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Help Me Make Sense Of This?

kbidarch

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kbidarch Apprentice
kbidarch
Posted

My 3 year old daughter had a positive blood test for Celiac, which was really an answer to so many questions - or so we thought! She underwent the biopsy on Tuesday. It came back with chronic inflammed esophagus, chronic inflammed stomach, elevated lymphoid aggregates, elevated presense of eosinophils (sp), but NEGATIVE for Celiac Sprue.

Does this mean she does NOT have Celiac? Does this mean she *may* have Celiac, but without enough damage to be detectable? What about the other things - esophagus, stomach, lymphocytes, etc - do they ever go along with Celiac? I was SO hoping for something more definitive today. The Dr wants to simply put her on Axid to treat the inflammation, and see her in 3 months.

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kbidarch Apprentice
kbidarch
Posted
  • Author

My 3 year old daughter had a positive blood test for Celiac, which was really an answer to so many questions - or so we thought! She underwent the biopsy on Tuesday. It came back with chronic inflammed esophagus, chronic inflammed stomach, elevated lymphoid aggregates, elevated presense of eosinophils (sp), but NEGATIVE for Celiac Sprue.

Does this mean she does NOT have Celiac? Does this mean she *may* have Celiac, but without enough damage to be detectable? What about the other things - esophagus, stomach, lymphocytes, etc - do they ever go along with Celiac? I was SO hoping for something more definitive today. The Dr wants to simply put her on Axid to treat the inflammation, and see her in 3 months.

And for just a bit more info - here are her blood-work numbers:

IGE level - 196 (normal: <128)

Gliadin antibody - IGG antibody - 42 (normal: <17)

IGA levels were normal.

WheatChef Apprentice
WheatChef
Posted

No, Yes and Quite often.

The test can't prove the absence of celiac, only the presence of it. The presence of elevated antibodies in a young child should have been a good indicator to attempt a gluten-free diet but instead the doctor is charging you for drugs. The presence of elevated antibodies along with severe internal-inflammation should have been almost enough for a diagnosis.

Since your daughter already did the blood tests and the biopsies there is no longer any reason for her to continue consuming gluten if you think a gluten-free diet would benefit her (which it certainly sounds like there's a good chance it would). Good luck with the difficult diet adaptation ahead of you two.

ravenwoodglass Mentor
ravenwoodglass
Posted

Now you put the med away and do the diet strictly for a few months. She has a positive blood test and many endoscopic changes that are indicitive of celiac. Whether your doctor knows that the changes are the ones you would see with celiac before the villi are totally destroyed is doubtful. There is also 22 ft of small intestine and the damage can be spotty and easily missed. IMHO you should start the diet for her and also test all other family members.

Roda Rising Star
Roda
Posted

I have had my kids blood tested and they are both negative. If either one of them showed up positive on any one of the bloodwork tests I would not hesitate to put them gluten free based on that. I would have them get an EGD and biopsy too just to rule out other things also. I am blood and biopsy proven celiac, but now that I know more than I did when I was diagnosed, I wouldn't let a negative biopsy keep them gluten free if they needed to.

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      26F!
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