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alioubba

Help with Test Results for 7 year old

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I have my daughter's test results and we had one positive result (I am guessing this is because she was gluten free for 5 weeks and then back on gluten 2.5 weeks before the test).

Is it common to only have one test come back positive? Should the Deamidated Gliadin IgA be positive if it's celiac? My doctor said the results are inconclusive but is referring us to a GI. This could take a very long time since we are in Canada.

Also, wondering what you think... will the GI likely want to re-test blood and see if TtG IgA levels went up? or go straight to endoscopy?

IgA - 1.8 negative Range (.33-2.34 g/L)

Deamidated Gliadin IgG - 1.7 negative  Range (<=9.99 U/ml)

Deamidated Gliadin IgA - 3.7 negative  Range (<=9.99 U/ml)

Transglutaminase IgG AB - 13.3 (negative) <20 EU/ml negative

Transglutaminase IgA AB - 27 (positive)

<20 EU/ml negative

20-25 EU/ml Indeterminate (Borderline)

>25 EU/ml positive

 

 

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everyone tests differently, most people arn't postive for every test. so having only one positive can still indicate celiac disease. ttg suggests there is tissue damage in the small bowel.

i guess it depends on the doctor. the GI i saw was only interested in the endoscopy, he was very much in the school of thought that the biopsy is the only way to diagnose celiac and the blood tests are all useless which isn't true. i decided against the endoscopy for many reason and i chose to get the genetic test which further confirmed it and retest my antibody levels in a few months to see if they went down from being gluten free.

some doctors may be more willing to diagnose based of symptoms or the 4 out of 5 rule

Quote
  1. The presence of signs and symptoms compatible with celiac disease.
  2. Positive serology screening (high serum levels of anti-TTG and/or EMA).
  3. Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
  4. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
  5. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.

 

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Thanks emma6, It's been over a week and CHEO (Children's Hospital) is still reviewing our file. No appointment date yet. It's so hard to wait.

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I wanted to update my post for those who might be googling and looking for insight.

We finally met with Dr. Mack at the Children's Hospital of Eastern Ontario in Ottawa. He reviewed my 8 year old daughters file and thought that her positive TTG IGA was inconclusive, especially since her digestive symptoms aren't severe. (It was 27 with 0 to 19 is negative, 20 to 25 is borderline and 25+ is positive). He wants us to redo the bloodwork at the end of October, so it will be 6 months since the bloodwork was first taken.

If we get another barely positive, he will retest in one year.  If we get over 50 on the TTG IGA, he will do the biopsy/endoscopy. He said he saw between 200-300 potential celiac children last year and diagnosed 100 of them with celiac. He will only diagnose via biopsy/endoscopy. I asked about the procedure and he said he would take 6 samples.  I feel very confident he knows what he is doing.

The waiting continues! Hopefully we will have some answers soon.

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1 hour ago, alioubba said:

I wanted to update my post for those who might be googling and looking for insight.

We finally met with Dr. Mack at the Children's Hospital of Eastern Ontario in Ottawa. He reviewed my 8 year old daughters file and thought that her positive TTG IGA was inconclusive, especially since her digestive symptoms aren't severe. (It was 27 with 0 to 19 is negative, 20 to 25 is borderline and 25+ is positive). He wants us to redo the bloodwork at the end of October, so it will be 6 months since the bloodwork was first taken.

If we get another barely positive, he will retest in one year.  If we get over 50 on the TTG IGA, he will do the biopsy/endoscopy. He said he saw between 200-300 potential celiac children last year and diagnosed 100 of them with celiac. He will only diagnose via biopsy/endoscopy. I asked about the procedure and he said he would take 6 samples.  I feel very confident he knows what he is doing.

The waiting continues! Hopefully we will have some answers soon.

Thanks for this info. I'm going for my endoscopy Friday, and if it's positive, I'm going to be having all three of my kids tested, but especially my 10 year old- he's already having some thyroid issues, among other things. We are in Ottawa as well.

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19 hours ago, Jctb said:

Thanks for this info. I'm going for my endoscopy Friday, and if it's positive, I'm going to be having all three of my kids tested, but especially my 10 year old- he's already having some thyroid issues, among other things. We are in Ottawa as well.

Let me know how it goes!  Curious to know the results of your celiac blood work. Did you have high test results?

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2 hours ago, alioubba said:

Let me know how it goes!  Curious to know the results of your celiac blood work. Did you have high test results?

Thanks. I wasn't even suspecting celiac, but spent 5 weeks grain free as my naturopath was helping me with some issues. After 3 weeks of slowly adding grains back in I had an incident, with blood, etc. The clinic added the celiac test on, since I've been dealing with digestive issues for some time. I was 1 off from a positive (TTG IA was 24), my results were inderterminate. However, I hadn't been eating gluten consistently at all over the 8 weeks prior (including 5 weeks with none)....so that may have had an impact. I've been back on gluten for 2 weeks for this biopsy, and I don't feel as awful as I expected, so who knows what's going on!!

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We did the follow up blood work on Friday and the test result for the TTG IGA was 2 (positive is over 20). She had been eating gluten for 6 months at this time. I'm very happy she doesn't have celiac but am disappointed we don't have any answers for her anxiety, irritability, low iron and constipation. The search continues...will start looking into food sensitivities I think.

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