Many people who suspect they have celiac disease choose to start a gluten-free diet right away, without a formal diagnosis. While putting yourself on a gluten-free diet might seem less expensive or easier than being tested for celiac disease, maintaining a strict gluten-free diet for the rest of your life when it’s not medically necessary will end up being significantly more expensive and challenging.
Here’s why it’s so important to be tested for celiac disease before going gluten-free:
- Going on a gluten-free diet makes it harder to be tested for celiac disease later.
Diagnostic tests for celiac disease require that you be on a gluten-containing diet so that the test can detect gluten antibodies. If you are already on a gluten-free diet when you decide to be tested, you will need to reintroduce gluten into your diet for several weeks before your blood test, in order to get an accurate result.
- Celiac disease is genetic.
1 in 10 family members have celiac disease. This means that if you have celiac disease, your family members have a very high chance of developing the disease. Having a diagnosis helps you know if you can pass on celiac disease to your children, or if other relatives should be tested.
- Left untreated, celiac disease increases the risk of other diseases.
Untreated celiac disease can lead to the development of other autoimmune diseases like type I diabetes and multiple sclerosis (MS), and many other conditions, including dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions including epilepsy and migraines, short stature, heart disease, and intestinal cancers. Patients with confirmed celiac disease need to be on a strict, gluten-free diet in order to reduce their risk of developing these other conditions. This means no cheating!
- Having a formal diagnosis of celiac disease can improve dietary adherence.
Being formally diagnosed lets you know how strict you need to be with your diet and how careful you need to be about avoiding cross-contact with gluten. People with celiac disease need to be much more vigilant with their diet than people with gluten sensitivity or those choosing to go gluten-free for lifestyle reasons because of the intestinal damage caused by celiac disease.
- A celiac disease diagnosis is more than just going gluten-free. It requires a plan for long-term care.
While currently the only treatment for celiac disease is adhering to a strict lifelong gluten-free diet, a celiac disease diagnosis requires a plan for long-term care. You will need a follow-up treatment plan with your doctor and dietitian to make sure you are thriving on the gluten-free diet, including monitoring your intestinal healing, correcting any nutrient deficiencies, and checking for the development of other related conditions.
- Being formally diagnosed can get patients the resources they need.
A formal diagnosis can get you a physician referral to a dietitian who will teach you what foods to eat and to avoid, how to get all the nutrients you need, and how to identify hidden sources of gluten in food labels. A formal diagnosis can help with insurance costs related to celiac disease, including follow-up care with your physician and dietitian, and testing for other autoimmune diseases. A formal diagnosis also qualifies you for federal benefits, including an itemized tax deduction for gluten-free foods, unemployment benefits if you miss at least one year of work, and protections under the Americans with Disabilities Act (ADA). Through a 504 Plan, children with celiac disease are guaranteed accommodations from pre-school to college if they attend a school that receives federal funding. Additionally, having a formal diagnosis for children can help their condition be taken more seriously by teachers and classmates.
- Having an accurate estimate of the number of people diagnosed with celiac disease helps advance research.
In order to develop new diagnostic tests and drug treatments for celiac disease, volunteers are needed for clinical trials and studies. Often, someone wishing to participate in these trials needs to be formally diagnosed with celiac disease in order to participate. Getting diagnosed with celiac disease can also impact the amount of attention the disease receives from researchers. Having more people who have a formal diagnosis of celiac disease will give scientists a more accurate picture of the prevalence of celiac disease. The more people diagnosed, the more likely it is that research for celiac disease treatments and a cure will receive funding.
- Getting tested for celiac disease can help patients discover the cause of their symptoms.
Other serious conditions have similar symptoms to celiac disease. Getting tested for celiac disease can help you discover what is causing your symptoms, even if it is to rule out celiac disease. A formal diagnosis can help determine if gluten is what is making you sick.
- A formal diagnosis will be needed to receive a celiac disease drug (once a drug is approved by the FDA).
There are several companies working on developing a drug for celiac disease. While we may still be years away from having an FDA-approved drug for celiac disease, once it is made available, patients will need to be diagnosed with celiac disease in order to receive it and possibly have it covered by insurance.
- It may be unwise to go on a gluten-free diet if it is not medically necessary.
There is a common misconception that eating gluten-free is healthier overall and will aid in weight loss – this is false. In fact, researchers have found that avoidance of gluten often results in an overall reduced consumption of other beneficial whole grains, which may negatively affect your risk for cardiovascular disease. Pre-packaged gluten-free food often lacks essential vitamins and nutrients and is often higher in sugar and fat and lower in protein than gluten-containing alternatives. Food that is modified to be gluten-free is also more expensive than its gluten-containing counterparts. Going on a gluten-free diet is only beneficial to those who are medically required to do so.
Not sure if you should get tested? Take our quiz to see if you are at risk for celiac disease.
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Why You Should Be Tested Before Going Gluten-Free