Our Celiac Story

So one of the things that has caused so much change in our household over the past year is my son’s health.  Here’s the story – if only to help another family who might be going through the same thing.

In the Spring of 2013, my (then) 9-year-old started complaining of stomach pain, pretty consistently although not daily.  However there were no other symptoms – just pain.  In July he had a check-up in which his pediatrician could find nothing wrong.  In September he had his yearly physical, still with occasional complaints of stomach pain.  The pediatrician suggested we try a dairy-free diet in case he might be lactose intolerant.  We did that and there was no improvement.  Around October, the complaints of stomach pain were nearly daily and a new symptom was added – severe anxiety.  About stuff that was normal for our family – going out to eat, traveling in the car anywhere more than 15 minutes away, going to Grandma’s house.  If we even suggested doing any of these things he would either throw a temper tantrum or just get really upset and cry.  We didn’t know how to handle this and did the best we could.  Because there were no actual physical symptoms, we really thought it was a behavioral issue.  By January, the stomach pain and anxiety were extreme and interfering with our family’s daily life.  I really started to wonder if the pain and anxiety signaled a psychological problem.  However, I also noticed that when he returned to school, his adjustable-waist pants needed to be tightened -which I knew wasn’t a good sign but thought it was just because he’d been picky about eating.

So back to the pediatrician we went.  He had lost 6 pounds since his appointment in July (which is a lot for a 10-year-old who only weighed about 65 pounds anyways!).  The pediatrician ordered some blood tests and we got results a couple of days later that his antibodies were elevated – indicating celiac disease.  The pediatrician recommended we put him on a gluten-free diet and set us up with an appointment to see a gastroenterologist.

We put him on a gluten-free diet right away and saw improvement within a week.  Less pain and the anxiety nearly disappeared.  Amazing!  I was so thankful!  I started to do research online about celiac disease.  As an auto-immune disease, it is closely linked with Type 1 diabetes.  Both Dave and I have extended family with celiac, and as you know we also both have diabetes in our families.  The other interesting thing I found out was that canker sores are a symptom of celiac disease.  My son had had very frequent canker sores for about 2 years prior to this!

It took two months to get in to see the gastroenterologist and my heart just broke when I heard what they said.   They told us that he would need to be on a gluten-containing diet for TWO MONTHS prior to an endoscopy and small intestine biopsy in order to accurately diagnose celiac disease.  Now, I had seen in my research that a gluten-containing diet was necessary (and in fact I had called our pediatrician to ask about this but they said it shouldn’t matter (wrong!!)) but I thought they would say maybe a week or two.  And my son had been doing so well on the diet that I really didn’t want to put him back on gluten until it was necessary, and I thought one or two weeks we could handle.  But TWO MONTHS???

And, not to mention, this is a 10-year-old we were talking about.  He knew enough about what had been happening that he wanted no part of going back on a gluten-containing diet.

So I made a hard choice, that at the time I felt like my only choice – to try to sneak some gluten into his diet.  Because I knew he would just refuse to eat if he thought something had gluten in it.  And let’s face it, you really can’t make someone eat something.  So this is what I did for two months and it was awful.  A new symptom arose – headaches.  Daily.  The canker sores came back.  The stomach pain came back.  Not to mention the guilt I felt for giving my child something that I knew was making him feel sick.  Ugh.

Fast forward to the endoscopy / biopsy – it went smoothly.  However, the results came back with no small intestine damage and so they couldn’t diagnose celiac conclusively.  It was such a disappointment!  We left the gastroenterologist with a recommendation to put him back on a gluten-containing diet for 6 months and then come back and retest.  CRAZINESS!

After a long conversation with our pediatrician (which included my disappointment in his recommendation to immediately go on a gluten-free diet prior to diagnosis), we decided to move forward with treating as though he has celiac.  We also got genetic testing done, which confirmed that he has the gene for celiac – just another part of the puzzle.  I feel that the positive antibody testing at three different times, the genetic testing, the family history, the symptoms, and the improvement we see on a gluten-free diet is enough evidence for me that he has celiac – even though a positive biopsy is the gold standard for diagnosis among the medical community.  He is currently on a gluten-free diet and rarely has stomach pain / headaches / canker sores although anxiety is still a part of his life.

