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Last Question: Do I Request Specific Test For 6Yo?


slee11211

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slee11211 Apprentice

Bear with me, new to this...but I seem to be gleaning from this forum that there are some tests better than others for Celiac (and I could be wrong!).

I'm taking 6yr old in tomorrow AM for test. Do I trust the ped to know what to do, or do I just tell them the exact test we would like done? My little guy is deathly afraid of needles, so there is NO way I want to have to do this twice.

Anyone have the lowdown on latest greatest test?

Thanks.


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pain*in*my*gut Apprentice

Bear with me, new to this...but I seem to be gleaning from this forum that there are some tests better than others for Celiac (and I could be wrong!).

I'm taking 6yr old in tomorrow AM for test. Do I trust the ped to know what to do, or do I just tell them the exact test we would like done? My little guy is deathly afraid of needles, so there is NO way I want to have to do this twice.

Anyone have the lowdown on latest greatest test?

Thanks.

The most up to date test for Celiac is the DGP (deamidated gliadin peptide) antibidy screen AND the tTG (tissue transglutaminase) antibody screen. The DGP is replacing the older gliadin antibody tests, which some docs may not be aware of.

I would tell the ped the exact tests that you want. Write it down and show him:

1) DGP antibody screen

2) tTG

3) Total Iga

4) HLA DQ2 and DQ8 genes

These are the tests my doc recently ordered for me, and she said that they were the standard screening tests now. Somebody else may have another test to ask for, but these 4 are a good start. Remember, he is working for you! Good luck! B)

The Horticulturalist Apprentice

Bear with me, new to this...but I seem to be gleaning from this forum that there are some tests better than others for Celiac (and I could be wrong!).

I'm taking 6yr old in tomorrow AM for test. Do I trust the ped to know what to do, or do I just tell them the exact test we would like done? My little guy is deathly afraid of needles, so there is NO way I want to have to do this twice.

Anyone have the lowdown on latest greatest test?

Thanks.

Did I read in another post that you are in NYC? perhaps the people at the Celiac Disease Center at Columbia can offer some help for you? Open Original Shared Link

If his blood work comes back positive,or in the 'weak' positive range I'd absolutely contact a place like that with experienced pediatric gastroenterologists who are knowledgeable in this area.

slee11211 Apprentice

The most up to date test for Celiac is the DGP (deamidated gliadin peptide) antibidy screen AND the tTG (tissue transglutaminase) antibody screen. The DGP is replacing the older gliadin antibody tests, which some docs may not be aware of.

I would tell the ped the exact tests that you want. Write it down and show him:

1) DGP antibody screen

2) tTG

3) Total Iga

4) HLA DQ2 and DQ8 genes

These are the tests my doc recently ordered for me, and she said that they were the standard screening tests now. Somebody else may have another test to ask for, but these 4 are a good start. Remember, he is working for you! Good luck! B)

Thanks! Written down.

slee11211 Apprentice

Did I read in another post that you are in NYC? perhaps the people at the Celiac Disease Center at Columbia can offer some help for you? Open Original Shared Link

If his blood work comes back positive,or in the 'weak' positive range I'd absolutely contact a place like that with experienced pediatric gastroenterologists who are knowledgeable in this area.

Yes, nyc....I had thought about going to them, and may still.

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    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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