Sophie and Celiac Disease

Two months ago, my younger brother claimed that I had just fixed him a chicken fried steak that was "better than Babe's."  I couldn't believe my ears because I had finally reached the point in my cooking where I could actually whip up something from scratch with flour and one of my family members think it was better than the chicken fried steak he had eaten from a well known and respected family restaurant in located in the DFW area.

I had worked hard at learning to cook especially after the first meal I cooked for myself and Brandon shortly after we got married.  After eating the horrible tasting meal I thought to myself, "This is not good. I have GOT to learn to cook otherwise I just might starve."  I bought a Rachel Ray cookbook and soon collected several church published cookbooks.  I learned to use spices and flour and create some very good dishes.  About 4 years into my cooking, I decided it was time to tackle baking and I said goodbye to ready made cookie dough.  After that point, the only cookie dough I wanted to eat was made from scratch--flour, sugar, eggs.... which turned into some melt in your mouth goodness!

I could go on about my cooking, but what I am actually trying to share is that Brandon and I received a phone call a few days ago informing us that I will FOREVER need to change the way I cook for my family.  Sophie, our youngest daughter, will FOREVER need to change what she eats for the rest of her life.  The phone call we received was from a nurse at Scott and White Children's Clinic confirming that our sweet two year old daughter has celiac disease.

(Below is a lengthy and rather detailed account of how we got to this point.  I am writing this because I want my friends and family to know our journey as well as to promote celiac awareness especially since 1 in 100 people have this disease.  Many times it goes undiagnosed for years and that is why I am being so detailed with my story so that someone else might be helped from reading this blog.  I am also writing this so I can remember and so Sophie can know just how sick she got from eating gluten.)

Almost four months ago, I went to Sophie's two year check up.  I mentioned to her doctor that she had occasional diarrhea after she ate donuts, pizza, or anything with a lot of grease (at least that is what I thought).  My doctor did not really consider it a big deal.  So I didn't really think about it again.  A month and a half later, Sophie did not eat very good one particular day and we got hit with loose stools again, but this time it lasted for about 4 days.  Her body seemed to return normal for about a week and then it hit again, but this time she caught a viral infection as well (ulcers in her throat and a fever).  I was having a hard time distinguishing what she had because she had so many different symptoms including throwing up (--with Brandon having pink eye in both eyes at the same time--- our house was a mess) so I took her to the doctor.

My regular doctor was out of the country so I saw a fill in.  She noticed the ulcers in her throat and said that it was probably just a virus/stomach bug since she had the other things going on as well.  I left feeling content and thinking that this would hopefully be a short-lived stomach bug.  Her fever lasted 4 days, but during that time she began losing more weight.  I called the doctor's office again and asked if I could have a strep test.  I didn't like seeing her feel so bad and just wasn't so sure she had a virus.  The test came back negative.  I felt embarrassed leaving the doctor's office, but thankful I could rule out one thing.  Sophie finally got over her fever and so two days later I took her to church on Wednesday evening.  On my way to pick her up, a friend I was passing by in the hallway told me Sophie had just thrown up.  I thought to myself, "Are you kidding me?!?! How long is this bug going to last?"  But then I began thinking maybe this is an allergy.  When I picked her up our friend and childcare worker, Olga, mentioned that she didn't seem sick.  This was another clue to maybe our daughter didn't have a stomach bug, but instead something else.

The next morning I called the pediatrician again (the 3rd time in less than a week).  I was embarrassed once again, but something wasn't settling right with me on this sickness.  I mentioned to the nurse that Sophie threw up again and was just getting so skinny.  I asked her what I was supposed to do to which she told me to just give her food if she was hungry.  I then replied that this "stomach bug" had lasted long enough and I just didn't think her little frail body could handle it.  The nurse told me to expect the stomach bug to last 3-4 weeks.  I hung up the phone feeling defeated.  Sophie continued for the next three weeks to have off and on loose stools.  As Sophie's appetite left so did her fat on her body.  I could see her spine, ribs, the top of her sternum, etc.  She looked like a little starving child from Africa.  What is so sad is that she really was "starving" in some sense because her intestines were not working properly and I had no clue.

