zelda replied to Almendra's topic in Celiac Disease - DoctorsVery interested to read this thread even though I realize it is several months old now. My teenage son was diagnosed with celiac disease a year and a half ago after positive bloodwork and biopsy, and has been followed up with tTG levels every six months since. Initially we saw a gastroenterologist but I never went back after she told him he could still go to regular communion at our Catholic church because he "shouldn't have to give up everything" and also said that it wasn't necessary for his siblings to be tested for the disease. When we saw his regular pediatrician earlier this year for a physical he told my son that "no one stays on the gluten free diet; it's too hard to give up bread". I feel like so many doctors aren't very well educated about celiac disease. He continues to see the endocrinologist who initially diagnosed celiac because he has delayed growth due to the celiac disease, and he seems to know a little more, but never orders any bloodwork for vitamin levels, etc. My son's tTG levels have been 13-14 and the lab reports state that <20 is normal, so I assume that his numbers are OK and don't need to be lower. I have found this to be very frustrating and am interested to see that others have these same issues.
zelda replied to tfrankenberger's topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseI can really relate to your story. My son will be 15 in a couple of weeks and was diagnosed with celiac disease in June 2009 by the endocrinologist we took him to see because of growth and puberty delay. He was in the .5th percentile (yes that does say POINT 5) for height and weight both. His bone age was found to be delayed by 1 1/2 to 2 years which I guess is a good thing because it gives him more time. He had normal thyroid and growth hormone levels. Biopsy positive for celiac. He was last seen in November and at that time his tissue transglutaminase level was back within normal range. He has probably grown about 3 inches since he was diagnosed but I don't know his percentile - probably not much different yet. He has done very well switching to the gluten free diet at an age when it is very difficult to feel "different". It is very helpful to read about other people with similar stories because we personally don't know many other people dealing with this disease. Hope everything turns out well for your son.