Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 , first, welcome! My son is a 4 year old celiac with dermatitis herpetiformis, which is the skin manifestation of CD. While I have not been tested, I am confident that I have it as well. The skin condition he has is identical to mine. Also, on the rare occassion that I eat gluten, I have to suffer through 2 days of illness. Not worth it! We were diagnosed in July, and our house is 99.9% gluten free. We are also milk free when I cook or bake. It has been a tough adjustment, but it's also been healthier for all of us. It's basically a medically prescribed low-carb diet. My six year old daughter has adjusted to it fine. She know that her access to wheat at home is minimal (other than waffles in the GLUTEN toaster!). Ok, specific questions. When we were first diagnosed, I carried a big binder with me everywhere I went. Now, I know what manufacturers post ingredients well, and which ones don't. If I'm unsure, I whip out the cell phone and call right then. I still carry the restaurant guide around in the van. I don't keep a supply of snacks with me everywhere I go. No diaper bag! If I still had a diaper bag, I would do that. Other wise, I can usually scrounge around and find the leftover bag of Cocoa Pebbles that he didn't finish from breakfast! Or, he waits till we get home. The reality is that we only go places that he and I can eat, so why bring extra food? When we travel to visit family, I make a list: 1 loaf of gf bread 1 box gf cereal 1 package of homemade gf cookies FRUIT As for pepperoni, Hormel pepps are clearly marked GLUTEN FREE, so they're safe. As for cross contamination, I found it was easier to replace a few things. I needed a new collander anyway, so I tossed the old one and our only collander is GF because I only make gf pasta. There are a couple of pastas that are tons cheaper than Tinkiyada and taste a lot better. I bought a new skillet (I burned the bottome of the old one...) and I no longer use my electric skillet at all because there was so much gluteny food in it. It can't go in the dishwasher, so it's not safe to me! New cutting board, wooden spoons, toaster, spatula. I bought a Kitchen Aid mixer (which almost all celiacs have!). I also have a lot of Pampered Chef stones, and I just put parchment paper on those to bake. I know there's a lot to take in, and it seems daunting at first...but you'll adjust. Quickly. When you see your little angel putting on weight, and smiling you'll be amazed. My little guy is off ritalin, and focusing so well at preschool now. It's made a world of difference. And I don't ache in the mornings the way I used to. I have more energy and stamina by far! HTH, Becki new diagnosis Hi,My name is , dd 17 months was diagnosed with celiac about 3 wks ago. Somone on another board referred me here. Thanks to you all for dedicating time and energy into provided this wealth of information to everyone. I live in NO and was told that celiac is rare in this area. My ped has never had a case before (and he has been practicing for over 20 years. His partner (who diagnosed her) has only had 2 other cases and has been around just as long. Our dietician at Children's Hospital says she does not get many patients either. She has been more helpful than either doctor, although I am grateful that her dd even made the diagnosis given the delays I hear about. She only weighs 17 lbs and was diagnosed as FTT at 10 months old. Everyone has always commented about how small she was and if she was sick. Now we have an answer, "She is not sick, she has celiac?" Well, given the lack of guidance I have been receiving, I was not quite doing her diet correctly. I was not careful about cross contamination. At McD's, I would just split a burger between her and dd3, but would not feed her the bun, now I know to order it w/o bun so it does not touch the meat. I also never would have thought to ask about a dedicated fryer.I had been calling food manufactures and receiving lists of GF products, but your list is awesome. The restaurant guide is also great. I have never heard of a lot of them, but will be printing the ones that we dine at. I also wanted to comment that we eat at CiCi's buffet a lot and were impressed at how accomodating they were. You may want to add them to your list. You can request pizza w/ your own toppings at no charge. I went to the counter to ask if they could give me some ham and cheese to feed Carissa because she could not have wheat (this was before official diagnosis), they