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I Know I'm Doing The Right Thing...but So Frustrated.


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12 replies to this topic

#1 lindsayanne0

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Posted 02 April 2012 - 04:04 PM

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. Heís also gone through a number of health issues along the way including bronchial issues, asthma, severe sinus issues, chonic bouts of constipation and also the opposite, etc.

My mommy gut has long told me (especially after reading ĎIs this Your Childí by Doris Rapp) that my son was reacting to something his was eating. But I could never get a doc to agree with me. I thought it was milk for the longest time. Only a few months ago did I eliminate wheat. This was after eliminating for myself and seeing great results, as well as, a nutrionist and biofeedback specialist recommending it for him. I hate myself to not trusting my mommy gut and trying it much sooner than this. It does help and the good days are growing in number. And Iíve convinced my doc to send the paperwork to his school asking them to withhold wheat/dairy from his diet. I pack his lunch and snacks and his teacher is great and letting me know when they will have celebrations etc... But he still has reactions here and there and sometimes its so hard to determine without a doubt what it is he is reacting to! Is it something wheat? Dairy? Is there something else I havenít pinned down yet????

I notice now that when he does have something he reacts to, his reactions are like magnified. The mood swing is more extreme, the temper tantrum is now a rage fit, the yelling is now screaming and telling me he hates me. It is so emotionally taxing....I feel so exhausted afterwards. And then I constantly question myself if Iím looking for something to blame his behavior on. Does that make sense???

He had a meltdown yesterday that I have yet to pin down what it was in reaction to. And heís been incredibly congested for two days straight. The only thing I can find is his Aunt mistakenly gave him a Símore on Friday night at a bbq party OR I noticed over the past few days, heís had Udiís bread more often than usual. Iím lost. Itís so frustrating when the cause isnít staring at you in the face. Yes, the Símore could be the culprit...but he usually reacts within a couple hours instead of a couple days. Just donít know. This is SOOO FRUSTRATING!

When he is starting to have a reaction, the tops of his ears turn red...itís like his indicator button. Now if I could just locate the ďthis is what Iím reacting toĒ button!
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#2 Skylark

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Posted 02 April 2012 - 04:32 PM

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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#3 mommida

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Posted 02 April 2012 - 06:23 PM

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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#4 mamaupupup

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Posted 02 April 2012 - 09:52 PM

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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#5 dilettantesteph

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Posted 03 April 2012 - 04:22 AM

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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#6 lindsayanne0

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Posted 03 April 2012 - 06:40 AM

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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#7 kareng

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Posted 03 April 2012 - 06:49 AM

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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#8 Skylark

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Posted 03 April 2012 - 06:50 AM

cross-contamination :)
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#9 lindsayanne0

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Posted 03 April 2012 - 07:34 AM

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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#10 GFinDC

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Posted 03 April 2012 - 08:28 AM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 Skylark

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Posted 03 April 2012 - 08:59 AM

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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#12 Cara in Boston

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Posted 03 April 2012 - 09:38 AM

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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#13 lindsayanne0

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Posted 03 April 2012 - 10:12 AM

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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