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About celiacgirls

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    Austin, TX
  1. 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. 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.
  2. 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.
  3. 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.
  4. 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?
  5. I have my hair professionally colored with Wella products. I called and they are gluten free but they can't guarantee they are free from cc because they don't know what was bottled right before their products.
  6. My whole family has done the testing and the results seem accurate to me. Most of our doctors think it isn't credible but they don't really need to believe it. They do honor my requests for gluten free meds. I can't think of any other way I need them to believe in it.
  7. I finally got my daughter's IGeneX test results back. They are: IGeneX IgM Result Negative CDC/NYS Result Negative 18 - 22 - 23-25 IND 28 - 30 - 31 - 34 - 39 IND 41 ++ 45 - 58 - 66 - 73 - 83-93 - IGeneX IgG Result Positive CDC/NYS Result Negative 18 - 22 - 23-25 IND 28 - 30 - 31 - 34 IND 39 + 41 +++ 45 - 58 - 66 - 73 - 83-93 - I'm interpreting this as positive enough to feel good about pursuing Lyme treatment. Even though she has a lot of the symptoms and did have that bite, there would have been more doubt in my mind if this test had been negative. We have an appointment on Jan 22 with the PA of the LLMD in Louisiana and another appointment in late Feb. with the LLMD in Missouri. The one in Louisiana is closer and actually on our insurance plan but we wouldn't ever see the LLMD, just his PA. I'm not sure how I feel about that so I'm getting a second opinion from the one in Missouri. I'm going to try to get our pediatrician here to talk to one of them and start her on antibiotics now. She hasn't been feeling well for several months and has only been going to school 1/2 days for most of the school year. I am glad to have an answer and a direction. Thank you for posting this thread. I'm not sure I would have considered it if I hadn't seen it here.
  8. I use Pamela's bread mix all the time. My kids take their sandwiches on it. I don't really eat any bread now but I will eat this in French toast and in rolls. Today, I made pigs in a blanket with this mix and my gluten eating in-laws liked them. It must be good!
  9. The last time I looked, Tostitos corn chips are made in soybean oil. I've also seen the "may contain traces of . . ." statement on some chips. We also avoid casein and soy in my house and there are only a few types of chips I will buy.
  10. I'm glad you told me this. I was thinking it could be one of many bacteria and hard to pin down or easily dismissed by a doctor.
  11. I would eliminate all 5 for a while, maybe 6 months, as strict as you can, including not eating out or anything unknown. Probably along the way, you will have accidents and see the effects. After you feel he has not had any of those foods for a while, you could try introducing one at a time very slowly to see what happens. I know this is not what you wanted to hear. In my experience, with myself, the effects of a gluten mistake can last 2 1/2 weeks. This is from cross contamination in a restaurant, not deliberately eating any. I feel worse now when that happens than I ever did before so I think if you have been eliminating these foods and then letting him have it 2 times per week, he could be worse from that. I also think if you don't eliminate every trace then you won't see what how it is affecting him. In my experience, Enterolab has been mostly right. The only possible exceptions are my casein result was a 10 ( 10 is positive) and my daughter's 9 on soy (10 is positive). I think my daughter does have a problem with soy and I am not convinced totally that I have a casein problem, but I don't eat it anyway. I have tested milk a few times and possibly have had a reaction but it is nothing like my gluten reaction. We have been on this diet for almost 2 years and I am scared to let them test their intolerances because their behaviour is so bad when there have been mistakes. I am convinced for them it is a problem. You may discover the same thing as you go along. I would not reintroduce gluten in any case in your son due to the known long term effects of gluten. The only reason I would possibly try the other ones is that it is so restrictive to do 5 major foods and as far as I know, Dr. Fine is the only one who thinks they need to be avoided forever.
  12. Thanks, Donna and Carla. I will check out that site. I think there is enough reason to suspect Lyme in my daughter that I will still call the LLMD to get it ruled out, regardless of what the Igenix test shows. Would a positive band 41 and 45 indicate an infection of some sort, even if it isn't Lyme? I'm wondering if antibiotics would help her anyway. She has had a low grade fever and headache for months. No one has been able to find anything.
  13. I have results from a Western Blot done by the local lab. We also sent one to Igenix but I don't have that back yet. The doctor wanted to compare them. According to him, this test means my daughter has been exposed to Lyme in the past but it doesn't necessarily mean it is active now. He is opposed to treating with antibiotics and thinks we should try to build up her immune system. Her results are: Lyme Ab IgM by WB: P41 Ab. Absent P39 Ab. Absent P23 Ab Absent Lyme AB IGG by WB: p93 Ab. Absent P66 Ab. Absent P58 Ab. Absent P45 Ab. Present Abnormal P41 Ab. Present Abnormal P39 Ab. Absent P30 Ab. Absent P28 Ab. Absent P23 Ab. Absent P18 Ab. Absent The doctor also said that other things could cause those antibodies. Would this be considered positive by an LLMD?
  14. I use Vance's DariFree when I need powdered milk. I order it online since I haven't seen it in any stores where I live.
  15. You do have to be eating gluten for the testing to be as accurate as possible. Even then, a negative result doesn't mean it is okay to eat gluten. Personally, I wouldn't do it. You could do Enterolab testing which I think would be enough to get the tax break. The tax break isn't very much anyway, if you are in the US. You can deduct the difference in the price of the gluten-free food over regular food after your total medical expenses exceed 7.5% of your adjusted gross income. Only if you itemize. I think the increase in cancer from celiac disease is mostly from not being on the diet. You are on the diet so it won't matter. Even if it is not from eating gluten, the treatment for celiac disease is the diet. There isn't anything else you can do. My mother went back to eating gluten for a while to do the test and it was negative. She has never been able to get back to the very strict level she was at when she started.
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