Wednesday, January 12, 2011


No, we don't know anything yet.  We are scheduled to see the doctor on Friday.  I've been waiting for this date for a month and a half.  I'm ready to find out what we are dealing with.  It can be hard to have something hanging over your head, kwim?

Our pediatrician set up the appointment for us and was fine with waiting until now since Eliana is not having a lot of symptoms.  I hadn't heard yet from the hospital so I called this morning to find out what we needed to do to prepare for the appointment.

To my surprise, I found out that this appointment is just a consultation to meet with the doctor.  *sigh*  I thought we were going to have the procedure done.  I wondered why I hadn't gotten any information from them and now I know why. 

For those who are praying, thank you.  I'll know more on Friday about when the testing will be scheduled.  I'm hoping we won't have to wait another month and a half, though I've heard that their schedule is tight.

I've been trying to learn a little bit about this disease.  I'm not diving in yet until we know for sure.  We can't yet go on this diet until the testing is completed either.  I've looked at some websites for general information.  I've looked at the grocery store and even online for items.  Can I just say that WOW, are the prices high!!!

So, for awhile longer I will wait.  I know that I can learn in the waiting.  I know God is with me and He is in control.  I trust that He will use all of this for good.  I see His hand in small ways even as I wait. 

While I was in Wal-Mart the other day looking, a gal in the same aisle spoke to me.  She encouraged me and offered to help.  She gave me her name and number if I had questions.  If we are walking this path, having someone local who can help teach and guide me will be a blessing.

A number of friends have sent me weblinks and recipes to have as they find them.  I'm blessed to know that the people are thinking of us and praying for us.  I'm thankful for the support.  I know that if this becomes a part of our life that things will be greatly changed for all of us.  All food becomes an issue whether it is in our home or at someone else's.  Eating out will probably just not happen.  I'm grateful to have great friends and family! 

Even at church, the children get snacks in Sunday School.  Its usually goldfish which are one of Eliana's favorites!  I've looked for a replacement that is similar but thus far haven't found anything.  (I'd love to know of something if anyone out there knows!)  I did find a recipe for making them - and even a cute little cookie cutter to make them fish.  Again, not going there unless I have to.  Baking is not one of my hobbies.  (Thankfully though it is one of Rebecca's!)

While at church on Sunday, I mentioned to the gal in charge of the preschool area that Eliana was going to be tested this week and that I may need to bring in a different snack for her to have.  She immediately told me that she would be happy to bring in snack that worked for her.  She asked me what types of things she could have and to let her know what would work.  I was stunned.  I'm blessed that she cares for my kids (and me) and is willing to do this.  It just felt like God caring for me adn telling me that this will be alright. 

We've been dealing with a variety of food issues for several years now.  (Eliana struggled with eating from the beginning and had feeding tubes.  Daniel struggled with eating due to the Sensory Processing Disorder.  We've made great strides over the last 3 years!  Joshua with type 1 diabetes also requires managing food in a new way.)  It has been a lot of work.  The ironic thing in all of this is that I really don't like to cook.  Did I say that already?  LOL  I don't mind it and am able to cook well (I think), but it is not something that brings me joy.  (Hmm ... maybe that is a lesson I need to learn!  Finding joy in this task.)  And yet, we are still facing more food issues. 

As I contemplate celiac, I see all of the ways this is going to be hard.  Even the convenience of fast food will now be gone.  (I know that there are some things on the menu, but its not the "kid food" of nuggets and hamburgers.)  Now, we don't eat out often, but it is nice for when we are on the road.  The cost of grains are so cheap, especially since I grind our wheat.  I'll need to find another source of buying replacements as the products at the store are just really expensive.  (Anyone know if you can grind rice to make rice flour?)

I'm rambling and wondering if anyone is even going to make it this far.  At this point, I'm disappointed by the wait.  I was hoping to know something this week and now I'm not.  Wait.  Wait.  Wait.  So much of life seems to be about waiting.  So much of our culture is about speed and having it NOW. 

I guess I have more to learn about waiting.  Trusting.  Knowing that God has this all in His hands.  He is in control.  He will guide me and help me in whatever comes up.  He is good.  He is faithful.  So while I'm disappointed, I also have His peace.  To be honest, I've resigned in my heart that this will be the next new path for us.  It seems easier that way than to hope differently.  Maybe I'm hoping that the news will be easier to hear if I'm prepared for the worst.  No matter what the news, this is no surprise to God.  No matter what happens, I know that He loves me and He loves Eliana.  No matter what happens, I know that God is good.  He is good. 

So while this news was not what I expected today, I'm choosing to rejoice anyway.  God has not called us to a life that is easy or free of pain.  He has called us to suffer as He did and to sacrifice.  Walking through trials has given me a greater understanding of Him and hopefully a bigger heart for others.  I pray that He will use this to conform me to His image.  Now that is something to be excited about!



