The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, June 17, 2012

Happy Father's Day

 The past couple days have blended together for me.  I find myself so focused on Natalie's gluten free diet that I get lost in time.  I have made many special trips to the store in search for different gluten free foods.  I decided to try and follow her diet myself so I could see how it feels.  I'm having a hard time not eating breads, crackers, and such.  I'm realizing how many foods have gluten in them.  However, there are many foods we like that are gluten free...such as rice, potatoes, meats, veggies and fruits.  I believe it will take Natalie some time before she doesn't feel the void of wheat and other grains in here diet.  We are wondering if she is struggling with dairy as well.

 Natalie's getting stronger each day, but still feels fatigue.  Today she took a bowl with her outside to the garden to pick peas and strawberries...Natalie, Alice, and Evie ate plenty of peas.  We feel lucky to have a garden, which was made possible by Kevin.  What a lovely thing it has been for the kids.  Natalie checks each day to see if there are more ripened strawberries.  Sometimes when the boys are playing outside they will stop for a snack out of the garden....maybe this is why Natalie waits for the strawberries...she needs to beat Blair to them.

We have not heard anything from the doctor regarding Natalie's confirmatory celiac test.  By Tuesday we anticipate more news.  


p.s. my phone is having trouble so I have not been able to retrieve any messages or texts for a few days...if any of you have sent messages, I apologize for not responding.

Natalie's bin of gluten free foods.  I think it is so cute when I hear sounds of wrappers coming from the pantry and I see Natalie's little body leaning over her bin finding snacks.

 While Tyler was at church, the kids wanted to do something for Dad for Father's Day.  Blair came up with an idea of his own to make dad a special drink.  He mixed milk into Ruby Red Grapefruit Juice.  He covered it with a napkin so it would stay the meantime the milk was probably curdling in the acidic juice.  He sat on the driveway and watched for Tyler to arrive from church.  Blair could hardly wait.

Here it is and yes Tyler drank it was definitely special.  Blair thinks it's so yummy. Tyler says it tastes like jet fuel.  Then again, Blair also prefers apple juice with his breakfast cereal rather than milk.

                                              A giant long Father's Day poster from the kids.


  1. There is a store in Taylosville called against the grain. It is an entire store for people with food allergies mainly gluten. They even make special bakery items such as pie, cakes, cupcakes or things that you may need near the holidays. They also have a lot of gluten free frozen foods like chicken nuggest, pizza and fish sticks. It was started by grandparents after their granddaughter was diagnosed with celiac. For me, when we were doing the gluten free dairy free diet for my son with Autism it was a great resource. Also, dominos pizza now has gluten free pizza. It is hard at first but gets easier with time. Good luck!

    1. I would NOT trust dominos pizza!!!!!! They are not trained well with cross contamination. That is one of the hardest parts of being gluten free- cross contamination. The Pizza Pie Cafe (I think that's the name) in highland by Kohlers offers gluten free pizza and pasta.

  2. I have been following your blog for awhile now. I have celiac disease myself. I am concerned that the doctors had you put Natalie on a gluten free diet before the blood test was done. You have to be eating gluten for an accurate test result. There is a lot of blogs online with lots of great recipes and info. I have one myself, but haven't put anything new for awhile. Good Luck and if you have any questions or need help. Let me know:

    1. Another great resource is the Gluten Intolerance Group of Utah County. They meet once a month and have a facebook page as well.

  3. There is a local girl that makes gluten free baked goods. You can buy them pre-made or as a mix. It's amazing stuff and I don't even have to eat gluten free!
    Her name is Angelina Sutcliffe
    This way Natalie can help bake her own gluten free things!
    Good luck to all of you! The girls are looking fantastic! I love following your blog to see how they progress all the time.