Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Hello all, First let me start by saying " Thank Goodness " for Gluten Free Companies! I couldn't do this with out them. I " HATE " (AND I DO NOT LIKE THAT WORD) TO COOK! I always have, so it is very strange to me that I should get stuck in the kitchen night and day! But that's my life, so I am there, along with all of you. Ms. Robens and Specialty Selects send us big boxes and I smile every time. We may have to move to a smaller house one day, but I'd do it in a minute to stay out of the kitchen.LOL!! I am still learning all the different companies and recipes out there! The last year and a half has been tough. I don't know if I am the only one on this list that has a child with CELIAC'S Disease or not??? The doctors wouldn't listen to me and thought that I was nuts complaining about having a skinny child. " Some kids are skinny " , only to find out when they finally did listen to me that he was slowly dying from Celiac's Disease. When they finally did the biopsy he had NO VILLI left in his small intestines, they were completely flat, and he had been living in pain, but knew no different and never said one word. He couldn't ride is bike from the pain, and everyone but me thought he was uncoordinated. At 7 years old?? Needless to say we changed doctors and I won't let a doctor not listen to me ever again! He has osteoporosis, so his bones are very brittle. He can't ski this year, we live in New Hampshire and Daddy ski patrols so that is hard on him. He's a great kid and takes it all much better than I ever thought he would. Pizza party at Scouts Friday night and he never said one word. He started a club in our town called The I Can't Eat " THAT " Club! For all kids with any type of food issue. They have 6 members and meet once a month. They had a candy free Halloween Party with little prizes, made trick or treating more fun, because they got to trade all the BAD candy for good candy when they got home. They also had a piñata stuffed with toys instead of candy. They all have the attitude that they will not miss out on fun things at school or home because of this. My son goes to birthday parties and brings his own cake and a scope of ice cream in a baggie and when its time, I scope it onto the place, no one is the wiser most times. He doesn't hide it, because Celiac's is so serious, but he doesn't make it an issue either. He refuses to let it hold him back! I hope he is well soon, as he is still a very sick little boy! Some of you might be wondering why I didn't join a Celiac's List, I have, but I am very interested in learning about GF/CF diet in regards to Autism as well. My younger son has DSI(Dysfunction of Sensory Integration)or SID. We know he has an addiction to sugar, so we are interested to see that connection to Gluten as well. I am also interested because what he eats does seem to effect his DSI symptoms. I do know enough about Autism to know that these children also have DSI issues as well. My son has changed so very much since DSI therapy, both with a therapist and and OT. He is thriving in first grade which is something I truly never thought possible a year ago. Before therapy he was out of control. The book The OUT of SYNC CHILD< saved our lives. I have started a support group in Londonderry, NH for DSI this past June. I have recently joined forces with Dr. Lucy Jane ( who has worked in DSI for 30 years) , I have helped a mom near her in Denver start another group out there and Dr, will be announcing DSI PARENT CONNECTIONS at this weeks LA Conference with many top people in the field. We have 30(We hope) groups set to start this spring around the country. More to follow as word spreads that we are looking for parents to host one meeting once a month. Soon parents will be able to log onto SInetwork.org and search by state to find a DSI PARENT CONNECTION near them. I am now a true believer in the POWER OF ONE!!!! I am sure someone has posted the POWER OF ONE day coming up in March in Washington, DC. It is sure to be exciting and get National attention. I am thrilled for that. Sorry for the long intro. Now for my questions! 1. Are there any other Celiac Parents on this group? 2. How many of you know about the connection to DSI with Autism and also FOOD? 3.Fast FOOD is our BIG ISSUE, as I haven't had a minute to search outside of my home, except Mcs. They have a list on their website, which is wonderful, but,THey have for example Pickles on the GF list, well they have distilled vinegar in them.( THIS is OK, for some on GF diet, but not CELIACS) So I am so afraid to take him anywhere. Anyone have any help here?? Thanks so much for all your help in advance! God Bless, Laurie Renke Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.