Celiac Disease

As promised in an earlier post, I'm ready to share some news we recently got about Audrey.  We've told our immediate families, our small group, and a handful of close friends, but this is the official public statement (doesn't that just sound like we are straight royalty out of Buckingham Palace?!)  Here ya go: 

The short version:  Audrey has Celiac Disease.

The long, long version (go ahead and take a potty break and refill your coffee):

Back in the fall, I was talking to the mom of a girl in Audrey's class who had recently been diagnosed with Celiac Disease.  Several of the things she mentioned stood out to me and the conversation stuck around in my brain long after it was over.  For weeks I replayed the symptoms her daughter had exhibited and recognized them as traits I'd been concerned about at one time or another in my own child:  very short stature without such in David and I, distended belly, yellow teeth, mood swings, fatigue, and some milder GI symptoms that I'll spare you details about.  They weren't much by themselves, but together they seemed like a concerning package.  I kept brushing it off, even scheduling and then canceling an appointment with a GI doctor at one point.  

The holidays came and went, but as things calmed down, I just could not shake it.  I told myself I was being a hypochondriac and that, if anyone had an illness, it was me.  I was developing that Munchhausens Disease they always talked about on House where someone makes up fake illnesses and symptoms for themselves or a loved one.  Finally, I decided it wasn't worth the stress and we'd go get a simple blood test to rule it out.  If it was negative, which of course it most likely was because I was just a worrywart, then only David would have to know.  Well, and his mom, who had to keep Luke.  I may have even fabricated something to her (read: lied) about the dentist raising a concern just to keep my crazy in a can, as if nearly fifteen years of knowing me hasn't already exposed every ounce of my insanity.  (SO SORRY.)  

So, off to the doc we went.  We told Audrey we were just going for some allergy testing, which she's familiar with from friends' and family members' experiences.  I brought along a post-it note of jotted-down symptoms and also the iPad with headphones as back-up because no child, especially a little girl, needs to hear her parent raise concerns about how short she is or how big her belly is.  She blissfully played a game while I talked through what I was seeing with the nurse and then the doctor. (By the way, why do they always do that?  If I tell the nurse everything and then she types it all into the computer, why do I then have to reiterate it all to the doctor when he comes in?  Are they checking my story?  The nail was in the rear right tire, Mr. Principal...)  

Anyway, the doctor was very nice and took the time to hear me out without making me feel like an idiot, which is always a tally in the pro column.  He agreed that by itself each "symptom" wasn't much, but together they were cause for concern.  He ordered a blood test and we left from there to go get one done while I already had her out of school and Luke taken care of.  She cried in my lap while the nurse drew the blood, but she handled it all pretty well and we headed to school in time for my volunteer shift with her class.  

The appointment was on a Wednesday and results typically take about a week.  Cue the wait and worry and prayer and wait. On Monday, my phone rang and the nurse who introduced herself immediately apologized and told me the results were positive for Celiac Disease.  Let's pause now for a definition (insert Zack Morris time-out music):

Celiac disease is a genetically linked autoimmune disorder that can affect both children and adults. In people with celiac disease, eating certain types of grain-based products sets off an immune mediated response that causes measurable damage to the small intestine. This, in turn, interferes with the small intestine’s ability to absorb nutrients in food, leading to malnutrition and a variety of other complications. The offending amino acid sequences are collectively called “gluten” and are found in wheat, barley, rye, and to a lesser extent, oats.  There is no cure for celiac, but following a strict gluten-free diet can help manage symptoms and promote intestinal healing.  

My heart sank as I listened to her explain their findings.  They look at something called a TTG level.  A normal, non-celiac level is five or less.  Audrey's was 125.

125.

That's not borderline.  That's not kinda-sorta grey area.  That's freakin' off the charts.  I was shocked.  

I tried to take in what else she was telling me.  The gist was that they wouldn't diagnose it by blood test alone.  They would have to do an endoscopic biopsy for which she'd have to undergo general anesthesia.  It would offer a complete diagnosis and also assess the level of damage that had been done.  The office would call me to schedule it in the next 48 hours and it would happen in the next two to four weeks.  

I got off the phone and hollered out of the room to David (who was taking the day off since AJ was out of school and he'd traveled so much lately) to start a show for the kids.  He knew what that meant and quickly got them settled.  When he walked into the room a few minutes later, he found a sobbing heap of mess waiting for him.  I repeated everything the nurse said through ugly, hot tears and hiccups.  I knew this was not the end of the world, but it was a big deal to us in that moment.  A great big deal.  Not only were we freaking out about the stuff in front of us, but we'd already read enough to know that people with Celiacs are at greater risk for developing a whole host of other autoimmune disorders down the line including Crohn's, MS, intestinal cancers, diabetes, and a myriad of other nasty things.  Not to mention that the likeliness that Luke had it as well was very high.  This was about more than some dang wheat.  