  1. Oh, Leslie....I'm just now hearing about all this. (You first knew me as Wendy in MT on FIAR...).

    Before Jen was diagnosed with Type 1 Diabetes, she was diagnosed with Celiac....Then after the diabetes diagnosis, she was "undiagnosed" with Celica (but I still wonder sometimes!). Yes, it is a radical change in lifestyle! But let me tell you, there is a LOT more available now than there was even just the short 7+ years ago! I think, in some ways, it might just be easier to basically switch the whole family over to gluten free....and safer for Eliana, too; there won't be the risk of "cross contamination".

    You mentioned grinding your own grains. I am not sure if it will be safe to use the same equipment you've been using to grind wheat, to grind gluten free grains. It would take a lot of cleaning. Same with your bread machine,if you use one for bread making. Of course, this is all just going from memory, and that is over 7 years old now!! LOL Find out for sure from someone who is more up to date on it all....

    Praying for your peace of mind as you wait. I think waiting is the hardest part.

  2. The waiting is so hard! I think it's much harder than the answers because of how your mind works. I hope your wait will be short after Friday and I'm still praying that you will be spared this additional diagnosis.
    Love ya!

  3. I made it all the way. I sure hope you get the tests quickly after your Friday appointment. I will be praying for you all. I sure hope there is an easy way to merge all of the special diets. I wish we could have seen you when we were up. We were running like crazy.

  4. ((Leslie))

    If celiac is what you all are facing, there is a way to eat out. I know that's a *little* thing but it can feel like just another huge way in which you are different. (I speak from experience with anaphylactic food allergies in one of my children). There are some great local eateries and bakeries in the Raleigh, Cary, Chapel Hill area that do gluten-free meals, vegan gluten free meals, etc. Let me know when you are ready for the info! :)

    I'll be praying for you as the Lord leads! We need to get together sometime! We'll be at UNC Friday?


  5. Praising Him for keeping you -- looking up, faithful and joyful!!!! Love, Kathy

  6. Hugs my friend.

    James is off on real food challenges in hospital for 8 weeks - feb/march I'm thinking of you. Of course James is older so will be easier than your little baby.

    I nominated you for a blog award, to thank you for your great posts

    Love Leanne

  7. Leslie,

    I'm sorry you have another issue to deal with! Are you familiar with the Einsten Syndrome website and email list? I'll include the link here. It's a list for parents of children with DS. I have enjoyed it alot - my daughter, Lydia is 11. Anyhow, quite a few kids on the list are on special diets and the parents on this list are so helpful. If you get a diagnosis of celiac I would highly recommend joining the list and asking questions. The "join" button is down at the bottom of the left side bar.


  8. Wendy - thank you so much for sharing! Its so nice to hear from someone who has been in the trenches with this. I had wondered too about using any of my old equipment. I'm hoping the bread machine may be alright since we wash it out after each use - but we'll find out. Agreeing with you too that putting us all on the same diet may be a help for all of us.

    Lisa - Yes, waiting is hard. Seems like I've done a lot of that over the last 4 years. Guess I still have a lot to learn.

    Dawn - I wish we could have seen you too, but totally understand the running around!!! I'm hoping that if we need to that merging the diets will be a good plan for all of us.

    Kristin - Thank you! If needed - I would love your lists! I'm sorry we couldn't meet with you (today, right?). We were at Duke today. All of Eliana's care is there. Hopefully the next time!

    Kathy - Thank you and hugs

    Leanne - I'm so sorry you are dealing with all of that with James! (((Leanne))) Sounds like a lot friend. Thank you for the blog award too. You are so sweet and I'll try to play soon!

    Anne - Thank you so much for sharing. That site looks amazing! I'm not familiar with it - so thank you for letting me know! I've had a hard time keeping up with a lot of lists, but if we are walking this path, I know I will need a lot of help! BTW, I love your daughter's name!!! It was the other name we were considering for Eliana.

    Hugs and thank you to all of you!

    With love

  9. I hope and pray you can find answers soon!


  10. Hey Leslie,
    I'm just "catching up" with your blog posts, and, Yes, I made it all the way to here. I'm so sorry you are having to deal with One-More-Thing! I don't know much about celiac, but for a while the doctors were concerned about that with Thomas. His problem turned out to be an allergy to wheat...and many other foods, but not celiac. In fact all three boys have now been diagnosed over the years with severe, anaphylactic food allergies. The strange thing is that they are all three allergic to DIFFERENT foods. I understand the cooking challenges you face. There are nights when each child is eating a different meal! I'll be praying that you find answers soon.
    Love you sweet friend!


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