Looking back, although I am definitely disappointed in not having an actual diagnosis (honestly, I am concerned about things like college – without a diagnosis will we be able to require them to provide GF meals??), having that period of having to eat gluten again was probably good for my son because he is super-compliant with the diet now.  At first he was not cooperative – didn’t want to eat GF stuff – as soon as the gastroenterologist told him he HAD to eat it for 2 months, he didn’t want to touch it.  Reverse psychology??  ha!

The lesson we learned that I’d want to share with other parents is this – if celiac is possible – do NOT just “try” a gluten-free diet!  Get the testing done first!

Here is a link to my favorite celiac disease resource if you want more info:  http://www.cureceliacdisease.org/

And an infographic of celiac disease symptoms, thanks to http://www.glutendude.com

An update.

So.

It’s been a while, eh?

Even as I sit here staring at the keyboard, I’m not sure I have words to type.  I have wondered over the last 15 months if I would blog again.  LOL- I’m still not sure.

Life kind of knocked the wind out of me in 2014, and it has taken me a lot of time to catch my breath.

2014 in a nutshell: besides all the usual goings on of a family of five, the biggies were that I got a part-time job, my son was (mostly) diagnosed with celiac disease, same child transitioned from private elementary to public middle school, and I started eating a whole new way.

Ha.  Not so bad, I guess, looking at it in hindsight.  But these were huge changes for us and, well, overall I’m not sure I like change.

As an overview – the part-time job is good.  Home-based and flexible, which is just what I needed.  It calls upon a bit of my knowledge from my past career life – and it’s nice to have a bit of extra spending money.  But it was a change after having been primarily a stay-at-home mom for 10 years.  There is a balance that needs to be found – especially when the kids are off school.

The celiac disease will probably need to be a whole post on it’s own.  Long un-diagnosis story, unsatisfying ending, but my kiddo is feeling a lot better now on a gluten-free diet, and that’s what really matters.

The middle school transition for my son who likes change even less than me?  Well, let’s just say God took care of it in a big way – and I’ll leave it at that.

And last – a whole new way of eating – Trim Healthy Mama.  I started hearing about it early in 2014 from a friend and began making changes to my diet in April 2014.  One of the biggest motivators for me was that we had just started a gluten-free diet for my son and since that was completely changing what I was buying, cooking, and baking – I figured I might as well change what I was eating, too.  I have been eating the Trim Healthy Mama way now for over a year and I love it.  I feel better, my diabetes is better controlled, I’ve lost 30 pounds, and I am totally satisfied.  That’s a huge success.  I have tons to say about this but I’ll leave it for another post!

So I finally am feeling like the huge transitions have subsided and we are at an equilibrium again.  As I sat in church this weekend, we sang the song “Anchor” from Hillsong Live:

I have this hope
As an anchor for my soul
Through every storm
I will hold to You

With endless love
All my fear is swept away
In everything
I will trust in You

There is hope in the promise of the cross
You gave everything to save the world You love
And this hope is an anchor for my soul
Our God will stand
Unshakeable

Unchanging One
You who was and is to come
Your promise sure
You will not let go

Your Name is higher
Your Name is greater
All my hope is in You

Your word unfailing
Your promise unshaken
All my hope is in You

I just stood there as we sang, and I felt so incredibly thankful for God and His unchanging nature.  He has been an anchor for my soul in this year of huge changes.
Life throws so much at us!  If you’re in the middle of changes – hold on to God.  He is worthy of our hope and trust.

 

Prayer: Not a Last Resort!

DUH, right?

About a month ago I stood in a small room as my son was getting his blood drawn.  He was anxious.  Defiant, but quietly, as is his pattern in public.  But there was no more I could do to help him through it.

