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About bnsnewman

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  1. Good for you for speaking up! My daughter's GI doc told me to give her more fiber. These docs must have some sort of book of lines to go to when they don't have the answer! Keep us posted and let us know how it goes. Natalie
  2. We have been working really hard at being gluten free for a couple of weeks now. My daughter (she will be 6 in July) has been pretty resistent to the new changes, but she does see what happens when she eats something with gluten in it. She broke out in hives yesterday, and we have been up since 4 am because she started itching in her sleep and it woke her up. I am giving her Benadryl and using Caladryl as well. She is not running a fever, but she started wheezing a bit when she went to bed last night. Is this a common reaction to getting off the gluten, or trying new gluten-free foods, or just a random occurance? Has anyone had any similar experiences with their children? Oh, as a side note, I talked to the assistant principal at school on Friday, and she told me that the school district told her that kindergarten doesn't have the same requirement for a specific number of hours as the other grades do. And the bottom line is, my daughter will not be held back for next year! I almost cried with relief when she told me that. She did say though that next year we will have to fill out the papers for the plan 504, but told me again, they don't have many guidelines for dealing with this. Sigh. At least it's a start. Natalie
  3. I'm dealing with the school and trying to have gluten sensitivity and the resultant illness when she consumes it recognized. My daughter is in kindergarten and I just found out yesterday that she is on the list to be held back due to excessive absences. The assistant principal agreed it's got nothing to do with her academics, but solely with her absences. She suggested we go forward with Plan 504, but at the same time, said that most of the cases that she deals with regarding 504, are for ADD, and admitted that she is not sure how to proceed with my daughters case. As more and more children are diagnosed with Celiac and gluten sensitivity, the schools are going to have face this. Unfortunately, it looks like in a way, we are the pioneers Best of luck to you and keep us posted! Natalie
  4. Hi Beth, first of all, congrats that everything showed up well on the CT scan! I am new to the board, but the thing that I have noticed is that each person, or case, seems to be unique and each person, or parent, makes decisions based on many things. One of those things being your gut instinct (no pun intended!). Rather than having more tests done at this time, since your son did test positivie for corn allergies, why don't you try to eliminate all corn products from his diet. Make notes and observations for a month, and see how he is doing. If at the end of that time you are not satisfied that he has made improvements, then maybe it would be time to have the scope done. I hope he feels better soon. Natalie
  5. My sister suggested to me over the weekend that I get one for my daughter (my sister is an R.N.), and the more I think about it, I agree. I was wondering how many of you have children that wear these?
  6. My daughter has not technically tested positive for Celiac, but she did test positive for gluten sensitivity (as well as casein sensitivity), and she has two positive genes for gluten sensitivity. In trying to explain all of this to both sides of the family, as well as friends and teachers, what is the best way to explain this? Please tell me if I am wrong, but I thought that the difference between Celiac and having a sensitivity to gluten is the intestinal damage? That Celiac will cause intestinal damage but that a sensitivity will not necessarily cause damage? Though she sure does get sick from consuming gluten. My sister printed out the list of Celiac safe foods and not safe foods from this site, and when I showed it to another family member over the weekend, she said that the list was for Celiac and not gluten sensitivity. Ok, true. Can and should people with gluten sensitivity follow the same guidelines as people with Celiac? And we are having our daughter allergy tested for gluten and casein. As it stands right now, her docs don't accept the Enterolab results stating she is gluten sensitive. Though I have so much info in my head, that I'm not even sure what the difference between an allergy and a sensitivity is anymore. Thanks again. Natalie
  7. Hi, I don't have any advice for you other than to let you know that my daughter is the same exact way. She is in Kindergarten this year. She literally misses at least one day a week of school every week. She either is so exhausted that is is impossible to get her up and get her moving in the mornings, or she is sick, or her stomach hurts. It seems like her immune system is non-existent and she picks up everything. I have received a letter from the school a couple of times this year telling me that she has excessive absences and tardies. They've told me that technically she has missed enough days this year to be held back, though like your daughter, her grades do not appear to have suffered. I talked to the principal and the asst. principal and her teachers, and they are all aware of what is going on. The advice that the asst. principal gave me was to fill out some paperwork that states that she has special needs (The specific plan has a name, and I'm sorry, I don't remember what it is called right now. It is a special needs plan but one that covers children with different special needs, like having ADD, etc.). If those papers are in her chart, it will protect her in a way. Our rule here too is no school, no playing. We are learning that we need to bend that rule a bit to accomodate our daughter, as she will be very ill in the morning, and fine a few hours later. We are learning that this is what happens with her when she eats gluten, and we are all adapting. I hope your sweet little daughter starts to feel better soon! Natalie
