Jump to content
  • 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

Need To Re-test?


SusanGB

Recommended Posts

SusanGB Newbie

My son who is 3y 3m was tested when he was one and it was negative. Is there any need to re-test? Could he now be positive even though he wasn't two years ago?

Thanks for your opinions!

Susan


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Do you have a reason to think he should be retested? If you do, then yes. Tests on children are very inconclusive, so it could very well have been negative for that reason. Children have a tendency to not produce a lot of IgA, which is what many doctors only test for.

Have you tried him gluten-free?

SusanGB Newbie

My aunt has the disease and both my kids have growth issues so I was thinking of getting them tested. My youngest was tested 2 years ago (negative) by his endocrinologist. I didn't know if in kids the results could change with time.

Thanks-

Susan

Fiddle-Faddle Community Regular

The tests in kids are VERY inconclusive--the false negative rate is just way too high

Really, the best diagnostic tool is to just try a gluten-free diet on them--if you see sudden growth spurts (as well as less stinky poops, fewer tummy aches, disappearance of eczema/reflux, developmental leaps) within the first month, there is your answer.

If you see no changes whatsoever, you can always go back on wheat if you so desire.

And, no, you do NOT need a doctor's permission to do this. THere is NOTHING in wheat that you can't get from other, non-gluten sources. Nobody ever died because they didn't have wheat in their diet. But people HAVE died from having it!

JennyC Enthusiast

I would get him retested, because if your child was one at the time he was too young for the test to be accurate, If you are unsatisfied with the results you could always try him on the gluten free diet no matter what the results are.

Darn210 Enthusiast

My son is small for his age. His sister was diagnosed with Celiac. His results were somewhat inconclusive. He has no GI symptoms (or any other symptoms that we've noticed). During an appointment with the pedGI (who was reluctant to scope . . . and YES, we were too!!!) we decided to do a trial diet to see if we could pick up some growth. We decided on a 6 month time frame. After 6 months, if there is no shift on his growth curve, then he can go back on gluten. Times almost up and we haven't seen anything. The doc thought if we were going to see something that we would probably notice a difference in the second month. It didn't work out for us but at least we answered that question. If you do it, make sure you give yourself a couple of months . . . a couple of weeks isn't enough time.

aikiducky Apprentice

Here in Holland they recommend that siblings get tested periodically every few years. The reason is that celiac can get triggered at any age. Even if a child tests negative at one point, it doesn't mean that they will never develop celiac.


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



Celiac.com Sponsor (A8-M):



SusanGB Newbie

Thank you all for your insight and advice. I think I will have both kids tested.

Good luck to all-

Susan

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      High TTG-IgG and Normal TTG-IgA

    2. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    5. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,867
    • Most Online (within 30 mins)
      7,748

    mark847
    Newest Member
    mark847
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.