We got through the rest of that afternoon and evening, each sneaking away for a minute or two with our phones or computers to start looking up as much information on Celiacs as we could.  After we tucked them in, we talked and read and researched for hours.  We prayed and tried to reassure each other that it was going to be fine.  We finally decided to try and wind down with a show, but a sleet and ice storm had moved in and the flickering power made it difficult.  David eventually tried to get some rest and I took my Bible downstairs to the cold sunroom and cranked up the heat.  It was time for God and I to hash some things out.

I prayed and cried and read Psalms for a long time that night.  It made no sense to me, this stupid thing.  This stupid thing that could turn into far worse, stupider things later.  Hadn't He heard me begging for the test to be negative as I prayed over her night after night while she slept?  For that matter, every prayer I've ever uttered for that child and every wish I've ever made has been for her health.  Why didn't He do what I knew He was capable of doing?

I pitched a holy fit the likes of which will remain between me and my heavenly Father, but He heard me and He met me where I was because that's Who He is and that's what He does.  Even in my confusion and anger, I felt His peace.  I am still not settled on why my precious five year old has to endure this lot.  What purpose does this serve?  How will this bring Him glory?  Can't we strengthen her (and, frankly, my) character and faith some other way?  I may never understand this side of heaven, but "when you can't see His hand, trust His heart."  And I do.  I don't like it, I don't want to...but I do.

We muddled through the next few days and busied ourselves with preparations for Luke's party.  The doctor's office called and scheduled the endoscopy and gave us instructions. Soon after, I called my sweet friend Holly Watson, whose husband David performed our wedding ceremony a decade ago.  She is a pediatric nurse practitioner who has come to my rescue countless times during this parenting gig.  I knew I was taking a shot in the dark to ask her if she'd heard of the doctor, but I called anyway.  You can imagine how I felt when she replied, "Oh I love him!"  Thank you, Lord.  I so needed to hear that stamp of approval and her words of reassurance.

The Monday after Luke's birthday weekend was hard.  I almost felt a physical suppression as I unwillingly got out of bed that morning.  The distraction of the birthday was over and my teeny hope that the test was wrong was slipping away and being replaced by near-certainty of a positive diagnosis.  I felt pretty sure that I looking ahead to a painfully long season of adjustments and work.  God put the words of a lady I once attended small group with into my head:  "Just do the next right thing."  So, I took Audrey to school and then Luke and I hit the gym.  I worked out and we ran some errands and dropped off a surprise at a friend's house.  

Side note that maybe I'll turn into a whole post one day...When you're going through something, I've learned five great coping mechanisms:  

1) Get into God's Word 

2) Pray without ceasing 

3) Do the next right thing 

4) Do something small for yourself  

5) Do something small for someone else 

This became my way of dealing as we ticked down the days until the endoscopy.  The thing about having two young kids is that you never have to do much waiting around.  Somehow you manage to stay pretty busy whether you want to or not.  I very much wanted to, so it worked out just fine.

"Suddenly", the weekend before the procedure arrived.  David really wanted us to do something extra fun and special that weekend, so he got us tickets to see the circus.  The kids loved it, of course, and even though I wasn't thrilled with the expense (hello Disney World one month ago), I really couldn't be upset since his heart was in the right place...even if clowns are involved.  (If we just met, you should know I'm not a fan.)  We enjoyed The Greatest Show on Earth and then went to eat the greatest tacos on earth at Tin Lizzy's...trying not to think about how that was yet another place that we'd have to cross off our diet-friendly restaurant list.  

That night I got to meet my dear friend Kara who was in town and her sweet sister Meghan for coffee, which was so good for my soul.  They listened with open hearts and offered words of wisdom and encouragement like only other moms who know Jesus can.  Meghan is a physician's assistant and has a daughter with some medical issues, so she was able to speak to both the medical and the parenting side of things in a unique way.  We closed up the coffee shop and I left feeling tired, but better prepared to face the next couple of days.  

