Friday, February 4, 2011

Got the phone call

I'm not even sure what to say.  Eliana's GI doctor called.  I have to say again what an incredibly kind, caring and patient man.  I appreciated that he took the time to call, to explain and to answer questions.  I never felt rushed or silly at all with my questions. 

Even though I knew the call was coming, it still is hard to have a doctor calling with test results.  I was able to handle the call.  I've handled the day well (I think).  It hits me though in pieces. 



"Mild changes were observed in the tissue that is consistent with celiac disease"

He explained that because her numbers were so very low and the changes so mild, that it is likely that we've caught it at the very beginning.  "It has to begin somewhere" and it looks like this is it.  There is a "remote" possibility that this may not be celiac, but he didn't think so (and honestly, neither do I).  In my heart, I've just felt like this was coming. 


We have two choices:

      1.  We can accept the diagnosis and begin treatment.
      2.  We can wait 6 months and do the blood test again

Dr U explained that there is no urgency to treat this based on how early it has been caught.  Not treating it now will not produce any permanent damage to her.  Any damage that might be done with celiac's disease is reversible.  If we don't treat and begin to see symptoms earlier than 6 months, we would need to reevaluate.  Based on her results, we will want to have the rest of the family tested as well.  Either now if we are going to begin treatment for Eliana or we can wait 6 months to see her results and go from there.

So, there you have it.  Eliana has celiac's disease.  I hate writing that out.  I hate seeing her name associated with one more thing.  I hate diseases that strike children. 


Here are some of my thoughts on this.  And yes, some if it is going to sound whiny even though I know this will all work out.  I know God will equip us to handle this.  I just wish we didn't have to, kwim?

I know there are gluten-free products out there.  They are also expensive and in small packages.  (Maybe there are resources that I'm not aware of though!  I'm hoping!)  I'm going to have to get really creative in working out our food budget to handle this.  Not to mention getting creative in the kitchen.  Have I mentioned that I really don't enjoy cooking?!  LOL  Not sure why God keeps giving my kids (and me) food challenges!  And different ones at that!  I was wondering today if this is a small piece in a big picture that I just can't see yet.  He is caring for us in this way and maybe one day I will understand. 


Here is the other piece of the puzzle.  I think in some ways, I'm probably more aware of the challenges we will face due to all that I have learned with managing Joshua's diabetes.  Eating foods - or not eating them - can just be tough!  Without even going through it yet, I know it is just going to be hard. 

Food is such a part of our culture.  Its part of almost all that we do from meals to parties to church and even our homeschool outings.  Its rare that something does not have food as a piece of the event.  So many foods have gluten in them.  So many.   
Since Joshua's diagnosis, I've become so much more aware of food.  I can pick up and eat what I want whenever I want to.  I don't have to worry about what is in it or what it will do to my body.  If I'm hungry, I can eat.  It just won't be that easy for her.

I wonder not just how this will affect us in terms of cooking and preparing food at home, but how will it affect Eliana's life.  She already faces challenges that most of us don't have to deal with.  I just don't want this to be one more obstacle for her in finding her place.  I don't want this to be a barrier to her being able to go places and do things.  I just don't want this to be another way in which she might feel "different".  Now, I know that different can be good.  There are differences that I see in her that challenge, encourage and inspire me.  There is a purity of her heart that truly is a gift.  I think most of us have experienced times though when different is just plain hard.


Birthday parties,  Potlucks.  Snacks at church.  Eating out.  Summer camp.  Co-op.  And more.  Will she be included or will it just be a burden to try to provide foods for her?  Will she resent not being able to just eat what she wants?  I know that has been really hard for Joshua.  How hard will it be and will she even understand why she can't have goldfish?  Or a variety of other foods that we've worked so hard to get her to eat.  She is still so very young.

Want to hear something ironic?  I *love* carbs!  Maybe that isn't ironic as it's probably true of a lot of us.  I have 4 or 5 50 pound tubs full of various wheat products that I bought in bulk.  I use this to bake and cook with - bread and muffins mostly.  Yum!  Now, I know I can make these without gluten, but there will be a learning curve.  (And a cost curve as buying a 50 pound tub of wheat is much cheaper!)  I know, I'm whining again.

As I have learned over the last several years, there are times when you just need to mourn - and then move on.  This is something to mourn.  The loss of a piece of normal for our sweet little girl.  I know it could be worse and I'm thankful for something that is managable.  I know God will use this to teach me.  I pray that He will use this to help mold and change all of us so that we are more like Him. 

I'm not sure where we will go from here, but we're leaning toward waiting.  I can use that time to learn and prepare.  We would love your prayers, advice and insight.  Hugs are great too!  Thank you friends for holding up our precious little girl.

