Braden just turned 7 years old, not even a month ago, and I wrote about how I wanted to start taking them to the doctor for annual well-checks as I’ve been neglecting to do this since they turned 1. Oops. I only take the boys to the doctor when they’re sick, which is unfortunately too often as it is. I think it’s important to find a physician that you’re comfortable with and that you can trust, but one that also trust you as the parent and advocate for your child.
When I took Braden at the end of January for his well-check, I brought up the fact that Braden has had very diffuse, non-specific tummy pain off and on for a year or so. It’s nothing that stops him from going to school or playing sports, he just tells me his tummy hurts the odd time. I can’t link it to specific foods, but as his nurse mom, I have just chalked it up to bowel issues and given him a laxative as needed and it’s always seemed to work.
Then I asked if it would be reasonable to do some blood work and to specifically add a Celiac screen on there. Our physician did say to me that he is growing well, doesn’t have red flag bowel issues or classic abdominal pain and bloating associated with Celiac in kids. I told him the only reason why it is remotely on my radar is because 2 of my nephews were diagnosed within the last year. My younger nephew had classic symptoms, but still grew very well, but his older brother was tested (as all first-degree relatives of a positive Celiac in the family should) and it was absolutely shocking news to our family that he tested positive. He had no classic symptoms or ever had tummy pain.
My doctor agreed and ordered baseline blood work, a liver panel, Celiac screen, thyroid hormone and a helicobactor pylori breath test to rule out that as the cause of stomach pain. You have too make an appointment for the breath test and the earliest we could get in was the middle of February, so we just got our results last week. They called me the day after his blood test to tell me his liver panel was normal and I asked if I needed a follow up appointment if the rest of the tests were normal. They said no, but that our doctor was going to be away for a month and we could follow up with another physician if needed.
Well, I got a call on Tuesday and they said they needed to see Braden on Friday afternoon to go over test results. My stomach dropped as I knew this probably meant that one of his tests, likely his Celiac screen, was positive and they wanted to discuss it. Quite honestly, I admit I let my mind start racing and doing an internal freak out. There was NO WAY I could wait until Friday, so I called back and stated my concerns. They wouldn’t release results over the phone to me and couldn’t get us in sooner than Friday.
I prayed. I prayed for peace while we waited and I prayed for God’s provision. I was reminded that God is bigger than any lab result or possible diagnosis, and I started to feel better. My prayers were answered as the clinic suddenly called me on Thursday morning to follow up with Braden. As soon as I answered my phone she realized she had already arranged our follow up appointment, but praise the Lord there was an opening that morning, so I packed up all the kids and off we went. I was so relieved to not have to wait another day and a half for the results.
When we arrived to the clinic and were taken to an exam room, the doctor asked me why I asked for the Celiac screen, as she could see in his chart that his growth was well within the normal range, and always had been. I told her what I told our doctor and then she told me he tested positive for Celiac.
[Insert my shock here]
But then she told me that one test was positive, and one test was negative. I told her that I was a Registered Nurse and to please elaborate on what that meant. I knew the basic information about Celiac lab results from my nephews tests, and she told me that the Iga/tTG tested positive, but his antibodies tested negative. She told us we would be referred to a pediatric gastroenterologist (GI) at the Alberta Children’s Hospital and would likely need a biopsy to confirm. Oh, and to keep eating gluten.
I texted my husband, sister-in-law and mom right from the exam room as she stepped out to grab something. Shock. Pure shock. I just wanted the test to rule it out – not to diagnose it. I wasn’t delusional, I knew there was always a chance it could test positive…but I didn’t think that he actually would.
The Actual Lab Results
Since I’ve had time to let this sink in, I decided to ask our clinic for a copy of Braden’s bloodwork because I wanted to know more. Waiting and the unknown is awful for me, but the more info I have, the more at ease I am. I knew we would be okay with a Celiac diagnosis, but I wanted more information.
Braden’s IgA/tTG was 16.4 and the normal range for our lab is 0.0 – 14.9. I interpreted this that he was barely testing positive…but positive is still positive. Celiac.org says that 98% of of patients with Celiac disease’s IgA/tTG will test positive if they are eating gluten, but a false positive can occur if there are other autoimmune disorders in play, such as liver, arthritis, Type 1 diabetes, to name a few.
However, his endomysial antibody (EMA) test is negative – and I am stumped as to why. Celiac.org says that 5-10% of Celiac patients will test negative for the antibody, and adding onto that they also say it is “very rare” for someone with Celiac to also test negative for the antibodies. I feel like we’re playing the odds here.
He was ordered the right tests, according to the Canadian Celiac Association, and both of these tests are equally accurate, also according to their website. So if one says he has Celiac and the other doesn’t…I’m thinking his results are inconclusive. These are the results explained on his lab work:
Interpretation: The initial celiac disease screen (IgA- tTG) on your patient is POSITIVE but the secondary screen is NEGATIVE. This pattern of results does not rule out celiac disease and further evaluation of a gastroenterologist may be required. Note that initiating a gluten-free diet prior to referral or prior to screening will interfere with the diagnostic test for celiac disease.
I’ve joined Celiac support groups on Facebook, as I did for craniosynostosis when Jonathan was diagnosed, and I’m getting answers anywhere from ‘positive is positive, he has Celiac’ to ‘the EMA will soon be the gold standard above the biopsy, cross your fingers he doesn’t have Celiac!’. I’m not taking it as medical advice, I just wanted to gain others’ perspectives.
We wait for our GI consult and we will follow through with GI and based on what they say, go from there. If it is anything like ENT, we should hear back from ACH this week and have our consultation set up. My intuition tells me that Braden will be low priority because of his labs, but that when we do get in to see them they will order the IgG/tTG test as a back up, maybe some genetic testing, and likely a biopsy. As of right now, my thoughts are I want the biopsy regardless, because with an autoimmune disease like Celiac, I’m not messing around and taking chances – I want to know one way or the other definitively if he has it before we commit to a gluten-free diet for life.
Please keep Braden in your thoughts and prayers and I will, as always, keep you updated.