Reliability Of Blood Tests In Toddlers

[covsooze]

DS was screened after I got my dx and his blood tests were negative. that was at the beginning of the year when he was coming up to 3. I know there's always an issue of false negatives, but I was wondering - is the chance of a false negative increased when kids are young? If he was tested again now (assuming he does have celiac disease) is it more likely to be positive? What concerns me is that, for the past 6-8 weeks, he's had very loose bms (not quite D) with undigested food in at times. He's also been complaining of stomach ache a lot. It's often after he drinks milk or eats something with gluten in. I'm thinking of doing the enterolab testing so that he doesn't have to have another blood test. How reliable is that in little kids?

[dahams04]

  covsooze said:

DS was screened after I got my dx and his blood tests were negative. that was at the beginning of the year when he was coming up to 3. I know there's always an issue of false negatives, but I was wondering - is the chance of a false negative increased when kids are young? If he was tested again now (assuming he does have celiac disease) is it more likely to be positive? What concerns me is that, for the past 6-8 weeks, he's had very loose bms (not quite D) with undigested food in at times. He's also been complaining of stomach ache a lot. It's often after he drinks milk or eats something with gluten in. I'm thinking of doing the enterolab testing so that he doesn't have to have another blood test. How reliable is that in little kids?

I dont think they are reliable at all! My son (3) was biopsied first w/ positive results then had a blood test and it showed no Celiac! So now I question my other sons blood work. He is showing some syptoms now but his blood work came back normal... I say its not even worth it now! I have no faith in the labs at this point. GL to you though. I can tell you my neice (5) did show pos. blood tests a few weeks ago. So I'm not sure where they age is where it becomes more reliable. HTH!!

[High-Tech Mom]

The blood tests aren't reliable. My child, who had classic celiac symptoms, was tested around 3 and everything came back inconclusive, even the hailed Promethius genetics test came back negative. We re-tested at 5 and the blood tests indicated a severe reaction to gluten. Even the genetics blood test was re-ordered with a different lab and that came out positive.

From our experience, testing in the toddler years is inaccurate, and possibly testing at any age inaccurate. Celiac disease/gluten intolerance has to progress to significant damage before it can be detected with blood tests. We will be using EnteroLab for further testing. It's less invasive and claims to detect the disease earlier than the blood tests.

Good luck.

[ravenwoodglass]

  High-Tech Mom said:

From our experience, testing in the toddler years is inaccurate, and possibly testing at any age inaccurate. Celiac disease/gluten intolerance has to progress to significant damage before it can be detected with blood tests. We will be using EnteroLab for further testing. It's less invasive and claims to detect the disease earlier than the blood tests.

Good luck.

I have to agree with this. Relying on blood tests as a adult delayed my diagnosis by many years. No doctor ever told me anything about the diet other than I should be glad the tests were negative because I wouldn't be able to eat anything. The blood tests are horribly unreliable even for adults but for children it is even more of a 'crap shoot'. I would go either with enterolab or dietary exclusion.

[covsooze]

Thanks everyone. It's true - I had the blood test atfer my sister was diagnosed as I'd had stomach problems for a while. It was negative. I wish I'd known about this board at the time! 5 years later and I retested having become quite ill - the GI said no one could fail to diagnose me from either my bloods or the endo! I think I'll go with enterolab as it's not invasive. Just have to persude DH that we should shell out the money!

[gerharts]

Hi all, i'm a newbie..or at least I think I am! It never really occurred to me that a blood test could be unreliable. my daughter is 5 yrs old weighing 28 lbs 36". with not health issues to be concerned about other than the low weight/height. my primary dr. sent me to an endocronologist..who ran a battery of blood test with a positive for celiacs..while the norm range is 20 (or so i was told), her test came back with 40. We just came back from the gastro. Dr. and he drew more blood to do more detailed testing. Stefanie has no symptons other than the low weight/height..i have the endoscopy scheduled for 9/26..Oh, Yeah; i believe she was tested for celiacs at age 3 and that was negative..am still awaiting the results from the detailed testing..looking for advise as to whether i should put her through the torture of the endoscopy. I'm having difficulty believing she has celiacs as she does not have any GI issues. apologize for being long!

any insight would be appreciated.

liz

[gerharts]

  High-Tech Mom said:

The blood tests aren't reliable. My child, who had classic celiac symptoms, was tested around 3 and everything came back inconclusive, even the hailed Promethius genetics test came back negative. We re-tested at 5 and the blood tests indicated a severe reaction to gluten. Even the genetics blood test was re-ordered with a different lab and that came out positive.

