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? about celiac

Discussion in 'Parents of Children with Type 1' started by MySweethearts, May 1, 2009.

  1. MySweethearts

    MySweethearts Approved members

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    Does everybody lose weight when they are dx'd with it? Luke came home today with stomach pains and leg pains. But, before this I have been noticing his tummy seems to be bloated. I have been limiting diet 7-up to only twice a day. Maybe just eliminate it all together? I don't know. But I do know you all have good knowlegde about celiac. :)
     
  2. MySweethearts

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    Nevermind, I just found out on a website. There might be weight gain or loss. :confused: I guess I need to get a test done and hope it is not celiac.
     
  3. mmgirls

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    Most endo's will test yearly for celiac, some will at DX too.

    I don't know much if anything about it, and hope that I don't have to cross that brdge either.
     
  4. Darryl

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    Celiac is often asymptomatic. You have to start with the blood test!
     
  5. hrermgr

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    T had no symptoms. She did gain weight and grow taller but not much. Now that she is on a GF diet she's growing by leaps and bounds.
     
  6. brima

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    Not trying to hickjack, but I've been wondering that too. My daughter Brianna has always have a big belly. She's 3 now and she still has that baby tummy, YKWIM. Every now and then she will also complain about leg pains, but mostly her knees. But she was tested for celiac last February and it came back negative. Is it possible to have it and still the results come back negative?
     
  7. MySweethearts

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    Don't worry about hijacking the thread, I have the same questions.:) I talked to the diabetes nurse at childrens just a minute ago. I told her I wanted to get Luke tested. She has to send a note the endo, to see what she wants to do. :mad: I just wanted to say, ummm hello. I am the parent here. Also, They may not get back to me until next week. Gee. If they come back and say well just give him more veggies or what not. I will be livid. Those people who say, "oh, just keep on serving your child the veggies and they will eat them". Yeah right. Luke will eat some but not all of his veggies. Sorry I am rambling. I am just confused right now. Luke also has a bloated tummy, it is worse at night. I guess I will have to just wait and see. They have never tested him for this. And he was dx'd in 2004. :confused:
     
  8. Flutterby

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    has he been tested before?? Kaylee started to get a bloated belly before she was dx.. we thought she was finally gaining some weight.. but after dx and some time on GF diet that belly went away so it was bloated rather than gaining weight.. ask about testing if they've never tested before.. the other thing is lactose intolerance.. my older dd was just dx with this.. its different than a milk allergy.. the body doesn't have the enzymes to break apart and digest the lactose (sugar) in the milk so it produces a LOT of belly problems.. we had her check for celiac twice, crohns disease and a ton of other stufff.. then we did lactose testing and bam, there it was.. with the lactose out of her diet and taking lactaid (the missing enzyme) when she does ingest lactose there are no belly aches.. its amazing!
     
  9. Judy&Alli

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    Hi Carmen,
    I just wanted to add my two cents. Make sure you don't eliminate gluten from the diet. It will skew the test. I hope it's not celiac. Keep us posted.
     
  10. LizinTX

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    I know this is an older posting, but I now have some questions....

    Do they always have a bloated belly with celiac? I am not sure what is going on with the non-D child, but she is complaining of stomach pain especially after she eats.
     
  11. Darryl

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    Celiac is not an "right-after-you-eat" problem. Gluten triggers antiobodies that cause
    the immune system to attack the GI tract. It takes more than a few minutes for the
    immune attack to begin (likely days or weeks) and if you stop eating gluten, it takes
    more than a year for the immune sytem attack to fully subside.

    Our daughter had no symptoms whatsoever, but her blood test was conclusive.

    Every D child must be tested for celiac through a blood test, whether or not they have
    symptoms. The blood test will tell you with 98%+ accuracy if they have celiac, or if
    they don't. 10% to 15% of D children have Celiac, so the test is important.
     
  12. MySweethearts

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    Thank you for the info. I need all I can get :) Luke took a blood test and a stool test last Wed. So now I am just waiting.
     
  13. LizinTX

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    Thank you Darryl, at least I can cross this off my list....I just have no idea what is wrong with her.
     
  14. Heather(CA)

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    That stinks, in the mean time, I would try limiting "diet" stuff just in case, does he have more diet things besides soda?
     
  15. Darryl

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    Just to be clear, I'm not saying that the symptoms are or are not celiac,
    just that the only way to know is to get the blood test. Has that been done?
     
  16. Sarah Maddie's Mom

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    Sort of a hijack

    My sister's Dr did the blood work and says she's, "95% sure Jen has celiac" but to be sure she's ordered something that sounds like and endoscopy of her digestive tract :confused: is this standard for celiac dx??
     
  17. MySweethearts

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    I have not let Luke have a diet drink in about 2 weeks or anything with artifical sweetner. It has helped the gas:eek:, but he still has the belly bloating. I've been making kool-aid with little sugar. It took him a few days to get used to. But, he doesn't have anything else diet. His feet are still killing him some days. On mother's day we went to the art musem and just under an hour he was begging to sit down. That is unlike him who usally runs around like a mad man. :confused:
     
  18. Flutterby

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    yes, the do an endoscopy, which is a camera that goes down through the mouth, stomach, and into the small intestine to check for villi.. its pretty standard..
     
  19. Flutterby

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    Try eliminating lactose.. take out all dairy (that hasn't been cooked.. bread, cookies, cakes, that type of stuff is OK.. no cheese, milk, yogurt, butter though) and then start adding it back in.. my daughter had horrible stomach aches.. some that made her stop eating and run to the bathroom... we though for sure that she had celiac, but after much testing discovered it was a lactose intolerance.. once we stopped the dairy, the problems were gone (including gas issues.. ) she can now have dairy when she takes lactaid.. you can run tests for this rather than eliminating, its actually much easier.. contact a GI specialist..
     

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