Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 Just as I was beginning to think 's lab work results from our trip to KKI must've been negative, as three weeks have gone by without a word from Capone, he calls me and leaves a long message that tested positive for celiac and to get him in to see a GI doctor......it was always in the back of my mind, now it's right out in front! I just don't know how I can stick to something like this, dh is already on a restricted diet because of type 2 diabetes, I just doubt I can have the patience to do this.....especially since 's such a picky eater anyway, and cannot comprehend what he can and can't have, how is he going to have lunch at school with his peers and be told he cannot have what everyone else is having? He will think this is punishment!!! All you moms of kids with celiac, please tell me how you coped with this, what you do about explaining to your kid what he can or can't have, whether the school district is responsible for a special diet, or do we just make his lunch everyday......I have so much more to ask.......this will do for a start. Maybe, just maybe, we can get rid of some of 's behaviors with this diet??? Between the sleep apnea and how this celiac business, how many other things can go wrong with ? Now you all know why I flew to MD, as four other doctors poo pooed my thoughts about having celiac and maybe that's why he's so hyper....they all agreed that being as severe as he was, couldn't possibly be helped by diet alone.....and so, the med trials. Sorry this is so long, just skip over if you're all bored.....feeling very hopeless and out of control right now....... Take care all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 I just got on to check my email before I get a full mailbox and this just kinda lept out at me. I know it seems rough right now but you and your family will adapt. We are all stronger than we think and sometimes we have to let ourselves have a moment of as I call it grieving before we get up and do what we thought was impossible to do. Sometimes we are so busy taking care of everyone else we forget to take care of ourselves. Sometimes we wonder just how much more can we take and it overwhelms us but just a quick as the grieving comes, it goes and we go right back to finding ways to do the impossible. Hang in there, you are an awesome Mom and even though you might not know now how you will do it, You will do it, just because you're a Mom and will find a way. The job of being a Mom is the hardest job there is but at the same time the most rewarding. You are one special lady and I wish I could give you a hug but since that isn't " possible " at least not yet, here's a cyber hug just for you! ((((((((((LAURA)))))))))) ps. My sister had surgery yesterday and her right foot was amputated up to mid calf and her left foot was amputated up to the ankle. She is doing fine, will come out of ICU sometime tonight or tomorrow. She's alive which seems impossible but she faced death and with the help of God and prayers she is alive today and will one day soon be able to hug her kids and search again for ways to do the impossible. :-) Carol Trishasmom She isn't typical, she's Trisha! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 In a message dated 5/9/2002 4:43:27 PM Eastern Daylight Time, Ltb3105@... writes: > > Just as I was beginning to think 's lab work results from our trip to > KKI > must've been negative, as three weeks have gone by without a word from > Capone, he calls me and leaves a long message that tested positive for > celiac and to get him in to see a GI doctor......it was always in the back > of > Hi , I'm so sorry to hear that has celiac. I think your trip was a godsend. Once you can get all this together and on the right track life may be so much better. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 In a message dated 5/9/2002 5:21:06 PM Eastern Daylight Time, Csvillars@... writes: > My sister had surgery yesterday and her right foot was amputated up to > mid calf and her left foot was amputated up to the ankle. She is doing > fine, > will come out of ICU sometime tonight or tomorrow. She's alive which seems > impossible but she faced death and with the help of God and prayers she is > alive today and will one day soon be able to hug her kids and search again > for ways to do the impossible. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 , I know how you feel about feeling hopeless and out of control. has to go see a GI next month because she tested positive for Celiac disease. I couldn't possibly take away the foods she loves to eat and she will NOT understand why she can't have it. BUT I am getting pretty tired of cleaning up poop!! Two days this week when I got her off the bus she had poop running up her back and out the sides of her diaper! YUK!! Then when I am trying to change her she sticks her hands all in it and thinks it's funny! I have been doing this for almost 7 years now times 2! The POOP has to go!!! lol I guess we all have days when it seems hopeless and I know we have many more to go but try to think of the good days and grab your little one and give them a big hug!! I always try to image other people who have it worse than me when I am feeling down. Which is easy to do. Heere's wishing you have a better day tomorrow!!! Hang in there!!! Pam mom to Hannah and identical twins Ltb3105@... wrote: Just as I was beginning to think 's lab work results from our trip to KKI must've been negative, as three weeks have gone by without a word from Capone, he calls me and leaves a long message that tested positive for celiac and to get him in to see a GI doctor......it was always in the back of my mind, now it's right out in front! I just don't know how I can stick to something like this, dh is already on a restricted diet because of type 2 diabetes, I just doubt I can have the patience to do this.....especially since 's such a picky eater anyway, and cannot comprehend what he can and can't have, how is he going to have lunch at school with his peers and be told he cannot have what everyone else is having? He will think this is punishment!!! All you moms of kids with celiac, please tell me how you coped with this, what you do about explaining to your kid what he can or can't have, whether the school district is responsible for a special diet, or do we just make his lunch everyday......I have so much more to ask.......this will do for a start. Maybe, just maybe, we can get rid of some of 's behaviors with this diet??? Between the sleep apnea and how this celiac business, how many other things can go wrong with ? Now you all know why I flew to MD, as four other doctors poo pooed