From our experience, testing in the toddler years is inaccurate, and possibly testing at any age inaccurate. Celiac disease/gluten intolerance has to progress to significant damage before it can be detected with blood tests. We will be using EnteroLab for further testing. It's less invasive and claims to detect the disease earlier than the blood tests.

Good luck.

To High-Tech Mom

I'm new & I posted lasted night about the above issue. Would you mind taking a look at Posting #6?, could really use some feedback!

Regards,

Liz

[Guest nini]

  gerharts said:

Hi all, i'm a newbie..or at least I think I am! It never really occurred to me that a blood test could be unreliable. my daughter is 5 yrs old weighing 28 lbs 36". with not health issues to be concerned about other than the low weight/height. my primary dr. sent me to an endocronologist..who ran a battery of blood test with a positive for celiacs..while the norm range is 20 (or so i was told), her test came back with 40. We just came back from the gastro. Dr. and he drew more blood to do more detailed testing. Stefanie has no symptons other than the low weight/height..i have the endoscopy scheduled for 9/26..Oh, Yeah; i believe she was tested for celiacs at age 3 and that was negative..am still awaiting the results from the detailed testing..looking for advise as to whether i should put her through the torture of the endoscopy. I'm having difficulty believing she has celiacs as she does not have any GI issues. apologize for being long!

any insight would be appreciated.

liz

many people with Celiac are completely asymptomatic and only find out they have celiac through screening because a first degree relative was dx'ed with it. Testing for gluten intolerance/Celiac is unreliable because of the high rate of false negatives, meaning that there are a lot of us who tested negative for years only to continue to get sicker and sicker until we finally accumulated enough damage for it to register on the tests. If the tests are positive then yes it's a done deal, but if the tests are negative, it only means they are "not positive"

my daughter was tested at three after my dx of celiac, and her tests were negative (or not positive) but after she continued to have tummy issues and diarrhea and vomiting as well as unexplained hives, I got her pediatrician to support us in a trial of the gluten-free diet. The response was miraculous and now at six she is a very healthy kid. So what that her "official" dx is gluten intolerance, I believe that by getting her gluten-free early we have prevented her from developing full blown celiac like her mother and therefore prevented her from suffering from the same kinds of illnesses I suffered with for years.

[chrissy]

liz----an endoscopy is not torture for them, they don't remember a thing. but, if you are wary of it, you can always just try the diet and see if her growth improves.

[High-Tech Mom]

  gerharts said:

To High-Tech Mom

I'm new & I posted lasted night about the above issue. Would you mind taking a look at Posting #6?, could really use some feedback!

Regards,

Liz

Hello Liz,

Which of your daughter's blood tests came back positive? I agree with nini's feedback - positive results for gluten intolerance are positive, negatives can still be positive. Sound like your daughter has a severe enough gluten intolerance that it is showing up on the blood tests. I don't think that she can get an "official" diagnosis of celiac disease without a biopsy, but does have a diagnosis (at this point) of gluten intolerance (someone correct me if I'm wrong).

Either way, sounds like damage is occurring internally, and getting your daughter gluten-free will help improve her health and reduce her risk of getting other celiac-related diseases such as diabetes, osteoperosis, etc.

We are struggling ourselves as to how to proceed with our kids. My oldest child, now 5, has enough positive results with blood tests, genetic tests and symptoms that we don't feel a biopsy is necessary to diagnose celiac disease. Currently, the rest of the family is getting tested - blood tests, genetic tests and even EnteroLab tests. Properly diagnosing our 3 year old is more difficult. We don't want to uncecessarily put our 3-year old on the gluten-free diet, but we also don't want to just sit and wait for our child to have severe intestinal damage before taking action.

Read Dr. Fine's essay, he is pioneering research in this area and explains the pitfalls of the current methods of testing and diagnosis of celiac disease: Open Original Shared Link

I don't know what to tell you regarding whether to proceed with the biopsy or not. The biopsy is hit-or-miss. Your daughter could have an inconclusive biopsy - what will you do then? On the other hand, a biopsy might confirm celiac disease for you, and possibly uncover other co-existing conditions.

Good luck to you!