Trying to Ace the Test

In August of 2013 we decided to have Sammy tested for the Celiac genes.  D had been helping out in his Sunday School class to make sure he didn’t get cross-contaminated, but we didn’t know if it was for sure necessary.  Yes, Sammy had been exposed to gluten his first six-months of life via my breast milk before we knew about D and Wren’s Celiac.  Yes, he had experienced a “trigger event”, pneumonia at the age of 10 days.  The only thing we didn’t know for sure was if he had the genes.  Without the Celiac genes, the chance of developing Celiac is less than 3%.  We knew Sam needed more autonomy.  We wanted to give it to him, but if he had Celiac or a strong likelihood of developing it and gluten crumbs mattered, then we’d have to stick to him like glue, same as we did with Wren until she was almost four. 

The blood draw was hard on Sam, though he was a trooper the whole way through it.  Sammy has thick blood, and it took stabbing him in the veins of both arms to get the two vials of blood.  It took Sammy about five full minutes to fill up the vials once the needle found its way in.

After the 10 day waiting period was over, I called our pediatrician.  They were shocked not to have heard back from the lab yet.  When they did reach the lab, we didn’t get the news we expected:  the lab had thrown Sam’s blood away.  The lab had changed their coding for Celiac genotype testing and didn’t inform our pediatrician.  When the lab saw the incorrect codes, they didn’t ask questions, they just threw all the blood away without testing it. 

I called the lab; that did not go well.  I cried and vented to D and we prayed about what to do next.  Should we put Sammy through it all over again?  Should we wait until a later date?  What?

We decided we needed to know, and I took him back in to start the whole process over in September.

Again, both arms punctured, three vials of blood this time, and probably no less than eight minutes to get it all out.  Sammy thanked the nurses after he was finished, and both of them teared up.

I honestly thought the same thing would happen again.  I didn’t hold out hope for an answer.  But a week later I received a call from the doctor, and this is what happened next:

This sign is not completely accurate.  Technically, Sam has about a 3% chance of developing it.
Still, we're pretty stoked it's not likely!  Oh, and Wren just wanted to be in the picture.  She has a
100% chance of having Celiac!

We were shocked, to say the least.  Sammy did not respond well to gluten in my breast milk, and we figured out he had a dairy allergy at a very young age.  But there it was, evidence that even if he had a gluten intolerance, he did not have a very high chance of developing Celiac.  The genes weren't there.  We were relieved, so naturally we told no one.

For a while we just wanted to bask in this amazing news without the inevitable questions:  Will you let Sammy eat gluten?  No.  Do you think he’ll grow to resent you for it?  Don’t know.  We also didn’t want Sammy to become the gluten garbage disposal where all the well-meaning people in our lives dropped the food they had always dreamed of cooking for the grandkids but had been forbidden. 

Our home is D and Wren’s safe place; we’re keeping it gluten-free.  And I see no reason to feed any of our kids gluten when there’s no need for it and they’re happy without it.  When Sammy is an adult, armed with his genetic results, he can decide on his own.

What is awesome is that dealing with cross-contamination is not an issue with Sam.  He doesn’t eat gluten, but if he were subjected to crumbs it wouldn’t be a game changer.  Not having to deal with cross-contamination with Sammy proved what D and I had already sort of guessed:  avoiding cross-contamination is harder than living on a gluten-free diet, especially when you’re dealing with kids. 

If you or someone you know wants to get gene tested, here’s what I recommend:

1.       Call your doctor and find out what lab they use.  Try to get the codes for the test.

2.      Call your insurance company and find out if they cover gene testing.  You may have to give them the codes to make sure they cover the specific test you need.

3.       Schedule your appointment.

We'll be doing this with the twins next month.  We're praying for no DQ2 or DQ8 genes.  

You may be asking yourself, why didn't they just test him for Celiac?  Why the gene test?  Well, Sammy had only ever had gluten through my breast milk.  By the time he was eating baby food, we knew Wren had Celiac and so no one in our family ate gluten from that point on.  Sammy didn't have enough gluten in his system to come back positive for Celiac, even if he had it.  Gene testing, we felt, was easier than subjecting him to gluten, possibly triggering Celiac.  

Questions about Celiac testing?  Try me.  If I don't have the answer, I can probably point you to someone who does.

Happy Month of May, the month to get Celiac Aware.