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. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      27

      Insomnia help

    2. - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      27

      Insomnia help

    3. - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      27

      Insomnia help

    4. - xxnonamexx posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten Free Sugar or Starch known to increase gas?

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

    • Total Members
      133,463
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @EvieJean I was delighted to read @hjayne19's comments about A LIfe at Last as the book definitely helped me to understand how anxiety works.   You may be suffering from vitamin and mineral deficiencies which will can contribute to and even cause anxiety. Have you had any tests done?  If you have and 'normal' results , do take a second look at the levels.  Low normal, for instance, in iron and B12, may still be causing you anxiety, so you may need to consider supplementation.  (If you do this, best talk to your GP, particularly regarding iron, as it needs regular monitoring. - too much in the blood can be dangerous) When I was first diagnosed, my GP was happy when my ferritin levels were c. 11 n/gL (just on the cusp of our local normal lab readings) whereas a consultant I saw some months later for continuing mouth issues said, 'Far too low! and told me my levels should at least be at 40.   Another example is B12 -  in some countries a reading of 500 is considered the start of normal levels, in the UK normal range starts at 180 n/gL.  I feel much better when my B12 is at a higher level. If you are feeling depressed and generally stressed I'd also consider reading Dr Steve Llardi's book The Depression Cure which aims to address these issues with   physical exercise,  omega-3 fatty acids, natural sunlight exposure,  restorative sleep and social connectedness.  I have given this book to many people who found it helpful, and a relative of mine who is a doctor thinks it is fantastic.   The run up to my diagnosis and for some time afterwards I had terrible brain fog, insomnia and intrusive thoughts.  In time, with the supplementation, and also the above books, I did feel so much better.  I really hope that you can find some help with the above, and remember, try to keep your diet as gluten free as you can.  Also, please come back to us if you have any further questions. Cristiana    
    • hjayne19
      @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!  @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start! 
    • hjayne19
      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      Hi @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start!      @EvieJean Im sorry you’re going through that. I also find it frustrating to navigate different medications. However, it sounds like you have some bad anxiety - I went through and am going through the same thing. One of the posts in this chain recommended a book to me called “a Life at Last” by Paul David. I can honestly say it changed my life. Once you stop trying to think and fix your way out of anxiety it can bring a lot of peace. I found by taking these methods and suggestions into my daily life it did in fact improve my sleep! I also did a full blood panel and found my vitamin d was on the lower end. So currently taking vitamin d and feeling alot better. It sounds like you’ve had repeated gluten exposure so your gut may be delayed in healing. I’m no expert by any means but I really suggest reading the book and hopefully it’s a start! 
    • xxnonamexx
      I noticed when eating some gluten-free foods I get increase of gas. I read it can be due to starches or sugar. But is there a particular name of the sugar or starch known to cause increase of gas to look in the ingredients to avoid. Thanks
    • EvieJean
      Yes I am going through that I fall asleep for a few hours than I’m up all night and I’ve lost so much weight I look like a skeleton the brain fog is causing me to think I have the start of dementia, I started taken Aleve am & pm but just read it contains gluten & I’m having trouble finding gluten-free over the counter med for sciatica I also get knee shots every 6 months & I'm being to think they might be triggering flare up’s this is a tough road to walk..I also have to care for my 95 year old mother who doesn’t understand what I’m dealing with & she’s in physically bad shape & is refusing home health care, my stress level is over the top so my dr. Gave me Alprazolam for my anxiety & I just read about it could be contaminated with gluten..I’m at my wits end
×
×
  • 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.