Earlier this week, I took Bean to his check up with his GI. His reflux continues to be under control, for the most part. He has flares here and there but always stabilizes. He's already on pretty healthy dosages of Nexium and Pepcid so we are going to keep an eye on it for now instead of changing his meds. Though Bean is very small in comparison to "typical" kids, Dr. C is happy with his weight.
I was looking forward to this appointment because I wanted to get his input on trialing dairy and gluten. I have held off on these two because dairy has been the hardest on his tummy historically and I have heard from another GI that people with Williams syndrome (WS) are at greater risk for Celiac disease. So, I only wanted to proceed with Dr. C's blessing.
Bean has a number of food intolerances and we have both been on a very strict elimination diet since he was 3 weeks old so that I could continue to breastfeed him. Recently, we've been adding foods back in to our diet and Dr. C was pleased to hear that we have had success with eggs and fish in Bean's diet and almonds and shellfish in mine.
He suggested trying dairy first because we will know faster than gluten if it's a problem. Apparently, it can take months to really see the impact of gluten intolerance.
The plan is to try dairy for 2-3 weeks. If there's a problem, we will need to allow time for Bean's tummy to heal before introducing gluten. But if it goes well, we can do gluten in 2-3 weeks and then we will do blood work to test for Celiac's two-three months after we begin the trial. The biopsy that he did during Bean's EGD last summer isn't valid because Bean was gluten free and the body needs a challenge to test positive for Celiac disease.
So, we started the dairy trial a couple of days ago. So far, we have cooked with butter and Bean and I have both had small amounts of cheddar cheese (hard cheeses and yogurts have less casein - one of the dairy proteins - than soft cheeses and milk). I also gave him a small amount of cow's milk yogurt mixed with his coconut milk yogurt yesterday and then again today. We are taking it very slow, with very small amounts. He's a little gassier than usual, but so far seems to be doing well. As a matter of fact, he seems to be doing better than me. My body is having a difficult time adjusting to dairy again. I find that kind of amusing considering I use to be addicted to cheese.
We'll continue to take it slowly but I am cautiously optimistic that we'll be eating lots of cheese again soon and we'll be able to try gluten in August! Who knows, we might even be eating pizza by September!