First published in Allergic Living magazine; to subscribe click here.
What seems like a harmless experiment could do more harm than good.
A few years ago, a gluten-free manufacturer approached me to partner on a major social media campaign. The theme: “Try a gluten-free diet for two weeks and see how you feel.” I said no.
While the promotion probably would have helped certain people identify symptoms that suggest a gluten issue, that’s not good enough. One of our key missions at the NFCA is to help people live full and healthy lives, and that means emphasizing a long-term view on how choices today may affect our bodies in the future.
Self-diagnosis is a rampant trend in the gluten-free sector, and it’s stoked by pop culture and marketing messages that encourage people to “just go gluten-free”. It sounds harmless enough, but is risky advice when it comes to potentially serious health conditions.
Here’s an all-too-familiar scenario: a person tries a gluten-free diet for a week or two and notices an improvement in health. The person then goes to the doctor suspecting that celiac disease or another gluten-related disorder may be the culprit, only to hear that he or she will have to go back on gluten in order to get tested. Frustrated, the person leaves the doctor’s office, never goes back on gluten and never gets tested.
I can’t fault someone for refusing to go back on gluten after experiencing how a gluten-free diet has restored my health no one wants to experience that pain and discomfort again. But that liberation doesn’t override the missed opportunity and critical step of visiting a doctor to get tested before trying a gluten-free diet.
If a person will ultimately end up on a gluten-free diet, what’s the harm in doing it right off the bat? To better understand the difference, it helps to step back and look at the bigger, long-term health implications.
When a doctor diagnoses celiac disease, that action dictates a number of next steps. Family members should be tested, and anyone with celiac disease should be checked for vitamin deficiencies and other autoimmune disorders. Self-diagnosis often leaves medical experts out of the conversation, and that means missing out on important tests, follow-up, preventive health care, identification of other conditions (such as anemia or thyroid disease) and potential diagnosis for relatives.
A medical diagnosis of celiac disease also plays an important societal role by helping physicians to gather more accurate facts and statistics about the autoimmune condition. In order to find alternative treatments and a possible cure for celiac disease, scientists need to know as much as they can about the celiac disease population. Self-diagnosis prevents researchers from capturing the whole picture.
Another risk in self-diagnosis is not having the proper support or guidance for maintaining a gluten-free diet. Eating gluten-free is not easy, and it’s tempting to cheat from time to time. Doctors and dietitians can provide the information, tactics and strength needed to stay gluten-free, and they can identify problems if you are accidentally ingesting gluten before serious or long-term health effects take hold.
On the flip side, if you do not have celiac disease, getting tested can help you make more informed decisions about your health. You can decide with your doctor whether to try a gluten elimination diet, a low-FODMAP diet, or you may establish that gluten isn’t the issue at all. The latter allows you to avoid the social and financial challenges regularly associated with the gluten-free lifestyle. Isn’t it better to know that now?
These are all important reasons why I don’t support self-guided gluten-free “challenges”, but the biggest factor is that these home experiments make our lifestyle sound so frivolous. Our celiac community struggles every day with myths and misguided assumptions about the gluten-free diet; we don’t need to give the general public more reasons to think lightly about our needs.
I know the medical community isn’t perfect, but I stand firm in my conviction that everyone should see a doctor and ask for a celiac disease test before trying a gluten-free diet.
It will always be easier to “just try” a gluten-free diet, but together we can teach others why testing is important, and how to do it: take the Celiac Disease Symptoms Checklist at DoIHaveCeliac.org and share your answers with your doctor. Ask for a celiac disease blood panel, and make sure it includes tTG and total IgA.
It’s not just a test; it’s a necessary step that can have a resonating impact on your health, your family, and the rest of your life.
Alice Bast is CEO of Beyond Celiac, the national organization working on behalf of the celiac patient community. Visit BeyondCeliac.org to learn more.
Read more articles by Alice Bast:
Never Too Early to Start Educating Kids About Celiac Disease
Resist That Urge to Cheat on the Gluten-Free Diet
Sibling Blues and Celiac Disease