All I had left was prayer over the situation.  And as I lifted up some prayers, I realized.

My typical operating mode in day-to-day life is to look at prayer as a last resort.

In my head, I know it shouldn’t be.  And I do (nearly daily) have some prayer time set aside in the mornings.  But I had gotten to the point where I prayed, checked that off my to-do list, and then slipped into the rest of my day focused on what I had planned for the day.  And only when I got myself in a situation where I felt like there was nothing else I could do about it was I prompted to pray.

I had forgotten 1 Thessalonians 5:17 – “pray continually.”

Do you ever find yourself praying only as a last resort?

I just know God was whispering to me in that moment – “don’t rely on your own ability.   Rely on me.”  And the lesson is that I need to rely on Him even when I feel capable!!!

So my goal in the immediate future – pray continually (and especially in the many mundane moments of the day), and get in the habit of relying on Him alone, always.

So I’ll leave you with this – a quote I heard on the radio early this year and which hasn’t left me.  (Forgive me, I’ll have to paraphrase and I don’t remember who said it!  If I find out, I’ll let you know!)

“In order to fully follow God, we need to give up the thought that we know anything.”

December 2014!

Christmas is two days away!

Today we are finishing up our preparations… wrapping the last of the gifts, making the last of the cookies (peanut butter balls), and all that good stuff.

Here’s what we’ve been up to this month:

We’ve had a rough December in terms of busy-ness and sicknesses, so we’re also doing a lot of resting, too!  This weekend we took it easy and pretty much watched Christmas movies all weekend.

It was a good weekend – probably because I had zero expectations of it.

Unlike last weekend.  One of our advent activities was to pick out a child to sponsor through ICCM.  We’ve been wanting to do this for a while and I thought it would be a great way to celebrate Christ’s birth.  It didn’t go at all like I’d planned.  (ooh – those expectations we have in our heads are so sneaky!)  I guess I thought it would be a truly meaningful family moment – and it was anything but.  We still did it, but the kids were being silly and totally not taking it seriously.  It made me angry and one of them was in time-out before it was over.

And today the littlest had a doctor’s appointment – diagnosis cold with a side of ear infection.  Not exactly how I’d expected to spend today.  But more snuggling and resting is okay, too.

In the midst of all this I thought of the Christmas devotion I’d done at MOPS a couple of years ago.  And realized I needed to hear it again.

Maybe you do, too.  Here’s the good part:

 Are you trying for the perfect Christmas? And don’t get me wrong – I get caught up in it, too! But God keeps reminding me that the only perfection I’ll find on Earth – the only perfection that you’ll find – is in Jesus. He was, and still is, the perfect gift and the reason we celebrate!

Jesus was referred to in the Bible as “Immanuel”, which means “God with us”. God gave us His son as a gift – the gift of His presence in human form. He is present (no pun intended) with us at all times.

Jesus, the Messiah, was born in a dirty stable when people were expecting a King with all the trappings.

But God is more concerned about what people need rather than what they expect. And He is not afraid to come into the mess of our lives – our dirty stables.

Despite your efforts to create the perfect Christmas, what kind of messes do you have in your life?

The good news is that God’s perfect gift is still available to you. Immanuel – God with us. Isn’t it amazing? The God of the universe is willing to give up the majesty of heaven to be with us in our dirty stable. And he is big enough to deal with whatever mess we’ve made – but not too big to care about it!!

So what do you need this Christmas? Instead of chasing after the perfect Christmas, I challenge you to chase after the “perfect gift” – Jesus. He is, in fact, regardless of his birth in a dirty stable, all the things that Isaiah prophesied.

Do you need guidance on how to get out of your mess? Well, Jesus is the wonderful counselor.

Do you need peace to get through? Jesus is the Prince of Peace

Do you need the impossible to happen? Jesus is the mighty God.

Do you need hope? Well, Jesus is also the Savior and light of this world. He is the way, the truth, and the life.

All you need to do is not miss it.