my thoughts about having celiac and maybe that's why he's so hyper....they all agreed that being as severe as he was, couldn't possibly be helped by diet alone.....and so, the med trials. Sorry this is so long, just skip over if you're all bored.....feeling very hopeless and out of control right now....... Take care all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 : A healthy diet without gluten will be just as good for your husband's diabetes. You don't have to make one for him and one for sean.... Pick up the book from woodbine house about raising kids with celiac disease. It's very helpful. www.woodbinehouse.com A cookbook for kids is due out any time as well. is the chef of all chef's for this diet and families, but you can also check out the Gluten free gourmet and www.glutenfree.com for the gluten free pantry. It's a lot, no doubt about it, but it will be OK. Take it slow, one step at a time. And it may be very helpful to sean and many behavior issues. j At 04:42 PM 5/9/2002 EDT, you wrote: >Just as I was beginning to think 's lab work results from our trip to KKI >must've been negative, as three weeks have gone by without a word from >Capone, he calls me and leaves a long message that tested positive for >celiac and to get him in to see a GI doctor......it was always in the back of >my mind, now it's right out in front! > >I just don't know how I can stick to something like this, dh is already on a >restricted diet because of type 2 diabetes, I just doubt I can have the >patience to do this.....especially since 's such a picky eater anyway, >and cannot comprehend what he can and can't have, how is he going to have >lunch at school with his peers and be told he cannot have what everyone else >is having? He will think this is punishment!!! > >All you moms of kids with celiac, please tell me how you coped with this, >what you do about explaining to your kid what he can or can't have, whether >the school district is responsible for a special diet, or do we just make his >lunch everyday......I have so much more to ask.......this will do for a >start. > >Maybe, just maybe, we can get rid of some of 's behaviors with this >diet??? Between the sleep apnea and how this celiac business, how many other >things can go wrong with ? Now you all know why I flew to MD, as four >other doctors poo pooed my thoughts about having celiac and maybe that's >why he's so hyper....they all agreed that being as severe as he was, >couldn't possibly be helped by diet alone.....and so, the med trials. > >Sorry this is so long, just skip over if you're all bored.....feeling very >hopeless and out of control right now....... > >Take care all, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 , US CELIAC MON'S ARE WITH YOU!!!! I just posted this to another Mom who just found out her child has CD. >This is the pits--but life will go on and you and your family will adjust. >When we first started JJ was the only one and I cooked a different meal for >him. When we added the second child I through my arms up, now we all eat >gluten free for dinner and may lunches. > >Best books: >Kids iwth Celiac Disease: A family Guide to Raising Happy, Healthy, >Gluten-Free Children by Danna KorAvailable at Amazon.com I bought several >copies. Put one in the boys backpack that the teachers have read an duse >for referrance. > >Bette Hagman's cook books are good. > >Order foods from: >Miss Robin's www.missrobins.com >cookies(Pamela's), pretzels(Glutino or Ener-g Foods), Chocolate Cake Mis, >Chewy Brownie mix, Pudding(Imagine Foods), Pastas(we use potatoe/rice-more >calories), mac & cheese (Pastariso), salad dressing(Annies Naturals), ice >cream cones, popcicles > >Web Sites >http://www.geocities.com/HotSprings/Spa/4003/gf-index.html >http://www.gfcfdiet.com/ >http://www.celiac.com/ > >Common food we use(there is some chance of cross-contamnation with many of >these) >Cereal: Dino-Bites, Cocoa Blasters >Spagetti sause: Prego Traditional, Classico Brands >Ball Park s >Cheese: Kraft Velveeta >Any fresh meat(not flavored) & veggie >Hillshire farms sausage >Orida French Fries(some only) >Van's Wheat/gluten Free Waffles > >Things I bought that help with cooking: >Kitchen Aide Counter top Mixer >Deep Fat Frier >Waffle Maker >Rice cooker > >My children lost a some weight when starting the diet. JJ last 20% of his >weight(10 pounds) It has come back as he has adjusted. He just about >refused to eat for the first 6 weeks. Heartbreaking but the pay off was >worth it. > >I think I have given you enough info to digest for now. I am here to help >you. > > & Garry, parents of (11 ds), (10 ds), JJ (8 >ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (5 ds). All adopted. > & Garry, parents of (11 ds), (10 ds), JJ (8 ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (5 ds). All adopted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2002 Report Share Posted May 9, 2002 , I for got whow old is ? I would not think about hving the school do the boys diet----they know nothing about this stuff in the caferteria. I have not had to explain to JJ about his diet-he does not have the cognitive ability to understand that. was told this is how it is and it is not going to change. Plus he loves putting the lunches together with me. Get the dx in writng to give to the school. Plus get some references from some medical books to take to school. You will have to explain to the nurse, teachers, everyone how important it is that the diet is adhered to. I can make copies or give yo that name of medical too look in. I have them here. At first the meals will be differcult. Do you work or an at home Mom? How much time do you have to make food. Or will you need to purchase food. Try to stick to fresh unseasoned meats and veggies. Hope that he is not as picky an eater as JJ. We are here for you and your family. & Garry, parents of (11 ds), (10 ds), JJ (8 ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (5 ds). All adopted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 In a message dated 5/9/02 4:43:31 PM Eastern Daylight Time, Ltb3105@... writes: > he calls me and leaves a long message that tested positive for > celiac and to get him in to see a GI doctor , I'm sorry!!! I know how upset you must feel!!! But, on the other hand, this may be the key to 's behaviors. It may turn out that you can take him off all drugs. Certainly, you have your work cut out for you, but you are among the very BEST group possible. These guys will have you whipping up yummy foods that will eat. Take it one step at a time. Between , Loriann (and I know there's more), you're in good hands!!! {{{{{{{{{hugs}}}}}}}}}} Donna 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.