With love
Leslie

25 comments:

  1. (((HUGS))) BIG SIGH with you!
    Life just ain't fair sometimes aye!

    Re cost factor for special food - We have in our home food for James - ie his rice bread & other special foods which really cost. I cook everyday meals different for him. It has now just become a way of life. I plan, plan plan all meals helps with managing it all. He always has his own food for birthday parties etc - now older he takes his own food & cooks it.

    A nurse told me early on never let James feel sorry for himself - best bit of advise - I can still remember having to discipline him re food attitude when young, only had to do that a few times.

    Of course you will have different issues with Eliana ((HUGS))) maybe have pretty containers to keep her food she can have in.

    Oh Leslie I just want to wallow with you a bit! You are an amazing person and coped soo well with what you have been tested with - I'm sure you gonna work this one out too.

    BUT as the wonderful lady, Mother Teressa said.
    “I know God will not give me anything I can't handle.I just wish He didn't trust me so much.”

    HUGS Love Leanne

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  2. Sorry Leslie. I was hoping that they would say she didn't have it. :( Praying for you. {{{hugs}}}

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  3. Just wanted to send you a hug, Leslie. I think you have a healthy attitude of recognizing that you need this time to mourn. It's a huge adjustment and it does take away another piece of "normal." It takes away spontaneity and requires more of your time in the form of vigilant planning and preparing.

    I'd be very willing to help you in any way I can. I've been through the trial and error (lots of it!), and I've learned what works and doesn't work and how to do it cost effectively. I'd be happy to send you information or answer any questions when you're ready. The good news is that there is so much information out there from moms in the same boat, and there are so many more products than there used to be.

    Praying for you...

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  4. I'm sorry, friend. I was hoping it wouldn't be Celiac's. You're not whining, you are grieving. Just like other diagnoses that have come....allow yourself that time. Much love and many prayers!

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  5. No words, Leslie, just prayers and (((hugs))). I just love your precious family and I couldn't just read this and say nothing.

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  6. Hi Leslie,
    I have had celiac disease...just diagnosed in August (however I have had it for years!) I have found that eating has been MUCH easier than I thought! Most of the time we just don't have a bread at the meal, however we can have starches and carbs like rice and potatoes! I would be happy to send you a load of resources I use and a list of the gluten free products I have tried (and what I thought of them) I am so sorry that your little one was diagnosed with celiac...I know it can seem overwhelming and it is sad to think of this being her life from now on....I hope that I can help with some information for you! (btw, I came over here by the recommendation of Karen G, who thought her celiac friends might be able to help you!)

    My email is kahri (dot) lynn (at) gmail (dot) com

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  7. Oh, sweetheart, I am so sorry you are in this place again! I pray you are feeling God meet you there. What a blessing that it was caught so early, even knowing it doesn't feel like a blessing at all that she has it. Wish I could be there for you. Call me when you catch your breath and let's talk; I miss you!

    Jill

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  8. I'm so sorry Leslie. I hate that you have to juggle even more now. Praying for a reprieve.

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  9. I am sorry to hear that. Sending lots of love your way. She is super cute in those pictures!

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  10. Oh Leslie, I'm so sorry. I have some other thoughts, but for now, I'm just sending BIG hugs. Love you!

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  11. All I can do is give you ((((hugs))), and I'll continue praying for you. I think that might have been the same wording they used for Jen: "Mild changes were observed in the tissue that are consistent with celiac disease"....And then later, different doctors said she did NOT have Celiac.

    If you choose to wait, just use this time to research, and all that....I'm sure you've already been doing some....

    You'll be in my prayers!

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  12. O Friend. I am so sorry to hear this! I know only too well what you mean about losing a piece of normal. I have felt that way with issues that two different children have faced. It is hard and sad.

    On a practical note, have you looked at buying in bulk from Amazon? Also check out this blog for gluten free ideas:
    http://www.amongstlovelythings.com/

    Thinking of you.

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  13. Ah, friend. I'm sorry for one more thing. Please do let yourself grieve the loss. You don't sound whiny; you sound grieved. I think you would not be honest or real if you didn't feel this loss. Of course you can do this; of course you will do this, and you'll do it well. But that doesn't mean it isn't sad and hard. Love you, girlie.

