Sunday, May 6, 2012

Our Food Allergy Journey

As most anyone who knows me knows by now, Aaron (our 3 year old with Down Syndrome), has Celiac Disease and several months ago was diagnosed with a Soy allergy as well. For the past month or so he has been having problems again (difficulty sleeping, change in his behavior, rash on his face and cheeks and a few other symptoms). After having some blood work done (and waiting four days to find out whether or not he might have leukemia - he doesn't, thank goodness!), we went back to the GI doctor this past week to discuss what could be going on now.

We think we have it narrowed down to two possibilities - a milk protein allergy or a corn allergy. Or both! Yippee. Aaron's diet has to be gluten and soy free and we had been avoiding most dairy because I thought he was lactose intolerant (or I thought that's what the doctor had told me when he was diagnosed with Celiac disease). After talking to the nutritionist on Friday, she said he may actually have a milk protein allergy, so he shouldn't eat anything with any dairy in it at all. So that means anything that has been made with any type of milk. So we are supposed to try that for a few weeks and see if it helps. If it doesn't, then we'll move on to eliminating corn.

However, I feel pretty certain already that it's the corn. It could be both, but Aaron is giving me the signals that it's the corn he can't tolerate anymore. He used to love to eat tortilla chips and Fritos, but now he won't touch them. He did the same thing when he developed the soy allergy. He was drinking soy milk all the time before that but when he started having symptoms, he didn't want to drink his soy milk anymore. He's pretty smart. Even though he can't tell me what's wrong, he knows that he doesn't want those things because they make him feel bad.

So that should be fun. He will be on a gluten free, soy free, dairy free, corn free diet. Try looking at the labels on pretty much anything in your pantry and see if those ingredients aren't in them. It really eliminates almost all packaged or processed foods (which isn't necessarily a bad thing, but it's a challenge with a three year old) and any type of baked goods. Did you know if something contains baking powder, dextrose, glucose, maltodextrin or xantham gum, then it contains corn? Yeah, me neither. So, he can eat meat and fresh fruits and vegetables. Well, most vegetables, but not corn. Or anything containing soy (like mayonnaise, vegetable oil, even Pam has soy in it!) For now, he can still eat potatoes and rice.

I am determined not to let this overwhelm me like the other food allergies have. We have gotten used to them and I know we'll get used to this too. It is frustrating that he isn't even four years old yet and his diet has already been EXTREMELY limited. But in the long run, we'll probably all be better off for it. It's not very likely he will have to worry about the obesity that often goes along with having Down syndrome since he won't be able to eat very much food that would cause that problem. So that's a plus! We'll see. If I get really ambitious, I may try to post some recipes that I make that are gluten, soy, dairy and corn free in case anyone else is interested in such a diet. I'm not making any promises though. :-)