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

What Could This Mean?

mart

Recommended Posts

mart Contributor
mart
Posted

Hi. Does anyone know what this could mean? My 11 year old daughter was screened for celiac disease after her 7 year old brother tested positive. He has all the classic symptoms, she only has a few. The doctor's office called to say that she does not have celiac disease, but could develop it in the future because one of the two serology tests were positive. I read at the doctors office that this test was "99.98% accurate for life." I want to put her on the gluten-free diet ASAP, but they said it isn't necessary and that they want to retest her next year. If the test is so accurate, why do I need to retest in a year? In the meantime, my daughter is approaching puberty and is smaller than her peers.

Has anyone else had this test experience, and if so, what do you make of it? It seems everything I ask the doctor is answered with a quick and dismissing "I don't know." Makes me sad, scared and confused.

Also, do you agree with my thought that my daughter should go gluten free too?

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

Celiac.com Sponsor (A8-M):


aikiducky Apprentice
aikiducky
Posted

I don't understand why doctors in general are so reluctant to recommend a gluten free diet anyway. Even when it's highly likely that a person has celiac disease, they'd prefer to see one eat gluten until there's extensive and maybe permanent damage before recommending the diet. :rolleyes:

A grumpy way of saying, yes, I wholeheartedly agree with you. Your daughter tested positive. I don't understand what they expect to change in a year. Better get on the diet sooner than later, and prevent all those future problems before they have a chance to develop.

Pauliina

Smunkeemom Enthusiast
Smunkeemom
Posted
Hi.  Does anyone know what this could mean?  My 11 year old daughter was screened for celiac disease after her 7 year old brother tested positive.  He has all the classic symptoms, she only has a few.  The doctor's office called to say that she does not have celiac disease, but could develop it in the future because one of the two serology tests were positive.  I read at the doctors office that this test was "99.98% accurate for life."  I want to put her on the gluten-free diet ASAP, but they said it isn't necessary and that they want to retest her next year.  If the test is so accurate, why do I need to retest in a year?    In the meantime, my daughter is approaching puberty and is smaller than her peers.

Has anyone else had this test experience, and if so, what do you make of it?  It seems everything I ask the doctor is answered with a quick and dismissing "I don't know."  Makes me sad, scared and confused.

Also, do you agree with my thought that my daughter should go gluten free too?

<{POST_SNAPBACK}>

my daughter kathryn tests were weird and her doctor says that she "doesn't have it now but may develope it one day" and suggested that we keep her on a 'low gluten diet' and wait for her to get sick.

I talked to Kathryn about it (she is 4) and she wants to do the gluten free diet anyway, she says the food tastes good and that way maybe she won't even have to get sick (sounds smart to me)

Kathryn doesn't have the "bathroom symptoms" but does get stomache cramps and has tested slightly anemic though, and sometimes she has really really cranky days and then I remember what all she ate, and it was a whole load of gluten, she was wanting to wait until after tonight to go gluten-free (we went to a hayride with smores) she has decided now that she has had smores that they weren't a big deal and she can live fine without them so tomorrow is her first gluten-free day.

anyway sorry for the long post, talk to your kid and see if she wants to commit to gluten-free for a year or so to see if she feels better and if she grows any, chances are that after a year she will feel so great she won't want to go back... :D

Indea88 Newbie
Indea88
Posted

That was enough for me. A positive genetic test, the DQ2. When I heard this about my 2 year old who hadnt had a formed stool since birth, I started the gluten free diet that day. My toddler is a different child. It sounds like your daughter had positive genetic testing.I know it is harder at this age. My other son who isnt positve is 11 and I know it would be all together different for this age child to begin gluten-free but she will feel better and know the difference...

Guest nini
Guest nini
Posted

I would put her on the gluten-free diet ASAP...

I am so sick of the Dr.s that adopt this "wait and see" attitude. Oh lets keep feeding this child POISON and see if in a year she's any sicker... WHAT???? :blink::blink:

With a brother that is pos. and having some pos. bloodwork, WHY WAIT FOR IT TO GET WORSE??? and it will get worse. Maybe not until she is an adult and trying to have a child and has recurrent miscarriages or infertility. It will get worse.

IMHO it is better for your entire household to go gluten-free especially with your son's pos. results. It will make it easier on all of you in the long run.

Don't feel like you have to spend a lot on specialty foods, stick with a healthy diet of meats, fruits and veggies that are naturally gluten-free... there are a lot of options out there.

Carriefaith Enthusiast
Carriefaith
Posted
I read at the doctors office that this test was "99.98% accurate for life."
which test did she have?

Archived

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

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

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    VerafromNJ
    Newest Member
    VerafromNJ
    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

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.