Our Quest caps ttg labs at >250, and the doctor claimed that all labs cap the results at 250. Obviously, people have received the actual results that are over that threshold. Does anyone know which labs don’t report with a cap? We are in Pittsburgh, PA.
We are feeling very discouraged this morning after getting my teen daughter‘s bloodwork back. I’ve already reached out to the specialist and am awaiting their response but also curious to see if anyone else has struggled like this and has suggestions.
This is the third time she’s gotten her TTG done, and all 3 have been >250 (no specific number, so no way to plot a trend). 7 months gluten free. Her endoscopy was 3-4mo ago and showed extensive celiac damage to the surgeon’s eye, but the biopsy was negative with mild inflammation (Expected since she’d been gf). Symptoms at diagnosis were severe malnutrition and deficiencies, debilitating fatigue, and dermatitis herpetiformis. DH has long since cleared, deficiencies and bloodwork all improved and normalized (CBC, metabolic, iron, vitD, vitB, etc and thyroid (this took longest but is normal now)). She feels much better but not 100%. We know she reacts after gultening (happened 2-3x over the 7m). 1 sibling has it too, so the household is mostly GF. 1 small cabinet with gluten and a separate toaster on a separate counter never shared. Multiple family members with celiac (one is a doctor), so we are familiar with safe practices. We’ve checked all meds, vitamins, hair and skincare. And obviously food. She doesn’t even eat some of the iffy ones like GF certified oats.
What else might we be missing??? Has anyone else had a child take that long to heal with levels that high? I’ve already asked the Dr if we can have the levels checked at a lab we know gives us the actual number so at least going forward we can plot a trend. Anything else I should ask the Dr about?