An update on our summer so far...

I have a few posts I've been meaning to write but I have little or no time (or maybe the ambition) to write them. I thought I'd share about the summer so far and how the diet change is working (or not working) in our house. It's been a pretty uneventful summer other than the typical lake visits and late mornings. We've not planned any camping trips or had any big adventures at all. I think there is a few reasons for this but we haven't had the money/time to do them. And going out to eat with a kid who has Celiac's Disease is extremely challenging. The next 2 weeks we will end up doing a bunch of things we've wanted to do with the kids finally.

The girls cooking a gluten free dinner

First, I'll update the kitchen clean-out we've had to do and how that is going. We've had some pretty generous people from our church, friends and family helping us replace all of our "gluten contaminated" kitchenware. It's been a really long process but we have replaced the cookware and some utensils that needed replacing. Now we are waiting to save up for a toaster (we are opting for a toaster oven), bakeware, and a few other odds and ends. I cleaned out the refrigerator and washed it out (which of course had to be done anyways) and threw away anything that wasn't gluten free or that had been contaminated. We are doing really well at avoiding cross contamination on the rare occasion we are cooking something with gluten in it. We use some of our old cookware that we saved and wash it separately with a different sponge. With the exception of the things we just don't have the money to purchase, I think we are getting along nicely with the gluten free kitchen.

When I heard about Eden possibly having a Celiac's Diagnosis, I looked up symptoms and saw a lot of behavioral symptoms, and I was secretly hoping that all of Eden's behaviors would just magically disappear after changing our diet. The behaviors like: aggression and even violent frustration when she can't do things, anxiety, stimming, inconsistent eye contact, her ability to sit and attend to tasks without a ton of redirection, even some of her speech issues I had hoped (and maybe even prayed. please don't hate me for that statement) that things may get easier with Eden. I'm not sure if I thought it would be cure her with this one change, but I thought things should get much easier for our family. I'm pretty sure you know how the story ends...

And for the first few weeks of the diet, I could swear that things had changed for her. It seemed her aggression had almost gone away, when frustrated she didn't call people names and wasn't disrespectful when upset. She was giving great and consistent eye contact with our in-home support and the rest of us which has been an on and off battle. She was sitting and attending to table work doing things like coloring and drawing (in the past just looking at crayons would send her into a panic that usually ended up in a lot of fighting and a meltdown) and inside my head I was doing a little happy dance saying Yes, we finally figured this out! I would like to say that through all of this her stimming never really decreased at all.

Fast forward to about 3 weeks ago...slowly we noticed that Eden started name calling again. Pieces coming back, not as badly as she did before but still it was super disapointing and even more than a "normal" 6 year old. Then she started doing a lot of kicking, bite attempts and throwing things at people again. She had troubles at home starting and continuing tasks again. My in-home support noticed that there were some pretty significant behavioral changes in the weeks she had been at our house. We are doing about 15-20 minutes of "school work" at home 3-4 days a week practicing letters, cutting, coloring, even reading to help with academic skills loss during the summer, because she ended school a little behind grade level. Slowly as things went back to the way they were before the diet change. I know, I know... that there are a lot of factors that we can attribute to this.

Ok, I've got to explain a little. I'm not saying that I want to "change" Eden. I just see how things are so difficult for her in some ways and always want to make things easier for my kids. Wouldn't every mom? Some days, I just hate the fact that she has all of this other crap to deal with (sensory issues, stimming, communication troubles, anxiety) and try to navigate being a kid. Also, she doesn't seem to notice her differences from other kids now but I see it. She is very "over the top" and seems self-centered because she craves attention, she doesn't listen to kids and wants things her way only and most of the time all she wants to do is be chased. Kids that don't know her, look at her funny and you can tell they find her annoying and I try my best to have them figure it out but end up being that mom who is hovering because I want kids to like her and want to play with her. I know every kid gets to the point that they see their differences and when she does figure it out, I think she'll be pretty hard on herself about it. I'll be doing my best to prevent that and be proud of her differences.

On to some good news about this change...

One really good change we've had with Eden when it comes to the diet change is her appetite. This is the kid who a few weeks ago went on a food strike and it didn't seem to phase her in the least. About 1/2 my posts on this blog mentions some kind of food challenge we've had. Either they are sensory challenges or her being a picky eater. Or the fact that she would have major anxiety and aggression when we would sit her at the table with food she didn't like to look at let alone eat. Since about a week after the switch to a gluten free diet, Eden's most common sentence is, "I'm hungry." It's been a huge welcome change.

She eats pretty much everything I put in front of her for dinner (yes she is still eating lots of non-food things as well but we did make sure our toilet paper was gluten free!) and has been trying new foods and loving them. She needs to eat breakfast, snack, lunch, another snack, and dinner  She is eating things she didn't like before like mashed potatoes and ham among other things and asking for seconds of everything. It's been a very wonderful side effect of having a belly that doesn't hurt all the time. I actually haven't heard her say her belly hurts since we've started. I've weighed her once in the beginning of June and again yesterday she's gained 2 lbs and crossed the 50 lb mark in 2 months! That's insane! This is the kid that took until the age of 4 1/2 to get to 40 lbs. There is an underlying worry that I'm not mentioning, but binge eating is common with kids with sensory issues and we'll tackle that if we need to in the future. Such a great change and it makes dinner such better family time because there is not as much crying and fighting with her.

One last thing, I would really love to thank the University of Chicago Celiac Disease Center for sending Eden her gluten free care package. This is free for all kids as long as they newly diagnosed children who have had a positive biopsy. I encourage anyone who can to donate to this program by clicking on the above link. (Eden received this package because of her positive biopsy testing and providing proof by allowing them contact to her doctors for confirmation and is offered to all children free of charge)