(here’s the original post, if you want to read all of it)

Merry Christmas, friends!  Praying for all of us that we don’t miss Jesus this Christmas.  

 

 

what’s been happening around here

I totally feel like I have to rewind here.  I haven’t posted in a while – we have been so busy!

So let’s start with some summer stuff…

We started a fairy garden, just for fun.  It looked pretty pathetic for most of the summer, but by September, the ground cover we added had grown and now I’m thinking it looks pretty cute.  It’s a fun summer activity for little ones – even more fun if you make an event of searching your backyard for things to use in it (pebbles, rocks, wood pieces, bark, moss, ground cover, etc.).  Search fairy garden on pinterest – you’ll be amazed!  Here’s a pic of ours:

Fairy Garden

I also bought this secretary at Goodwill in August… and finally painted it the first week the kids were in school.  I’m loving how it looks in the kitchen.  I had hoped that it would solve the problem of papers piling up on the kitchen table, but apparently you have to actually put things in it for that to work.  ha.

Secretary

Then school started.  So far, so good.  Kids have been doing well, with the slight exception of one phone call home regarding a 10-year-old boy who talked too much.  I guess that’s normal boy stuff – but definitely a first for me.  I hope it’s the last.

Let’s see, what else?

This seems to be the year where I have officially become the mom taxi.  Kids have activities three nights a week.  Then you add in my activities and my husband’s… and we are running around a lot.  But they are all good things – Bible quizzing, irish dance, MOPS, etc.

One of my oldest daughter’s activities are advanced math and science classes (for which she is actually getting college credit!) at the local community college.  I must say it felt weird to drop my 7th grader off at a college campus!  She has started rolling her eyes at me when I remind her not to talk to strangers or go anywhere alone every time I drop her off.  But I still do it – ha ha!  After all, she IS only 12!  But I’m finding a fabulous side effect of all this growing up she’s doing – she no longer has to be woken up!  she gets up on her own!  and showers every day without reminders!  Let’s just say I’m a little happy about that.

Then in October came MOMcon (previously known as the MOPS Convention) in Kansas City.  As always, it was amazing.  I got to see/hear Beth Moore, Jen Hatmaker, Lysa Terkeurst, Ken Davis, and more.  It is always a spiritually refreshing few days away for me.  The challenge is letting what I heard sink in and change me.

Halloween came and went, and my littlest was just the cutest thing ever – Madeline:

Madeline

She thought no one would know who she was – but so many people commented and loved her costume.

Then our computer hard drive crashed and all our files were unrecoverable (is that a word?).  Sad day, people.  Because even though you KNOW you should back stuff up, like all those precious photos of your little ones, do you really do it regularly?  Well, we did not.  Over the years I’ve been pretty good at actually printing our photos, which I am thanking God for.  I hadn’t gotten any 2013 pics printed, though, so I’m pretty bummed about that.  Not to mention all our other files besides photos!

My P.S.A. for today – back up your files, you never know.  

 And so November is here now, with Thanksgiving right around the corner.  I love this holiday and everything about it!!

The kiddos and I will be doing this week-long “giving thanks” activity from Ann Voskamp.  I think this is great for older children who can write – it stretches out the thanksgiving for all week!

http://www.aholyexperience.com/wp-content/uploads/2011/04/7Gifts.pdf

And a nice little video how-to for folding it into a little booklet are here:

http://www.youtube.com/watch?v=sQGf3y6nFww

So now your turn – what’s been happening in your neck of the woods?

crying is good sometimes

I saw this video floating around facebook but I have this weird thing – I rarely click on video links because I have media trust issues. Seriously, I feel like you never know what you’re gonna get.

Anyhow, a real-life friend suggested that I watch it. So I did. And I cried.

There is this crazy mom-pressure to get this parenting thing right. I feel it every.single.day. This video is just beautiful and reminds me that although parenting is a precious, sacred, and important responsibility, sometimes I just need to breathe deep and know that God’s grace is sufficient.

So if you haven’t watched it yet, please do. Watch, cry, and breathe deep…