Looking For Opinions

[mstroud]

Hello all! I'm sorry if this topic has been discussed 100 times before, but I could definitly use some opinions from others who have been through this.

A little background, my oldest son (7) was diagnosed in May 2008 with Celiac Disease via blood work and endoscopy. We decided to have my middle son (4 1/2) tested and it turns out he has two genetic markers for Celiac Disease, but his other results were 'normal' (I'm having the results sent to me). I've been told that that alone means nothing ... no gluten free diet needed because his IGA and TTG levels were fine.

Here's where I would like opinions. My middle son has been pistol most of his life. He's a sweetheart sometimes, but has a really bad temper. Recently (in the last year or 1 1/2 years) it's gotten worse and he'll seem so out of control. He has periods where he has plenty of impluse control and other times where he'll hit or throw a fit over not being able to fix his Lego set the right way. I've read many places that ADD behavior and Jeckle and Hyde (sp??) behavior in children with celiac disease (pre-diagnosis).

Even though his blood levels were fine, could he be sensitive to gluten? I've read that with a diagnosed celiac in the house the changes of having gluten sensitivity increases. Wouldn't that show up in the blood work?

We are 95% sure we're going to go gluten free as a family. We'd decided that if my middle son came back positive for Celiac we'd go gluten free, but we're in a grey area with that! My husgand and I are both having our blood work drawn next week. I guess the fact is that if we take gluten out of his diet and his behavior improves we'll have that answer. But, I want a little more knowledge before I commit him to a gluten free diet.

Thank you for advance for any thoughts or sharing any similar experiences.

Margaret

[CeliacMom2008]

OK, this is only my experience, so take if for what it is worth. My son was diagnosed in Dec. Prior to diagnosis he was a wonderful, amazing, smart, kind hearted kid. His teachers loved him. Our family loved him. He really was a good kid. Buuuuut, he had these mood swings... Funny you mentioned Legos. We had many experiences with Lego frustration - and Legos are his all time favorite thing to do. And usually you'd just have to wait a bit and the sweet, lovable, funny kid would show back up. He was most volatile when he was tired or hungry. And he was tired A LOT!

When he was diagnosed with Celiac and I started reading up on the symptoms I read "moodiness". In the height of my sadness about his diagnosis I would joke about how if this had to be that we better at least get the moodiness cured! It was one of those jokes you make when you're so low you're trying to find a way to make yourself happy. I didn't really expect gluten to have been the cause of his temper (thought he just got that from his dad ).

Since going gluten free, those mood swings have almost disappeared entirely. I won't say he never has a mood swing now, but they are much more mild, fewer and farther between, and usually triggered again by fatigue or hunger. He is no where near as tired as he used to be and hunger isn't really an issue any more because we don't eat out, thus are home a lot more and he has access to food whenever he wants it outside of school.

OK, so we are definite success story for gluten free postively affecting mood. Now let's move to the gluten-free household. For many reasons (some being selfish), I prefer a gluten-free house. It's much easier on me. We don't allow gluten in our house unless it is being eaten by my husband or myself and that is very rarely and we are ULTRA careful. My husband's family came to visit shortly after our son was diagnosed and I was a basket case. My SIL brought homemade pies like always. She even made a gluten-free one for my son. All great, well and fine. Until the pies were cut and the crumbs went everywhere. My toddler niece walked around the house with her Cheerios and I was sick. I found animal crackers on the counter. You get the picture. They didn't mean to make me nuts, but it did. Everywhere I saw poison just waiting for my son to find it. So we don't do gluten.

And I want my son to have one place in the world where he can relax about food. I know others think it's good for them to learn to live in a gluten world, but for us we'd prefer the walls of our home to be a safety zone for him. We still make him practice safe eating - wash hands before eating each and every time, use a plate, don't put food on the counter, check labels just to be sure, etc. But deep down he knows the house and food inside are safe. We have one shelf in the pantry that has cereal on it that he knows is off limits (and I still try to only buy cereal he never liked anyway).

With all of the speculation on gluten and attention deficit or autism, it can't hurt to try. I'm sure it will help your Celiac child to adjust if he doesn't feel like he's the odd man out in the family. And even if your other children don't benefit from a gluten-free diet, it won't hurt them to learn that sometimes you do things for people you love just to make their life a little easier/healthier/safer/better. And a gluten-free lifestyle really isn't bad. We were so worried about what we would eat (I was not much of a cook). Well that was just silly. We eat very good food and have tried a lot of things we never would have and loved them.

So that's our experience and a little of my 2 cents. Good luck to you! I really hope gluten-free helps with the moods swings at your house. It is so nice to not have to cringe or wonder if the bad mood is just lurking around the corner waiting to pounce on you when you least expect it!

[Ursa Major]

The celiac disease tests are notoriously unreliable in children under six. Meaning, that the negative results in your little guy only mean that he isn't near death (yet). Eventually he may get really ill, and will test positive.

