I know the chances are slim of getting celiac, but so were getting t1 and here we are. I'd like to know if there are warning signs you yourself or child experienced that led to the celiac diagnoses, things to look for.. Thanks Mom to Julien 17 m old pumping with animas ping Dx Sept 2012 (14 m old)
Really, if you're not seeing symptoms I'd just have the annual blood work and not let it be something you worry about.
The only way to diagnose Celiac is by blood test (symptoms often don't appear until adulthood, and the biopsy confirms damage from celiac, but both of these methods of detection are after the fact). The blood test is routinely done on kids dx'd with T1 and may have already been done on your child. If not, just ask for it and you'll have the answer.
There were no warning signs for us. No symptoms whatsoever. Routine lab work found the Celiac and a biopsy confirmed the diagnosis. I really didn't worry about it until I was forced to.
If you are not seeing any symptoms, I would just make sure you request this as part of your annual screen. Our practice does a baseline on your first year full blood panel and then per your request every year after.
Hi, I'm new here and thought jumping in this thread was a good start. Our youngest daughter was dx on December 17th at 13 months old. She had elevated antibodies for Celiac's also. They told me not to worry about it. When we got home the first two nights she had regular pasta her stools were white the next day...it was quite startling to see. I took to researching and found that malabsorption and liver issues are to blame. I know her liver enzymes were tested during her hospitalization and that couldn't be an issue. The next thing that came up was Celiac's. That was all it took for me to go completely GF. We did about 1/4 GF before and the transition wasn't hard. I have had people ask why I don't just put her back on it so we can a definitive test. Seeing white stools is not good and I don't want to put her through potential damage for a test when GF isn't harming her in any way. Amy Aria - 8 Miles - 6 Liviana - 5, Late Infantile Metachromatic Leukodystrophy (MLD) Giovanni - 3, Also MLD but received Gene Therapy Transplant in Italy in Feb 2011 Adelina - Dx Type 1 Diabetic on December 17, 2012 at 13 months.
Doctors will still recommend the biopsy after a positive celiac test, however all this does is confirm damage. If the celiac blood test is positive, the body is reacting to gluten whether or not the GI tract has already undergone the eventual damage (with TTG's over 100, damage is 95% certain if you wait long enough). So you could do the biopsy each year until the damage has occurred, or just go GF and prevent the damage from happening in the first place. Based on our experience I recommend doing the blood test twice a few months apart (still eating gluten if there are no symptoms), and if positive both times, go GF then repeat the test 6 months later. If the test is negative and/or TTG is on its way down (it can take 1 year or more for TTG to return to normal levels), then you have positive diagnosis of celiac without undergoing the biopsy.
Celiac disease occurs in 1 in every 10 people with type 1 diabetes, as compared with the 1 in 100 cases in the general population. http://www.jdrf.org/index.cfm?page_id=110893
