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I Know I'm Doing The Right Thing...but So Frustrated.
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I think this is more a newbie vent than anything...but reading here today has been so validating for me.

My son is 7 years old. Starting at age 3 we have battled a whole slew of things with no difinitive answers. He has long had horrible mood swings coupled with tantrums, kicking, yelling, etc. Even that description does not give the severeness of it justice. When not in the middle of one, he is one of the sweetest and loveable kids. Dr. Jekyl and Mr. Hyde. He

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Hi and welcome. It sounds like you've made great progress so far. Keep right on trusting your mom instincts. It sounds like you have good ones!

A lot of Dr. Jekyl and Mr. Hyde kids have food chemical intolerances as well as reacting to gluten and casein. Preservatives, food colors, salicylates, or natural amines that mimic neurotransmitters can all be issues for different people. Mom and I could always tell when my brother got into a bunch of food colors or artificial flavors because he'd go Mr. Hyde! Allergic reactions can be within a couple hours, but salicylate reactions tend to build up over days or weeks of exposure and amine reactions can be delayed as far as two days.

You might find these websites helpful. They have information on food intolerances and describe an elimination diet that is low in additives, amines, and salicylates called Failsafe. You can use to see if food chemicals are an issue. The work is out of the Royal Prince Alfred Hospital Allergy Unit in Australia, where they are much more aware of food chemical intolerance and allergies than in the US.

http://fedup.com.au/

http://failsafediet.wordpress.com/

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Keep a very detailed food journal. I say journal, because you should also be writing down amounts and long term reactions. Bm s and behavior symptoms checks too.

Some food reactions last up to 12 days (eosinphils) after the food "trigger". :blink: That's why a long term written history is critical to getting the full picture.

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Yes, it could be a smore! And, yes, I have a crazy mood-swing celiac kiddo. She too is the most loving little girl...until...gluten. She gets super physical and has very little impulse control when she has gluten.

Hang in there. Glutenologist and others are more experienced than I, so definitely follow their leads!

And, there are good graham crackers at whole foods! We camp a lot, so gluten-free smores are part of our lives!

Thinking of you!

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Keep a very detailed food journal. I say journal, because you should also be writing down amounts and long term reactions. Bm s and behavior symptoms checks too.

Some food reactions last up to 12 days (eosinphils) after the food "trigger". :blink: That's why a long term written history is critical to getting the full picture.

That's great advice. Also, remember that cc adds up when you eat more of something.

It is very hard when it's your child.

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That's great advice. Also, remember that cc adds up when you eat more of something.

It is very hard when it's your child.

Thank you all so much for taking the time to respond. It means so much to me. Sometimes I feel so lost. His attitidue is a little better today...still stuffed up. He doesn't react very well to typical cold/allergy meds so bought some all-nutaral stuff (Sinupret) yesterday in hopes it will help him.

Thank you for suggesting the journal. This is something I've been doing. I have to remind myself to be as detailed as possible, though.

I was so excited last night to tell my husband about reading the posts from others on here that have a child that show reactions through behavior. It was such a 'weight lifted off of our shoulders' to know we aren't alone and that we aren't insane!!! :)

I do have a question - what does "cc" mean? Sorry if it's obvious...

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Cc means "cross contamination". Oats are a good example. Regular oats, due to standard harvesting practices, have wheat in them. This is cc. Sharing a pb jar with a wheat eater will cc the pb from the bread crumbs on the double dipped knife.

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cross-contamination :)

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Thank you. That makes sense. :) I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.

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Hi Lindsay,

If you do a search on gluten and ataxia or gluten and opiates you will find there is a definite connection to affects on the brain. There is no doubt that gluten can negatively affect the brain. Some people think casein can have bad affects on the brain also. Casein is the protein in cow milk. I know I once ate some cheese and couldn't sleep for 3 days straight. It doesn't affect me like that anymore but I have healed a lot since then. So, IMHO a mood change is not a surprising thing from gluten.

There is some possibility gluten and casein can negatively affect children with Asperger's syndrome, but that is controversial at the moment.

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Thank you. That makes sense. :) I have to be honest that I haven't given that as much attention is I should. And I'm honestly not sure how much CC goes on in our home. But it's definitely something I will be paying more attention to.

A person who is gluten-free needs separate condiments, a separate cutting board (gluten gets in the scratches and is hard to clean out), and a separate toaster or toaster bags at a bare minimum. You also can't stir a normal pot of spaghetti and then forgetfully stir the gluten-free pot with the same spoon, or cut regular bread with a knife and then use on the gluten-free loaf without washing it.

Baking with wheat flour is something else to consider because gets in the air so easily. Play-doh is another gotcha as it contains gluten. We've even had some highly-sensitive members that tracked problems to gluten-containing pet food.

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I just want to say you are not alone.

The behavior you describe is my son (also 7) EXACTLY! He is the best kid in the world on good days, but those are overshadowed by the bad. Tantrums over the smallest things, he hates us, wishes he was never born, everybody is mean to him, etc. He has also started throwing things and knocking over things. Consequences do not matter. Rational thinking is gone.

We think we do a pretty good job with the gluten-free diet (I have celiac too) so we just don't know what else to do. It is exhausting.

We were just at the Celiac clinic today (1 year blood tests) to see if his numbers have gone down. They had not gone down much at his 6 month check-up. I talked with his doctor about other sensitivities (artificial color, preservatives, etc.) she didn't know much, but said it was certainly a possibility. But really, since we have been gluten free, he doesn't eat much processed foods at all - rarely anything with food color. She suggested a more detailed food journal/behavior journal.

She is also going to refer us to the clinic's social worker to help us find a behaviorist who might be able to give us some coping techniques. If we don't get this figured out, we are in trouble. I can't imagine him as a irrational teen-ager rampaging through the house. If I learn anything, I'll share it here.

We are also trying to make sure we can tell when he is just being bad and when he is being "gluten bad" . . . do we punish him for behavior that he simply can't control? My husband's fear is that it is not the gluten at all and that our son is psychopathic - then what do we do?

The weird thing is that he is an ANGEL in school. When I describe his behavior at home, they are shocked and in disbelief. If it is truly out of his control, how is he keeping it together at school?

Hang in there . . .

Cara

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Cara - this sounds very similar to my son! He improved after removing gluten but then he kept having episodes. We removed milk an he got even better. The extreme episodes are farther apart and good dys growing in number. But he stills has those bad says and days of just constant irritability. It could be a cc of gluten or milk,...or something else we haven't identified. I have a lot of the same questions and concerns as you.

Our son did see a behavior therapist when he was 4 or 5 and she didn't see any concerns like ADD, etc. she noted he seemed to have some heightened sensory issues but not horribly so.

I am Watching his sugar pretty closely. We see an alternative med biofeedback specialist for his allergies (it helps...whacky but it does) and she noted his sugar reaction (along with milk and gluten) was really high.

Keep in touch. I will be interested to hear what you are able to uncover.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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