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Blood Test Negative, But Daughter Positive

CeliacMom

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CeliacMom Rookie
CeliacMom
Posted

My 2 year old was just diagnosed after having a biopsy. The pediatrician considered celiac disease when she had not been gaining weight and after I told her that I "had Celiac Disease" as a child. (My mother recently told me that she was told in the 60's that I had it, though they never did any test for it, and that I "outgrew it".)

I immediately went for a blood test, and I was sure it would be positive, though my GP told me that it wasn't necessarily so, and then the test was negative. I did have a bout of stomach aches in my 20's (I am now 39), but I was told it was stress and that I should take Tums.

Now I don't know if I should be re-tested. My daughter's initial blood test was negative, and we were later told it was lab error, after the 2nd test was positive. My GP who did the test feels that there is no reason to think I should have it if the test was negative.

Should I see a specialist and re-test? Is there any way my daughter could have it and I couldn't if I had a wheat intolerance as a child?

Any advice would be greatly appreciated.

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lovegrov Collaborator
lovegrov
Posted

You don't "outgrow" celiac, but it is possible that you were misdiagnosed as a child, particularly since you didn't have tests. And, yes, your daughter could still have it.

What blood test(s) did you have done? There are four that really need to be done.

richard

KaitiUSA Enthusiast
KaitiUSA
Posted

You just don't get over celiac. This is not something that you can outgrow. You hav it or you don't and its a lifetime thing. The only "cure" is the diet.

Which tests were done on you that came back negative? Also, as Richard said, since you were not tested as a kid there is a chance that you just never had it to begin with.

CeliacMom Rookie
CeliacMom
Posted
  • Author

Until now, I wasn't aware that there is more than one test for celiac disease. I will have to check with my doctor to see what tests he ran.

Could it be that I simply had a short-lived wheat intolerance as a child and my daughter has celiac disease; would the 2 be related, or is it just coincidence? After all that I have read, it seems that there is a high incidence of immediate family members also having it.

KaitiUSA Enthusiast
KaitiUSA
Posted

Well you could now still have it...so make sure you get the full panel of testing because you do not want to overlook it. It is genetic so most likely it's not just a coincidence your daughter got it. I believe with 1st degree relatives if 1 person has it then 1 in 10 is likely to have it as well.

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

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      Hidden Gluten in distilled vinegar

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      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
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      Hidden Gluten in distilled vinegar

      By Mynx · Posted

      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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