As most of you may know by now we took Big Boy into Primary Children's Hospital on Wednesday to have a scope done to check for Celiac Disease. Celiac disease, also known as gluten intolerance, is a genetic disorder that affects 1 in 133 Americans. Those affected suffer damage to their intestines when they eat wheat, rye, and barley. The only acceptable treatment for celiac disease is strict adherence to a 100% gluten-free diet for life. (This info is from http://www.celiac.com/ if you want to learn more).
Below is an e-mail I sent to my sister-in-laws the day of the scope.
Well, everything went fine today. Big Boy was actually very happy about the liquid diet this morning; eating popsicles, jello, and apple juice for breakfast. At the hospital he was having fun playing with all the toys and coloring, they really make it a non-scary place for kids there. He was happy as can be until we walked into the operating room and he saw all the equipment and doctors in there, then he was clinging to Shafer for dear life. He's so smart, he knew something was going on! They let us stay and help calm him until the gas kicked in and he was asleep. I kept a smile plastered on my face until we were out in the hallway, then I just couldn't keep the tears in any more. There is just something so hard about watching your child be put under then walking away leaving him in the hands of people you just met and hoping it goes well!
It was supposed to take 45 minutes so Shafer and I ran downstairs to the cafeteria because neither of us had eaten all morning. By the time we came back to the waiting room they were waiting for us because Big Boy was already out! It had only taken like 20 minutes. We walked into the post-op room and Big Boy was drinking juice glaring at the TV in front of him. I felt so bad we weren't there when he woke up!! He was pretty cranky the whole time we were there, complaining about the IV in his hand and he kept coughing. As soon as they took out the IV and let us dress him he started to cheer up a bit and by the time we were driving home and he was watching a Wiggles DVD he was pretty happy.
So, overall, not too bad of an experience, it could have been much worse! He spent all evening eating, so he's obviously not feeling any side effects from the anesthesia!
The doctor said from what she saw she's 90% sure he's got celiac. They're going to run some test on the biopsies they took and we'll know for sure next week sometime. But, she said we should go ahead and start a gluten free diet since she's almost positive that's what he's got. So, they'll hook us up with a dietitian and we'll get going I guess.
My Mom was watching the other two boys and I sent her home with two grocery bags full of gluten-full products and our shelves are bare! (although Sadie would argue that they're always bare!) I've gotta run to the grocery store tomorrow and try to stock up on stuff we can eat in these parts!
So, all in all everything went really well and I feel like a huge weight has been lifted off my shoulders!! I've been stressed about this for so long I feel like we can finally start our lives again!
These are some shots of Big Boy right after the procedure. He was real grumpy!
These are the little socks they give them, they looked so funny on his tiny feet.
We've been living gluten-free here for the last few days and it's been interesting. I'm realizing that it's a lot more complicated than looking for wheat, rye or barley on the nutrition labels. There is so much hidden gluten in the strangest places! I can't wait to meet with the dietitian so we can have some help. Shafer's pretty sure that he's got it too since it's a genetic thing and his Grandpa had it. So, our whole family is going gluten free so I don't have to try to make 2 meals every time we eat!
If anyone has any recipes for rice, potato, or corn dishes, let me know, those are our new starches!
Thanks everyone for your thoughts and prayers this week, we really felt them!
9 comments:
I glad you know what's going on, but sorry you have to have such a strict diet from now on for him.
Those pictures are all to familiar, we have been up to same-day surgery at Primary many a times, it's always draining and emotional and once they know the place and are old enough to know what's going on. We always grab a bite while they're doing their thing and once she was awake before we got back too. Now I leave Benj in the waiting room just in case. :)
Gook luck while you figure diets out. We have worked with several of the dietitians there and they will take good care of you and give you lists of ok foods.
I am so sorry for this diagnosis. Not what you want. I babysat a little girl is Seattle with Celiac and one good thing is that she and her whole family ate so much healthier because of it. no more processed foods. We're thinking about you guys!!
Not knowing is the hardest thing. Now that you know what you are up against you can deal with this and move on with your lives. It's hard to be the brave one for your children when all you want to do is hold them and cry. My prayers are with you as you embrace this life changing event. The dietitian will help out a lot. Good luck and much love!
Check out http://crockpot365.blogspot.com/ I think one of her kids has celiac, and there are over 300 recipes for the crock pot that are gluten free! Hope your little one is feeling better soon!
I am glad that you know, but it has still got to be hard!
I have a really good cookie recpie that has no gluten (not that you want to start feeding him junk...I will send it to you!)
I know Mindy Maxwell Robinson has lived with an extreme case of this for a while now, she would be a really good person to contact.
Here are a few links to some blogs that my friend was telling me about. She has Celiacs too.
http://gluten-free-blog.blogspot.com/
http://glutenfreemommy.com/
http://glutenfreegoddess.blogspot.com/
http://iamglutenfree.blogspot.com/
Here are just a few and if you would like I can get some recipes from her personally that she has tried and likes. I am sorry to hear about this but I am really glad that you now know what is wrong and that things can start looking better.
awww bummer. I had to go gluten free when I was getting treated for an ulcer a few months ago. Gluten creates mucus which agitates the ulcer. I was so surprised that even foods you wouldn't think contained gluten had it! Good luck with everything. My only advice is to check the website www.livingwithout.com They have a magazine too. It has done wonders for people who struggle with food allergies. It contains a lot of tips and recipies too. Hope this helps! :-)
You are so lucky to find it so fast! Most people live with it at least until late teens and then realize they don't have to have a stomach ache all the time! I don't know about Utah, but at Colorado even the stores have gluten free products and aisles. But, if you'd like recipes I have a few friends with celiacs and they can make some pretty good stuff. It is more expensive though...sorry!
Wow, I had no idea this was going on. I'm glad you were able to get a diagnosis, since waiting and wondering is so hard. Cory & I have gone semi-gluten free (neither of us has celiac disease; it's just healthier), and yeah, gluten is in EVERYTHING. It looks like your friend Natalie gave you some good websites. I'll let you know if I come across anything -- Cory took a nutrition class from a teacher who has celiac disease, and got a copy of her cookbook. I'll look, see if there's anything useful in there. Good luck with everything!
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