My Challenging 5 Year Old

[Nads4kids]

Firstly I am celiac and was diagnosed in November 2010. Since being gluten free I am so much healthier. As a result of my celiac disease I had all four children tested for the genes. My youngest son, Grady has two celiac genes and we were told that it is almost guaranteed he will develop celiac disease it's just a matter of when.

Since then Grady has had blood tests every six months and slowly but surely his antibody levels are increasing but according to the doctors not enough to refer him to a specialist for a biopsy. Grady's behaviour is a concern. He is an angel one day and a little demon the next almost like he suffers from ADHD.

Grady doesn't have any specific celiac symptoms but neither did I. My instincts tell me he is most likely celiac but I don't want him gluten free before an official diagnosis because in Australia if you are not diagnosed with a biopsy you are not eligible for any new celiac treatments which are starting to be offered.

Has anyone out there had major behaviour issues with their children prior to being gluten free.

[pricklypear1971]

Yes. My son isn't gluten-free but lately he has started showing GI troubles. He tested antibody negative in Dec., we are playing the testing game too.

I am testing milk with him right now. He gets sick after eating cheeseburger/fries/shake. Tonight is gluten-free and df version of all that.... He did better yesterday on lactose free ice cream. We are gluten-free at home - I think I triggered him when I went gluten-free. Makes me feel guilty.

But yes, it's like Jekyll and Hyde with him. Sweet as pie then total demon and head spinning around.

Others here talk about behavior improvements.

[Nads4kids]

It's very frustrating, I'm going to take him back to the doctors for another round of blood tests and if the antibodies have increased again I'm not going to be dismissed as a parnoid parent I'm going to demand a referral to a GI.

[Mizzo]

Firstly I am celiac and was diagnosed in November 2010. Since being gluten free I am so much healthier. As a result of my celiac disease I had all four children tested for the genes. My youngest son, Grady has two celiac genes and we were told that it is almost guaranteed he will develop celiac disease it's just a matter of when.

Since then Grady has had blood tests every six months and slowly but surely his antibody levels are increasing but according to the doctors not enough to refer him to a specialist for a biopsy. Grady's behaviour is a concern. He is an angel one day and a little demon the next almost like he suffers from ADHD.

Grady doesn't have any specific celiac symptoms but neither did I. My instincts tell me he is most likely celiac but I don't want him gluten free before an official diagnosis because in Australia if you are not diagnosed with a biopsy you are not eligible for any new celiac treatments which are starting to be offered.

Has anyone out there had major behaviour issues with their children prior to being gluten free.

Yes my daughter was highly emotional, short tempered , cried easily and sensitive . The symptoms started to disappear within 2 weeks of going gluten free. Took 8 weeks for a close to full change.

I need to ask, what Celiac treatments are you referring to? Here in the U.S. there are no "treatments" other than diet that I am aware of.

[natalie22]

Our daughter was diagnosed when she was 6.5 years old. She too had no apparent GI symptoms. The main reason she was tested was a two year long decrease of appetite and a little anemia (nothing very severe). Her antibodies were sky high and her iron reserves (ferritin) were almost zero.

She was very hyperactive and could not concentrate enough to finish her first grade homework, which were very easy. A few months into her gluten-free diet her teacher asked us if we had switched girls in her ?. Suddenly she was concentrating, not fidgeting in her chair, and completing homework in five minutes. A couple of years later she was diagnosed as a gifted child and now learns in a special gifted class in seventh grade and although material is very advanced, she has no problem with it.

I am sure Celiac can alter a person's behavior and temper and even mental skills, especially in children, and I agree that you should insist your son gets tested further. It׳s important to make sure they take several samples from different areas, because sometimes one area is infected and the other is still clear.

Good luck and good health

Natalie

[Cara in Boston]

My son (5 at the time) had ZERO symptoms and his drastic change in behavior was the thing that brought us to the pediatrician. (Strangely, I had all the classic symptoms but had never considered Celiac Disease.)

He went from being a well behaved boy (no angel, but certainly within manageable limits) to someone we hardly recognized. Tantrums lasting hours (over the smallest thing), meltdowns over common frustrations (putting on socks) and a lack of interest in things he formerly enjoyed ("everything is boring") He used to rush home to do all his homework, suddenly it was a struggle - ending in a tantrum or meltdown. Consequences didn't matter, reasoning didn't work, it was clear he was not in control of his behavior. This went on for several weeks. We got to the point where we didn't want to take him anywhere because his behavior was so unpredictable. Strangely, the teachers at school (Kindergarten) saw NONE of this and were shocked when I described his behavior. He was somehow able to keep it together at school, but not at home.

