Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Reliability Of Blood Tests In Toddlers

covsooze

Recommended Posts

covsooze Enthusiast
covsooze
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dahams04 Apprentice
dahams04
Posted
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 Rookie
High-Tech Mom
Posted

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 Mentor
ravenwoodglass
Posted
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. :angry: 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 Enthusiast
covsooze
Posted
  • Author

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 Newbie
gerharts
Posted

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 Newbie
gerharts
Posted
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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted
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 Collaborator
chrissy
Posted

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 Rookie
High-Tech Mom
Posted
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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,175
    • Most Online (within 30 mins)
      7,748
    Lizzy W
    Newest Member
    Lizzy W
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...