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Member Since 30 Aug 2007
Offline Last Active Jun 22 2008 09:03 AM

Posts I've Made

In Topic: Advice About 12 Year Old

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.

In Topic: How Do You Tell The Difference Between Normal Bad Behavior

31 December 2007 - 01:37 AM

Oh, also, I bet in a year, your child will no longer be difficult. It was amazing for us, she changed like night and day, it was really amazing...

In Topic: How Do You Tell The Difference Between Normal Bad Behavior

31 December 2007 - 01:34 AM

My 13-year-old daughter has had celiac for almost 4 years, and myself for three. Its a hard road, this food causes behavior health thing, a road that can be hard others to understand as well. First of all, it will become more obvious over time. I could tell the best after about a year after diagnosis. As she has become a teenager, it is harder to tell since the hormones and because she keeps things to herself. Usually, I just sense it, when behavior interferes with everyday functioning, when I can see it in her face -- bags, pupils, and a certain type of hyper-ness/depression that has a different look to it. But I find it hard to tell the reaction in myself, because my reactions are so delayed, and I have problems with many foods. There were years, where I was concerned about this a lot -- knowing the difference -- but it can drive you crazy. Really, in many ways, you need to respond similar to her no matter what the cause, because the world will. Also, because she'll never be free of having accidental gluten reactions, and she will have to learn how to manage, accept, talk about, and deal with the behaviors and emotions no matter what the cause. It's nice to think it is always obvious, and that we can just "wait" until the reaction is over. But we also have to deal with who we are and how it affects others, no matter what. Focus on helping her get the tools to manage the behavior and emotions as much as possible. At the same time, keep doing the best to take care of the health issue (no gluten), and trust that most of the time you will know. Even if the blame is food, there's one person having a reaction, who is angry and talking, and going for a walk, and another who lets that anger take control and become aggressive physically or verbally. Keep it up!

In Topic: Anti-diarrhea Medicine

17 October 2007 - 12:13 AM

Thanks everyone!

In Topic: Calling All Bakers! I Need Your Input On The Best Flour Substitution

08 October 2007 - 05:58 PM

I prefer to substitute sorghum for everything. I can't tell any difference in the taste or texture, like I do with rice flours. You can get it from Bob's Red Mill, or cheaper online from Twin Valley. It is best to add 1 TB or more of corn starch for each cup of sorghum flour. The same mix above (with the tapioca & corn starch) can be used; just use sorghum rather than rice flour.

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