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

Testing Children


MistyRG

Recommended Posts

MistyRG Apprentice

Now that I possibly have celiac, I am watching my kids like a hawk!!!

My daughter (age 5) had stomach issues a few months back. We couldn't pinpoint a specific time it would bother her (after meals, before meals, when she didn't want to do something . . . :rolleyes: ). Doc ordered ultrasound and blood work (not celiac related), and everything was normal. They put her back on Zantac (she had been on it as a baby for reflux). It didn't really help, and her stomach still bothers her on occasion. She also gets ulcers in her mouth all the time . . . like 4-5 every month (I have read that this could be a symptom).

My oldest son (age 9) is showing some signs, as well. My other 3 sons are under age 2. So I don't know about them yet.

All that to ask what kind of testing should I request from their pedi? Do they do the celiac panel or genetic testing on little ones? At this point, because I am waiting for a biopsy, we are all still full gluten eaters.

Thanks . . . :)


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



Celiac.com Sponsor (A8-M):



SPJandE Newbie

I can't be of too much help, but I will tell you my experience (the little bit of it anyway). My 7 year old son's doctor wanted to do the full testing, including the genetic part. They put in for the pre-approval, but insurance refused to pay for that part. So we are only able to get the regular testing done, which we are hoping is enough. He is going this Friday for that.

If his testing is positive (I'll be shocked if it isn't), we'll then test his 6 year old brother. We opted to go that route because he is...well, let's just say it'll take an army to get blood from that child. We're trying to avoid that if at all possible, lol. We already know the baby has Celiac because he has DH (dermatitis herpetiformis) that cleared up once he was gluten free (he had had the rash his entire life before that). Testing is really unreliable under the age of 2 (or is it 3?) so we're not bothering with it for him at this point. We haven't decided if we will test him eventually, but at this point, we are not.

I would just talk to your kiddo's doctor about it and see what testing your insurance will cover, depending on your diagnosis. My son's doctor does the bloodwork first and then if it's positive, they see a GI to do the biopsy. I don't know yet if we're going to do the biopsy, but that's what they like to do. Each doctor and insurance is going to be different though. Come up with a list of questions maybe and give them a call or go in for a visit. Sorry I can't be more help, but good luck to you!

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. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      26

      Pain in the right side of abdomen

    2. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

    3. - Aretaeus Cappadocia replied to Ginger38's topic in Related Issues & Disorders
      26

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Lotte18 replied to Lotte18's topic in Publications & Publicity
      2

      Prospective CRISPR research

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

    • Total Members
      133,704
    • Most Online (within 30 mins)
      7,748

    Gordon French
    Newest Member
    Gordon French
    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

    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
    • Aretaeus Cappadocia
      I watched my spouse go through shingles before the vaccine was available for "younger" people, so I got the vaccine as soon as I could. It really knocked me down too, especially the second dose. Even with that, if necessary I would take that vaccine every year to avoid getting shingles. Luckily it's a lifetime benefit though.
    • Lotte18
      Hi Aretaeus, Thanks for posting these articles.  The second of the two relates to my query.  Last week there was a podcast by the Washington Post with the director of the NIH and CDC.  Both institutions are now headed by one guy, Dr. Bhattacharya.  He claims that research funding for rare diseases has NOT been cut.  The question still remains, how do we get Celiac on their radar when of course we are competing for dollars with all kinds of other diseases?  Are people in our community interested in a CRISPR cure?   It seems to me CRISPR works at odds with big pharma because it actually IS a cure.  You wouldn't have to take a drug to suppress T cell inflammation for the rest of your life.  CRISPR is supposed to permanently rewrite your DNA.  I assume we would really need the NIH to fund that research, not rely drug companies.  Dr. Dounda, the brilliant microbiologist, who won the Nobel for her research, making CRISPR possible, thinks that the hefty price will diminish as treatment migrates from bone marrow transplant to infusion therapy.   Because Stanford University started studying celiac and CD8 cells a few years ago, I was curious to see if any progress had been reported.  What I found was a proposal to create a CRISPR platform for celiac by Theresa Flores.  I haven't found anything that states whether or not she got funding.  If anyone at Celiac.com has seen something, please let me know before I start composing a letter to Dr. Bhattacharya.  Not that one little voice in the wilderness is going to move the needle.  If others would also like to write to him, or help compose a joint letter, that would be great.  
×
×
  • 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.