There are several good reasons to obtain an official diagnosis; learn more in Four Reasons to Pursue a Diagnosis of Celiac Disease or Gluten Sensitivity. Doctors and medical experts strongly recommend pursuing such a diagnosis, in large part because people with celiac disease should be monitored for specific health issues known to be associated with celiac. In addition, many people push hard for an official diagnosis in order to persuade reluctant family members to be tested, too.
But despite this, there are several good reasons not to seek an official diagnosis. Here are four of them:
1. Getting diagnosed can be a pricey and frustrating! process.
Despite recent increases in physician awareness of gluten issues, not all doctors are up-to-date on celiac disease and gluten sensitivity, and some frankly don't much believe in the conditions. If yours happens to be in this camp, you could be in for a dishearteningly negative response when you ask for celiac disease testing, and for some out-and-out eye-rolling when you ask for gluten sensitivity testing.
I've heard many stories from readers who attempted to persuade their physicians to order testing, but who wound up giving up in exasperation and trying the gluten-free diet without a diagnosis. Not all physicians are ignorant about gluten issues, but enough are to make this a significant problem.
In addition, testing can be very expensive, depending on what your insurance covers (and doesn't cover). To be diagnosed with celiac disease, you'll generally undergo one or more blood tests (possibly totaling several hundred dollars), plus an endoscopy and biopsy (potentially costing several thousand dollars). There's currently no widely-accepted test for gluten sensitivity, but private direct-to-consumer testing options generally run several hundred dollars or more, and insurance probably won't reimburse you for them.
2. If you've already gone gluten-free, you'll need to undergo a gluten challenge to be tested.
To be tested for celiac disease, you need to be eating gluten — and in some cases, lots of gluten. That's because the tests look for antibodies your body produces in response to your gluten ingestion. No gluten = no antibodies = negative test results.
If you've already gone gluten-free (and experienced improved health as a result), you'll actually need to go back on gluten if you want to try to get a diagnosis. This process, known as a gluten challenge, can take several months.
In many cases, people undergoing a gluten challenge find their health issues come back in spades once they start consuming gluten again, making for several months of discomfort or even sheer misery. Sadly, even after suffering through the challenge, they also often find it doesn't even deliver the desired results (i.e., a firm diagnosis).
Is it worth it? Only you, in consultation with your physician, can say. But there's no doubt that the idea of a gluten challenge dissuades many people who might otherwise pursue a diagnosis.
- Why Do I Need To Eat Gluten for Celiac Disease Testing to be Accurate?
- What's Involved in a Gluten Challenge?
3. An "official" diagnosis could make your insurance costs go up.
Health insurance companies have been known to jack up rates for people diagnosed with celiac, and in a few rare cases, insurers have turned down celiacs' coverage applications altogether. I know plenty of people who have decided against testing because of the impact a positive test result could have on their health insurance coverage. (Because gluten sensitivity is a newly recognized condition, it doesn't seem to be on insurers' radar screens yet, and a gluten sensitivity diagnosis likely won't affect your coverage.)
Fortunately, this problem with health insurance should evaporate beginning on Jan. 1, 2014, when most provisions of the Affordable Care Act (a.k.a. Obamacare) take effect, and insurers can no longer adjust your rates or deny you coverage for your pre-existing health conditions. Unfortunately, though, health insurance isn't the only form of insurance that a celiac diagnosis can impact.
People with official celiac disease diagnoses may also pay more in life insurance premiums. Again, there are a few reports of people being denied life insurance altogether due to this autoimmune condition, but most reports simply involve an increase in premiums. Not everyone seems to see this increase (it depends on the life insurance company), but some definitely do.
It goes without saying that you should be honest on any insurance application: if you've been officially diagnosed, you need to disclose that. But if you choose to go gluten-free without the benefit of that official diagnosis, there's no need to tell your insurance company — and you might save some money because of it.
4. You don't need a diagnosis to eat gluten-free.
I've saved for last what some consider the most important reason not to get an official diagnosis: you don't actually need one. Going gluten-free involves a change in diet and a change in lifestyle; it doesn't involve taking drugs, and it doesn't require a physician's permission. You just do it.
There are, however, some real risks in this. If you truly have celiac disease but remain undiagnosed, you and your doctor won't know to watch out for health conditions known to be associated with celiac disease, including additional autoimmune disorders. It's also possible to suffer from celiac-related malnutrition, but you'll never know if that's an issue for you if you remain undiagnosed.
Still, I know plenty of people (including close friends) who chose to try the gluten-free diet based on their symptoms alone. Some did this without consulting with a physician or attempting to get a diagnosis, while others did this after a frustrating trip through conventional medicine's halls — a trip that didn't yield the diagnosis they craved. In all cases, though, they saw such a dramatic improvement in their health as a result that they decided to remain strictly gluten-free despite the missing diagnosis. For some of them, their physicians know and approve. For others, they haven't seen the need to mention it.
If you're one who likes to be in charge and take control of her own health, this option may appeal to you. Just please be careful: if you continue to have health issues that don't clear up after you go gluten-free, see a physician to make sure you don't have some other condition that needs addressing.