Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 for kids

Sanders

Recommended Posts

Sanders Rookie
Sanders
Posted

My blood work came back pointing to Celiac (some of you helped me understand the labs, thank you!), and am now looking at getting my 2 children tested (age 18 months and 13 years). My 13 year old has had what I think are hives on her back for several months, and has had what was diagnosed as Keratosis Pilaris on her arms and face for years. I'm wondering this:

1) Should I get the gene testing done for them and nothing further at this point? Or should I maybe get the celiac panel done for the 13 year old, since she's getting hives?

2) Has anyone had luck getting insurance to cover the gene testing for family members without a formal biopsy diagnosis? I am still debating getting that done for myself. If i can get my doctor to diagnose me without the biopsy, should that count? I'm heavily leaning towards putting my whole family on a gluten free diet, but I would like to make sure they get the diagnosis they need for future issues that might come up at school. 

Thanks!

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

This is definitely not my area of expertise, but I am speaking as a mom.  

If you are diagnosed as having celiac disease, you should get your 13 year old tested.  All first-degree relatives should be tested. Here is a link to the University of Chicago's celiac website (a leading celiac disease researcher):  

Open Original Shared Link

The little one?  They can be much harder to diagnose.  I would talk to a Ped GI who is knowledgeable about celiac disease in toddlers.  

 

Sanders Rookie
Sanders
Posted
  • Author

This is definitely not my area of expertise, but I am speaking as a mom.  

If you are diagnosed as having celiac disease, you should get your 13 year old tested.  All first-degree relatives should be tested. Here is a link to the University of Chicago's celiac website (a leading celiac disease researcher):  

Open Original Shared Link

The little one?  They can be much harder to diagnose.  I would talk to a Ped GI who is knowledgeable about celiac disease in toddlers.  

 

thank you! I'm bringing my 13 year old in to the doc tomorrow for her hives and to push for testing. If I have issues getting what I need, I'll go to a GI. 

cyclinglady Grand Master
cyclinglady
Posted

Our PCP (GP) did not blink an eye when I requested testing for my daughter (she had negative results).  Bring along a copy of the U of Chicago's testing requirements for first-degree relatives if you think your doctor will resist.  

Good Luck!  

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,708
    • Most Online (within 30 mins)
      7,748
    Aleatha Bowens
    Newest Member
    Aleatha Bowens
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • PlanetJanet
      Test says no, but body says Yes?

      By PlanetJanet · Posted

      Hi, Travel Celiac, After several years of gastro problems, reading Wheat Belly, and some other books, tracking my food, and finally swearing off wheat, barley, and rye, (for years), I went to a gastroenterologist.  I insisted on being tested for celiac disease, including genetic testing, and the answer he gave was an email:  "You do not have celiac disease."  I was very confused and wanted to understand more.  I insisted on getting the full report from him from the lab.  I read and researched and read and researched everything I could find.  It can't be diagnosed from the blood test if you are not eating gluten, which I wasn't.  I am not willing to eat gluten for a month to get another blood test.  The risks are too disgusting to deal with.  People can test positive and not be having any problems at all. The genetics are not black or white either.  Apparently, there is a gene "dose effect."  You could have a strong genetic profile, or a lot of the genes, or just one allele on one gene.  DLQ2 or DLQ8, or something.  Whether celiac disease or "gluten sensitivity," or "Non-Celiac Gluten Sensitivity," presents itself, apparently, can depend on your gene dose, your age, your gender, or having a stressful life, maybe.  I raised my daughter by myself and am still battling poverty, political worry, family and childhood abuse, (no drug or alcohol problems, thank goodness).  This gluten problem is, apparently, mostly a female issue, as well, 2 to 1 female.  The medical establishment does not put an equal amount of resources into female medicine as it does to men's medicine, no matter how far we've come.  Anyway, I never had problems till the last few years (I am 64).  BTW I threw away my lab report after many years of filing it away.  I had the one allele on one gene, DLQ2 or 8, IDK. Too frustrated with providers giving me that blank stare when I try to talk to them about it.  They don't believe me!
    • knitty kitty
      Food Tasting Salty

      By knitty kitty · Posted

      Yes, though histamine itself may not taste salty, histamine is present in mucus and tears which contain sodium chloride because salt is a great antimicrobial.  
    • PlanetJanet
      Modified Food Starch

      By PlanetJanet · Posted

      I was just reading about Miracle Whip on the forum here.  I, too, have a reaction to modified food starch, even if something is labeled gluten free.  I was Googling about it, and apparently it can be inflammatory because of the method of manufacturing, not just whether or not it has wheat in it.  I DO NOT eat anything with maltodextrin in it, either, even if labeled gluten free.  It can be made from wheat or corn, apparently, but you can't always tell.  Gets me every time, and also now becoming aware of the modified food starch.  I am getting worse the older I get. I am 64 now -- this gluten reaction started in me when I was 57 or so.  Started slowly, but after starting to track my food intake... became painfully obvious.  I always loved bread, all kinds.  I could eat anything.  Not anymore.  Wheat thins gave me a blow-out.  Didn't want to believe it.  Tried again...OMG.  Serious blow-out while I was out walking at a park--people all over the place.  I didn't know until I went in the restroom.  OMG.  Wheat thins have wheat, obviously, and also barley malt syrup or flour or something.  A double WHAMMY.  Then I knew.  No more gluten!  And it's so challenging to do that.  Also, I probably have microscopic colitis.  No more NSAIDS, muscle relaxants, Celebrex (celecoxib), SSRI's, caramel color, maltodextrin, modified food starch, vitamins with that whitener chemical, and many other pills.  Doctors always said to increase fiber intake!  Take Metamucil!  OMG it has maltodextrin in it.  Back before I knew to avoid it.  Take anything your "provider" says with a grain of salt.  You know your body better than anyone else.
    • PlanetJanet
      gluten-free and continued upper left side pain after drinking wine

      By PlanetJanet · Posted

      After looking at Google images, the spleen is on the upper left abdomen, too!  An organ, part of the lymphatic system for immune function.  A filter.  Wonder how this relates to gluten sensitivity?
    • PlanetJanet
      gluten-free and continued upper left side pain after drinking wine

      By PlanetJanet · Posted

      Hey, mistake in my post,  pancreas TAIL is on the left side.  Head is middle back of belly,
×
×
  • Create New...