offered to make a crustless pizza. You select the toppings you want and white or red sauce, they put them together in an aluminum pan and cook it for you. It was so wonderful I was moved to tears. They usually don't allow you to take leftovers home, but they gave me a lid so that I could take it with me. It was delicious. I now wonder what toppings are gluten free or not and don't know how to find out. I know the ham cubes I used to feed her list modified food starch (but not the source) and some sausage does (jimmy dean told me theirs does not), does pepperoni? Also, does some pizza sauce, what about alfredo sauce or other white sauces? This info would be helpful in creating a crustfree/gluten free pizza. (We have 5 children, so buffets and pizza is usually where we eat out.)I also wanted to ask if you carry a folder with your food/rest. lists in them or do you pretty much know now. Also, I read the file about keeping things with you just in case you can't find gf food. Can I keep these in the van/heat or do I need to carry them in and out each time? I so appreciate all of the tips/recipes. I wanted to mention a brand that I have not seen listed anywhere, but happened to find in a local grocery. Conrad Rice Mill. It is in New Iberia, LA about 3 hr from us. It is a rice mill, therefore no cross contamination. They make a pancake mix,brownie mix and "bread" crumbs that are gf. dd likes the pancakes and the brownies are like the real thing. I have not tried the crumbs yet. I bought them just to have in case I get creative.I found them on line doing a google. The cost is about $5/box. I paid six at the grocery. Next question is about genetics. I am going to have my other 4 kids tested jsut to see. None are symptomatic, but I have heard that that does not matter. How many of you have had family tested and what were the results. I have also heard the a gf diet stops rheumatoid arthritis symptoms. I read that joint pain and irratibility are symptoms. ds13 is ADHD, could this be celiac? ds5 reacts to red dye, so I know that food can cause behavior issues. I know my post has been long, so I will end for now. I am so happy to have found you guys.Agape, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 Becki, congratulations on working out a big success with very difficult problems for you and your family! I'm curious what two gf pastas taste a lot better (and are tons cheaper) than Tinkyada. Jo Anne Re: new diagnosis .. . . . There are a couple of pastas that are tons cheaper than Tinkiyada and taste a lot better. .. . . . HTH, Becki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 Huh, this is funny bc I've tried several pastas and find that Tinkyada tastes the most like normal, and cooks the most like normal. Bridget ________________________________ From: J. Sent: Sat 10/16/2004 11:09 PM To: SillyYaks Subject: Re: new diagnosis Becki, congratulations on working out a big success with very difficult problems for you and your family! I'm curious what two gf pastas taste a lot better (and are tons cheaper) than Tinkyada. Jo Anne Re: new diagnosis .. . . . There are a couple of pastas that are tons cheaper than Tinkiyada and taste a lot better. .. . . . HTH, Becki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2004 Report Share Posted October 17, 2004 I agree with you Bridget. There is one other pasta that I think is just as good and that is Bi Aglut. It is about the same price as Tinkyada. Barbara Disclaimer --- I am a volunteer and not a medical expert, but I can share with you information that I have found helpful. Please contact your medical professional for medical advice regarding your situation. Please verify the gluten free status of products often for your own protection. Re: new diagnosis. . . .There are a couple of pastas that are tons cheaper than Tinkiyada and taste a lot better. . . . .HTH,Becki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2004 Report Share Posted October 18, 2004 Here's a list from Whole Foods. I've seen at least 3 of these at SHOPPERS, a " regular " grocery store in the Baltimore/Washington area. Ancient Harvest Corn/Quinoa Pasta China Bowl Cellophane Noodles DeBoles Angel Hair Brown Rice Pasta Fettuccini Brown Rice Pasta Fusilli Brown Rice Pasta Shells Brown Rice Pasta Spaghetti Style Pasta Eden Foods 100% Soba Japanese Buckwheat Pasta Food For Life WF/GF Rice Elbow Pasta Pastariso Fusilli Brown Rice Pasta Shells Brown Rice Pasta Tinkyada Rice Pasta (All Varieties) Thai Kitchen Stir Fry Rice Noodles Thin Rice Noodles