  8. Jokamo and Lonewolf, thank you for being so welcoming. I feel like such a fool, but cried some more when I read how warm your responses were! All of you have been so fantastic, and I have never been on a message board that was this warm and encouraging. Thank you all again. We are making progress in baby steps, and at this point, I will take what I can get! It seems like every day I am ordering some gluten-free products on line, and I found Envirokids cereal in our grocery store and bought 3 different flavors, as well as their crispy rice bars. I also found some rice chips, and surprisingly, she likes all of them! Yay! My husband and I were talking and decided to clear most of the chips and crackers out of the pantry, and replace it with gluten-free foods. And the reason we decided to do this is we feel it might encourage our daughter to try the new foods, and give them another try if she doesn't like them the first time. I think it might be easier for her if she sees that the whole family is eating that way. And I've also realized that our oldest daughter has been complaining of stomach pains after she eats for a while now, so I believe going gluten-free will help all of us. Especially because both my husband and myself carry the gene for gluten sensitivity. Our families have been wonderful, and Nana wants me to give her a list of safe foods and she is going to buy her own gluten-free snacks to keep at her house for when the kids come visit. I'm not sure if it's because my daughter has had stomach pains for so long (now the stomach pains are accompanied by headaches, and that is fairly recent and worrisome. I've also noticed that she gets sick much sooner after consuming gluten than she used to) or what, but a big problem that I have is she sometimes just doesn't each much. And she is already thin to begin with. My hope is that in time, as she feels better, her appetite will improve. And even though her test came back for a positive casein sensitivity, I decided to take the advice that some of you offered, and to go just gluten-free for now. Trying to do everything at once was so overwhelming. The only other test or doctor appointment that we have coming up is allergy testing for gluten and casein. We are not going back to the GI quack, and I am not going to request a scope/biopsy. I have the blood test and the stool test to tell me what I need to know, not to mention my instinct. So we are going gluten-free full steam ahead! Thanks for letting me ramble (maybe I shouldn't post late at night ) and like always, keep your fantastic food suggestions coming! Natalie
  9. Fever?

    My daughter has the same reaction as Nikki2003, she runs a low grade fever, is lethargic and lays around a lot. She will also tell me that she is getting sick when this happens, that she doesn't feel well.
  10. I agree, it is a great book. It is one of the first books that I bought, plus it is spiked with a sense of humor which goes so far and is much needed at times! I bought mine at Barnes and Noble, and found it in the diet section.
  11. As always, you guys totally rock! Thank you for the suggestions, and keep 'em coming if anything else comes to mind! As far as the teacher heating up her lunch, they won't do it because then they will have to do it for everyone. I understand, and that's ok. Today we tried gluten-free hot dog buns and she hated those. With dinner, gluten-free potato rolls - she hated those. I found some gluten-free cereals at the store today and bought those. One of the cereals is similar to peanut butter crunch, but gluten-free, and her comment about the cereal was something along the lines of "it's tortuous". Big sigh. The only things that she actually likes so far are Pamela's cookies and the KinnikKinnick cinnamin sugar donuts (and they have 5 grams of protein per donut!). Regarding the suggestions for pizza - where do you get gluten-free pizza dough, or crust? Thanks tons, Natalie
  12. Does anyone have any suggestions on what I can pack in my daughters' lunch? She is in Kindergarten and is known for being a huuuge snacker. We always used to joke that she was on the Anti-Atkins diet (and we always wondered why she had stomach pains). She loves carbs and we have a heck of a time getting her to eat protein. So trying to switch her diet over to gluten-free products has been frustrating for all of us. Does anyone have any safe go-to snacks that they can suggest also? We both thank you! Natalie
  13. Thanks again to everyone for their helpful answers. I'm still confused beyond words and feeling extremely overwhelmed, but so glad I found this board! You are all so helpful and friendly. Funny enough, we did get a Zojirushi bread maker over 10 years ago, but since we have baked non gluten-free goods in there, I won't use it for my daughter. I ordered some flours from Bob's Red Mill and bought some bread mixes at Whole Paycheck, er, Foods, and am going to make those in the oven. I bought a loaf of gluten-free bread and my daughter did not like it, so I am really hoping that she likes the ones that we make here.
  14. Fiddle-Faddle, BTDT means Been There Done That Thank you all so much for your responses, it truly did bring tears to my eyes. And yes, the crying...what can I say, you all seem to know how I feel. I'm getting such fantastic pieces of advice from you guys, again, thank you. It means so much to me, especially coming off of my dismissal from the doctor. And the sense of humor goes so far too; I burst out laughing at the Whole Paycheck comment! It is so true! I just ordered a bunch of gluten free products, things like flours, cookie and cake mixes. I do have a bread machine that we have used for years, but I am going to go out and buy a dedicated gluten-free bread machine and start making my own. If a person has a gluten sensitivity, does that mean that they can't use certain lotions, etc.? Yikes, so much to learn. Natalie
  15. Heidi! A real live person! Thank you so much for responding to me. I feel so desperate and confused and lost. I bought 4 books on a gluten free life style last week and am going to be trying some holistic remedies as well. Why is it that doctors seem to be so threatened by Enterolab? It's almost as if they get mad that they didn't come up with the test. When you take matters into your own hands, they just don't seem to like it. I'm sorry to hear about the mis-diagnosis with your son. I can understand your frustration, to say the least. I'm going crazy trying to omit everything at once, and feeling like I'm contributing to my daughter not feeling well when I prepare a meal that is not gluten or casein free. I tend to have the attitude of "I want it all fixed, NOW" and that is not very helpful right now. Thank you so much for letting me know that I am not alone. Natalie
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