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help with celiac disease

kgcalkgcal member
in Food Allergy
I have recently been diagnosed with Celiac Disease and I am worried that my 3 year old daughter has it as well.  She is super tiny (1% on weight and 20% on height), always has problems going to the bathroom and complains of belly aches all of the time.  We have an appointment with pedi Thursday to discuss the possibility.  If/when we test her will they just do the blood test?  I had both blood test and endoscopy but if she has just elevated test results would that confirm enough that she has it as well since it is a genetic gene?  Also, if you have any good literature, websites or blogs that would be helpful, could you please share.  Thank you!
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Re: help with celiac disease

  • EastCoastBrideEastCoastBride member

    I would assume they'll start w/ a blood test.  When DS was diagnosed, his levels were off the chart.

    We immediately took him off gluten and w/in days, noticed a difference.  

    We've never done an endoscopy on him.  Maybe down the road we will.  I know it's the 'gold standard' of tests.  but between his blood levels and his response to being taken off gluten, there is no question in anyones mind that he has celiac. 

    I don't know what your doctor will want to do. I'm honestly thrilled that ours didn't feel the endoscopy was needed.  I just didn't want to do that to DS - he was only 1 1/2 when he was diagnosed.  And I'm now in NO rush to put any gluten into his system. 

     

    "Beer is living proof that God loves us and wants us to be happy."
    ~Benjamin Franklin

    Lilypie Third Birthday tickers
    DS dx with celiac disease 5/28/10

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  • julandjojulandjo member

    My kids were diagnosed without the blood test or the endoscopy.  :)  They've never been able to tolerate gluten; less than a serving will make them extremely ill for days, with extreme behavior changes, rashes, etc.  So they're been gluten free since birth (with 3 or 4 trial gluten exposures).  Once my second child showed the same gluten problem as the first, my DH and I got tested (neither kid could be tested, since you have to be on a steady diet of gluten to have a valid test), and whammo!  I'm a raging positive with a lot of gut damage.  Based on my diagnosis, and the kids' symptoms, their doctors have diagnosed them both as Celiacs too.

    Get the blood test first, then regardless of the results (since there are a lot of false negatives), trial her on a gluten free diet.  You've got nothing to lose! 

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  • MaxandRubyMaxandRuby member

    You can google celiac disease and you will get a lot of websites. You can always start with www.celiac.org. I have dermatitis herpetiformis (sp)...I call it celiac disease with a twist (mine comes with a hellaciously itchy rash on certain areas of the body).

    My guess is they will start with a blood test and then go from there but I have no experience myself. DS2 was tested for celiac (blood test) and wheat (scratch test) due to a reaction to peanut butter (when he was tested for nut allergies they included some items that I was also allergic too).

    Some things I like:

    Annie's rice pasta and cheese (mac-n-cheese)

    Tinkyada gluten free noodles (for making whatever)

    Udi's sandwich bread (FYI - all GF bread at least that I have had taste better when toasted)

    Udi's pizza dough (I found this at a grocery store...already made and looks like a tortilla actually)

    Chex cereal (5 kinds I believe are GF and say so on the box)

    Tom Sawyer GF all purpose flour (I've tried it once and it was ok, I need to try a few more recipes with it)

    Glutino GF pretzels

    Amy's frozen food (the GF ones - I use these as quick meals)

    Blue Diamond Nut Thins (I like the almond one in the blue box)

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  • mrstarawalshmrstarawalsh member
    They should just be able to do a blood test as long as she hasn't been on a GF diet. At least that's what our pedi told us. I have celiac's so I asked if we could get the kids tested just a precaution. Luckily they either don't have it or are not having reactions as of yet.
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  • MeghanF13MeghanF13 member
    The blood tests will tell you if your LO is genetically predisposed to Celiac. But the only 100% accurate way is the endoscopy or biopsy of the instestine. People with Celiac don't always have visible side effects/reactions to gluten, but are doing long-term damage to their intestines and colons - even with the smallest amount of gluten.
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