David and I had agreed to wait and tell Audrey about the endoscopy that Sunday to help ease the length of the anxiety we knew she would feel.  We sat her down that afternoon and gave her a very brief overview of the next day's procedure.  We tried to give her just enough detail to answer her questions without overwhelming her.  We explained that the blood test she'd taken didn't give us all the answers we needed, so the doctor was going to put her to sleep with some medicine and take some pictures of her belly from the inside.  It would be quick and painless and we'd be there as soon as she woke up.  

She took it better than we expected and was mainly stoked about missing school the next day without having to make it up.  She was very bummed about not getting to spend the night at her grandparents' house like Luke was getting to, but we offered her some two-on-one time with us instead of going to small group and she jumped at the opportunity.  I'd found a nearby indoor pool and thought that would be the perfect distraction and also serve to wear her out so she wouldn't lay awake worrying that night.  The three of us took off to do that and then grabbed dinner afterward at her choice of Applebee's.  Her stomach hurt so badly by dinner (I think it was a combination of swallowing air and pool water plus waiting too long to eat  but, ugg, who knows...), that she didn't eat much and we headed home for bath.  She had a snack before bed and was feeling better as we tucked her in.  She fell right to sleep without any trouble, thank the Lord.  

The alarm went off at 4:30am for David and I the next morning.  We got ready, prayed together, and then woke up AJ around 5:30am.  We'd decided not to mention she couldn't have breakfast or drink unless she asked, but she never brought it up.  We loaded her into her car seat still in her pajamas and made our way to the doctor's office.  We had a little trouble finding it, seeing as how the address of the location wasn't actually the name of the road it was on (c'mon, man!) but thankfully we got there with time to spare.  

We didn't have to wait long before we were called back.  The nurses were awesome and I fell in love with the no-nonsense-but-friendly anesthesiologist immediately.  (I liked her so much that I almost asked her for her number so we could be friends afterward because she was that cool, but I thought that would be a little strange.)  Audrey was content to watch a show on the iPad while we went through paperwork and information.  The doctor came by and talked with us about the procedure again and we signed more scary documents. Before we knew it, we kissed her goodbye and were ushered back to the waiting room for the most excruciatingly slow 15 minutes of our lives.  Seriously, I aged an entire decade in that fifteen minutes.  Finally, the doctor opened the door smiling and we exhaled for what must have been the first time all morning.  It had gone very smoothly.  Thank you, Lord.  

He ushered us back into a little sitting area and showed us some pictures he'd taken with the scope during the procedure.  My hope momentarily rose as he showed us the clean esophagus and a little beyond it.  However, when we got to the stomach picture, he pointed out the dreaded scalloped edges.  Even with my very untrained eyes, I knew things didn't look like they should.  He told us he was 99.9% sure it was Celiac without even having to get the results back.  We'd get a call with confirmation by the end of the week, but there wasn't any question in his mind.  He kindly tried to encourage us and told us that this was very treatable and manageable, even reiterating what he'd said earlier about fully expecting there to be a pill that could fix this in the next decade or two.  That didn't do much for us in that very moment, but I appreciated his effort.

After a few more minutes, the nurse came to take us back to Audrey who was waking up.  I have never in my life seen David's walking pace that quick as he took what must have been three steps to get to her bedside a hundred feet away.  She looked tiny in that big bed, but she groggily grinned and tried to sit up.  We let her sip some juice while she uncharacteristically chatted and the nurse took the IV line out.  She laid there about twenty more minutes before we got her dressed and were able to carry her to the van for the drive home.  

Once back at the house, we spent the rest of the day lying around watching TV, playing games, and reading.  She ate cheese toast and tomato soup of lunch - more things we'll have to find gluten-free options for (the doc wanted her on a normal diet until he got the results.  His words were actually "have a gluten party for the next three nights...it won't hurt her for that little bit longer.")  By mid-afternoon, she was getting hard to keep contained, so we changed clothes and she and David strolled by the lake while I took a short run in the neighborhood.  The weather was amazing and I needed the stress relief so badly that I actually felt my body relax as I pounded the pavement.  

We met David's parents for dinner that night and, still blissfully unaware of the dietary restrictions coming her way, Audrey had worked her appetite up to hamburger status and enjoyed every bite.  We got home and put the kids to bed and David did some work while I got ready for bed and then caught up on some family phone calls.  He came in our room and whispered that the Kirkleys (our co-small group leaders and neighbors) were swinging by to drop some stuff off.  I thought they must be doing a little balloon and card for Audrey and didn't think much else about it until I walked into the kitchen a half hour later to discover 4-5 bags of gluten-free groceries.  Their daughter has a wheat allergy among many others, so they had gone by the store and picked up a bunch of her favorite gluten-free foods and some flowers for Audrey.  I promptly started tearing up because I realized how much people love us and that we are not alone in this.  I called Kelly and thanked her profusely for their kindness (not to mention spending their weekly budget on us because gluten-free is EXPENSIVE).  We chatted a little bit and she offered to meet me at the store later in the week to give me a lesson on gluten-free shopping.  Please and thank you!