By the middle of July, it seemed Sophie was feeling a little better and so we left to spend time with family in Waco.  While there though her stomach began hurting again and she didn't seem her happy self.  By our second night there, Sophie began throwing up.  After getting her cleaned up and putting her back in bed my family (parents, brother, and sister) began discussing Sophie.  My siblings started googling illnesses related to what Sophie was going through.  And then one popped up that matched all of Sophie's symptoms including her skinny body and huge potbelly.  Celiac disease.  We still were not certain, but what I did know for sure is that I was going to call a pediatric GI specialist in Temple to see if they had any openings.  Kudos to my family for helping me get this process going because if I had waited until I arrived back home in Amarillo, Sophie would have gotten even worse.  We prayed that God would allow me to get an appointment if I needed one.  The next morning I was dragging my feet still thinking I was probably just overreacting and so about 10:45am I called the children's clinic.  Surprisingly, (or rather I should say-- God opened some doors and) I got a 2:30 appointment time that afternoon.  I told the GI all of her symptoms and he had me run some blood tests.  The tests came back suggesting she had celiac, but we needed a endoscopy to tell for sure.  A few days later, my little two year old who was no longer on the growth chart after losing 4lbs was getting anesthesia so she could have a scope and a biopsy performed.  By this time, Brandon had joined me (he had been away at children's camp and it was such a blessing to have him with us during the endoscopy).  We were not scared, but rather ready to have some answers.  After the scope, the doctor told us that he was almost certain it was celiac. We were to start on a gluten free diet immediately.

After two months of Sophie not wanting to eat, weeks of loose bowel movements, constipation, nights of throwing up, long sleepless nights, and lots of tummy aches......It only took 2 days on a gluten free diet and Sophie ran up to me while I was in the kitchen and she told me she wanted to eat an avocado. There had been so many days of Brandon and I pleading with her to eat something (and we had no clue she was in pain) and here two days off of gluten and she was asking me for food!!!!!  We are now a week off of gluten and she has not complained of stomach pain in the last several days.  (Side note: we are going Lactose free for at least a month so that her intestines can heal.)  We have enjoyed pancakes, salmon and rice, fried zucchini breaded with cornmeal, chicken tenders, fried rice and all of these things we were able to cook gluten free AND Sophie enjoyed each of these meals along with other fruits veggies, lactose free milk, and goat cheese!  We are so thankful and so excited to see our daughter happy and not curled in a ball telling us her tummy is hurting.  We are thankful that her body is healing and we cannot wait to see her gain weight again.

The most important part of this entire blog is we give God all praise and glory!  He has helped us all along the way to this point.  Sophie got "sick" the one day/night all my family was around her to see and then they proceeded to help me start figuring things out (Brandon was at camp and with very little cell phone service for 1 1/2 weeks while I was visiting my family.).  God opened up an appointment at Scott and White Children's Clinic (located 30 minutes from my parents house) and Sophie was able to be seen immediately.  God provided a doctor who specializes in celiac disease and he is very personable and was willing to work with us to figure out why Sophie was so sick.  We were thankful that we were able to get an endoscopy within a few days and not have to wait two weeks (like if we had gone to Lubbock).  And finally we praise God that Sophie is feeling better so soon after going gluten free!

 I believe if we had waited another week or two without having been seen by a pediatric GI she just might would have been stuck on an IV in the hospital, but instead she is running around the house happy and not crying out to be held because she is in pain.  She is still tiny (22lbs 10 oz is what she weighed in temple), but God has been with us this entire time and we know God will continue to guide and help Brandon and I as we figure out this new gluten free diet (and for a short time lactose free diet).  I never knew so many things contain gluten and it has already been a huge task of figuring out what she can eat and what she cannot eat.  My first time back in our United grocery store was so overwhelming because the bakery was the first thing to greet us and Sophie can no longer have any of those things made at that particular bakery.  Also, we have to learn how to prepare things separately (because we cannot cross-contaminate) and remember things like not to spread Katelyn's piece of toast with peanut butter and then put the knife back into the jar and spread peanut butter on Sophie's toast.  And for that matter not putting Sophie's toast even in the same toaster as the one the rest of our family uses.  Learning how to cook gluten free will be a challenge, but I do hope one day I can cook these new recipes and be told "this is better than Babe's" without someone even knowing I just used brown rice flour, potato starch, and potato flour instead.  :)

Brandon and I have a lot to learn, but we know God will be with us on every step of this journey.  I love the chorus from the 10th Avenue North song, "By Your Side," '
Cause I'll be by your side wherever you fall
In the dead of night whenever you call
And please don't fight these hands that are holding you
My hands are holding you.  

I also have loved reading during this past week passages from the book of Isaiah because the Israelites were distraught and tired just as we are.   Our situation is obviously different from the Israelites, but yet we are still the same in that we need God's continued guidance while we are weary so that this disease does not overwhelm us.

"For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you."-- Isaiah 41:13

"When you pass through the water, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the Lord your God, the Holy One of Israel, your Savior." --Isaiah 43:2-3.

God is holding us.  He is holding Sophie.  We can feel his presence and we are thankful for all His help and love.