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Advice About 12 Year Old


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#1 celiacgirls

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Posted 11 February 2008 - 07:09 AM

Any thoughts about what to do with my 12 year old daughter? She has been gluten-free/CF for almost 2 years. During this time, we weaned her off Lexapro and she was doing better than ever with some episodes of her old behaviour. She was diagnosed with Oppositional Defiant Disorder and Depression. Her therapist and I thought she was headed for a bipolar diagnosis.

I always thought her episodes were due to cheating or mistakes. In some cases, there was some clear gluten or casein cc exposure. Sometimes I was able to confirm that she had been cheating. Many times, she denies it but, let's just say, she isn't known to be honest.

We've had several episodes lately where I am thinking she will need to be put on meds. I really hate to do this because I'm as convinced as I can be that diet is her problem. But there is the possibility that it isn't her only problem. I'm also afraid if she goes on meds that she will take this as permission to eat whatever she wants. I'm also not convinced that if the problem is gluten, any medicine will help. However, I'm concerned her behavior is getting to be unsafe.

I've considered homeschooling her and just not letting her out of my sight for a while to see if I could determine if it was gluten or not, but even that won't work in the long run, if she is determined to cheat.

Any ideas?
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Karen

gluten free 4/06
casein free 7/06
DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free
vegetarian
gluten lite on and off since 1999

All dx'ed by Enterolab

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#2 confused

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    Just cause i cant have gluten doesnt mean im dying

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Posted 11 February 2008 - 07:43 AM

I thought i was reading my own post about my 14 year old. My 14 yr old does cheat all the time and his behaviour is out of control, he is also diagnosed bi-polar and on meds to help that, but it isnt helping that much since he still eats gluten all the time.

I have also thought about homeschooling so i can keep my eye on him 24/7 but i dont think that would work for either of us.

I would love to hear ideas from others since i am at an standstill also.

paula
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gluten, casein and soy free
on low carb/low sugar diet

#3 dbmamaz

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Posted 11 February 2008 - 08:29 AM

Yeah, I can relate too . . . I have an 11 yo who's been on celexa (ssri), and both risperdal and abilify (atypicals) for 2 years, and has been dx'd on the autism spectrum and probaby bipolar. After I started messing around with my foods, I noticed that milk products really seem to bother him. I'm tempted to take him off gluten too, but it just feels like such a big fight and I'm just so tired . . . he agrees with me right now about the dairy, and uses rice and almond milk in his cereal, although he whines about pizza a lot.

My 15 yo girl, on the other hand, seems to have fallen off the deep end (imo) last year. At 11 she started being a screaming meanie a lot, but last year she actually ran away (just walked out of school and walked for 10 miles) and said she didnt know why - and jumped out the window once just because she felt like taking a walk after bedtime on a school night and i'd said no . .. she absolutely refuses any possibility of medication or changing her diet, and talks mostly about saving every penny to get a plane ticket as far away from here as possible . .. She actually requested therapy, and her therapist seems to think there's nothing wrong with her, but I'm autistic. Funny, cuz my son's psychiatrist thinks I'm bipolar II

Part of me hoped that if I took everyone off of gluten and casien we'd all do better, but I'm still totally brain-foggy, emotionally unstable, forgetfull, and having a hard time coping with life much of the time.

So as much as I'd like to think that the diet could cure the bipolar-y stuff, i'm not sure it really can.

As for your daughter, going in to puberty is just hell on them, and they are nuts even if they arent nuts, if you know what I mean. From what I'm going thru w my daughter, I'm feeling like clamping down and babysitting is only going to piss her off more and make her feel trapped. Medicating enough to get her through school might be the best solution, because if she doesnt believe she needs to avoid the foods, there's really nothing you can do after a while. Do you really think the two of you could handle home-schooling without totally being at each others throats? My son, sure (if i had the focus and energy and motivation to actually do it), my daughter right now? NO WAY!

Parenting just isnt as much fun as we thought it would be, is it. I'm sorry your going through all this with your daughter, and hope you find some peace for yourself, whatever path you choose.
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Cara - 42, mom to dd 15, ds 12, ds 4
Off gluten and dairy (and tapioca ;-( ) since 11/07
A.L.C.A.T. test showed over 50 sensitive foods
Celiac panel came back negative.
Regular allergy testing reacted to every inhalant and all but 6 foods.
Slowly adding in foods, started w 19 and now have 25

#4 celiacgirls

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Posted 11 February 2008 - 09:10 AM

I discovered my gluten intolerance after my other daughter was dx'ed by Enterolab. I had been taking an a/d and when I went gluten-free, I didn't need it any more. Now, when I have even a trace of gluten, I feel extremely moody. I never felt that bad before. That is what makes me think it might be gluten for my daughter. She was also dx'ed by Enterolab and since she's been on the diet, I've noticed traces of it will bring out the worst in her, too.

