget addicts, you can make them from scratch even if you're not a gourmet chef (I'm not!): raw chicken tenders, dip in cornstarch, dip in beaten egg, dip in Potato Buds (NOT potato flakes, they don't stick to the chick, they stick to the pan!), fry in oil, serve with ketchup. I do the same with fish-stick-sized slices of catfish or tilapia (any white fish will work), and the kdis call them chicken nuggets even though they are fish sticks. Go figure.

If your kids are Spongebob fanatics (I'm ashamed to admit that mine are), you can have them assemble a Krabby Patty, using fishsticks for the patty and gluten-free bread or gluten-free English muffins sliced in half for the buns. (Your kids can probably tell you exactly what condiments Sbob uses and in what order!)

One thing struck me reading your post: your child may do well in school because of the Super-Structure there--everything in his school day is SCHEDULED, andhe knows exactly what to expect and when to expect it. Many kids (not all) absolutely need this at home, too--my oldest son is like that. He needs to know in advance what he will be doing for the whole day. He doesn't do well with surprises and sudden changes or transitions.

This is common with kids with ADD, ADHD, ASD--but doesn't necessarily mean a diagnosis is in order here. I think there are probably plenty of people who are like this who are perfectly normal!

Finally, if you are on this board seeking answers, that tells me that you are a GREAT mother, one who cares enough to look for answers.

[azmom3]

Wow. You have been through the wringer, haven't you

You might want to try a trial gluten-free, casein-free diet (if you're not already doing so) and see if it makes a difference. Arm yourself in advance with tried-and-true kid-successful recipes from people on this board who have already been through it and order some decent wheat-free bread on-line (there's a recent thread on mail-order breads that several people were just RAVING about).

There's a fantastic baking book by Annalise Roberts with a recipe for chocolate chip cookies that tastes as good as any homemade-from-scratch that I've ever made or tasted! If your kids can handle peanut butter, the easiest cookies in the world are made from 1 cup peanut butter, 1 cup sugar and 2 eggs--mix, drop, bake, watch them disappear.

If your kids are chicken nugget addicts, you can make them from scratch even if you're not a gourmet chef (I'm not!): raw chicken tenders, dip in cornstarch, dip in beaten egg, dip in Potato Buds (NOT potato flakes, they don't stick to the chick, they stick to the pan!), fry in oil, serve with ketchup. I do the same with fish-stick-sized slices of catfish or tilapia (any white fish will work), and the kdis call them chicken nuggets even though they are fish sticks. Go figure.

If your kids are Spongebob fanatics (I'm ashamed to admit that mine are), you can have them assemble a Krabby Patty, using fishsticks for the patty and gluten-free bread or gluten-free English muffins sliced in half for the buns. (Your kids can probably tell you exactly what condiments Sbob uses and in what order!)

One thing struck me reading your post: your child may do well in school because of the Super-Structure there--everything in his school day is SCHEDULED, andhe knows exactly what to expect and when to expect it. Many kids (not all) absolutely need this at home, too--my oldest son is like that. He needs to know in advance what he will be doing for the whole day. He doesn't do well with surprises and sudden changes or transitions.

This is common with kids with ADD, ADHD, ASD--but doesn't necessarily mean a diagnosis is in order here. I think there are probably plenty of people who are like this who are perfectly normal!

Finally, if you are on this board seeking answers, that tells me that you are a GREAT mother, one who cares enough to look for answers.

Wow, thank you for all the great advice. My son LOVES peanut butter, he would be devastated if he couldn't have it ever again. He literally eats it every single day, sometimes just eating a scoop of it for a quick snack.

And the other things are all things he'll eat too, so this shouldn't be as hard as it seems initially. What about any version of mac n cheese? That's his other favorite. I never thought about the structured schedule thing either, so that should be easy enough to do. And finally, thanks for the wonderful compliment at the end!

[penguin]

And the other things are all things he'll eat too, so this shouldn't be as hard as it seems initially. What about any version of mac n cheese? That's his other favorite.

I also add a bit of vanilla to the PB cookies, that's just me though. McCormick and Tone's vanilla are both gluten-free.

The best pasta out there, IMO, is Tinkyada, and they make elbows. Also, the cheese powder from kraft dinner is gluten-free, and they sell it in a skinny blue can, usually by the velveeta or parmesan. Sometimes by the popcorn. I think you use about 1/4c. of it for mac and cheese, along with 1/4 c butter and 1/4 c milk, like normal.

Velveeta is also gluten-free if you want to do mac and cheese that way.

With tinkyada pasta, you really can't tell the difference, it's just like wheat pasta.

[queenofhearts]

I've made homemade mac & cheese using Tinkyada pasta & gluten-free flour blend to make the roux, but there is also a post I've seen that tells how to make "Kraft" style m&c with cheese powder meant for popcorn. And Amy's makes a frozen gluten-free mac & cheese.

Good luck with your sons! They're lucky kids. I wish my mom had figured out my Celiac when I was their age!

Leah

p.s. Just saw your post, Chelsea-- on the ball as usual!