One of my grandsons used to be extremely emotional. If he hurt himself, or somebody hurt his feelings, he would cry for hours and be inconsolable. My daughter thought he was a little wimp! He also was way too thin, always hungry and never had a solid bowel movement. He also fell behind in his growth.

Two years ago, when he was four, my daughter put herself and their five kids on a gluten-free diet. All of them improved in many ways, but for Ethan especially it was like a miracle. He started gaining weight immediately, he finally had solid bowel movements, but his mood improvement was amazing.

No more wimp (how unfair that they treated him that way, it always broke my heart), he is cheerful and even tempered. And when he hurts himself he won't cry for more than a couple of minutes (if at all) and be off playing again. He is also so much more patient. We just hope that he will also catch up in height at some point.

[purple]

I know a couple of kids that everyone says is bipolar which could be caused by gluten. They can be sooo nice at times and sooo hateful at times. We think one could be allergic to gluten so we are watching her, the other just moved across the country.

[Cinnamon]

In my opinion, when you have these dramatic swings it's an indication that there's something affecting the child from the outside, whether its food or some other environmental thing. If a person just has a bad temper, they have a bad temper pretty much every day. If they are basically good natured, then that's their basic nature every day for the most part, though of course no one is at their best when they are tired or not feeling well or frustrated. But people's personalities don't change in a hugely dramatic way from one day to the next unless something is being ingested that's having a bad effect on them, in my opinion.

My son was having crazy ups and downs, and would go from being completely fine one day, to uncontrollably hyperactive the next, to terribly brain-fogged and clumsy the next. I noticed he was always at his best when he hadn't eaten in a while. We saw several doctors and none could help us. We finally figured out it was gluten, and soy as well. He also can't have a lot of high phenol foods, such as food colorings, certain fruits, etc. It took a long time to figure it all out, but he's doing so much better now. At least you have a head's up that it could be gluten since your older son has a problem with it. It can't hurt just to try the diet and see if it helps. You might just be pleasantly surprised!

[mcs1984]

Here is the deal, you will not know unless you try. A little back ground on my 4 year old, he was never feed a lot of carbs and stuff until about 26 weeks ago when i went to the doc and said something is not right. When we tried a high fiber diet and some of the foods i found were gluten free his mood changed a little then they said let do a scoop due to other reasons and we will go from there. So we went 100% gluten that same weekend we let him have pasta twice and other all flour products we had a monster on our hands. They went on and tested for Celiac everything came back neg on blood and scoop but after talking more with his doc and telling her what had been going on, we went gluten free with him. It has been 3 weeks and it so amazon the change in him. We do go to bed on time with out crying and throwing fits for 2 hours. I have not had any major melt downs and he wants to play again. When i talked to his doctor on Monday she was amazed in the fact we have our son back. So anyways i am just saying try it, you never know.

[arkant]

I agree--try.

My 13 year old was diagnosed jan-april this year, was tired and insatiably hungry all the time, rheumatic symptoms, Raynauds, , high RF, no classic celiac GI symptoms. Positive bloodwork and endoscopy/biopsy. After 1-2 weeks on gluten-free diet, regained strength and energy, sore joints improved, still tired more than I like.

My 10 year old presented in a completely different way. A funny, engaging, loving super bright kid, of course, but always a very picky eater, living on pasta, very moody, which we blamed on her limited diet. Often complained of upset stomach, but apparently healthy and growing fine and our pediatrician couldn't find anything. When her sister was diagnosed, we had her bloodwork tested, and all came back positive. We didn't bother with the endoscopy, put her on gluten-free diet immediately, and within a week it seemed, the moodiness dropped away like magic. She still complains of stomach aches and she thinks maybe she has additional issues (has respiratory allegies, occasionally asthmatic)

Anyway, it was shocking to all of us how transformed her moodiness was by the gluten-free diet.

Another thing. We made our house virtually gluten free, and I agree its really nice for them to come home and know they can eat anything they want. I always make sure to have plenty of gluten-free treats around. Its been an important coping mechanism for our family.

[mstroud]

I greatly appreciate the replies! I absolutely agree with everyone who has said that we won't know until we try!

My husband and I decided over the weekend that we would make the house as gluten free as possible. We bagged up the wheat flours and put them up, I put away / threw away any gluten snacks, stocked up on gluten-free snacks / foods, and rearranged the counters so there is now one tiny part of the island where we can make anything with wheat (for the toddler or us). I think we really have to do it now so that we can be in control of what he's eating and see if there is any change before he goes back to preschool.

My middle son was very excited that when I told him that he could have any of his older brother's gluten free snacks! And, I can already feel some of my meal time anxiety around cross contaminiation going down. I can imagine that it'll get easier as time goes on ... at home at least!

Thanks for the responses! Margaret