When our oldest daughter was born almost 15 years ago, the hospital was a testing site for a new global study that was in its infancy called the TEDDY Study (TEDDY stands for The Environmental Determinants of Diabetes in the Young).
With my daughter’s PKU blood test, they could test her for the genome that indicates if a person is considered high risk for developing Type 1 Diabetes Mellitus (T1DM), or what used to be known as Juvenile Diabetes.
The general population without the genome has a 0.3% chance of developing T1DM; the genome increases your chances to 3%. Our baby had the genome, so we enrolled her in the study. It follows a kid for 15 years, with four yearly visits from birth to age four and then twice a year from four to 15.
I don’t want to bog you down with the details, but during these visits, they take her blood and test it for a couple different things: damage to the pancreas which could lead to T1DM, thyroid function, and celiac disease. All of these are autoimmune conditions and there’s a correlation between them.
They also collect and/or track various and random other things – drinking water, toenails, stool samples, food records, accelerometer readings (to track activity and movement), surveys about our feelings and major life events, sicknesses, medicines, changes in groups. You name it, they want to know about it.
It’s been really interesting and has reassured us that if anything does change with her pancreas function, we’ll find out about it almost as it’s happening and before she gets really sick – not when she ends up in a diabetic coma.
So for these past 14½ years, we’ve been doing our part for science and not thinking too much about it.
Until last month when we got a call that one of the tests came back positive…
Of all the things that could’ve gone sideways in this round of testing, Celiac is the best one in my mind. Her numbers came back low, but definitely positive. Last year at this time, her test was negative, so there hasn’t been too much damage yet.
For the study’s purposes, it’s just an isolated incident, but they’ll test her again at her half birthday appointment in the summer. If the positive reading persists, then for the sake of the study, she’ll have Celiac Disease, although the only definitive way to confirm Celiac is with a biopsy of the small intestine.
Celiac Disease is an autoimmune disease where the body views gluten (the protein found in wheat, rye, and barley) as an enemy and creates antibodies to attack it. These antibodies damage the villi in the small intestine. The villi are little finger-like structures that grab nutrients as they make their way through – when the villi are damaged, these nutrients can’t be passed into the bloodstream and carried throughout the body, which can lead to malnutrition.
Many people get very sick because a diagnosis can take a long time – sometimes many years – and all that time, the damage is taking place.
When I broke the news to my daughter and told her it could be showing up in bathroom situations (which P.S., all 14-year-old girls LOVE to talk about) – constipation, diarrhea, bloating, stomach ache, gas, etc., she said, “Oooooh I wonder if that’s why my stomach hurts every time I eat?” (So then we had a conversation about how your body doesn’t hurt if it’s working properly, so she should let me know when something hurts regularly.)
She has handled the news with remarkable grace, even though she is missing soft, squishy bread and Chick-Fil-A nuggets. We removed gluten from her diet and her stomach doesn’t hurt anymore.
It helps that I’ve been 90% gluten-free for years. My CrossFit gyms got me started with it, and several Whole 30s later, I know that too much gluten will bother my gut and my joints and my face. Over the years I’ve found great recipes so I don’t miss out on too much and I’m not afraid to experiment.
I have my list of go-to blogs and sites for recipes, but you can google “gluten-free whatever it is you’re looking for” and I’m sure you’ll find something you like. I’ve proven that gluten-free cupcakes can be delicious, chocolate chip cookies can still be decadent, and a macron from her favorite bakery in town is still OK.
We’ve followed her lead on how big a deal to make of this and so far, she’s just rolling with it. It is what it is.
We’re also trying to do the same, but it’s a challenge not to research this into oblivion and cram information down her throat every time she turns around. She understands what it is, what it means for her, and has started managing it well on her own.
Which is what we want her to do – it’s her life, her health, and she’ll be all the way in charge of it before we know it. Our job is to guide her and keep her safe while fostering her independence. This isn’t something we can do for her, and it’s tricky to take a step back while she steps up.
But that’s what raising teenagers is all about – getting them ready to live their lives on their own.