[azmom3]

I just can't believe how many people are willing to take the time to give advice/thoughts/support on this site. You guys have helped me so much in just a few days. I feel like I'm learning from everyone else's mistakes so I dont' make as many through trial and error on my own. And all the recipes are making me hungry...even gluten-free hungry (and I don't think I've ever gone a day in my life without gluten, so that's saying quite a bit!)

One other thing I forgot to ask in my original post....is it normal for symptoms to stop and almost start immediately with a different type of symptom, then that one stops and another symptom starts? That's how it seems like it's been with my 10 year old. He doesnt' seem to have too many things going on at once. If it is an intolerance to gluten, is it flare-ups coming in different forms?

[celiacgirls]

One of my daughters is diagnosed with ODD and depression. I believe this was caused by gluten and casein intolerance. She's been gluten-free/CF for about 3 months and the only slight problems we have had have been after accidentally eating casein.

[azmom3]

One of my daughters is diagnosed with ODD and depression. I believe this was caused by gluten and casein intolerance. She's been gluten-free/CF for about 3 months and the only slight problems we have had have been after accidentally eating casein.

First of all, thank you so much for your response! What do you think? Is ODD something she will always have (is it a real thing?) or are the symptoms of "ODD" really symptoms of gluten and/or casien intolerance and just labeled as ODD because they needed to put a name to the symptoms? Also, if you don't mind me asking, did your doctor bring this up to you based on her symptoms or did you have to press the doctor because you knew something just wasn't right?

I've been reading up on celiac so much lately and looking at all the related conditions/illnesses/diseases. I feel like I'm diagnosing my kids with stuff when the doctors can't. I'm wondering if I need to be adamant about them running certain tests and tell them exactly what I think they have. I also stumbled upon Asperger's syndrome and see a lot of his symptoms there. This is linked to celiac, too. Whether or not he tests positive I'm convinced to at least try the diet. Thanks again so much for the info and I wish your daughter a happy, healthy life from this point on!

[celiacgirls]

I think the ODD is a description of her behaviour. I think it was a result of her diet. She had some symptoms of depression like always being tired, losing interest in her activities, irritability but she really was diagnosed with that because we were looking for an underlying cause of the ODD. All of those symptoms could also be from the gluten intolerance.

My other daughter was first diagnosed with gluten intolerance by Enterolab. Then I tested myself and my older daughter. My older daughter's only symptom of gluten intolerance was the irritability. I was hoping it would cause an improvement in her behaviour but it seemed hard to believe. 3 months into it and she is a different child. She was never much trouble except at home but other people have noticed that she seems more relaxed and happier. It is amazing! (I hope I'm not jinxing myself here.) 3 months is too soon to say for sure that she is "cured" but it sure seems like it.

I hate to have to be my own doctor but I think you kind of have to. My younger daughter had slight symptoms of celiac her whole life and was tested multiple times with the blood tests. When I found out about Enterolab, I had her tested and sure enough, it was positive. I also researched for my older daughter and came up with ODD which described her so well. If nothing else, that told the therapist and the doctor how bad the situation was.

[azmom3]

I think the ODD is a description of her behaviour. I think it was a result of her diet. She had some symptoms of depression like always being tired, losing interest in her activities, irritability but she really was diagnosed with that because we were looking for an underlying cause of the ODD. All of those symptoms could also be from the gluten intolerance.

My other daughter was first diagnosed with gluten intolerance by Enterolab. Then I tested myself and my older daughter. My older daughter's only symptom of gluten intolerance was the irritability. I was hoping it would cause an improvement in her behaviour but it seemed hard to believe. 3 months into it and she is a different child. She was never much trouble except at home but other people have noticed that she seems more relaxed and happier. It is amazing! (I hope I'm not jinxing myself here.) 3 months is too soon to say for sure that she is "cured" but it sure seems like it.

I hate to have to be my own doctor but I think you kind of have to. My younger daughter had slight symptoms of celiac her whole life and was tested multiple times with the blood tests. When I found out about Enterolab, I had her tested and sure enough, it was positive. I also researched for my older daughter and came up with ODD which described her so well. If nothing else, that told the therapist and the doctor how bad the situation was.

I tried to reply and had typed a couple paragraphs then accidentally hit something and it disappeared I think. This is so reassuring though to know that diet might be able to help him. Thank you so much!

[fullofhope]

I am a special ed teacher for kids with behavioral/learning issues, so I'm well-versed on all those labels that get put on kids. I had a few parents here and there refuse services for their child, instead opting to try dietary changes, and I have to admit I was skeptical. Then along came my own son. When he gets gluten, he could easily be diagnosed with ODD, ADHD, OCD, severe anxiety, and Aspergers, all in one, without exaggeration. He's a whole different child. I'm glad you are doing your research and asking questions! As far as foods, there are applegate farms hotdogs, frozen breads by food for life that toast up nicely (we love the millet variety), cereals like rice crunchems and gorilla munch, bob's red mill chocolate brownie mix and pancake mix, Ian's fish sticks and chicken nuggets (red banner), and I coat our chicken in rice or millet flour with spices after dipping in rice milk (we are egg and milk allergic). I believe Annie's makes a gluten-free mac n cheese. Fruit leather makes a great snack. Anyway, best wishes!

janel