Recently Diagnosed 11 Year Old Daughter Is Losing Weight

[jenn42]

My daughter was diagnosed a month ago by a positive blood test that she is Celiac. She's 11 years old and has always been a wonderful eater. About 2 weeks ago I put her on a gluten free diet, to the best of my newbee knowlegde. She's adjusting very well. Since we are in the first stages of learning everything, I have not been 100% at keeping gluten products away from her. The other people in my family are not on this "gluten free" diet so we do have items in the house that have gluten. My main concern lately is that she started off at 87 pounds after Christmas and is now down to 83 pounds. ( She is on ADHD meds too, so that may have something to do with it as well. ) I also am confused about cross contamination. Do all Celiac diagnosis have to be concerned about cross contamination? I put her on gluten free vitamins, she takes those every morning with her adhd meds. She also has been telling me that her bowel movements have increased in quantity, at one time only, every morning same time. Is that normal? Reading this back, it sounds like I'm all over the board. I'm just so confused. I have so many questions. I just want her to be healthy. We do have an appointment with a Pediatric Gastro next week and hopefully a nutritionist can help. I welcome any suggestions and answers from personal experience. Thank you!

[BeckyGoNecky]

Hearing this reminds me of a few stories that I have heard in my celiac support group. The first thing that I read is that she had a positive blood test for celiac disease. Did she also have a positive biopsy?? I have severe celiac disease and when I was being diagnosed my blood test came back negative. My mother had a positive blood test but when she had the biopsy it was negative. The only true way to be diagnosed is to have the biopsy. If she doesnt have the biopsy, in her future doctors can turn her away because she hasnt had the biopsy. I have heard of this happening to many people. I have also experienced this myself so I just want to pass this on so that there are no problems in the future. With the weight thing, when people with celiac disease starts on a gluten free diet, they tend to either loose quite a bit of weight, or gain. As long as she doesn't loose too much weight she should be okay. You have to remember you are taking out a lot of carbs from her daily life. The cross contamination is a big deal for everyone who has celiac disease. For me if I eat a crumb I am in pain. Where other people wont have any symptoms from something that small but it is still doing a lot of damage to her body. A crumb can cause her villi in her small intestine to lay down so that she wont be able to absorb any nutrients. It is very critical to do the best you can at home to make sure you dont get gluten in her diet because when you go out to eat its easier to get it there. So that means she would have to have her own jar of peanut butter that no one else uses, (I write gluten free all over mine) and you have to use different utensils to cook your meals, and then hers. Also another thing that has been helpful for me is to keep all of my special gluten free foods and cereals on the top shelf of the pantry and fridge. I hope this was helpful. Good luck!!

[jenn42]

Thanks for the information. The biopsy is scheduled this week. She was gluten-free for 10 days and then went back on last week for the bx, gained all 5 pounds back in 3 days. She hasn't had any problems...feels great, she says. We will hopefully get confirmation soon so we can start the gluten-free diet.