After about a month, he had three days in a row where he complained of a stomach ache. Then they went away.

I had already made an appointment with the doctor so we went and she couldn't find anything wrong with him. When I mentioned the terrible behavior we were dealing with, she thought to give him the blood test.

He was positive on some, negative on others. His biopsy ended up being very positive.

He was back to his usual self within weeks of being gluten free and now we see the tantrums only about once a month (cross contamination? Not sure. ..)

Cara

[Minette]

What are his antibody levels? I'm new at this, but it was my understanding that almost any positive levels (though it depends what scale the lab uses) are an indication of possible/probably celiac. So if you've had them tested several times and can tell they are increasing, I would think they would be over the threshold for a biopsy by now. At any rate, I would push for a biopsy, and consider finding another doctor if your current doctor won't refer him for one.

Edited to add: My 6 year old DD is still on gluten (awaiting biopsy) and we definitely see behavior issues in her. Who can say if they will resolve when she goes gluten free, but she has a very "Dr. Jekyll and Mr. Hyde" thing going on.

[Nads4kids]

Firstly to Mizzo, in Australia we have a great deal of research about celiac disease and clinical trials are being offered at times. The research groups are developing a number of treatments which may not be that far away. In Australia if you are not diagnosed with a biopsy they do not recognised that you have celiac disease which also affects your ability to claim certain medical expenses. Another thing you are eligiable to get if you are diagnosed with a biopsy is discounts on gluten free foods in some supermarkets and that certainly makes a difference because gluten free food is so expensive here.

It's really great to hear your feedback Cara, Natalia and Minette. It makes me feel a whole lot better knowing that other people have experienced the "Dr Jekyll and Mr Hyde". Grady's teacher told me that he was so naughty this week, can't sit still, can't reason with him, argumentative, defiant, can't concentrate and he was even swearing at school. It's so embarrassing none of my other children would even dream of behaving like that. When I asked Grady what is going on and why is he behaving like that he "doesn't know and I can't stop it Mum".

Minette information regarding the Antibodies is in relation to the inital blood screening I hope this helps you understand what we are taking about:

Blood tests (coeliac serology) are used to screen for coeliac disease.

[pricklypear1971]

Firstly to Mizzo, in Australia we have a great deal of research about celiac disease and clinical trials are being offered at times. The research groups are developing a number of treatments which may not be that far away. In Australia if you are not diagnosed with a biopsy they do not recognised that you have celiac disease which also affects your ability to claim certain medical expenses. Another thing you are eligiable to get if you are diagnosed with a biopsy is discounts on gluten free foods in some supermarkets and that certainly makes a difference because gluten free food is so expensive here.

It's really great to hear your feedback Cara, Natalia and Minette. It makes me feel a whole lot better knowing that other people have experienced the "Dr Jekyll and Mr Hyde". Grady's teacher told me that he was so naughty this week, can't sit still, can't reason with him, argumentative, defiant, can't concentrate and he was even swearing at school. It's so embarrassing none of my other children would even dream of behaving like that. When I asked Grady what is going on and why is he behaving like that he "doesn't know and I can't stop it Mum".

Minette information regarding the Antibodies is in relation to the inital blood screening I hope this helps you understand what we are taking about:

Blood tests (coeliac serology) are used to screen for coeliac disease.

[7yrslater]

My son (5 at the time) had ZERO symptoms and his drastic change in behavior was the thing that brought us to the pediatrician. (Strangely, I had all the classic symptoms but had never considered Celiac Disease.)

He went from being a well behaved boy (no angel, but certainly within manageable limits) to someone we hardly recognized. Tantrums lasting hours (over the smallest thing), meltdowns over common frustrations (putting on socks) and a lack of interest in things he formerly enjoyed ("everything is boring") He used to rush home to do all his homework, suddenly it was a struggle - ending in a tantrum or meltdown. Consequences didn't matter, reasoning didn't work, it was clear he was not in control of his behavior. This went on for several weeks. We got to the point where we didn't want to take him anywhere because his behavior was so unpredictable. Strangely, the teachers at school (Kindergarten) saw NONE of this and were shocked when I described his behavior. He was somehow able to keep it together at school, but not at home.

After about a month, he had three days in a row where he complained of a stomach ache. Then they went away.

I had already made an appointment with the doctor so we went and she couldn't find anything wrong with him. When I mentioned the terrible behavior we were dealing with, she thought to give him the blood test.

