Thinking About Going Gluten Free? Do This First.
“If I stop eating gluten will it help my thyroid eye disease symptoms?”
I have seen this question posed online more times than I can recall. And I understand why - with so few treatment options during thyroid eye disease’s (TED) active phase, combined with the highly emotional and personal nature of the disease, it is understandable to want to try anything that might help. But before you start researching the best gluten-free bread, consider speaking with your doctor about getting tested for celiac disease first.
“What does celiac disease have to do with thyroid eye disease?”
Researchers believe there is a link between celiac disease and autoimmune-related thyroid conditions, including Graves’ disease and Hashimoto’s Disease. While some people with Hashimoto’s also have thyroid eye disease, up to half of people with Graves’ disease will develop TED.1,2
“Okay, so what is celiac disease?”
Celiac disease is a serious, genetic autoimmune condition. When a person with celiac disease consumes gluten (a protein found in wheat, rye, and barley), it triggers an immune response within the body. This causes damage to the small intestine. There are more than 200 symptoms related to celiac disease, and it’s not all about stomach aches and acid reflux. Celiac disease can cause joint pain, anxiety, fatigue, dental issues, migraines, anemia, and skin rashes, just to name a few. Left undiagnosed, celiac disease can have serious long-term consequences such as osteoporosis, infertility, seizures, and cancer.3,4
“But wouldn’t I know if I had celiac? Wouldn’t I be able to tell the difference between that and a gluten intolerance?”
Celiac disease and non-celiac gluten sensitivity have many symptoms in common, which makes it difficult to make a distinction based on symptoms alone. Because non-celiac gluten sensitivity does not involve celiac-related antibodies and damage to the small intestine, a diagnosis of non-celiac gluten sensitivity is given only after celiac disease is ruled out.5
Furthermore, the severity of symptoms is not necessarily a good indication. Some people with “silent celiac” have no outward symptoms at all, yet internal damage is still being done and they remain at risk for long-term complications.3
“If I feel better eating gluten-free, what’s the big deal? Why do I need to know if I have celiac disease if I’m going gluten-free anyway?”
The tests for celiac disease normally include a blood test and an endoscopy. The blood test looks for antibodies caused by the consumption of gluten, while the endoscopy looks for damage to the small intestine.6
In both cases, these tests are only reliable if the person is on a gluten-containing diet. Say someone tries the gluten-free diet without getting tested for celiac disease, and they end up feeling better. If they ever want to get tested for celiac disease in the future, their doctor would likely advise undergoing a gluten challenge. This entails eating gluten for several weeks to months leading up to the tests in hopes of seeing if the body creates antibodies or develops damage to the small intestine that would indicate celiac disease. This may sound like an awful prospect if gluten makes the person sick.7
Furthermore, celiac disease is genetic, so it is important for immediate family members to have periodic testing. It is also considered a disability under the Americans with Disabilities Act, and proper documentation from a doctor may be needed in certain situations where reasonable accommodations are being requested. And considering that the treatment is a strict life-long gluten-free diet – forever is a long time, and it is important to know how careful one needs to be when it comes to cross-contact and small amounts of gluten. As previously discussed, undiagnosed celiac disease can cause serious long-term health consequences, so the proper diagnosis can be life-saving. 8
So if you are planning on going gluten-free, consider first speaking with your doctor about getting tested for celiac disease. Not all TED specialists, endocrinologists, and primary care doctors are well-versed in celiac disease, so they may refer you to a celiac disease specialist or gastroenterologist familiar with the condition.
Do you find it difficult to talk about your TED?