Does This Sound Familiar

[welshbird]

New to this but wondering if this sounds familiar. I have a 5 year old boy who has had behavioural issues from the time he started to crawl at 6 months old up until 1 month ago when we completely cut out wheat, dairy and soya from his diet. We have been playing with his diet for nearly 2 years ( cutting out wheat/colourings/fruits etc: hypoglycemic diet)and thought he had improved but never quite got there until the doctor mentioned celiacs amongst many other possibilities. His symptoms initially was that he was always in his friends space (normally on top of them); severe ureasonable temper tantrums that lasted up to an hour and ended up by him sleeping; oppositional; physically and verbally aggressive; couldn't play alone; absconding; night terrors; bed wetting; wake up at 5am in a foul mood - headbutting, uncontrollable; used to hurt his younger brother if not watched every second; behavioural techniques just didn't work; for periods during the day he would be an angel; hurt children in nursery - the list is endless. Many of these resolved after about a week of cutting everything out of his diet and feeding him every hour - the bedwetting, nightterrors and early wakening returned after about 3 days of reintroducing wheat so this was stopped but his behaviour continued to be challenging in various degrees as we played with his diet to try to find the link. Over the past year with wheat nearly excluded from his diet but not all gluten, and dairy reduced but not stopped, his behaviour was improved but he'd still have periods of hurting other children and being a very difficult child. Other times this would be really good. Academically I knew he wasn't progressing - he had no interest in drawing/reading/writing he couldn't even draw a face a month ago despite being very bright when younger (did a 24 piece puzzle before his second birthday and memorized the spines of all his books - he had a lot).

A month ago all this started changing. He had an iron test done to show that he had a low iron store. In the same week we reintroduced milk and within 2 days he had punched, bit and kicked various children at school. Relooking at the celiac sites I thought that maybe this was the problem hence the complete stop of gluten and dairy. After about a week Dylan was a lovely boy that would get dressed in the morning etc, didn't just object to everything. It was a bit emotional when he said that his headache and tummy ache had gone (the tummy ache returned each time we tried soya which is why this is not given). A pretty continuous rash around his mouth has completely resolved. A month later he plays alone for long periods; he can play alongside his 2 year old brother without harming him; he is now reading early reading books (this is above average, a month ago he was struggling with letters); he wrote a sentence yesterday (a month ago I used to take a very long time to get him to sit down to write a letter), he can draw pictures not scribbles, at play with friends I can relax as he is normal. His temper is still awful but reasonable and he has a lot to learn. The hell of the last five years seem to be over and I can start enjoying being a mum instead of always battling. Have I gone crazy or does this sound like any of your children?

[j-mans mom]

New to this but wondering if this sounds familiar. I have a 5 year old boy who has had behavioural issues from the time he started to crawl at 6 months old up until 1 month ago when we completely cut out wheat, dairy and soya from his diet. We have been playing with his diet for nearly 2 years ( cutting out wheat/colourings/fruits etc: hypoglycemic diet)and thought he had improved but never quite got there until the doctor mentioned celiacs amongst many other possibilities. His symptoms initially was that he was always in his friends space (normally on top of them); severe ureasonable temper tantrums that lasted up to an hour and ended up by him sleeping; oppositional; physically and verbally aggressive; couldn't play alone; absconding; night terrors; bed wetting; wake up at 5am in a foul mood - headbutting, uncontrollable; used to hurt his younger brother if not watched every second; behavioural techniques just didn't work; for periods during the day he would be an angel; hurt children in nursery - the list is endless. Many of these resolved after about a week of cutting everything out of his diet and feeding him every hour - the bedwetting, nightterrors and early wakening returned after about 3 days of reintroducing wheat so this was stopped but his behaviour continued to be challenging in various degrees as we played with his diet to try to find the link. Over the past year with wheat nearly excluded from his diet but not all gluten, and dairy reduced but not stopped, his behaviour was improved but he'd still have periods of hurting other children and being a very difficult child. Other times this would be really good. Academically I knew he wasn't progressing - he had no interest in drawing/reading/writing he couldn't even draw a face a month ago despite being very bright when younger (did a 24 piece puzzle before his second birthday and memorized the spines of all his books - he had a lot).

A month ago all this started changing. He had an iron test done to show that he had a low iron store. In the same week we reintroduced milk and within 2 days he had punched, bit and kicked various children at school. Relooking at the celiac sites I thought that maybe this was the problem hence the complete stop of gluten and dairy. After about a week Dylan was a lovely boy that would get dressed in the morning etc, didn't just object to everything. It was a bit emotional when he said that his headache and tummy ache had gone (the tummy ache returned each time we tried soya which is why this is not given). A pretty continuous rash around his mouth has completely resolved. A month later he plays alone for long periods; he can play alongside his 2 year old brother without harming him; he is now reading early reading books (this is above average, a month ago he was struggling with letters); he wrote a sentence yesterday (a month ago I used to take a very long time to get him to sit down to write a letter), he can draw pictures not scribbles, at play with friends I can relax as he is normal. His temper is still awful but reasonable and he has a lot to learn. The hell of the last five years seem to be over and I can start enjoying being a mum instead of always battling. Have I gone crazy or does this sound like any of your children?

Hi - this sounds like my 9 year old and he is at this moment at emergency for blood coming from his rectum- we are not sure if he might have crohns- but certainly his number one symptom or his most glaring is BEHAVIOUR! He is so angry and out of control that it looks almost like he is having a seizure. His latest blood tests came back vitamin b12 anemia- we are just starting to remove gluten from his diet - I have four children - one of whom is anorexic and I am so scared about this new diet- but I am hopeful it will help him reduce his anger just as you have described.

