It is so hard being Owen’s only advocate. Sometimes I wonder if I am imagining everything. It’s nice to have Chad by my side. He has seen what I have and he reminds me I am not nuts.
We got Owen’s blood work back – the blood he had drawn after his biopsy. In this panel they were looking for “two things”. And, if they were there, he would have been classified as a true, and very young, Celiac. Well guess what?? One was there and the other wasn’t. He has the genes needed to even ever contract the disease. But the serology test was negative. This very well could have been a false negative (this particular test is not the most reliable) because he didn’t have gluten in his system when he was tested.
We have spoken to countless people in the Celiac community. Everyone tells me that since the biopsy was positive, then he is a Celiac. The only one who wants to give him gluten and then test him again is his GI doctor.
I get that it wouldn’t be fair to eliminate gluten from his diet if it wasn’t necessary. But considering all the gluten free friendly food out there, it honestly would not be as hard or burdensome as one thinks.
I have struggled with what to do. I am continually bugging the Houston Celiac Support Group Chairman and our Nutritionist and even a specialist in Los Angeles. Chad and I have decided, that at least for the next few years, Owen will be gluten free. I don’t want to see him in pain and until he can intelligently tell me what he feels like after ingesting the stuff, I won’t knowingly give it to him.
We have also decided to go gluten free as a family. It has been three weeks…and we were excellent the first two weeks…man are the holidays making being “good” hard.
I am a pasta freak. I could honestly eat some form of it for every meal. Thanks to those who have traveled this road before me, we haven’t had to try all the gross gluten free pastas…we get to jump right in to Tinkyada. You can barely tell a difference. Oh, and of course Amy’s. The one thing I have yet to find that I like is a pizza. But we are just starting this journey and I am confident there will be a tasty product out there.
Hello Whole Foods. We are going to get to know each other quite well!
Food Update: as I have posted earlier, we started with chicken. It went well the first two days, but we took an unintended break and then when we picked back up it didn’t look too good. Some days we had awesome diapers but others…well, let’s just say it could have been better.
Thankfully, since Thanksgiving, the night screams have dwindled. I know the acid reflux medication is working!
We have also introduced avocado, and 100% organic rice. I have to prepare it myself. The first time we tried rice cereal, back in August, I bought Earth’s Best…bad reaction. But so far, he isn’t reacting to the rice I make…
This kid has jaws of steal and if he doesn’t want to eat, which he doesn’t want to do most of the time, he doesn’t. The Nutritionist thinks it is an emotional thing now. So far his experience with food has been painful. We just have to show him that not everything hurts.
I am starting to suspect that one or two days of a food are fine but any more than that is not. Avocado for example, he did okay at first but by day three we started to see signs of old Owen.
Since he hasn’t been a big fan of food, once I found something he liked and would eat, it’s all I want or trust to give him…it is rice, chicken and a little of his formula puréed together. It smells horrible but he likes it. Last night was day three and so far, so good.
Another big change has been the formula. He has been on Nutramigen AA since January 2010. We tried to drop down to regular Nutramigen a few months back but saw blood in his stools. So back to AA it was. But this last time we went to order our month’s supply, the manufacturer was ALL OUT! And they couldn’t ship again until December 28. This meant that we had to find it elsewhere and that was not easy, nor was it cheap! This stuff is already expensive as it is, to have to pay even more for it physically hurts. So we decided that we would try regular Nutramigen again; but this time, we would introduce it gradually. We first started with 1 oz of regular to 9 oz of AA. Now we are up to 50/50. And no blood visible to the naked eye!!! We will need to take a stool sample in for testing but I am very hopeful he has or is beginning to grow out of his dairy allergy. They said this would probably happen after his first birthday. And he is almost 14 months old! The difference between regular and AA is this: AA has dairy and soy proteins but they are broken down to their most elemental form – this makes it easier for someone with a severe allergy to digest. Regular is highly broken down, but not as much.
We are making progress!! Oh, I got gusty one day last week and gave him carrots…I wanted him to have something “sweet”. Um, bad mommy. I won’t be doing that again! He didn’t care for it anyway so no big loss there.