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  14. Hi Leslie,
    A friend sent me to your blog this evening. My daughter was diagnosed with Celiac disease when she was 3.5 years old -- May of last year. I remember my first thought, after getting the call, being "She won't be able to have cake at her own wedding!" I know this may sound strange, but having this diagnosis has been such a blessing for our family. I now maintain an entirely gluten-free house. We've adapted, we've adjusted, we've come to find and love all sorts of "other" foods. My sweet daughter was in so much pain, was losing weight, etc., that having her enthusiastically *inhale* everything in front of her, gain weight, FEEL BETTER, was incredible! Celiac is amazing in that it's treated "only" through diet... no lifetime of drugs, no medical continual medical procedures, and so forth. But yes - it IS a lifetime thing. "Gluten free" foods ARE more expensive, so we generally stick to things that are naturally gluten free. Rice with meals, instead of bread... fruits, veggies, cheeses, meat, and so forth. I'm not sure what other dietary limitations you've got in your household, so it may be more challenging... but once you get over the initial shock you'll realize YOU CAN DO IT. You'll get to the point where you find yourself thinking "Is this really all there is to it?" You'll learn to take "safe" snacks with you when you go to church, co-op, etc. You'll realize that you're all eating healhier; that you're saving money on fast food; that you're developing a sense of creativity in the kitchen. It's a lot to take in, and it's a steep learning curve right off the bat. But it's doable, and SO worth the sacrifice. Blessings to you and yours - know that YOU CAN DO IT!! - Kathryn

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  15. I don't have any words of wisdom, just a big cyber hug. God will see you though. I'll be praying for you and your family.

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  16. Oh Leslie. I am so sorry! :( One of my best friends started this journey a couple years ago when she found out her and her two little girls had Celiac Disease. I know that she has learned A LOT...She has somehow figured out how to live on a very small budget since she is a small town pastor's wife. If you are interested I can definitely connect you with her. Just let me know friend. Praying for you and your family...and the many challenges you have had to face!

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  17. Oh, Leslie. I'm so sorry to read this. I so understand the 'one more thing'. I know that you will do whatever it takes to treat this issue, but oh, how I wish you didn't have to.

    It's okay to mourn the simplicity of just being able to eat!

    My first instinct is that I would wait and use that time to form a plan. I will pray for you as you make the decision that's right for your family.

    Love you,
    Lisa

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  18. Leslie, I'm sorry you got these specific results! I know that we were all hoping for a very different call. (((Leslie))) And, after you've had your time of mourning, you're going to climb up the learning curve and bless others with the wisdom you gain as you face yet another challenge. Don't know that I can be very helpful, but I'm here! Lea

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  19. Hi Dear Friend,

    I wanted to relate information we have been gathering on corn. There is a wonderful book Kurt has been reading about corn. What surprised me in the book was the ladies complete dismissal of the usual cornmeals as being very poor in quality. However there are varieties and types of corn that you can buy and grind that have such amazing textures that they can be used as a flour substitute to the degree that the author prefers them for her angel food cakes. They are delicate, smooth, delicious and completely gluten free. If you would like the author and book - I will be glad to provide it as well as possible sources for bulk purchases.

    All my love as you grow and cope with this new information. I am grateful though that you can have this information. A dear friend of mine nearly died in her 50s after a life of untreated celiac disease. And she was a nurse!

    Much Love,
    ~Laura

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  20. I am so sorry you all have to face this. I know the food issues make everything more complicated. I am praying for all of you friend. What a wonderful and devoted mother you are. Praying!
    Blessings,
    Dawn

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  21. Hugs dear friend. Take time to grieve as the others have said. It is a change and it can be challenging but it is doable. I see that Amazon now has a grocery section and lots of gluten free foods too-prices are not too shabby either. HTH.

    Praying for you all!

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  22. Oh dear friend,

    God says He doesn't give us more than we can bear.... He must think you terribly STRONG! My heart goes out to you, we can help by having gluten-free snacks to share on outings. I want to help you through this--yet another-- difficult transition.

    Phil. 4:6-7 sustained me last summer...

    Love & prayers to you,
    Adele

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  23. Leslie, oh my. I'm sorry. I admire you so much for your focus on the positives and your being so open about the uncertainty. Health issues are hard. I was actually just thinking this past week about returning to gluten-free myself. My doctor in Raleigh says I need to be. I am not celiac, but I can agree with those who have noted extra benefits from going gluten free. I will get my notebook out and look up everything I have to see if I have any resources that will help. I love you and your little princess! You'll do well with it; you'll get a handle on it. Until then, big hugs and know that everyone is thinking about you. Lynn

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  24. Leslie,

    I am so sorry to read this. Not the report you or any of us were hoping for. I hear your heart. I know you will accept and attack this with courage and wisdom, but it is normal and appropriate to grieve the loss of normal eating. I'm praying God will encourage your heart and give you wisdom. And praying for Eliana too, that she will fall in love with the foods she *can* eat, and accept this as her "normal". She'll probably never remember anything else! (which is a blessing!)

    Prayers,
    Pam in SE MI

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