I think we would get along fine if I homeschooled and she was completely off the gluten and casein, it that is the only problem she has. That is the real question, I guess.
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Karen

gluten free 4/06
casein free 7/06
DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free
vegetarian
gluten lite on and off since 1999

All dx'ed by Enterolab

#5 Ursa Major

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Posted 11 February 2008 - 11:37 AM

Karen, I believe that homeschooling for a while would be a good option. It will help you determine if diet is your daughter's problem, since she won't be able to cheat as easily.

Oppositional Defiant Disorder is a crap diagnosis. It used to be called having a difficult kid and you dealt with it. Putting kids who aren't easy to raise on medication to turn them into nice, agreeable zombies makes my blood boil.

I bet that being totally gluten-free will 'cure' her of being like that.

Paula and Cara, I bet there is really NOTHING psychologically wrong with your kids, other than gluten messing with their brains. Those meds they are taking WILL change their brains and possibly turn them in the end (for good) into who gluten makes them now.

Cara, are you diagnosed with AS? It can make it extremely difficult to deal with defiant children I find. With my youngest daughter (16) things were getting so stressful that I could not function at all any more.

Fortunately, my two oldest daughters offered to let her live with them and go to school were they are. She chose to live with the second oldest and her family (which includes an 18 month old and a six month old girl). I moved her two weeks ago, and she has started school there.

She is much happier, enjoys school, has made new friends, actually helps her sister in the household (she wouldn't do a thing for me) and sounds much happier on the phone.

And I find a weight is lifted off my shoulders. I am now able to think again, I am getting creative ideas (I had lost my creativity due to the stress) and am much calmer and happier. It was a good move for both of us.

Do you have anybody in your family who would be willing to take your daughter in for at least a while, who would also enforce a gluten-free diet? Homeschooling her at this point would just get you to where you will stop functioning and lose the will to live (I've been there).

You know, I used to be like your daughter. Being in such a fog mentally that I sometimes had no idea why I did things. Feeling like jumping out of windows or off buildings. Feeling like nothing is real, that reality was a dream, and my daydreams were reality. I bet it was caused by gluten all along (abuse didn't help, of course, and having AS didn't, either).
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#6 RiceGuy

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Posted 11 February 2008 - 12:01 PM

As I hear more about the horrors of meds including SSRIs, I'm ever more convinced that they not only aren't any good, but they do cause more behavioral problems, including bipolar. I know it can be hard for some to walk away from the medical doctors, as they are "supposed" to be knowledgeable. But again, the more I read and hear, the more I know it isn't true. Many doctors actually get multiple visits per week from drug company reps, and they don't do that to promote good dietary habits!

When there's a story in the news of someone going on a shooting spree, I hear afterward that they had been on some sort of antidepressant, psychotropic or other sort of mood altering prescription. But it isn't often mentioned in the mass media news reports, accept when they try to make it look like the person was a "mental case", and use that as the explanation for their behavior. A certain "Britteny" is just one example. She's not unstable. She's on meds. The type of meds we're talking about here operate on the brain in a similar fashion to things like heroin. That's also a psychotropic. I'm sure nobody here actually wants to give their child heroin, or anything even close to it. After all, these things are known to cause bipolar symptoms, suicidal and violent behavior, etc.

Long story short, my advice is to put as much distance between your children and gluten as possible, and wean them off any mood meds with the assistance of a qualified professional. OK, I know it might sound hard/impossible, but I've read countless stories on this site and other how going gluten-free changed everything. Autistic children becoming completely normal, bipolar symptoms disappearing, etc. Once gluten, dairy, and/or whatever foods are responsible are out of their system, I bet you'll see a far more normal child.

Sure, we're all supposed to trust the medical doctors, right? After all, they are the "experts", right? Just ask the fine members of this board how many clueless doctors they saw before figuring out their problems with gluten for themselves. Maybe you feel helpless. Maybe you feel the doctors should handle it, and/or that you are overwhelmed. Again, remove the gluten, and gain a new-found sense of well-being, for both you and your child. Nobody wants their child on drugs, and until the food intolerances are dealt with, your child simply has no hope of a normal healthy life. Gluten IS a drug for someone whom is intolerant to it. Perhaps it will help to think of gluten as a dangerous drug your child is taking. And in such a case, a second drug is no answer. Let's not forget the cautions regarding drug interactions.

