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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

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

    • Total Members
      132,915
    • Most Online (within 30 mins)
      7,748

    DRIZZE
    Newest Member
    DRIZZE
    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

    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.