Wednesday, July 31, 2013

Hold the Gluten x 2

In April and May we went through a really rough time with Peyton being sick and after a long month and lots of worry and concern we determined that there was something going on with gluten and her reacting to it. 

Pretty much right after we got to Washington we met with her pediatrician and she gave us a referral to Seattle Children's Hospital to their GI department. Thankfully they were able to get us in the second we were there and get us started in their system. After meeting with the GI doctor they agreed that there was something going on with gluten. However it could be one of two possible issues, a simple intolerance to gluten or Celiac's Disease which is an autoimmune response to gluten which would require more stricter control of cross contamination issues,  however to have a confirmed diagnosis of Celiacs she would have to have a serving of gluten a day for two months and at this point we were all in agreement that we needed to focus on gaining weight back and getting healthy again. We did do some initial blood work which had some areas of concern likely caused from being so sick for so long and possibly could show some signs of Celiacs. We left with the plan to continue gluten free and come back in a month to evaluate for weight gain and blood work improvements. If we came back and things weren't improving we would look for other sources. We also had a plan to meet with a nutritionist to help with the transition.

Meanwhile, Graham had his well child visit with the pediatrician and I brought up having him tested since he had been having gluten. We weren't seeing major symptoms in him but wanted to test before we had a bad episode like we did with Peyton. The blood test came back and surprisingly it was positive for Celiacs. Not only was this good to know for Graham but it also made it more likely that Peyton had it as well and we did need to monitor closely for cross contamination. We were supposed to have a initial meeting with Seattle Children's Hospital for him however it wasn't scheduled until just before we left and we all got sick and couldn't go in.

So, we started our new life of being keenly aware of gluten, using separate toasters for the kids, separate butter, peanut butter containers and continuing being gluten free. Thankfully it was super easy to make the switch in Washington with the abundance of grocery stores stocking items to the many restaurants including our favorite donut shop. And they thrived, especially Peyton. It was amazing to watch her weight come back, her energy increase, her appetite grow and overall just transform into this vibrant, happy and healthy child. It was amazing and was so affirming to see the positive changes from changing her diet. We also began preparing to bring items back to Saudi to help with the new diet in a country that is not as gluten free friendly as the States. We figured out how much cereal, vitamins, snacks and more that we would need and managed to pack all of those plus a bread machine in five boxes that John brought back with him....250 pounds of goodies!

Then the real test came....her follow up appointment. I was so nervous! But it was all wonderful news. She had gained not only the weight she lost when she was sick (which was substantial and our goal was just to gain that back) but 8.8 pounds over that! She weighed more than before all this started! Her blood work came back perfect and she exceeded the doctor's goals and expectations! It was such a huge praise and sigh of relief!

As stressful as everything was in April/May and as scary as it was, looking back it is truly amazing to see how God was working through all of it. She could have had her attack anytime and we are so thankful that it happened when it did, right before we went home and that her new pediatrician that we were randomly assigned to and met for the first time immediately was on board with the need to see a GI doctor and that we were able to immediately get into Seattle Children's and were put in touch with a wonderful team there, that she thrived and did so well at home and that we found out about Graham before anything happened. So incredibly thankful that they are healthy and thriving.....just keep the gluten away!

1 comment:

Stori Wann said...

Oh glory. That is such wonderful news!!! I am so happy that Peyton is doing well. I'll be praying that you manage to keep everything gluten free while you are in Saudi. I am sure that it will be quite a challenge, but I know that you are up to for it!