He was positive on some, negative on others. His biopsy ended up being very positive.

He was back to his usual self within weeks of being gluten free and now we see the tantrums only about once a month (cross contamination? Not sure. ..)

Cara

Holy Moly! You have made me rethink my entire children's lives!! We are looking into going gluten free for my oldest because of GI issues, JRA, intense itchy rash...but her blood work was normal. When we started researching we saw she had many of the celiac symptoms. And then I started reading about behavior issues and wondered if we shouldn't go gluten free with our second daughter as well. You just absolutely described her to a T!! She is EXACTLY the same way. Only she was diagnosed bipolar a yr and a half ago. But my gosh, the girl has had off and on constipation issues since she was 5ish and has had these horrible mood swings since toddlerhood. Perfect at school. They don't see ANY issues. Meltdowns, crying, depression, then to euphoria highs at home. Over the smallest issue! I am SO going to go gluten free with both my girls and see if that makes any difference!

[T.H.]

There was an article here at celiac.com a while back discussing the problem with blood tests, and it would seem to apply to your situation.

"... Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature..."

https://www.celiac.com/articles/817/1/False-Negative-Serological-Results-Increase-with-Less-Severe-Villous-Atrophy/Page1.html

You mentioned that your child's blood work was coming back higher and higherlevels of antibodies. If your child doesn't have severe atrophy yet, then it would seem that the tests are more likely to be negative, but the increase in levels seems of concern.

If the increasing antibodies indicate increasing damage, then that's damage done to your little one, every day. Damage increasing also increases in nutritient deficits. In that case, there is a lot of physical and mental development that may suffer over the span of the 6 months they repeatedly ask you to wait through.

And sorry if this is coming out too harsh, but it's very personal for me. My daughter wasn't diagnosed for years, as she had primarily emotional and anxiety symptoms and they didn't catch it. But after she was diagnosed, and we thought it would all 'get better,' we've learned how wrong we were. She is being evaluated for Hashimoto's disease. She has pain every single day now, every time she eats or drinks, and the doctors don't know why. She has permanent teeth and vision issues that the doctors say look like they could be vitamin deficiency related.

If I could go back in time to all the appointments where the doctors said that my concerns about her health were probably allergies, or a phase, or 'nothing,' or we should wait and see? I would do it all differently.

When it comes to testing for celiac disease, 'waiting' to see how our children's health changes before allowing us to have our children tested is not a good solution, IMO. It's a good way to for our kids to get sicker.

[Nads4kids]

Blood tests done today now waiting for the results. The Doctor is almost certain Grady has Celiac Disease. The time was good too as the Doctor had just been to a conference on Celiac Disease on the weekend, nice to have a Doctor that knows what you are talking about.

Shauna, I understand where you are coming from but I want a definite diagnosis before going gluten free. I don't want to taken him off gluten and then be in a situation where I need to put my child back on gluten just to get properly diagnosed. What if I am wrong and he doesn't have celiac disease? what if it is something else?

[Nads4kids]

Surprisingly the blood results were lower than before but that could be attributed to the fact that many of the foods in the household are gluten-free because of me and also the fact that blood tests are always that accurate with children. Now we await the appt with the Paediatrician to then get referred to a GI, the process is really frustrating!

[xjrosie]

It has occurred to me that my daughter might have been Celiac from birth. From day one, she was emotional, hard to reason with, impossible to deal with. Highly intelligent, but near failing because she refused to do homework. I couldn't wake her up in the morning without a fight. Getting dressed, brushing teeth/hair, taking showers - a constant fight. I would have to start nagging her about two hours before when I wanted her to shower if I wanted her bathed at night. For the first two years of her life she had a big bruise on her forehead because she would bang her head on whatever was closest if she became upset. And not gently.

Since going gluten-free in December, her attitude has changed. She's started to learn her chores instead of throwing a fit because "she doesn't know how to do it" (even though I constantly coaxed her by telling her I would teach her). She does her homework without prompting. She's gone from struggling to get C's because of not turning her homework in, to all A's. She takes a shower right when I ask, even when she doesn't want to. She remembers her vitamins in the morning (deficiencies from being glutened for so long).

This is beside the health issues. She had gone from above 80th percentile down to the 15th in height and weight. In third grade she was one of the smallest children; now she's right about in the middle. Her height and weight are up into the 60th percentile now, and that's after only six months. She's gained four inches since January. Her feet have sprouted two whole sizes. She went from a size 8 to a 12 - and she's very lean. Her nickname is Bruiser. Being gluten-free has made her a healthy, happy child. To me, it borders on miraculous.

