You would think a CHILDREN'S hospital would know better..

My daughter who has Celiac disease (our eight year old who has Down syndrome) ALSO has a heart condition.  She has already had two open heart surgeries, one at three months and one at 6 years.  This Monday I got a call about the results of a portable heart monitor she had worn and apparently her heart rate is about 45 on average..it should be 90...The rate goes down to 30 at night and her heart even STOPPED BEATING for 2.9 seconds at the time of the test when she was asleep...SCARY stuff!  The doctor asked us to bring her in for surgery for  an immediate pacemaker implant...just two days later on the Thursday.  My hubby just started a new job and I run a small Montessori daycare from our home so you can imagine the stress.
I was not sure what to expect diet-wise so I packed food for both of us that was gluten free as well as our own dishes and cutlery and hand soap.  The surgeons were not sure if there would be any medicals items that contained gluten and went to look...I am sure the freezing cream had gluten as she reacted to it with a big rash...the surgery went well and when we returned to the room I looked up the soaps and sanitizers that the medical and cleaning staff would be using and asked the nurses to avoid lotions and possibly wear gloves around our daughter.  Luckily the Johnson's baby shampoo and Laura line soaps and microsan hand sanitizers were gluten free :)  (I Googled them )  They already had Dawn liquid dish soap in the kitchen so all was good...UNTIL breakfast came the next morning...She was given a LACTOSE FREE breakfast of oatmeal, toast and lactose free milk product...I returned it and she was given eggs and milk and rice crackers..I had little faith about cross contamination so she ate gorilla munch cereal, applesauce and yoghurt from home :)  I find that life always sends my family little surprises and setbacks...food related and otherwise so we just plan ahead and be proactive so we have a backup plan and sometimes I just have to let it go and trust that if she is exposed a little bit at least I tried the best I could...my sister told me to relax a bit and not be so crazy about this Celiac thing...as she called it... I said NO...I would NOT compromise my daughter's health ..and asked her to think about it this way...I said that I wondered if her child had a life threatening peanut allergy..if they would let one speck of peanut related products in the house..or any pan/appliance that came into contact with peanut butter around their child's food...would they ask kids/adults to wash their hands upon entering and be sure to check restaurants and labels more carefully ???  Then I also compared Celiac to diabetes...I asked if they would they give their diabetic child one speck of sugar if they could avoid it ???  That quieted her comments instantly..But honestly..who cares what anyone thinks about our diet choices...this is our life decision and it is what works for US!  We, as a family of 7,  have committed to this gluten free home to make a safe "home-base" for our daughter.  Family and visitors  will need to follow our restrictions in our home and do as they please in theirs.   We can bring her gluten free food when we visit or go to parties etc.   I CAN'T  and WON'T try to change others..I can only educate and just set boundaries and follow what we have decided as a family <3