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    Do you have questions about celiac disease or the gluten-free diet?

bendano

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I am posting for the first time today. I have been reading posts on and off for months. Thanks to all who have helped, the advice has been invaluable. I am not sure if my daughter has celiac or not. She is 2 yrs old now and has had diarrhea for close to a year. She has had a negative blood test for celiac at 15 months and biopsy that was abnormal (villous blunting and inflammatory changes) at 18 mos. She responded initially to the gluten free diet (1-2 normal poops) after a week before she went back on gluten for the bx. She was also dx with milk allergy. She is currently milk-free for 3 weeks and gluten-free for 1 week and is still having diarrhea. She may have gotten gluten in Halloween candy. Does artifical flavoring have gluten? I am sure she has a problem with gluten because when gluten is reintroduced into diet she get sick for 3-4 days with vomiting, worse diarrhea. Then goes back to her baseline status 2-4 loose stools/day. She overall is happy, looks healthy but weight is off the chart or <5th percentile at visits. Pedi-GI recommended milk-free, gluten-free diet (which she is on). I am trying to get an appt for a second opinion and have ordered Enterolab panel. She is drinking soymilk now. I am sticking to the gluten-free diet. Am I expecting results too soon? Last time she seemed better after a week. Any advice is appreciated. Laura

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I am posting for the first time today. I have been reading posts on and off for months. Thanks to all who have helped, the advice has been invaluable. I am not sure if my daughter has celiac or not. She is 2 yrs old now and has had diarrhea for close to a year. She has had a negative blood test for celiac at 15 months and biopsy that was abnormal (villous blunting and inflammatory changes) at 18 mos. She responded initially to the gluten free diet (1-2 normal poops) after a week before she went back on gluten for the bx. She was also dx with milk allergy. She is currently milk-free for 3 weeks and gluten-free for 1 week and is still having diarrhea. She may have gotten gluten in Halloween candy. Does artifical flavoring have gluten? I am sure she has a problem with gluten because when gluten is reintroduced into diet she get sick for 3-4 days with vomiting, worse diarrhea. Then goes back to her baseline status 2-4 loose stools/day. She overall is happy, looks healthy but weight is off the chart or <5th percentile at visits. Pedi-GI recommended milk-free, gluten-free diet (which she is on). I am trying to get an appt for a second opinion and have ordered Enterolab panel. She is drinking soymilk now. I am sticking to the gluten-free diet. Am I expecting results too soon? Last time she seemed better after a week. Any advice is appreciated. Laura

My son was diagnosed as lactose intolerant in September and we are now waiting for the biopsy because the doctors suspect celiac (I was diagnosed in June with celiac and I'm also lactose intolerant and soy intolerant). After taking my son off dairy, we gave him soy and he developed violent diarrhea from it. Maybe it's the soymilk for your daughter? We switched my son to enriched rice milk. Good luck!

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I think complete recovery after only a week would be the exception, rather than the rule. Soy could also be the problem, as pointed out already.

Artificial (and natural for that matter) flavors can contain gluten. You have to check. I'm not a big candy eater myself. I'm sure someone has posted a list of safe candy somewhere though.

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My daughter is 2.5 yrs old. I had a hard time getting a dr to consider Celiacs even though I have it. In the end, the biopsy was inconclusive. Sounds like the same answer you got "abnormal". Mine is also allergic to dairy. I find Dairy to be harder to eliminate than Gluten. Maybe it is becasue I have gluten-free for so long. Anyway, initially she was made only dairy free and it helped some. But making her gluten-free/CF has made a world of difference. She gained over a pound last month! So excited. When she is glutened, it takes about a week for the reactions to stop.

So, I would say keep your little one gluten-free/CF for at least a month before you should expect to see big changes. Double check EVERYTHING to look for gluten or casein. Both cause major problems for my kid. Then start looking for her signs of a reaction. For my kid, behaviour is out of control, then the rash, then the diarrhea and this goes on for about a week. She lives on grits, Bob's Red Mill pancakes, bananas, and crackers when getting over a glutening. She barely eats anything else given to her. Once she heals, all foods are fair game :)

Personally, I found it easier to start with a small list of foods that I knew were gluten-free/CF at first and then slowly add more. I label everything "gluten-free/CF" so I am not constantly reading labels. It helps when others watch the kids too.

Hope you see some positive changes soon.

