My daughter was just diagnosed…I'm overwhelmed!!!
mommabeansParticipantmommabeans March 16, 2016 at 10:55 pm #14318
I know that the beginning is the hardest and that it will get better but right now all I do is cry. My daughter is 14, she is a sweet kid and we have a GREAT relationship. The problem with that is that she is taking all her anger out on me. I know she does it because I am closest to her but it just breaks my heart.
Finding foods she likes has been near impossible but it has only been 3 days. Her TTG’s came back extremely high (85) and it seems like getting her below 4 is a lifetime away.
I just want to make this easier for her. I want to find foods she can enjoy. She was a total foodie before this. She loves to cook and try new recipes but she hates the new ingredients before she even tries them. I am hoping this is just the initial anger phase and she will move out of it….just like my guilt I feel of not believing her stomach aches were real for so long. I know the guilt will move on and I will enter a new phase too.
Please tell me I am not the only mother that has gone through this. I feel so lost and alone right now.
tanstaaflParticipanttanstaafl April 12, 2016 at 10:52 am #14433
I’m not a mother, but a daughter, and I remember doing the same thing to mine. Any solution she came up with, I would fight. I didn’t even know why, I was just so determined to be in despair, I felt insulted when someone tried to give me hope, I guess. Thankfully, the gluten wore off and when I returned to normal, I was more grateful to her than ever.
She took me to the gluten free section of Wegman’s and we brought every type of cookie there (the lemon bursts they sell in bags are amazing, by the way) and then she kept sending me links to forums until I met enough people that I felt part of a group again. Then she made cooking an intellectual exercise. She challenged me to find an ingredient I could use. It became a race for who could make the best GF lasagne. And, since I was determined to beat her, I found all the options myself and realized just how many there were. GF eating became FUN. Now we’re going this big Gluten Free expo in a few months as a “research project.” I think, long term, it brought us closer. Hopefully you and your daughter will have a similar experience!
momto11Participantmomto11 April 26, 2016 at 9:52 pm #14484
Mommabeans—been there!!! I had 3 daughters diagnosed at the same time between Christmas and New Year’s Day 10 yrs ago. Two of my daughters, identical twins, were 14, and my other celiac child was in 5th grade–guess she was almost 11. I had several meltdowns. I remeber crying and wishing it ws me instead of them. I can remember standing in Walmart, reading labels, and trying to keep from crying. We bought celiac cook books. One night one of my twins cooked some bread, and when it first came out of the oven, hot with butter, it tasted like regular bread. I quit crying after that. I have 9 chldren of my own, and 2 step-children. I tried to cook gluten free noodles and regular noodles—but found I would end up putting the wrong spoon in the wrong bowl. So, all of our famiies meals were cooked gluten free. My daughters learned to cook gluten free–and they got to be really good at it. We had a good flour mix we used. Bette Hagman’s Featherlight mix—I bought 25# bags and mixed my own flour mix. We continued to eat pretty much the same foods we had always eaten, we just learned what ingredients we needed to exchange. We used our Betty Crocker cook book and our old recipes most of the time. We just used our GF flour mix cup for cup for flour, and added xanthan gum to replace gluten. I cooked a lot of muffins with our favorite muffin recipe. I learned to make a nice flakey pie crust. I made frog eye salad with whole pearl tapioca. I made fruit and cheese danishes that were to die for. My girls were not afraid to try just about any recipe they found. When they would go on sports trips with the school, sometimes one would call the other and ask her to look up the gluten free menu of a partivular fast food place, so she would know what she could order. My husband and I and 8 of my 9 children all carry one of the main celiac genes. We got in on a celiac study done through the University of California, Irvine. I have one child that is IgA deficient, but he does not have celiac. I periodically have myself tested with other blood work, since I know I have the gene. My husband has hashimoto’s disease. It is often connected to celiac disease. I have no idea why my 3 girls had the gene activate and none of the rest of us, but I guess it could hit any of us at any time. It gets easier, I promise. Tinkyada makes pasta that no one can tell the difference from regular pasta. Kinnickinik is a good place to order GF things from. shipping used to be only $10 no matter what you ordered. My twins also have eating disorders—one spent 3 months in the hospital—and they coudn’t keep her gluten free—even though they assured me they had celiac children come in the hospital all the time—-I don’t think they ever had one stay for 3 months!! My daughter went in with her Ttg almost normal, she came out with it over 100. My girls are all now married and on their own. Let me know if you need any suggestions, if you haven’t gotten it figured out yet!
I don’t think our hospital had ever run Ttg’s until my children were diagnosed.
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