Monday, June 27, 2011

Waiting for another phone call

We had the first phone call 6 months ago.  We've been waiting for another one this month.  Its official.

Eliana definitely has Celiac Disease.

I've put off writing this for a few days because I just didn't want to do it.  Its not fun sharing news that isn't good, but it does need to be done.  For those who are new to this blog or don't remember, here is the background briefly.  Eliana had a routine blood panel run in December.  (Because she has Down syndrome she is at a greater risk of various things - thyroid disease, leukemia, celiac, etc)  She had elevated levels of TTG.  Anything above 4 was considered above normal.  She tested at 5.  Based on this, we had a biopsy done in January.  The results showed signs "consistent with Celiac".  The doctor though was amazed that we found this at a "5".  He said that since she had no symptoms and her numbers were only slightly above normal, that if we wanted, we could wait 6 months and have her tested again.  Just in case in ended up not being celiac.  Once we choose to go GF, the tests will no longer be valid so it is good to be sure.  We decided to wait 6 months which our doctor thought was a good choice.

We have not changed her diet, but have noticed that she is increasingly fussy at meals.  She has also started eating less.  :-(  She is not able to tell us verbally that she is in pain of any kind.  We went in for another blood draw at the beginning of this month.  Eliana screamed and cried and fought it.  On the first try, the vein blew.  We put more numbing cream on the second arm and then waited and tried again.  Our ped did it this time.  She was able to get some blood and then the vein blew in that arm too.  She didn't think it was enough to get all the testing done, but was enough for the Celiac screen.

We waited for the results.  And waited.  I called while we were on vacation and heard that the lab couldn't find her blood.  They kept looking.  And never found it.  :-(  We went in again last week for another draw.  (It had taken this long for the bruises to heal.)  This one went much better - thankful answer to prayers!

Again we waited.  Her thyroid is fine.  Her cholesterol is elevated.  Her glucose is 101.  Then the numbers I was waiting for.  There were two parts of the celiac screen and I don't remember the name of both of them.  For the first, she was positive.  The second was the TTG number and it was 86.  This is the one that was a 5 in December.

So, in waiting, we have clear results.  I wish they were different, but in my heart, this is what I expected it to be.  Do I wish we didn't have to go down this road?  Absolutely.  However, I'm trying to look for the positives.  Wanting to choose to be thankful.   I'm thankful we know what is going on as Eliana is not able to tell us that she is in pain.  I'm thankful for resources that are available.  I'm thankful for the offers of help that I have had.  I have a number of people that I need to contact that have offered when this first came up.  I just wasn't ready to tackle it until I had to.

Because we now have 2 children with autoimmune diseases and this can tend to run in families, they want us all to be tested for celiac.  I have appts scheduled for the rest of our children this week (except for Christopher who already tested negative).  Please pray that the testing would go well.  It's going to be challenging I imagine for our little guy with Sensory issues.  I'm hoping that none of the rest of us will test positive though I do think will be easiest for our family for us all to try to follow a GF diet.  Maybe I'm wrong though, I really don't know.

I would love prayers, advice and wisdom.  Here are some of the things I'm wondering.

*We will be leaving to travel soon half way across the country.  Any tips of travelling and eating GF?  We'll be driving, staying in hotels, eating out some.

*Tips on where to start?  I'm planning to do a large purge of my kitchen soon.

*Any other encouragement or advice is appreciated.  Lists of foods that are GF?  I've seen some of the specialty items and they are just really expensive for a larger family.

Thanks for your prayers and hugs and encouragement.

I know that through all of this that God has a purpose and a plan.  He is good all the time.  He will use this for good in our lives.  He will give me strength to do all that needs to be done - and give me wisdom on what I need to give up.

"Consider it all joy, my brothers, when you meet trials of various kinds"  James 1:2

I studied the book of James when I was pregnant with Eliana and it continues to be a source of wisdom, comfort and encouragement to me.  Its hard to consider all things joy when you face trials.  I'm not always sure how to do that.  What I am trying to do is to trust that God will give me the strength to do what needs to be done.  He will use this for my good.  He is going to use this for good in our family.  In all things, HE is good.

