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Hi. Does anyone diagnosed with celiac with negative serology and positive genetic test? My biopsy showed Marsh3a score which is mild villi damage,gene HLAq8 with celiac variants are positive but antibodies were normal. I’m so anxious.

Sabaarya
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Sabaarya Community Regular
Sabaarya
Posted

Hi. I’ve had endoscopy and colonoscopy  to find put a cause of the occult blood in my stool and iron deficiency . After biopsy I was told it’s a mild atrophy of my duodenum and it’s celiac disease. Had my antibody test which turned out normal and genetic panel was positive with Hla q8 and celiac variants. My symptoms mainly is my hand tingling and headache. I have occasional diarrhoea ,sometimes cramps in my Tommy and dull pain in the right side of my abdomen under the ribs. I’m very concerned what if it’s no lt celiac and something more serious l. My doctor said that pathologist check for all other disease that can cause villi damage so it’s not them,but there is also something like HIV enteropathy option that can cause villi damage. Even though my life style is so far from HIV infection because I’m very hypochondriac person and since I remember myself I was always do my check ups every 6 months. I did have csection 4 years ago and dentist appointment last year. So freaked out what if it’s hiv because celiac antibodies were normal. My gastro said that generic panel and biopsy results consistent with celiac disease.have dietitian appointment os Wednesday . I really don’t kno what to think . Just anxious and depressed all the time . Does anyone else have similar diagnose…

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trents Grand Master
trents
Posted

Yes, we have had a number of forum participants report negative serology testing but positive biopsy. But two questions need to asked at this point.

1. When you had the antibody testing done, were you already on a gluten free diet?

2. Exactly what antibody tests were done? Can you post the results with reference ranges? Many doctors will only do a tTG-IGA test instead of the whole celiac pane.

Sabaarya Community Regular
Sabaarya
Posted
  • Author

Before testing I was not eating normally for 10 days. I had TISSUE TRANSGLUTAMINASE AB, IGA  and immunoglobulin A tests. And my genetic panel which is HLA q8 with celiac disease variants is positive as well

trents Grand Master
trents
Posted

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Read the sections, "The First Step: tTG-IGA" and "Other Tests."

If you were not eating normal amounts of gluten for 10 days leading up to the serology tests then the results may not be valid. Again, can you post the specific tests, their numbers and the reference ranges for each that were done?

Another approach would be to start the gluten free diet now and see if your symptoms improve.

Sabaarya Community Regular
Sabaarya
Posted
  • Author

My TTG,IGA is <1 and there reference is <4 consider to be negative

my immunoglobulin A which is IGA is 226 and the reference is 70-310 

trents Grand Master
trents
Posted

Some celiacs show atypical serology results and that's why it can be necessary to run the full celiac panel rather than just the tTG-IGA. Your total IGA at 226 is not low. Low total IGA can skew the celiac antibody tests toward the low side. My suggestion would be to either:

1. Go back on gluten daily for 6-8 weeks and be retest for celiac serum antibodies. But this time ask for a full celiac panel. or . . .

2. Commit to a strict gluten diet and see if your symptoms improve.

RMJ Mentor
RMJ
Posted

There are several different antibody tests for celiac disease.  Some people are only positive on the deamidated gliadin peptide antibody tests (DGP).  

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