Well...after almost two years of just reading the forums, I'm at my wit's end and, making my first post.
I'll try to keep this part brief:
April of 2011, husband's.celiac diagnosed. Our two daughters blood tested in June of 2011. Like a greek tragedy...one daughter positive, other daughter negative. Daughter with positive blood test was 15 at the time. She was tested by her general practioner, who advised that with father's diagnosis and numbers in her blood work off the charts,(not sure of number but I seem to remember hearing 134), endoscopy was a moot point. She made diagnosis, advised that she join her father on a gluten-free diet, and said she could refer a GI if we wanted. at the same time daughter is diagnosed with scoliosis.
So...August of 2011 daugter sees pediatric GI doc. She would advise endoscopy, but agrees with GP that diagnosis is most probably correct. Orders additional bloodwork, and dexa scan (beause of scoliosis daignosis).
Test comes back with vitamin D deficiency, calcium deficciency and osteopenia.
I should probably throw in here that daughter started gluten-free diet the day she got the results of bloodwork in June. Also she and her dad had little if any symptoms before diagnosis.
She has next blood work January of 2012. TTg now 18, other numbers coming down Ped.GI says were doing good keep up the good work. Adds omeprazole for her reflux. Has her taking vitamin d and calcium.
May of 2012 both daughters end up with Mononucleosis. but amazingly recover pretty quickly.
August 2012, daughter has more bloodwork. Vitamin D normal, TTg now up to 80! Says take multi vitamin, work harder on gluten-free diet, preventing CC etc.
Even though we were not a gluten-free household, in August our other daughter left for college, and now there is only VERY LIMITED food containing gluten in the house, and I handle it really carefully. Have separate frying pans, toasters, etc. I work really hard to keep my celiacs safe.
So...in January she has another round of bloodwork. This time I'm sure we will see TTg numbers back in the 18 range. Results come back...70!!. Vitamin D at 17. Ped GI nurse calls with results and advises 50,000 i.u. of vitamin D for 8-12 weeks, then retest. Asks if I want to see dietician again. I declined. Nurse calls back two days later and says they want her bloodwork and another dexa scan redone in April, and suggests thaT she may have ssecondary Auto-Immune disease or...Refractory Celiac Sprue.
Well that scares the heck out of me,and Ive been searchng ever since for any cases of teenagers with little symptoms of celiac having refractory celiac sprue, and can find nothing.
So finally I get to my question... Can a celiac be gluten free and the TTg numbers stay abnormlly high?
My daughter has handled this diagnosis and her scoliosis with grace, and I'm really proud of how she's facing it as a teenager. I just can't imagine how she will deal with an additional diagnosis.
Her general health is really quite good and the scoliosis hasn't changed. It's hard to comprehend that she could be developing Hashi's or Diabetes or Refratory Celiac Sprue when she seems as healthy as her non-celiac sister. I'm soooo discouraged any ideas will be appreciated
So much for being brief