Celiac disease is an autoimmune disease where the body views gluten, which is the protein found in wheat, rye, and barley, as an enemy invader 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 the small intestine.) 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 so sick because a diagnosis can take an average of SIX TO TEN YEARS (y’all that is a loooong time) and all that time, the damage is being done.
My oldest daughter was diagnosed with celiac two years ago when she was 14. She’s removed gluten entirely from her diet and has had no issues. So far, it has simply been an inconvenience. That said, we discovered her condition through a routine test administered by a medical study she was participating in. The previous year the test was negative, so her condition was new, and not much damage had been done, which is not the case for everyone – and that’s not to say her condition won’t worsen. But for right now, it’s easy to manage.
People whose conditions take years and years to diagnose can sustain considerably more damage, and suffer from malnutrition and other very dangerous side effects. Part of the problem with diagnosing celiac is that its symptoms are nebulous and generic and can be a host of other maladies.
According to the Mayo Clinic, the classic symptom of celiac is diarrhea. Other symptoms include bloating and abdominal pain, gas, nausea and vomiting, and constipation – these symptoms are more common in children. Other symptoms more common in children include irritability and behavioral issues, dental enamel defects of the permanent teeth, delayed growth and puberty, short stature, failure to thrive, and Attention Deficit Hyperactivity Disorder.
Most symptoms are in the digestive system, but not all are. More than half of adults with celiac have other, non-gut-related symptoms including anemia, loss of bone density, skin rashes, mouth ulcers, headaches and fatigue, joint pain, or nervous system injury including numbness and tingling in the feet and hands.
Unfortunately, most of these symptoms can easily be attributed to something else, which is how celiac often gets overlooked.
Some long-term health effects found on celiac.org, include twice the risk of developing coronary artery disease and four times the risk of developing small bowel cancers. Additionally, untreated celiac disease can lead to the development of other autoimmune disorders such as Type 1 Diabetes and Multiple Sclerosis, as well as infertility and miscarriage, epilepsy, and migraines.
If you are experiencing these symptoms and haven’t been able to figure them out, a simple blood test (as long as you’re still consuming gluten) can detect certain antibodies which are present when your body considers gluten a threat. It is important to note that people with a first-degree relative with celiac have a much higher instance of also having it – a 10 percent chance of developing it instead of a one percent chance.
A simple precursor to a blood test could be removing gluten from your diet for a short time. If you see relief from some of the symptoms mentioned above, it may be worth exploring further. Keep in mind, though, that a blood test will only be accurate if there is gluten in your diet. So if you remove gluten and find relief and go down the blood test path, you’ll need to add it back in, which will most likely bring those symptoms back. As always, it’s a good idea to talk to your doctor first.
I’ve been about 90% gluten-free for over 10 years, so when my daughter was diagnosed, it wasn’t the panic it could’ve been. I’d already explored different gluten-free options for a lot of different kinds of foods. Regular old sandwich bread remains the hardest thing to get a really good substitute for, though there are some delicious ciabatta rolls available that work well enough for a sandwich. Pasta isn’t much different, and you’d be hard-pressed to tell the difference between a gluten-filled and gluten-free Oreo. Good one-to-one substitute flours are available for baking and there have only been a handful of things I’ve made where you can tell something is a little different in the texture. Eating out isn’t as hard as it used to be, either. Most restaurants can accommodate this basic dietary restriction.
If you’ve got gut issues or other unexplained issues, it may be worth looking into how gluten affects you. Do your research and advocate for yourself or your child. And know that a celiac disease diagnosis is not the end of the world.