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Post by hannahph on Sept 14, 2006 18:02:01 GMT -5
Adrienne, that is the problem. There is no "master list " so to speak. When we got a diagnosis I started doing research and it took me days and days . I have a basic understanding but still SO much to learn.There are lists of ingredients in foods that contain gleutin but it takes forever to figure out what is ok. Then you also have to worry about cross contamination issues such as if you use the same toaster as something that had gleutin then you contaminate the gluetin free food. McDonalds french fries are gleutin free but if there was a batch of chicken nuggets in the same fryer-cross contamination.Most people that have to follow this diet say it takes them months to get comfotable with it. I think it is something that really needs constant thought and management. There are a couple of great forums out there that share food ideas and recipes. I think the thing to remember though is even though the risk of celiac disease is slightly higher with our kids the number diagnosed is still pretty low. I would really try not to worry about it too much. Even if it does happen it is a lifestyle change BUT it is managable. You get used to it. Kathy, yes it is an auto-immune disease. They may not test positive through blood work and yet test positive later. You actually have to have damage from symptoms to have the bloodwork show anything.There is nothing to prevent it. I feel like we are scaring some people, try not to worry. It is something that is life altering BUT not life threatening!!!
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Post by momofrussell on Sept 14, 2006 18:07:44 GMT -5
Thanks Heather! I am not worried Russell has it or what I would do if he did or had to alter his foods, but I do sometimes think about the gluten free diets for other reasons for Russell So, I was just curious if there were any lists or guildlines I could print somewhere, KWIM? So cross contamination isn't such an issue with me persay, just what is gluten free. I see pastas in the whole foods dept in the stores and think about trying it. Does pasta sauce have gluten in it? LOL See.. I am clueless.. but all Russell eats is pasta, pasta pasta... be it mac N cheese or spaghetti... and he eats a few other things too. So.. I was just curious. A.
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Post by donnita on Sept 14, 2006 20:28:19 GMT -5
A, here is the list I found of forbidden and allowed ingredients. www.celiac.com/st_main.html?p_catid=12Cassie's test will be through the mouth but neither way sounds pleasant! Her test is scheduled for Oct. 10th.
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Post by hannahph on Sept 15, 2006 6:26:55 GMT -5
Donnita, we will be praying for her!!!! A-I have not tried it myself yet but have been told that pasta made with rice flour is kind of yucky but there are other brands that taste ok. From everything I have read gleutin free is pretty healthy diet. The basics start with "naked" food, meaning no suaces and such, lot of fruit and veggies. I had really good luck with this forum www.celiacforums.com they are very knowledgeable and have tons of links to lists and such.
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Post by laurasnowbird on Sept 18, 2006 20:45:35 GMT -5
My best friend has celiac disease, so we've been familiar with it for awhile around here. It is an auto-immune disease, and unfortunately, you can test negative for it one year, and positive the next. Once you develop the disease, you have it for life. We just had a big go-round with Ethan's pediatric GI specialist about his weight. She is very careful with him, which I love about her, and she was concerned that he hasn't gained even one ounce in more than a year. He has grown three inches, and is improving developmentally and gaining new skills, but no weight gain! The usual method of detecting is to look for IGA, EMA or TtG in the bloodwork. A high reading of any of those will often prompt a doctor to do an endocoscopy (through the mouth) for a biopsy of the small intestine. The definitive answer is obtained if the villi in the intestine show the characteristic damage of celiac disease. So she ran a bunch of tests, all of which came back negative. She also did him a huge favor and ran the genetic test for celiac disease. She felt that rather than test him every darn year for it that it would be worth it to do the genetic testing and see if he even has the potential to develop celiac disease. His HLA typing came back negative for the potential to develop celiac disease. Well, lets put it this way. Absent the genetic markers for celiac it would be wildly improbable that he would develop it. So we don't have to test him every year now. If anyone else is tired of the yearly or twice yearly screenings for celiac, ask your doctor if they are willing to perform the genetic (HLA typing) testing. It took one thing off our worry list. Here is some info about HLA typing: www.enabling.org/ia/celiac/cel-hla.html#Q7I'll hope that Cassie's biopsy comes back negative! I don't think the diet itself is all that hard, the problem comes in when other people in the house are eating gluten. The potential for cross-contamination is a real force to be reckoned with. I've slowly replaced a lot of products in my house with gluten-free ones, and have been surprised at the things that contain gluten (like Worcestershire sauce and soy sauce!). It is nice to have the right things around when I want to cook for my friend and know that I'm not contaminating here, LOL! If it becomes an issue, I know for certain that Jenny-O brand turkeys are gluten-free, LOL! We had to search for one because they inject so many of the turkeys with broth that contains wheat these days!
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Post by momofrussell on Sept 19, 2006 7:42:31 GMT -5
Well.. you all have been helpful to me I should say. Coincidentally... when we had labs taking with Russell's procedure last Friday, his T4 and WBC came back low. So the doc called me yesterday about this, our Ped. So, I have to go pick up another lab slip and get more labs done again. I asked him to throw in the Celiac's screening. I had told him that Russell has never had the screening ever and in the DS community it should be done probably. HE usually doesn't do one unless the child is showing "signs" or is having GI issues. BUT... that said.. he did not hesitate or argue with me and threw it on the lab slip with the other stuff I told him I could take it or leave it but Russell should probably have one. I don't think Russell DID have it but back in CA they wanted to rule it out and we never had any testing.. and I also told him that even if he has no signs, Russell DOES have GI issues He understood and we shall see. And all though I am not stressing about the T4 and WBC coming back LOW, it was kinda odd. That's never happened before but I know it still could be a fluke. I know in the past Russell has had an elevated WBC if he was sick or something, maybe once or twice.. but never low thryroid anything ever nor WBC... we shall see! A.
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Post by Chester on Sept 19, 2006 10:44:59 GMT -5
My 11 year olds Celiac's screen came back negative. So now we just keep working on the intestine blockage and how to prevent it. Go in for one thing and come out with another....oh well.
Dawn
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Post by Ashlea on Sept 25, 2006 16:02:56 GMT -5
Hi Chandler's Mom here... Chandler had a positive Celiac screen and had his GI done several days later that confirmed he does have Celiac. He has been on a gluten-free diet for over 4 years now (he just turned 8). So far, we have been able to find and/or make almost anything he likes. We buy chicken nuggets & fish sticks at our local health food store and yes, the food is a little pricey. Your GI dr. should give you a "prescription" for a gluten free diet and with that some of the cost of the food should be tax deductible. We have found that more and more places are accommodating gluten free diets and some restaurants even have a special menu you can ask for.
As far as the cookbook, I have a couple but never really used them. I can usually “Google” whatever I am looking for and find several Gluten-free recipes online. We have even made gluten-free “Goldfish” type crackers. I am cooking alot more, but Chandler LOVES to help. You should be able to find most everything you need at the local grocery stores and/or the health food store.
As far as the testing goes for other children with DS, our local DS Clinic at Children's Hospital routinely tests all the children with DS for Celiac among other things at their yearly check-up.
Let me know if you have any questions
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Post by donnita on Sept 26, 2006 11:10:18 GMT -5
Thanks for the info Ashlea!
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