With love
Leslie

9 comments:

  1. I'm sorry that I can't really offer any tips on this...it must be so difficult..i'll be praying for you and your family though..thanks for sharing this difficult season of your life with us

    ReplyDelete
  2. Leslie - it's not that difficult - seriously - once you find your "staples", you'll be fine.

    Take a cooler with you as you travel; try to stay in hotels that provide a refrigerator and microwave. I purchased a NON-non-stick electric frying pan that I pack with us - it works in a hotel in a pinch, and I take hot dogs and cooked hamburgers with us to warm in the microwave or frying pan. We take boxes of cereal (fav is Koala Crisp); brownies made from a Trader Joe's GF mix; "safe" chips; deli meat (Boar's Head is always GF, although I buy Applegate Farms when I can find it b/c it is nitrate and nitrite free).

    Red Robin, Cheeseburger in Paradise, Biaggi's Italian Restaurant have gluten free menus. Chick Fil A has gf options. We do a plain hamburger, no bun at lots of places.

    I use Udi's bread to make a bun for my daughter by removing the crusts. A big round biscuit cutter will make them round.

    Try googling the cities you'll be stopping in with "gluten free" for options. Holiday World in Santa Claus, Indiana is a theme park with a GF menu.

    Penny
    www.notnewtoautism.blogspot.com

    ReplyDelete
  3. Hi Leslie,

    thinking of you...running through option in my mind with food and resources. At this point as you go specialty and bulk the best resource is most likely the co-op in Durham. I imagine they are an amazing resource and may be able to help you in your research as well as helping advise you down a path they are very familiar with. Keeping you in our thoughts and prayers...
    ~Laura

    ReplyDelete
  4. I sent you an email, Leslie. Praying for you as you take in this new information and embark on a very new journey!

    Hugs and prayers,
    Denise

    ReplyDelete
  5. Oh Leslie, you were expecting it in your heart, I know, and I've seen you living in the positives and dealing so beautifully with the negatives that come along sometimes. I'm sorry. I can say firsthand that my thyroid disease gets better when I stay GF. Not just in my mind, but on paper, in my blood work. It shows. Perhaps labs numbers will get better in other areas for more than just sweet little E with GF diet. Not at all trying to make this sound like something fun or something I am an expert at. I wish you did not have to go through this. I know you'll handle it all with flying colors!

    I LOVED seeing Daniel's birthday pictures. That little cutie! Michaela said she saw him Friday night. I said, "Was he the same? Did he know you?" And she said he made that same sweet little face like he's trying not to smile. I love that little man!!

    Love and Hugs,
    Lynn

    ReplyDelete
  6. Hey friend,

    I am sorry this was the news. I will send you an email. We are finding it easier to have the whole family on the diet most of the time. Many restraunts have GF meals. Jason's Deli has a large menu and you can see all of their locations on line.
    blessings,
    Dawn

    ReplyDelete
  7. I have a friend that had to go GF for her daughter. She decided to change the whole family over rather than cooking specially for one. She was amazed at how much better SHE felt with the changes in diet. She lost weight (30+lbs) without even trying, her joints didn't ache as much, and so many other improvements. Yes, it's overwhelming at first, and I almost had an anxiety attack in the grocery store when I first started reading labels, you just don't realize just how many things have wheat products in them! Cream soups of all things! After the dust settles and clears, it's certainly manageable.

    ReplyDelete
  8. I'm so behind on my blog reading that I'm just now seeing this. I'm so sorry, but also so very grateful that God is sufficient, that he's given Eliana you for a mother, and that you are seeking after Him for guidance. I pray that the transition to GF is as graceful as possible. And I hope to see you soon!

    ReplyDelete

I love hearing from friends!!! Thank you for taking time to leave a comment!