Also consider this article:
http://www.ahrp.org/...l/05/03/04a.php

Rest assured, you have the support of every wonderful board member, to help you through the rough spots.
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#7 RiceGuy

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Posted 11 February 2008 - 12:15 PM

Oh, look at this wonderful new thread:
http://www.glutenfre...mp;#entry396667

See what a difference the gluten-free diet can make?! Take courage! You're not alone!
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#8 celiacgirls

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Posted 11 February 2008 - 01:31 PM

Rice Guy, I agree with you about the meds and the doctors. My other daughter has Lyme Disease and that is a real eye opener to the limitations of the mainstream doctors. I worry about the effects of the drugs making things worse. But I also worry about what could happen if she's out of control whether it is from gluten or bipolar.

I was able to get her into her old therapist today who said what I'm seeing now is pretty typical teen stuff. I'm a little skeptical that it is totally within the normal range but we'll try what she says and see how things go.

I think I'm leaning towards home schooling to see if meds are really needed if the situation continues.

Ursula, I agree with the ODD dx not really meaning anything. I think it is a symptom more than the real problem.

It is difficult to feel that you can't really trust a doctor.
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Karen

gluten free 4/06
casein free 7/06
DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free
vegetarian
gluten lite on and off since 1999

All dx'ed by Enterolab

#9 Arpita

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Posted 12 February 2008 - 08:38 PM

No perfect answer. I have been in this situation for the last two years. It is much better than 2 years ago, but is far from perfect. It was crazy. She was loosing herself completely. She yelled at me and everyone all the time. Now, we talk, and she goes off her diet less often. She admits to going off her diet (not every time, but before she lied continually even after being caught). We talk more. She still has problems, but she's learning to manage them slowly and with some failure. Mainly, our relationship is good.

First, she doesn't take any medication. My daughter has partial seizures which manifest as hallucinations, alternate realities/personality stuff, extremes in moods, and so forth, all in reaction to gluten and casein, with seizures being confirmed neurological diagnosis, and that they are created by gluten - "celiac induced" seizures (we figured out the casein, it was actually more often - milk = hallucination immediately). Anyway, we have never done medication due to the horrible side effects such as suicidal tendencies, and the poisoning effect of upping dosing and mixing meds until tolerated and doing it again. We are very thankful, since we have a friend with a child who reacted to seizure medication in an extreme way, and was hospitalized and in pain for 2 years from internal burning from the medication and finally died (they never even looked for gluten/casein; though when visiting, he immediately seized after eating cake and was known to have that problem). Anyway, a lot of the bipolar meds these days are actually seizure meds these days - trileptal, ect. - so I'd look into that carefully.

Second, we homeschool, but I don't monitor everything like I know some parents do. She has opportunity to cheat, but the pressure is less. The pace of life and all the other social and emotional upheaval of school is less. She can handle her reactions at a slower pace and can handle life's problems at a slower pace. She doesn't have to face the food issue EVERY DAY, all day, and in a mean way. Now she can handle it weekly, or less if we decide its needed. And, yes, she cheats, and she feels it, and I think still hides symptoms, but tells me a lot more often now. Mainly, we get along so much better. The emotional upheavals are there, but not against me. I'm really proud of her in a lot of ways. She wants to go back to school. That's hard, but she still needs this slower pace to have the opportunity to stay on the diet and become the best of who she is.

Third, I stopped talking about food and food reactions as often. I stopped trying to figure out whether each emotion of hers was a reaction or not. Basically, I couldn't and the stress of it was overwhelming us both. I stopped feeling angry at her for going off the diet, when I was working so hard and thought it was a problem with a new food brand or something. Now I accept that her emotions could be a number of things, and that we need to deal with them. We need to deal with the person not just the cause. No matter what happens, we still have to deal with "who we are" when we react to food because of cheating or accidental exposure.

Also, I keep in mind, that I really can't control her choices, but I can control her environment. And, I choose how much to do that. At this time, she home schools, goes to classes and activities without me there, and does things with friends without me there -- but all at a slower pace than she did when at public school. New friends come to our house; freedom depends on her track record with a certain friend. I have friends who monitor their every kid's action and are with them every moment -- this is also an option. But don't think that if you do this, you are eliminating cheating, they can have someone sneak them something while your head is away -- so I don't think you can ever really perfectly answer the question "is this food?"

