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Megan6516

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Megan6516 Rookie
Megan6516
Posted

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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sugarsue Enthusiast
sugarsue
Posted
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!

psawyer Proficient
psawyer
Posted

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."

Mother of Jibril Enthusiast
Mother of Jibril
Posted

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. :(

happygirl Collaborator
happygirl
Posted

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).

Megan6516 Rookie
Megan6516
Posted
  • Author

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!

Mother of Jibril Enthusiast
Mother of Jibril
Posted

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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Megan6516 Rookie
Megan6516
Posted
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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 =/

happygirl Collaborator
happygirl
Posted

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.

Open Original Shared Link (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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