Our Noah shortly before his celiac diagnosis.
Noah’s story is probably just like your child’s: in retrospect, it all makes sense. There was no catastrophic onset, but a slow, insidious attack. This journey officially began in January of 2015 when Noah, my eldest son who was seven at the time, was diagnosed with celiac disease. This day, was Noah’s self-declared worst, but oddly one of my best. That’s right, one of my BEST.
It all started with a call from school.
On an ordinary day in October 2015, the school nurse called to report that Noah was doubled over with severe stomach pains. (The nurse and I were on a first-name basis, as it seemed that Noah wasn’t shy about visiting her office.) For several weeks before that, he had been complaining of stomach aches during dinner, and only at dinner, so I thought he was trying to get out of eating to play—a common boy thing.
When I got to school and I saw how much pain he was in, I knew this wasn’t the typical stomach ache. We rushed over our pediatrician who immediately sent us for an x-ray. The findings were weeks of backed-up poop in Noah’s intestines. WEEKS!?! (Sorry, when we’re talking celiac, we’ve gotta talk poop on occasion.) For a child who pooped like a burly man every day of his little life, the diagnosis of constipation just didn’t make much sense. As odd as this incident was, Noah’s pain started to subside in the doctor’s office and we went home to eat fiber—as instructed.
For two months, I did what the doctor suggested and gave Noah extra fluids, fruit, and stool softeners, but he was STILL having moderate to severe stomach pain at times and continued to be constipated. Noah had no other related symptoms (so it seemed), and though I knew the doctor was doing her best, it was time for a second opinion. I just had that irking, sick feeling in my gut that I couldn’t ignore. Thankfully, I already knew of a gastroenterologist whom I had taken my youngest to see (for unrelated reasons). Coincidentally, that doctor was part of the University of Chicago Celiac Disease Center.
Things moved quickly from there. Our gastroenterologist said that Noah’s constipation was most likely from a lack of liquids, but thought he should be tested for celiac disease just to rule it out. Being the quasi-hypochondriac that I am, I knew of celiac, but I wasn’t concerned that Noah had it. Well, I was certainly wrong. Three days later, we learned that Noah’s tTG-IgA levels were over 100 (when normal is 10 or less), and that he most likely had celiac disease. For some reason, the news didn’t sink in until the nurse uttered the word “endoscopy,” and I started to cry like a blubbering baby. Noah’s condition was serious enough to warrant a surgical procedure? That’s when I realized my baby was broken.
I was shocked, heartbroken for Noah, and overwrought with guilt. I thought I was a good, somewhat astute and attentive mom, so how could I have failed to notice that celiac disease was chipping away at my son’s health for so long? How long exactly, we will never know, but I’m guessing since he was three or four years old. Celiac is just that sneaky.
Here’s my best recollection of his symptom timeline
In the weeks between the bloodwork and Noah’s confirming endoscopy results, I began to vicariously mourn the loss of Noah’s favorite gluten-y foods, and my mind fast-forwarded to Noah’s food life at parties, family gatherings, school lunches, while away at college, etc. Would his friends be supportive? Would he find an understanding chef-of-a-wife? Snapping back to the present, how would I create and maintain a safe, gluten-free existence for Noah? How would I be able to make or find gluten-free versions of his favorite foods? My mind was spinning, but Noah just went on doing the things that normal seven-year-olds do. After all, he was still normal.
Then came the day of the official diagnosis. I will never forget it. We were driving and the kids were in their usual after-school rambunctious mode. The phone rang, I hushed the kids, and I then heard those anticipated words, almost in slow-mo… “Noah—has—celiac—disease.” Every word after that seemed incidental. I struggled to hear the follow-up instructions over the boys’ raucous, and I hung up the phone with an overwhelming sense of relief…and a bit of dread. I’m not sure if the relief or the dread part then put me in the drive-thru line for a round of milkshakes. (Why couldn’t milkshakes cure celiac?)
Remember when I said this was one of my best days? This confirmation gave me a well- and painfully-awaited explanation for Noah’s pain, chronic constipation, unexplained illnesses, fatigue, mood swings, and focus issues. Even more so, I was grateful that his celiac could be controlled without the barrage of needles, chemo, or prescription drugs. Up to this point, Noah hadn’t grown in inches or weight for two years and now we knew why. He was between a level two and three on the Marsh scale, which meant the villi in Noah’s small intestine was already nubbed and inflamed, with perhaps some degree of malabsorption. Thankfully, the doctor reassured me that the small intestine could repair itself once Noah was on a strict gluten-free diet from here on out. All of this came with a lot of pressure and responsibility, but I was looking forward to his healing and it couldn’t come fast enough!
A happier, healthier celiac
Other than Noah’s physical health, my second biggest concern was how Noah would handle the news. He is a no-nonsense kind of kid, so I knew that I couldn’t give any of my typical long-winded mommy speeches. After all, Noah expected his celiac diagnosis, so, I just gave it to him straight. Thankfully, the milkshake seemed to soften the blow. No tears. No reaction at all really. Noah didn’t fully understand what celiac and being totally gluten-free for life really meant, but he seemed relieved to hear that he would soon be feeling better. The “feeling better” part is what would commit him to his gluten-free diet. Of course, I was already on board.
Don’t you love a story with a happy ending? More than two years post-diagnosis, Noah is doing well and is enjoying his gluten-free life. Each child’s celiac journey is important and helpful in spreading celiac awareness. If you’d like to share yours, you’re welcome to send me your information via the Contact page, and I’ll add it to my Celiac Stories section of my website.
Best wishes and thank you for reading!
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