Taft here. Celiac disease is one of those things where an “educated guess” isn’t good enough: either you have it, or you don’t, and a self-diagnosis (unless you’re, you know, a doctor) isn’t going to cut it. So, how did we find out about Heidi’s celiac disease, and how do you find out if you have it? Bear in mind that we aren’t doctors and you should do your own research. Here’s what we’ve learned so far—hope it helps!
What symptoms should I be looking for?
One reason you shouldn’t self-diagnose celiac disease is because it shares symptoms with mono, thyroid issues, and a host of other complaints, including many other autoimmune disorders. With that in mind, however, here are a handful of possible symptoms reported by the Celiac Disease Foundation:
- digestive problems (diarrhea, constipation, bloating, vomiting)
- weight loss
- delayed growth, delayed puberty, or failure to thrive
- unexplained iron-deficiency anemia
osteoporosis or osteopenia (bone loss)
depression or anxiety
seizures or migraines
- fertility problems
Fun, huh? For Heidi, the symptom that finally took her to the doctor’s office was severe stomach pain. At first it was possible to chalk up her weight loss and fatigue to nursing and sleepless nights with a teething baby. Severe cramping abdominal pain, which followed no pattern connected to diet or stress, tipped the balance.
Celiac symptoms can vary from person to person. Also, children and adults tend to experience different symptoms. For example, young children are more likely to experience digestive problems.
It is also possible for celiac disease to be “silent,” or have no visible symptoms. If you don’t have a family history of celiac disease and you aren’t experiencing celiac symptoms, you’d probably never be tested and find out. However, if you have a close blood relative with celiac disease, your doctor will probably advise you to have a blood test for celiac as well. (We highly recommend it!) We plan to have our son tested for celiac when he’s older. For now, though, his pediatrician is simply monitoring his growth and wellbeing. At his age, healthy growth is a good indication that he doesn’t have active celiac. If there’s any cause for concern, we’ll obviously have him tested sooner rather than later. (Have you ever done blood work with a toddler? It’s not something to take lightly…)
How can I be tested?
OK, you’ve read the list above, you’ve scoured the Internet for celiac information, and you think there’s a possibility you have celiac disease. How do you find out for sure?
First, talk to your doctor. Explain your symptoms (listing them could be handy), and why you think it might be celiac disease. If your doctor thinks it’s possible, he or she will recommend a blood test that will measure certain antibody levels.
At this point, you might be thinking, “I’ll just go off gluten and see if I feel better. That can’t hurt, right?”
WRONG. Wrong, wrong, wrong. As good as that sounds, if you go off gluten before being tested for celiac disease, your doctor’s going to tell you to get right back on it. The thing is, without some gluten in your system, a potential celiac diagnosis may not be correct, and you’re just asking for trouble. Worse, if you do become better, you won’t know if it was gluten, or some other factor that changed coincidentally. You might even settle with a “mostly” gluten-free diet, feel pretty well, and never find out that you’re still hurting yourself. Without proper treatment (a completely gluten-free diet), celiac disease can lead to more health problems down the road.
Heidi, thankfully, had not tried going gluten free before her diagnosis. When the blood test results came back, there was no doubt: she had celiac disease.
Second, if your blood test suggests you have celiac disease, your doctor may recommend an endoscopy. While professional opinions vary, there are two reasons we wish Heidi’s doctor had recommended an endoscopy: diagnosis confirmation and damage control. It’s a good way to confirm that the blood test (which, like most medical tests, is almost 100% accurate) was correct. Also, an early endoscopy would have given us an idea of how much damage had been done to Heidi’s digestive tract. About six months after her diagnosis, Heidi did have an endoscopy, and it showed that a strictly gluten-free diet had allowed her gut to heal.
I have celiac disease—now what?!
If you’ve confirmed you have celiac disease, well, you’re in a good place to start learning! Celiac disease isn’t easy to beat, but you can do it. For a start, take a deep breath and say three times, “It’s gonna be OK.” Second, start cutting gluten out of your diet. Third, start reading. One of our first posts about gluten-free living is a good place to start; then you might check out our favorite gluten-free blogs. Our post about the first 72 hours of GF living will also help. If you feel like moaning, “Why me?,” well, you’re in good company: most celiacs feel that way! After more than a year of GF living, though, we can say: it’s worth the change, and it’s a challenge you can handle.
You’ve got this! 🙂