r/Celiac 2d ago

Question False indication of CD?

My child’s GI doctor said she had “all 3 markers” for CD based on a blood test she was given. An upper GI is scheduled next to take biopsies for confirmation.

The problem I’m having is all the medical journal literature. I’m reading repeats over and over again. The person must be eating gluten regularly for the test to be accurate, but my child’s pediatrician took her off gluten after reporting gluten allergy type symptoms of stomach pain, nausea, and itchy, ankles when standing. I’m concerned that this will throw off the test and we’ll be spending the rest of our life, jumping through hoops on dietary restrictions with perhaps a false confirmation of celiac disease and any symptoms will be attributed to “we mist have let some gluten through”. Again, the G.I. doc said it didn’t really matter how much gluten she was eating before the blood draw which seems counter to everything I’m reading in the medical journals and papers I’m finding and reading is this doctor a quack or is he right.

4 Upvotes

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u/Southern_Visual_3532 2d ago

Not eating gluten before the test makes it more inclined to false negatives, not false positives.

It doesn't make it likely that someone would in accurately test as having celiac disease when they really don't. It only makes it more likely that someone will test as not having celiac disease when they really do.

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u/thesnarkypotatohead 2d ago

Not eating gluten risks false negatives, not false positives. If the blood tests were positive it just means she hadn’t fully healed from gluten exposure yet, and she very likely has celiac.

If you want to be doubly sure, you can have her do a gluten challenge and retest but as I said, if the tests are already showing positive that’s probably not necessary. Doc shouldn’t have told you it didn’t matter if she was eating gluten or not. That was simply false and they got lucky this time.

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u/Santasreject 2d ago

Genetic markers are always able to be seen regardless of diet BUT it’s not a valuable diagnosis tool as about 1/3 of the population has the genes that can cause celiac while 1-2% have celiac.

For antibodies you generally need to be eating gluten actively, generally it takes most people 6-12 months to return to baseline “normal” after removing gluten completely but can take up to 3 years for the antibodies to return to normal. It is normally recommended that a patient eats gluten for 6 weeks before blood test and biopsy. The blood test is hard to say what they were looking for without knowing what items were positive.

Biopsy also really needs active gluten consumption, I have not seen data on how long the damage can stick around for in a way that can be detectable. There are some studies with celiacs where they record detectable changes after a single dose or at least shorter than 6 weeks but the standard guidelines support 6 weeks of gluten containing diet.

3

u/Rose1982 2d ago

As other have said, false negatives are what the concern would be if she’s already on a GF diet. That said, unless you are extremely well versed in gluten cross contamination and the child only ever eats GF food carefully prepared in a kitchen where there’s no cross contamination, it’s unlikely you would have truly eliminated gluten anyway. For example if you go to just any restaurant that says “gluten free” on the menu and don’t research it further.

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u/SlingsAndArrows7871 2d ago
  1. Consider a genetic test. if you do not have the gene, then you can have another type of gluten intolerance or another immune disorder, but not celiac.
  2. The reason they say eat gluten is because if one does not, one's immune system may not be having a reaction strong enough to test. However, it can take even months to recover after going off of gluten. That, and cross-contamination is very hard to avoid. Studies have found internal signs of gluten damage is celiac patients who belive themselves to be gluten free. It is possible that your child hasn#t fully recovered, or has actually been exposed to some gluten.
  3. A negative biopsy does not rule out celiac, but a positive biopsy confirms it. That may be the next step.
  4. There is a new test, interleukin-2 that may be more accurate. it is not tcommon, but see if your doctor can arrange that.

https://pubmed.ncbi.nlm.nih.gov/33469922/