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My daughter was 2 when I discovered she had celiac disease. We were in the 2nd percentile for growth. Incidentally, now, at age 4 1/2, she's in the 50th percentile-- alas, there is hope! But I can tell you that it took us from August to May, to get her diarrhea to go away. These are some of the things that I just didn't consider, when we first started her diet. It took us literally 10 months to slowly weed some of these products out of our daily routines:

  • vitamins -- some are not gluten-free, some are; we now use Yummi Bears
  • chewable pain-killers -- some are gluten-free, some are not; I only use Tylenol liquid now
  • hand soap at home, in stores, and at daycare -- no, it's not supposed to seep through the skin, but think about all the times your two-year-old puts hands in mouth...
  • play dough at daycare -- don't even let your child PLAY with it; washing hands after doesn't get it out from under the fingernails
  • glue at preschool and at home -- Elmer's is probably the safest
  • cross-contamination of counter tops, cutting boards, and the table you eat on -- don't let Dad drink out of the orange juice container anymore
  • cross-contamination through the toaster -- buy one for your little one, seperate from the others'
  • cross-contaimination of spreads (gluten crumbs are found in mayo jars, margine tubs, etc...)
  • alcohol wipes -- alcohol can be a grain alcohol -- use alcohol-free and perfume-free wipes

I know all this sounds overwhelming at first, but YOU CAN DO IT! When you see your child finally growing and feeling healthy and sleeping well at night and running and playing like all of the other kids... ah! It's worth all the trouble you've gone to, to ensure your child's health and well-being. So keep your chin up, and give it time. A book that helped me a lot was Dana Korn's Kids with Celiac Disease.

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My daughter was 2 when I discovered she had celiac disease. We were in the 2nd percentile for growth. Incidentally, now, at age 4 1/2, she's in the 50th percentile-- alas, there is hope! But I can tell you that it took us from August to May, to get her diarrhea to go away. These are some of the things that I just didn't consider, when we first started her diet. It took us literally 10 months to slowly weed some of these products out of our daily routines:

  • vitamins -- some are not gluten-free, some are; we now use Yummi Bears
  • chewable pain-killers -- some are gluten-free, some are not; I only use Tylenol liquid now
  • hand soap at home, in stores, and at daycare -- no, it's not supposed to seep through the skin, but think about all the times your two-year-old puts hands in mouth...
  • play dough at daycare -- don't even let your child PLAY with it; washing hands after doesn't get it out from under the fingernails
  • glue at preschool and at home -- Elmer's is probably the safest
  • cross-contamination of counter tops, cutting boards, and the table you eat on -- don't let Dad drink out of the orange juice container anymore
  • cross-contamination through the toaster -- buy one for your little one, seperate from the others'
  • cross-contaimination of spreads (gluten crumbs are found in mayo jars, margine tubs, etc...)
  • alcohol wipes -- alcohol can be a grain alcohol -- use alcohol-free and perfume-free wipes

I know all this sounds overwhelming at first, but YOU CAN DO IT! When you see your child finally growing and feeling healthy and sleeping well at night and running and playing like all of the other kids... ah! It's worth all the trouble you've gone to, to ensure your child's health and well-being. So keep your chin up, and give it time. A book that helped me a lot was Dana Korn's Kids with Celiac Disease.

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My daughter's diarhea went away after 3 days when we went off of gluten - I think that the younger they are, the faster they recover.

One thing to watch for, though, is the soy or rice milk that you are giving her. Rice Dream and Soy Dream contain gluten from barley. (At least they did the last time I looked at them.) That might be a contributing factor.

Also, look out for the malt flavoring in things - I think that's probably the ingredient item that gets overlooked the most by people who are new to the diet. They think they are fully gluten free, but their rice crispies and corn chex are poisoning them! Milky Ways have it, so if she ate any of those, that might be affecting her.

Good luck in figuring things out!

Betsy

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to me it sounds very much celiac! Usually after the Gluten-challenge and a positive or inclusive Biopsy it's automativcally diangose Celiac! Some here have said that Insurances often can and or will refuse you or give you a pretty high quote if they know you got a Celiac in the family. So, I'm not so sure if it is betteror worse to actually have it in writing. I'm toren between this and that- I want it documented but what if....

As for the Soymilk, it very often contains traves of wheat too, Silk Milk Vanilla, or chocolate or Very Vanilla are all glutenfree, casein and hormonefree, peanutfree and and and!

As for Vitamins I can recommend L'il Critters -Gummi Vites! It has no artificial flavors or Colors it even says on the Bottle that it is wheat (gluten), milk, egg, treanuts, peanuts, soy, artificial falvor-colors and preservative free!!! I got mine at Sams club it has a yellow lid, but I'm sure you can probably get it at Walmart or so too!

As for my daughter, after she's taken off of gluten it takes now about three weeks!!! for her to get better!

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