So, later that week, David's mom came over to watch Luke while I met Kelly at the grocery store for a lesson on gluten-free shopping.  Going up and down the aisles, we read ingredients and labels like crazy and discussed everything from holiday celebrations to cooking times to birthday parties.  It was so, so wonderful to have someone to empathize and lend their expertise.  After we finished, she went back to work from home and I headed off to a nearby Walmart that she said had a lot of options and spent another hour there pouring over everything.  I drove back to the house just before lunch with my head about to explode, but feeling the teeniest bit more capable.  

The next couple of days began to wear on me as time went on without a call from the doctor.  Hope is a funny thing, and even though I had mostly wrapped my brain around an official diagnosis, the teeniest part of me thought "well...maybe..." and that part got harder to deal with the longer we had to wait.  Of course there was another part of me that was thinking, "Oh no.  Maybe it's something else...something worse...and he's not calling because he has to schedule time for us to come in to break the news to us."  The torturous games our minds can play are a blast, aren't they?!  

By Friday morning I couldn't take it any more and I called the doctor's office and left a voicemail for his nurse.  It went something like, "Hi.  I know this message is completely futile, but I'm gonna try anyway.  Please oh please oh please oh please don't let us go into the weekend without results.  Oh pleeeeese."  (I took a page out of Luke's Book of Begging and unashamedly used his best lines.)  

Thank the Lord the doctor called me back around 1:30pm that afternoon.  Unfortunately, he confirmed what I was expecting and that little .01% ray of hope was gone.  It is Celiac Disease.  He said that her villi showed a "moderate to severe level of damage" and that we should begin a 100% gluten free diet immediately.  I asked a few questions, namely whether weaning her off gluten over the course of a week would be okay (yes) and what would happen if she got "gluttened" after coming off of it (it could vary from a little tummy ache to vomiting, but damage would be done to her villi regardless so we needed to make things as "clean as possible" meaning minimize the exposure from cross-contaimination.) He assured me that the body would heal itself over the course of about six months, though, and symptoms would slowly dissipate.  I don't know what this means for more permanent symptoms we're seeing, such as short stature (will she have a growth spurt?), but we'll find that out later. We chatted a little more and he said he'd be in touch to line up a consultation with himself and the dietician in the next few weeks.  I also asked him to go ahead and put in a blood work order for Luke so that we could get testing for him underway before we began going gluten-free.  

He had his nurse fax it to David's office and long story short (fax to scanner to email to printer + David's insane work day = not an easy piece of paper to come by), we were sitting in a Labcorp by 4pm.  I was so over all of these diagnostic processes and the accompanying waiting that I was not messing around.  Luke was nervous going down there, but handled the actual test like a boss and didn't even whimper. It may have had something to do with the fact that I wised up this go-round and had my phone playing a scene from Frozen for him to watch.  The techs taking the blood had a hard time finding the vein and just as I was about to rip it out and do it myself (ya know, with all my formal phlebotomist training), they found the money shot and got the vial they needed.  Audrey was actually a little upset that he didn't cry because she had during hers a few weeks earlier.  ("How can he not be crying?! He's three!  I'm five!")  We high-tailed it out of there, went by the the grocery store, picked up a pizza, and came home for Friday night pizza pajama picnic. I may or may not have almost shed a tear over the realization that it would be our last one from our favorite pizza place because they don't have any gluten-free options.  

After we'd eaten and Audrey had watched a show, we started another one for Luke and asked her to come into the sunroom with David and me to talk.  We had waited as long as we could and knew it was time to tell her so we could be open and honest about the changes we were making.  We knew she was intelligent and mature enough to be told the truth and needed to know so she could speak up for herself at school, church, and friends' houses when we weren't there to do so for her.  Of course, we didn't want to overwhelm or scare her and tried to walk that line carefully.  We were very intentional about saying "Celiac" and not "Celiac Disease" to her as well as making sure we communicated it was something she has, not something she is (i.e. NOT saying she is  "a Celiac.")

