At 18 months old, my son suddenly changed from the happiest little dude in town to a miserable and often inconsolable kid. Without warning, he became thoroughly unhappy, bouncing between periods of lethargy and periods of frustration. His sleep, which had been challenging anyway, as it is with most little ones, became a constant battle; he struggled to get comfortable and would wake several times each night. His enthusiasm for eating and trying new foods disappeared, causing us to coax most meals into him. And, perhaps most troubling, he began to loose weight.
His pediatrician was stumped. She couldn’t identify an illness. There were no injuries to explain the situation. No significant changes in his daily life.
Eventually a blood test was ordered, mostly to rule out celiac disease. When the results showed extremely high tTG levels, the doctors thought there must have been an error. To confirm, an endoscopy was performed. Sure enough, numerous ulcers in his small intestines were discovered.
I was positive this was karma’s way of punishing me. Over the preceding couple of years, several friends had joined the anti-gluten trend and decided to remove the protein from their diet for no reason, as far as I could tell, other than following a fad. So I began telling people that I had become intolerant of gluten intolerance. My son’s diagnosis felt like payback.
We immediately removed gluten from the little monster’s diet, and almost immediately his mood improved. Within a couple of weeks, he began to put the lost weight back on, and was once again the happy, exhausting kid he had previously been.
An Invisible Autoimmune Nightmare
My son’s sensitivity is high. After diagnosis, we began regular check ins with a gastroenterologist. At our first visit, we learned it could take as long as a year for his body to fully heal. We also learned that a single gluten-containing crumb small enough to fit under my fingernail would be enough to make him feel sick for a day or two.
For reasons unknown, the gluten protein causes the villi in the small intestines to flatten out, which then prevents them from absorbing the nutrition passing through the body. This not only results in discomfort, but in some cases the body is so deprived of nutrition and vitamins, that the disease can prevent growth and may lead to additional problems such as anemia, osteoporosis, and weakened bones.
We became gluten fanatics almost overnight. It was fairly easy to cut out the obvious problems – wheat, rye, and barley – but we soon discovered it’s more complicated than just avoiding bread and crackers. The stuff shows up in soaps, shampoos, soy sauce, candies, some hot dogs, dry-roasted nuts, vitamin supplements, toothpaste, and laundry detergents! We had to make special play dough to send with him to daycare, because the store-bought stuff isn’t safe. If they blow bubbles on the playground and he pops one, they have to wash his hands before he sticks a finger in his mouth. When I repaired a small crack in a wall at home, he had to be out of the house until dust from the drywall and joint compound was thoroughly cleaned up, because even those have gluten in them!
Awareness is on the Rise
The good news is having celiac disease in 2018 is a lot better than it would have been even 10 years ago. Our local grocery store has an entire gluten-free section. Most products list all ingredients on their labels, often highlighting known allergens. And overall awareness of gluten intolerance is high. We’ve learned to avoid most cereals, breaded foods, and even some non-wheat grains, as they can have trace amounts of gluten if processed in a facility that also processes wheat. We learned that even if a pizza joint offers a gluten-free option, wheat flour in the air could impact our pie. And we’ve learned that “gluten-free” is definitely not the same as “Certified gluten-free.”
Luckily, in addition to special sections in the grocery store, many restaurants are also proving options for a growing population of celiacs. Even in our relatively small city, there are several gluten-free restaurants. And the local gluten-free bakery is worth a visit, whether you have an intolerance or not.
The Numbers Seem to be Growing
While celiac disease is estimated to impact only 1% of the population, general gluten intolerance is on the rise–four times more common today than it was in the 1950s! It’s not clear why more people are becoming sensitive to the protein, but theories range from changes in wheat, to too much gluten in processed foods, to poor diet and excessive use of antibiotics, contributing to an overgrowth of candida in the gut.
Only One Treatment…For Now
There is currently no cure for celiac disease, and the only real treatment is a gluten-free diet. However, thanks to more people suffering from an intolerance, there is more research underway today than ever before. Several new drugs are being tested, and trials of vaccine-like treatments have already begun in Europe and Australia. It’s possible that an effective solution will be developed before my son grows up and has to opt for gluten-free beer (yep, most beers have gluten, too).
Until then, we’ll keep the house gluten-free, make our own play dough, read every label, and visit that celiac-safe bakery as often as possible. And lots of chocolates are gluten-free, so we have that going for us!