This is such a hard place to be in. Your daughter's mental health, and knowing that once she cheats, she is less able to avoid it again, because her mind is affected. But this is the nature of it, we have to learn to say "no" and learn to say "I'm sick," and we have to learn to do this when we have already been glutened! Hang in there. I hope this helped.
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#10 JustMe75

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Posted 13 February 2008 - 06:02 AM

Does your daughter think she feels / acts better when she is off gluten? Nobody wants to be angry, sad, or depressed. It is easier to not want to cheat if you can actually see that the diet is doing something. My 15 year old daughter used to be so moody she was unbearable. She wasn't too defiant, but angry, sad, depressed and she didn't know why. She started the diet because she has a lot of stomach aches and she saw that it helped mine. Its been a month and a half and her tummy isn't all the way betterr but we have noticed her moods are so much better! She hasn't cheated but last week accidently ate sour punch straws and after eating them she read they have wheat in them. Well her stomach wasn't too bad but a day later (and for three days after) she was so depressed again. It took a while to put the two together but once we realized that it was an affect of gluten she is convinced not to cheat and be more careful on the diet.

Now my 11 year old daughter doesn't have such noticable symptoms, but she has a hard time concentrating and has a rash that won't go away. The doctor suggested we try the diet for her too. She is driving me nuts about it. Since she doesn't see a noticable difference she can't stick to it. I know if I could find something that is a problem for her (not me) that is better gluten-free, I could convince her she needs to stick to it.

Maybe if your daughter agrees she doesn't like the way she feels you can give her a time frame to stick to the diet and see if she notices that she feels better. Try not to make it about her being bad, they think we have a problem with them, not that they have a problem. They really don't care if they are good for us or if they make our life eaiser but like I said earlier, everyone wants to be happy and if she realizes she is happier gluten-free she won't want to cheat. If she agrees to give it a shot remind her along the way how much better her mood is. My daughter didn't notice at first and she said she was looking back at a journal she kept last year and remembered how sad she was all the time and how tired she always felt. That, plus I would say things to her about it here and there, not to dwell on it, but positive reinforcement.

Good luck. I hope it gets easier for you. Raising kids is hard enough. Add this to it and it can seem impossible. My aunt told me that time doesn't age us our kids do! ;)
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#11 celiacgirls

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Posted 13 February 2008 - 07:30 AM

My daughter knows she feels better when she is gluten-free/CF. I think she is pretty compliant most of the time. Her behaviour is just so extreme when she isn't or when there is a mistake. I've been taking the approach that if we could get all the gluten out of her diet, we wouldn't have these issues, but I am realizing that we are not going to be able to get it all completely out. Even if she eats only what I make, I will end up making a mistake at some point. She has to learn how to handle her anger even when she has a diet mistake.

I did take her back to her therapist and she said her behaviour is typical of teenagers. :o

I agree that I do need to stop trying to tie everything to a food mistake and focus more on handling the emotions.

It helps knowing others are going through this, too.

I really don't want to put her on meds. I was having a weak moment. :ph34r:
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Karen

gluten free 4/06
casein free 7/06
DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free
vegetarian
gluten lite on and off since 1999

All dx'ed by Enterolab

#12 RiceGuy

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Posted 13 February 2008 - 10:16 AM

My daughter has partial seizures which manifest as hallucinations, alternate realities/personality stuff, extremes in moods, and so forth, all in reaction to gluten and casein, with seizures being confirmed neurological diagnosis, and that they are created by gluten - "celiac induced" seizures (we figured out the casein, it was actually more often - milk = hallucination immediately).

Have you looked into the possibility of an intestinal yeast overgrowth? Seriously, I wouldn't be surprised, though obviously I don't claim to be any sort of expert on the issue. Just that as a kid I experienced some horrid effects from intestinal yeast. I call them the yeasty beasties, and for good reason.

There are some simple things that can help, like caprylic acid capsules, which is a fatty acid that kills bad yeasts. Here's a product that contains some of the most often recommended things: http://www.nowfoods....mp;item_id=2790

I've also heard of a product called Florastor, though I have no idea if it works.

Now, the tough part might be limiting sugar intake. Actually, now that I think of it, I knew someone who had a child that would go completely out of control from sugar. While Stevia is a great alternative to sugar, prepackaged sweets are another matter. I didn't have trouble eliminating sugar, since it was my own decision. It might still require some willpower though, since the yeasties can and do make one crave the things that feed it.

Whether any of this applies to your child I do not know for certain, but I think it's well worth considering.
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.


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