Need Help Understanding Test Results

[hokiewife]

My daughter is 15 and has been having extremely severe pain on the right side up under her rib cage and along her shoulder blade on same side. She has had tons of ultrasounds and xrays and a hida scan to rule out gall bladder. She has also been nauseated and is underweight. Finally, she had an endoscopy done done Oct 4th and tons of bloodwork. The DR visibly saw and I qoute "severe blunting of villi in duodenum and bulb". The actual biopsy came back negative as well as all the other bloodwork EXCEPT DQ2. That was positive. Does she have Celiac or not???? DR says no. I also have thyroid disease and sjogrens disease. With me having two autoimmune diseases, I very well could have an IGA deficiency. Could my daughter also have this deficiency which would make her bloodwork a false-negative? Thanks in advance for your help!!!!

[GottaSki]

She certainly could have Celiac Disease.

Do you have her Celiac Antibody Blood test results? If you post them here we can help interpret them - same goes for the biopsy report - it is helpful to know how many samples were taken and any language used to describe them.

Have you been tested for Celiac Disease? It is genetic, tends to run with other AIs and does not always present with gastro symptoms. Your daughter received the DQ2 gene from either you or her father.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate your daughter is not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to make sure these were checked:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Good Luck to you and your daughter!

[hokiewife]

No, I have not been tested yet. I will be in the near future. I do know that they took one biopsy from her stomach to rule out h pylori and only two!!!!! from her duodenum. That realy shocked me especially with him saying severe blunting. No, I dont have any of the numbers on the blood tests, but I do know that she didnt get the total serum or the deamidated gliadin. I am also worried that she only weighs 102 and should weigh about 125. This is just so frustrating!

[GottaSki]

Yes, Celaic testing can be incredibly frustrating. It is good that you are questioning her results - far too many are told that they do not have Celiac Disease only to cause far more damage to their health.

I would make sure she gets the rest of the blood tests - your primary should be able to order them - then remove all gluten from her diet for at least three months (six would be better) as the complete elimination of gluten is often the best test. 15 is a tough age...some teens don't want to remove gluten, while others like your daughter are often ready to see if a dietary change can make them feel better.

Get yourself tested too and then join your daughter in the gluten-free trial - removing gluten may improve both your Thyroid and Sjogren's symptoms.

[frieze]

since the doc said no celiac, what the "heck" did he say caused the blunting?????

[hokiewife]

since the doc said no celiac, what the "heck" did he say caused the blunting?????

My point exactly!! Also, no h pylori was found, no ulcers...... I am going crazy and confused.

[1974girl]

You can have the slides reevaluated for free somewhere else. I can't remember where but maybe someone here can help. My daughters biopsy showed "simplification" and didnt use the word blunt. Make sure you get the report and then I'd send it to a celiac center for a 2nd opinion since he saw it!!!

[Celiac Mindwarp]

Severe blunting but no explanation sounds very odd to me. Definitely needs more investigation.

Good luck with the detective work