Wide Rice Noodles I eat the DeBoles and Brown Rice all the time and it's great. I really can't tell the difference between that and regular pasta, and I've eaten A LOT of pasta throughout my life. I'm Italian so, I thought giving up pasta would be the hardest part about being GF. Not so, with most of the pastas on this list. paul > > Hi, > > My name is , dd 17 months was diagnosed with celiac about 3 wks > ago. Somone on another board referred me here. Thanks to you all > for dedicating time and energy into provided this wealth of > information to everyone. I live in NO and was told that celiac is > rare in this area. My ped has never had a case before (and he has > been practicing for over 20 years. His partner (who diagnosed her) > has only had 2 other cases and has been around just as long. Our > dietician at Children's Hospital says she does not get many patients > either. She has been more helpful than either doctor, although I am > grateful that her dd even made the diagnosis given the delays I hear > about. She only weighs 17 lbs and was diagnosed as FTT at 10 months > old. Everyone has always commented about how small she was and if > she was sick. Now we have an answer, " She is not sick, she has > celiac? " Well, given the lack of guidance I have been receiving, I > was not quite doing her diet correctly. I was not careful about > cross contamination. At McD's, I would just split a burger between > her and dd3, but would not feed her the bun, now I know to order it > w/o bun so it does not touch the meat. I also never would have > thought to ask about a dedicated fryer. > > I had been calling food manufactures and receiving lists of GF > products, but your list is awesome. The restaurant guide is also > great. I have never heard of a lot of them, but will be printing the > ones that we dine at. I also wanted to comment that we eat at CiCi's > buffet a lot and were impressed at how accomodating they were. You > may want to add them to your list. You can request pizza w/ your own > toppings at no charge. I went to the counter to ask if they could > give me some ham and cheese to feed Carissa because she could not > have wheat (this was before official diagnosis), they offered to make > a crustless pizza. You select the toppings you want and white or red > sauce, they put them together in an aluminum pan and cook it for > you. It was so wonderful I was moved to tears. They usually don't > allow you to take leftovers home, but they gave me a lid so that I > could take it with me. It was delicious. I now wonder what toppings > are gluten free or not and don't know how to find out. I know the > ham cubes I used to feed her list modified food starch (but not the > source) and some sausage does (jimmy dean told me theirs does not), > does pepperoni? Also, does some pizza sauce, what about alfredo > sauce or other white sauces? This info would be helpful in creating > a crustfree/gluten free pizza. (We have 5 children, so buffets and > pizza is usually where we eat out.) > > I also wanted to ask if you carry a folder with your food/rest. lists > in them or do you pretty much know now. Also, I read the file about > keeping things with you just in case you can't find gf food. Can I > keep these in the van/heat or do I need to carry them in and out each > time? I so appreciate all of the tips/recipes. I wanted to mention > a brand that I have not seen listed anywhere, but happened to find in > a local grocery. Conrad Rice Mill. It is in New Iberia, LA about 3 > hr from us. It is a rice mill, therefore no cross contamination. > They make a pancake mix,brownie mix and " bread " crumbs that are gf. > dd likes the pancakes and the brownies are like the real thing. I > have not tried the crumbs yet. I bought them just to have in case I > get creative.I found them on line doing a google. The cost is about > $5/box. I paid six at the grocery. > > Next question is about genetics. I am going to have my other 4 kids > tested jsut to see. None are symptomatic, but I have heard that that > does not matter. How many of you have had family tested and what > were the results. I have also heard the a gf diet stops rheumatoid > arthritis symptoms. I read that joint pain and irratibility are > symptoms. ds13 is ADHD, could this be celiac? ds5 reacts to red > dye, so I know that food can cause behavior issues. > > I know my post has been long, so I will end for now. I am so happy > to have found you guys. > > Agape, > > 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.