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 While Wheat But Not Gluten Free?

bassgirls

Recommended Posts

bassgirls Newbie
bassgirls
Posted

I believe that both my girls may have celiac based on symptoms. Im taking them to a new GI and wonder about testing. My youngest as an allergy (neg. on RAST small 1 on skintest) to wheat. Funny thing is her only symptoms to it are GI and delayed. As in, if she eats it today shes sick (vomitting and diarreah) tomorrow and for a few days later. She still gets gluten though. How would testing go for wheat but not gluten free??? and just to make sure Im on the right track I'll list thier symptoms.

R- age 8 43lbs 46.5 in

-stomach aches daily

- poor weight gain/ growth in general

- chronic canker sores

- constipation, floating stools

-difficulty swallowing sometimes

-has what looks like DH on her feet

-has what looks like KP on upper arms and thighs

W- age 5 34lbs 41in

-constant stomach aches

-either diarreah or constipation foul stools

-unknowingling has BM in sleep occasionally

-blood in stool on occasion

-multiple chronic canker sores (usually has several at once)

- has what looks like cradle cap still but not so severe

- distended abdomin

-leg pains atleast 3x wk at night (wouldnt ring a bell except she also has leg pains during the day if she walks too much)

-has what looks like KP in her upper arms

Your thoughts would be wonderful. Thanks! -BETH

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I would ask my doctor for a panel, he can call in the order. Then after the blood is taken do a trial of the gluten free diet. Or you could go with Enterolab testing and try the diet. The Enterlab tests are more likely to be accurate than the blood draw. But regardless of the test results a gluten free trial will most likely give you the most accurate results.

ISGoddess Newbie
ISGoddess
Posted

If she's not eating wheat, she could get a false negative to the bloodtest (I have the same problem -- wheat allergy). The U of Chicago suggested I try the diet and get genetic testing for the tendency to gluten intolerance. In addition, they told me the small amount of gluten I was getting from other grains would not cause a positive on the bloodwork.

But boy howdy, your children sure sound like they've got celiac disease based on their symptoms!

Archived

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

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


  • Member Statistics

    • Total Members
      129,976
    • Most Online (within 30 mins)
      7,748
    Redrayvyn
    Newest Member
    Redrayvyn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s...
    • cristiana
      Worried about being isolated

      By cristiana · Posted

      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical...
    • Alibu
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Alibu · Posted

      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like...
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the...
×
×
  • Create New...