It's like having a totally different child.

[Birdie19]

Ok, I am new to Celiac disease in our family (my husband's mother has it - 20 years). But to me it is new.

Our 3.5 year old daughter is a normal happy child. Never a complainer, but she gets bloated after meals. Nothing that would seem crazy unusual but enough that we noticed and thought, that can't be right. But or BIGGEST symptom was her NAUGHTY behavior.

I often describe her as a menace to society. She will get into anything she can and destroys everything. I rarely see her actually sit down and play with something. The best way I can describe it is she seemed to be jumping out of her skin. Like she wanted to go in every direction at once. Over the course of the last 2 years my husband and I couldn't figure it out. How is it possible that this sometimes very sweet child can be so insane? I don't get it! We tried everything, parenting books, EVERYTHING! We discussed every punishment we cracked down on everything to the point of complete desperation. 4 weeks ago she tiptoed out of her room when into my room climbed my dresser took down the bag of nail polish and proceeded to dump four bottles of nail polish on my hard wood floors. This isn't my kid! I just don't get it! How do I have this child? We are doing everything we can and she still doesn't behave.

Finally 3 weeks ago my husband looked at me and said, I think we need to have her seen for the abdominal bloating. I think it's time to get her Celiac tested. We took her into the Dr and her TTGA and IGG were elevated and suggestive of celiac. Her biopsy was negative. We agonized over trying the celiac diet. Do we want to do this to our child if we aren't sure? We decided to trial the celiac diet. What's a few months of her life while she is young?

Results

The results were astonishing. With in a day her behavior drastically changed. She stopped behaving so badly, she started listening, she sits down and actually plays with a toy now instead of ping ponging all over the place. Our daycare has even noticed. She falls right asleep at naptime now. She doesn't toss and turn for an hour she falls right asleep. She doesn't massively overeat. She eats a little feels full and stops eating. She doesn't fight us at all. What we say goes.

Confirmation

Our confirmation has been they screwed up the diet at daycare this week. And we have noticed a marked difference in her behavior. Increase time to fall asleep, less ability to listen, etc.

I can't give you any definitive answers about your particular case.....what I can say (and what was said to me)

1. It's just a diet....if it doesn't work what's the harm?

2. Is it truly necessary to do all of the medical work up, if the diet works? (medical work ups are expensive and if the diet works WHO CARES, what the doctor says?!)

3. What would give you more proof the diet? or the labs?

I can't answer any of these questions for you, but I can guide you to ask them of yourself and them hopefully you can make your decision. I can also say, I have been there. And I have, less than 2 weeks ago.

In my opinion: you already have the proof (he has the genes), why subject him to more testing. Just trial the diet, if it doesn't work then you can try something else. My guess is your hunch is right!

[cmc811]

My son (5 at the time) had ZERO symptoms and his drastic change in behavior was the thing that brought us to the pediatrician. (Strangely, I had all the classic symptoms but had never considered Celiac Disease.)

He went from being a well behaved boy (no angel, but certainly within manageable limits) to someone we hardly recognized. Tantrums lasting hours (over the smallest thing), meltdowns over common frustrations (putting on socks) and a lack of interest in things he formerly enjoyed ("everything is boring") He used to rush home to do all his homework, suddenly it was a struggle - ending in a tantrum or meltdown. Consequences didn't matter, reasoning didn't work, it was clear he was not in control of his behavior. This went on for several weeks. We got to the point where we didn't want to take him anywhere because his behavior was so unpredictable. Strangely, the teachers at school (Kindergarten) saw NONE of this and were shocked when I described his behavior. He was somehow able to keep it together at school, but not at home.

After about a month, he had three days in a row where he complained of a stomach ache. Then they went away.

I had already made an appointment with the doctor so we went and she couldn't find anything wrong with him. When I mentioned the terrible behavior we were dealing with, she thought to give him the blood test.

He was positive on some, negative on others. His biopsy ended up being very positive.

He was back to his usual self within weeks of being gluten free and now we see the tantrums only about once a month (cross contamination? Not sure. ..)

Cara

I know this is an old post, but I feel like I could have written this exact post! We are just starting the testing process and I am researching like crazy. You say he tested negative on some and positive on some. Would you mind sharing the tests he had done and the results? Only thing so far my son has had is the tTG and the total IgA and they were both negative.