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Confusinggi Doc

renee28

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renee28 Rookie
renee28
Posted

Alright...so we saw our GI doctor on Monday and he said that he was 98% sure that our son has Celaic as his ttg iga was 38, with anything above a 9 being positive. He wanted to do a biopsy - I asked if we could check just to make sure our son has the celaic gene before we go ahead with the biopsy.

So, our doctor ran a second celiac test in addition to the gene test. The gene test has not come back, although the second ttg test came back negative.

Now what? Our doctor sent an e-mail saying, it does not look like celiac anymore.

When we took the first ttg test our son was in the midst of diarrhea and vomit, the second test he took when feeling fine. Could this play into it? Arrgghhh. Any thoughts??

Much appreciated,

Renee

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psawyer Proficient
psawyer
Posted

A high ttG-IGa is strongly suggestive of celiac disease, but is not considered conclusive in and of itself. It shows an autoimmune reaction, but in some rare cases celiac disease is not the cause.

The reaction is to gluten, and even if celiac disease is not the underlying cause, a sensitivity to gluten is indicated. If you want to pursue further diagnostic tests, then he should remain on a diet containing gluten until testing is completed. But once that is done, I would listen to that result and think that it is a reason to follow a gluten-free diet, whether or not celiac disease is established.

LDJofDenver Apprentice
LDJofDenver
Posted

Keep in mind, also, that there are often false negatives-especially with children.

If scientific diagnosis attempts prove non-conclusive, ultimately the diet itself may give you the answer.

kbtoyssni Contributor
kbtoyssni
Posted

Had you already gone gluten free before the second blood test? Once you go gluten free, antibodies start decreasing and you end up with negative test results.

renee28 Rookie
renee28
Posted
  • Author

He went off for three weeks then back on for two before the second blood test..hmmm. I didn't think just three weeks off would matter.

Lisa Mentor
Lisa
Posted
He went off for three weeks then back on for two before the second blood test..hmmm. I didn't think just three weeks off would matter.

It certainly could contribute to the inconsistencies. Children can heal quickly. How did your son do on the three week gluten free diet. A positive dietary response is part of the puzzle.

renee28 Rookie
renee28
Posted
  • Author

His symptoms went away once on the gluten-free diet....although his symptoms have always come and gone. He was great for the three weeks - then went back on gluten and was very irritable for three days, but then has been just fine since (3 weeks).

He was extremely backed up with poop (they did an x-ray) and he is now cleared out...sometimes I just wonder if all his symptoms were due to constipation (diarrhea, vomit, stomach cramps, irritability) - i just get thrown b/c of the positve ttg iga.

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ravenwoodglass Mentor
ravenwoodglass
Posted
His symptoms went away once on the gluten-free diet....although his symptoms have always come and gone. He was great for the three weeks - then went back on gluten and was very irritable for three days, but then has been just fine since (3 weeks).

He was extremely backed up with poop (they did an x-ray) and he is now cleared out...sometimes I just wonder if all his symptoms were due to constipation (diarrhea, vomit, stomach cramps, irritability) - i just get thrown b/c of the positve ttg iga.

Do keep in mind that for many in the beginning of this disease constipation can be seen rather than D. I am not sure but suspect that the body tries to draw all the nutrients it can out of the food and overpulls the fluid in that attempt. As stated three weeks gluten free may have been long enough for his vilii to heal, I can't remember where I read it and lost the link a long time ago but from what I understand the vili 'turn over' at a very quick rate. The fact that he was quite cranky at first when gluten was introduced may be an indication that he is having neuro impact. The brain will try to release chemicals to counteract that. Those chemicals may be why he seemed to get better after a few days. If he does not have other autoimmune diseases the positive celiac test would be likely to be valid. I would get him back on the diet.

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