It actually went very well, which I shouldn't haven been surprise about because a) people were praying for us and b) Audrey is a rock star.  My sister-in-law had sent me an incredible kid's book that did all of the hard work for us.  Since Audrey's love language is reading, we were able to tell her ourselves, but then let the book answer all of the difficult-to-explain details and kid questions.  We also shared how her sweet friend Michelle had brought over some of her favorite foods and how her friends and cousins had been praying for her for the last few weeks.  Afterward, she asked about a few things and then closed with "Can I go watch the show now...and will you start it over from the beginning since I didn't get to see that part?"  Sure, honey.

So there you have it.  Audrey has Celiac Disease.  Luke is currently being tested.  David and I will also get blood tests in the coming weeks just to be sure.  

It's not what we planned and it's not going to be easy.  But, like I wrote earlier, I trust God.  I trust that He has her best interest at heart.  And we're trying to keep perspective.  This is nothing compared to the serious medical issues millions of people face every day.  It could be so much worse.  We know this and are grateful we caught it at all and that it isn't super serious.  

Of course, all of that doesn't mean I don't still have feelings about the situation.  They have gotten a lot more manageable in the last couple of weeks (see paragraph above about the holy fit), but oh, do I have me some feelings.  Pick one:

Worry - what if she gets something worse because of this?  What if Luke has it too?  How many more tests and doctor's appointments is this going to mean for her/him?

Guilt - why the heck has it taken us five and half YEARS to get this figured out?  At the very least, why didn't I listen to the nudges I felt in the fall?  How long has she felt the effects of this?  Has she always felt awful and just doesn't know any different?  What kind of permanent damage has been done?  Her tummy, her height, her teeth...what is irreversibly negatively effected?

Selfishness - this is going to make shopping and cooking even more of a nightmarish chore than it already is.  Oh, the changes and adjustments that we're going to have to make are going to be HUGE.  And as the family's shopper and cook, the burden is 99% on me.  Plus, the expense for the GF items is enormous, too!  And will we get to eat out anymore?  At least, at anywhere worth eating and without having panic attacks?  

Anger - we have gone to every doctor and dentist check-up she was supposed to have since she was born.  Why didn't anyone notice anything?  

Defensiveness - what if people think this is just the latest diet-craze for us?  What if they think we're hippy new-age weirdos who are just jumping on the bandwagon?

and, ultimately,

Sadness - I don't want this for her.  It's going to be challenging and burdensome and unfair and...just dang hard.  FOREVER.  All the doctor's offices and tests and the way she'll feel when she gets "gluttoned" are going to be so rough.  She's going to stand out when she wants to blend in and that's crazy difficult.  What about the family recipes I won't get to pass along?  What about all of the holidays when she can't enjoy our traditional favorites?  At the very least, every class celebration, every birthday party, every sleepover, every date with a significant other is now affected.  At the very most, much more is at stake should she get another auto-immune disorder down the line.  This is the emotion that crushes me.  And to think both of my babies may be in this boat...I just get overwhelmed.  At a friend's wise words, I'm trying not to pre-grieve these things before we see if she even does, but it's really hard not to do so on her behalf.

The degree of all of these emotions ebb and flow as does my stress management.  I think I'm doing okay with handling everything, but my body sometimes says otherwise.  My stomach fluctuates between fine and aching a dozen times a day, my skin looks like a fifteen year old's with all the break-outs, and my emotional eating is causing me to take on weight like a sinking ship takes on water. (I count it one of the great injustices of my LIFE that I am not one of those people that loses weight when I'm stressed out.)  Still, I've come a very, very long way in the last couple of weeks and it will get better.  IT WILL GET BETTER.  As hard as it is to believe right now, this will become second nature to us and we will hit a new normal in a few...months?  

One thing I can say for sure is how unbelievably grateful we are for all of the love and kindness that friends and family have shown us since this all began.  From mailing us books to buying us groceries to care packages for the kids to texting and calling, we have felt the support.  And the prayers - oh the prayers that have been bending God's ears lately on our behalf!  Thank you, thank you, thank you.  You've made a tough road much easier to walk and I know that support will continue to strengthen us as we navigate our way through this. Please keep up those prayers and we'll be in touch.  Maybe we can break some gluten-free bread together soon...

In the meantime, here are some resources I'd love for you to check out if you want to find out more:

1)  What is Celiac Disease (This whole website is a good, trusted source)

2)  Celiac Disease:  10 Things Everyone Should Know

3) Celiac FAQs


"I will praise the Lord, who counsels me; even at night my heart instructs me.  I have set the Lord always before me.  Because He is at my right hand, I will not be shaken."  
 - Psalm 16:7-8