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amysmom

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  1. I agree with everyone else, you should definitely have her tested for Celiac. We did the blood test and endoscopy and I am glad I did as they have been following her blood levels to monitor her gluten free diet.

    My daughter had the stomach pains and vomiting prior to going gluten free. She would have hours of sharp stomach pains and then vomit several times and then seem as if everything was completely fine. We have been gluten free since January of this year and had an episode where she was glutened last week which followed with severe pains and vomiting again. Also, prior to being gluten free she had problems with seizures, has been seizure free now for 4 1/2 months without meds. (Prior to that she was seizure free for 1 1/2 yrs on meds) She also had the yellowing teeth and fatigue. She needed at least 12 hours sleep a night and if she lost sleep from a late night out (and I mean only slightly late) it took her several days to a week to recover.

    I have been amazed how much she has improved over the past 9 1/2 months. It just seems to keep getting better.

    I really hope the gluten free diet can help you and your daughters!


  2. I know how you feel,it is very upsetting. My daughter is also 9 and we have been gluten free since January. After we started the gluten free diet everything was improving and then she began having increased symptoms of reflux, heatburn, indigestion and since she is also diabetic her blood sugars were haywire. I did find out that until the small intestine and tips of the villi heal, she has been lactose intolerant. I kept her away from dairy products as much as I could, have used lactose free and lactaid tablets when necessary with great results. However, she was glutened this past weekend. My big mistake, we were out and I bought her french fries that I believed were in a gluten free fryer, but was wrong. Within an hour she began with bad stomach aches and was vomiting a few hours later. Then she was completely fine. I have learned from other members and by experience that after you go gluten free, when they are exposed the effects seem faster and worse than before. Maybe someone else could comment on whether or not that is the case, and if so, she may be getting small amounts of gluten somewhere.


  3. I use the gummy vites (Says gluten free on bottle), vitamin water (read the lable they have different vitamins per flavor and does seem limited), also I use pasta made with quinoa which is very nutritional. My daughter does eat a variety of fruits and vegetables, but it is still difficult sometimes. I have melted cheese on the brocolli and this has helped. And believe it or not I would put a vegetable on my child's plate (a reasonable portion) and told them if they didn't eat it I would give them more. I got the tip from a friend and it really worked.


  4. You questioned dish detergent. I changed dish detergents a few weeks ago to an environmentally friendly dish soap and it made my daughter very sick. After several weeks of her being sick I looked at the ingredients and the second ingredient is plant-basedd cleaning agents. I called the company, they took my information and promised to get back to me. I never heard, rewashed all my dishes with Palmolive and haven't had any more problems. Also over the summer she had a wart on her foot and I used the clear away disks to put on it and it caused her to have difficulty swallowing.

    Good Luck - it is very frustrating.


  5. I am new to the gluten free diet, 8 months now, but I was wondering if maybe it had anything to do with vitamins. My dietician, I met with her at my daughter's first diagnosis and knew more about the gluten free diet than she did, but she did tell me that it is very important to make sure my daughter gets her vitamins. One because at the beginning she has malabsorption issues and later because of the change in diet a lot of foods that are fortified with vitamins are restricted. With a young child, a picky diet or both can add to these problems. Good Luck I wish you the best because I know this is so frustrating.


  6. I don't know if this will help or not, but when my daughter had her endoscopy they found out the celiac caused gastropareisis. It takes longer for her to digest her food. Before we went gluten free every so often she would wake in the middle of the night with excruciating stomach pains that lasted for a few hours and then she would vomit and be fine. Once it happened I know she was eating fresh coconut and her body could not digest it so it had to go back out. The gluten free diet has stopped the vomiting, but she still has problems with heart burn, indigestion and reflux. After she was diagnosed, we had to watch her diet for any foods that were difficult to digest - fresh fruits and vegetables, etc. the fruit skins were bothersome. As we proceed with gluten free diet, her symptoms slowly improve. We have been gluten free (except for a few mishaps) for 8 months now. Good Luck and I hope he feels better soon.


  7. My daughter has diabetes as well as celiac. I would never trust our cafeteria and it is wonderful that you can. When I pack Amy's lunch I put an index card listing all the things in her lunch box and the carb count for each item. The nurse then reviews what she ate and calculates the total. Example: If she only eats half her sandwich she only add half the carbs if she doesn't eat an items the carbs are not added. Before she was diagnosed with Celiac and bought hot lunch, we took it from lunch to lunch, and the nurse kept a log of all the items on the menu along with their carb count. Everytime she ordered something different we calculated the carbs for serving and entered it on the log. The proportions were always the same so when she bought lunch it was easy to calculate the carbs. I also purchased a carb counting book that stays with her diabetes items, just in case of any questions and I haven't used it in awhile but calorieking.com was always a great resource.


  8. Today was the second day of school and second day of school lunch. I must say I am very impressed with the lunch ladies and how they are handling Kaylee. They have been great.. I've been in the kitchen both days to see how they are doing everything. They are taking steps to prevent CC, I did supply them w/ Kaylee's bread because she's very picky about that. When they have a cookie for a 'treat' They have a supply of gluten free treats that Kaylee can pick from including icecream, posicles, and cookies. I also gave them gluten free whoopie pies for that extra special treat or birthday party. Kaylee is LOVING having the school lunch. The ONLY thing that has been difficult is because she also has type 1 diabetes we have to have carb counts which we haven't had these past few days (they've been totally it for the entire week, doesn't work that way, I need it broken down by item per day). So I've been helping them make an educated guess and doing the best we can. But so far I've very happy that they are making this effort for Kaylee :)

  9. I don't know how long it has been since she was tested but it took awhile for me to have my daughter diagnosed. She was diagnosed with diabetes when she was 5. At that time she kept complaining of stomach aches and the doctors wrote it off to sugarfree products. A little over a year later she began to have seizures with no explanation as to why. I stopped using all artificial sweeteners and soon after. She started waking up with stomach pains and vomiting and after she would vomit she would be fine for about another 3 monts when it would happen again. I asked the doctors to check her for Celiac and they said they checked her when she was 6 and she normally would be checked every 5 years. Even though the doctor didn't feel like her symptoms were significant they checked her anyway. It came up borderling so they rechecked her 3 mos later with more blood tests that the first and her antibodies were extremely high. She finally had her biopsy and diagnosed at the age of 8. She has been gluten free for 7 months and has been seizure and vomit free since. I hope you get an answer


  10. I am concerned about the school supplies and also the soaps they use. I switched dish detergent a few weeks ago (buying an environmentally safe dish detergent) and my daughter began to have alot of problems. I didn't think to check the ingredients, but it had plant derived cleaning agents and after doing research found out they put wheat germ oil in the dish detergent to soften your hands. Now I have to worry about the hand soaps she uses before eating lunch.