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
SusanGB
Posted

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
lizard00
Posted

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
SusanGB
Posted
  • Author

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
Fiddle-Faddle
Posted

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
JennyC
Posted

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
Darn210
Posted

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
aikiducky
Posted

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
SusanGB
Posted
  • Author

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.

Go to topic listing

  • 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. Dizzyma
      - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me. My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free i...
    2. tiffanygosci
      - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      0

      Celiac support is hard to find

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding...
    3. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      2

      Mallorca Guide

      Forgot to add... Quite a lot of 'tapas' are gluten free. Ones to look for: Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish. Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which...
    4. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Insomnia help

      Hi @cristiana Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to ...
    5. cristiana
      - cristiana replied to hjayne19's topic in Traveling with Celiac Disease
      2

      Mallorca Guide

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about. I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type. There seems...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,945
    • Most Online (within 30 mins)
      7,748
    Maria Llanas
    Newest Member
    Maria Llanas
    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

    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Forgot to add...  Quite a lot of 'tapas' are gluten free. Ones to look for:  Tortilla de patata (a thick omelette made with potatoes and onions) should be 'sin gluten', and chorizo cooked in red wine makes a nice dish.  Look out for sobrasada, which is very Mallorcan, a softer type of sausage/pate which you can spread on gluten free crispbread which you should be able to buy for supermarkets.  Until very recently we could not buy it here in the UK but we've managed to find a local source, and Lidl have started to sell it in tubs, too. Here's more info on it: Sobrasada is a soft, spreadable, cured pork sausage from Spain's Balearic Islands (like Mallorca), distinguished by its reddish color from paprika, sweet-spicy flavor, and pâté-like texture, perfect for spreading on toast, cooking into dishes like eggs or pasta, or drizzling with honey. Its unique texture comes from the island's humid climate preventing full drying, resulting in a semi-soft sausage that's gently aged, unlike drier mainland chorizo.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @cristiana   Thank you so much for your reply. This is so helpful. I definitely suffer from anxiety mostly related to health. Brain fog definelty doesn’t help this when it comes. I find my 4 am wake ups are potentially more food related if that’s a possibility (eating enough carbs with protein and fats) and if I eat a small snack before bed to hold throughout the night. I just haven’t been able to help the sudden increase in more days where I can’t fall asleep for hours - it’s those racing thoughts like you describe. I feel like a machine that’s running and can’t shut down.    I will try the epsom salt bath that’s a great suggestion. I think I’m probably working through some other food triggers that may be contributing as well with brain fog.    Anyways sorry to go off. It feels so reassuring finding this community and being able to chat with others. I was definitely feeling a bit crazy until I realized there are many others going through the same thing. 
    • cristiana
      Mallorca Guide

      By cristiana · Posted

      Hi Jayne Great choice for a gluten-free cycling holiday, I know the island well. The words you need to look for are 'sin gluten' when you are out and about.   I think you will be amazed at how many packets and canned goods are clearly labelled 'sin gluten' in the supermarkets - many more than one sees here - often in quite large type.  There seems to be a thought in the UK that if you label something gluten free it will affect flavour etc and will put people off buying it!  However, in the case of Spain, it is almost as if the the Spanish see it as an endorsement of quality and flavour!  There is a supermarket called Mercadona and they label their produce very clearly. Paella should be gluten free so long as the chef use the right stock such as Knorr or a gluten-free homemade stock - you can check.  Most Mallorquins in catering speak English but if not, ask, "Contiene gluten?"  Tumbet is a wonderful dish if you like peppers, tomato, aubergines, garlic and olive oil!  A sort of variation on ratatouille.   Slow roast lamb shank should be safe, and there are endless fish dishes to choose from and salads.  Flan is made with eggs, sugar and caramel, and should be gluten-free.  Lots of gluten-free ice cream and sorbets, they should be clearly labelled. If you want specific restaurant recommendations, feel free to PM me. Cristiana    
×
×
  • 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.