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Test Results
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My 3 year old son's celiac panel came back today and the nurse today me that they ran 6 different test and 3 showed positve and 3 were perfectly normal. I guess I'm just confused. I thought it would be more like a yes or no question. Any one have a similar experiance?

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My 3 year old son's celiac panel came back today and the nurse today me that they ran 6 different test and 3 showed positve and 3 were perfectly normal. I guess I'm just confused. I thought it would be more like a yes or no question. Any one have a similar experiance?

I have certainly noticed that with celiac, there does not seem to be any cut and dry answers. Do you have the test results? If not, I would ask for a copy. I have found that I had lots of questions for all the knowledgable people on this forum that was so helpful! I know you have tons of questions!

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Testing in young children is often problematic. Results may or may not be accurate, and it is hard to know. In cases like this, the answer is "maybe."

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If one of the tests was total IgA, you would actually want that to come out normal :) If that one is too low it's very difficult to get an accurate result on the other tests, even if you're really sick. Also, some test are more specific for celiac than others. Anti-gliaden indicates a general problem with gluten (which could manifest in any part of your body). Ttg is more specific for autoimmune damage to your intestines (celiac disease).

What are your plans now? Is your son being referred to a specialist? It's best to wait on the gluten-free diet if you're going to do an endoscopy, but otherwise... do give the gluten-free diet a try! Gluten intolerance can do a lot of damage. For kids, sometimes the first sign of a problem is when they stop growing. :(

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Get copies of your results - post them here - some tests are 'better' (i.e., more sensitive and specific) than others. The tests do not all correlate 1:1, so you wouldn't necessarily test positive on all of them (which is why there isn't just one test - none are perfect).

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We go back to our specialist today. I'll get a copy of the results to post but what I do know is that his Total IgA was high (normal range was 20-150 and my son's was 202) and his tissue something or other was normal but his glaliadin Iga was a little high (normal was 1-11 and his was 15). I would rather just try the gluten free diet then put his little body through another surgery (he's already been through 2 this year). I will post a copy of the results, thanks for your help!

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What kind of surgery is his doctor proposing? :huh: Sometimes you can "wait and see," sometimes you can't.

I hope his appointment today is helpful.

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Ok so I got the results and the ran 5 test (I thought it was 6, sorry) and his Total IgA was positive along with his gliadin IgG. His Gliadin IgA, Tissue Iga, and Tissue IgG were all negative. The doctor went ahead and set up an endoscopy for next thursday. Hopefully we'll know something after that =/

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Hi Megan - good luck and I hope the procedure yields some answers. You may want to talk to the doctor beforehand to make sure that multiple biopsies are taken. Celiac Disease can have 'patchy' damage, and when only one sample is taken (which sometimes doctors do), its often not as accurate.

http://www.celiacdiseasecenter.columbia.ed.../C04-Biopsy.htm (see: Pitfalls in the biopsy diagnosis of celiac disease)

The total IgA test is not a Celiac test - so in terms of Celiac, his only elevated test was the AGA IgG.

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
    • Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old.  Life is going to get harder for her.  Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough.   In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years.  His parents were perplexed.  Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease.  So, he ate pizza.  He was too embarrassed to tell his parents.   My daughter does not have celiac disease.  She was first tested two years ago.  Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year.  It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives.   It certainly sounds like your younger children should be screened.   I wish you both well!      
    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
    • I'm sure going to have a long talk with my doctor.  Then I'll find a new one that will support me and make sure that my daughter and I both have the proper testing done yearly.  
    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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