We have been on such an emotional roller coaster since November 2010. Andrew was first diagnosed with type 1 diabetes and then celiac disease one month later.
Since then, we've been scrupulous with keeping gluten out of our kitchen. With all of the precautions taken, Andrew's celiac antibodies are still not under the normal of <20. Granted, he started at around 134, but he should have been able to get under 20 eating gluten free. Right now his antibodies are 41.
We met with a nutritionist and went over everything in our kitchen to see if there was something we were missing. We came up with absolutely NOTHING. However, restaurants can definitely be a place for cross contamination. We do eat out 2-3 times per week.
Our plan of action is to repeat the upper endoscopy and see if his body is having damage done to his small intestines. There are some people that test positive for celiac antibodies and not have celiac. Since Andrew never had symptoms, we can never use that as a guide.
If he does NOT have damage, we will use 41 as his normal marker. If he does have damage, then we will stop eating out for 2 months and retest his antibody levels. If he is still high after that, then we will have to look into other reasons for the elevated antibodies.