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