[welshbird]

Poor you. From my experience of trial and error and a lot of internet research I think that my boys stomach has been destroyed which is why he was affected by most other types of food. I already think that his stomach has been healing over the past year by avoiding wheat which is why he is now able to tolerate all fruits (strawberries and pineapple made him go loopy very qickly) now he eats them without a problem. The dairy seems to be the trigger for his bad behaviour at the moment but wheat just made life impossible. I am finding making gluten and wheat free food very easy as he is now so good I can cook whilst he is playing alongside me or even in another room. A month ago I did all the cooking the night before and mealtimes weren't very pleasant. He must know the positive effect as he doesn't object to not having cheese and puts up with rice milk when he sees everybody else tucking in. His sugar consumption has gone up loads though as there is a lot of substitution with sweets.

[dilettantesteph]

My son got diagnosed at age 10. Before that problems in school, wouldn't listen, forgot things, hit his sister, hit me...After he got off gluten these things pretty well resolved. If we could only stop accidentally glutening him I bet they would go away completely. We caught him just in time. Now he is 12, bigger than me and it hurts if he loses it!

[welshbird]

My son got diagnosed at age 10. Before that problems in school, wouldn't listen, forgot things, hit his sister, hit me...After he got off gluten these things pretty well resolved. If we could only stop accidentally glutening him I bet they would go away completely. We caught him just in time. Now he is 12, bigger than me and it hurts if he loses it!

Did he have any gastro symptoms? The only one my son had was tummy pain which only became apparent last month after stopping gluten and dairy. Thinking back he used to be sick a lot as a baby and toddler and his poos were might have been a little bit odd. He had a rash around his mouth and was always scratching - GP put this down to dry skin but both have resolved over the past month.

Has he been diagnosed with celiacs or are you just trying gluten free with positive results?

He was already hurting myself and my husband so I am glad we have found the link before he gets any bigger. I am not sure if it is celiacs as it isn't a normal presentation. I would like him tested but the thought of putting him through eating wheat again and the severe consequences to his behaviour fills me with dread. I guess if there were other kids/adults out there who's initial symptoms were similar to what I have described it would give me more confidence to ask our doctor for further investigations to be done.

[plantime]

You are describing the way my great-nephew behaves. I believe he needs to be glutenfree, but my family refuses to believe that gluten could cause such behaviour. I hope your son continues to improve.

[boysmom]

This sounds very much like both my oldest and youngest sons. My oldest is almost 18 now, and seemed to gain control of his behavior bit by bit from ages 7-11 when he had his last blow up. At that point he learned to go take a walk when he was feeling out of control and came back feeling human again. My youngest is only 8, so we're still in the throes of it whenever he gets gluten, and we're beginning to suspect peanuts as well.

Neither of my sons is officially diagnosed. I was diagnosed last summer and have been gluten-free since the beginning of June. After reading how it can manifest in children as behavioral problems I suggested to my husband that we give it a try for our youngest and the change was dramatic! My sweet dh decided if some of us had to do this we would have a gluten-free home, so now those who still eat gluten only get it when they go out. My husband says he can't tell a difference when he eats it (but I've noticed he gets gassy and has diarrhea after eating large portions), oldest son says he feels better without it but still eats it anyway , 16yo son gets gassy and has tummy aches so has decided it's not worth it, 14yo gets really bad acne and reflux so is gluten-free, 10yo gets as emotional as a hormonal girl but still eats it when he can, and the youngest is not given the option because we can NOT live with him when he eats any gluten at all.

I don't think you're crazy or a bad parent. BTDT and know the difference between a child that hasn't been taught manners or kindness and this situation when an otherwise reasonable child suddenly turns into the tasmanian devil. My youngest is the sweetest, snuggliest most thoughtful child when he's clean, but would cut off his nose to spite his face with just a tiny bit of the poison in his system

[dilettantesteph]

Did he have any gastro symptoms?

He got diagnosed when he started throwing up 10 times a day. Before that he had what in hindsight was probably DH, red ears, and no apparent gastro symptoms, but he did throw up if he ate a lot of ice cream. Now we realize it was probably GERD.

[MRM]

sounds a lot like my 6yo. he was explosive, irritable, had sensory issues, hit and fought with us. he started having gastro issues this past fall when he started school. that was also when he started eating wheat and dairy daily in his packed lunches. before that he got very little of both because i was on a wheat free diet for my 2yo for several months. he's been off gluten for a week(except a slip up last weekend) and it's like night and day. he's been happy, cheerful, talkative, loving and compliant. my DH is amazed at the change and never wants him to have gluten again. his blood work came back negative this week and i'm unsure how we'll proceed from here as far as testing goes.

[welshbird]

My son has just had a bit of a relapse at school last week - hitting out in the playground at lunchtime and being very irritable after school until he had been fed an hour later. Found out yesterday that he has had pain in his tooth (seeing dentist this pm as his enamel looks worn away in bottom front tooth). My thoughts are that he has not been eating his lunch due to the pain and this has made him hypoglycemic. He has been good as gold over the weekend and eating food. Is this yet another sign of celiac?

Are teeth problems also a sign of celiac, or just that he hasn't had enough calcium over the past 2 months. I went to the doctor a few weeks ago to ask about calcium supplements. She asked if I was doing this diet through choice and that I should wait to see the dietician. Now I have a dilemma - do I reintroduce dairy and risk the return of the behaviour and hope that his gut has improved (he has been strictly gluten free for 2 months but nearly wheat free for over a year). Do I just buy calcium supplements anyway against doctors advice?

HELP

[MRM]

weak teeth and enamel is very common with celiac/gluten intolerance. your body is not absorbing nutrients like it should. there's many threads about it here.

you don't need to get calcium from dairy. it's in so many other foods. if it were me i'd go with a dairy/gluten free supplement and also bump up his diet with calcium rich foods.