If you have a loved one recently diagnosed with celiac, you may be wondering how to support people with celiac disease. The only treatment for celiac disease is a gluten-free lifestyle. I say lifestyle and not a gluten-free diet because people with celiac disease must maintain a lifelong gluten-free diet.
You might think to yourself, well they just have to avoid gluten right? It’s not as simple as that, a gluten-free diet can impact many aspects your life, which is why it’s important to support people with celiac disease.
Celiac disease is an autoimmune disease where immune cells “overreact” to gluten in the duodenum of small intestine. This overreaction causes damage to the small intestine that overtime can lead to multiple complications if someone with celiac disease continues to eat gluten.
Problems of non-adherence to a gluten-free diet include malnutrition, bone issues, reproductive issues, thyroid problems, and increases risk for certain cancers. Not to mention the uncomfortable symptoms associated with gluten exposure in those who are symptomatic.
And non-adherence is a problem. Many people with celiac disease knowingly or unknowingly are exposed to gluten frequently. In a study of 35 patients with celiac disease, 20% reported non-adherence to a gluten-free diet, another statistic from the organization Beyond Celiac says that 70% of people with celiac disease remain exposed to gluten with 80% of people reporting daily burden with staying strictly gluten-free.
Obviously, sticking to a gluten-free lifestyle is hard, which is all the more reason support is needed.
Now that we know what celiac disease is and why support is important, let’s talk about how to support people with celiac disease. When helping people understand how to support others with celiac I like to refer to the four R’s, Research, Raise Awareness, Reach Out, and Respect.
Reading this post is a great start to support and researching other information about celiac disease can be helpful to. Beyondceliac.org is one of my favorite resources (along with my blog *wink*)
Being informed on what celiac disease is and what a gluten-free lifestyle entails better positions you to support us and raise awareness.
1 in 100 people have celiac disease. Often people are confused by our needs because of other people without celiac disease eating gluten-free.
Helping raise awareness of our existence and needs helps make sure we are supported when out in the public. It can be the difference between a server scoffing at our questions and taking us seriously.
Don’t stop reaching out. It’s common for people with celiac disease to start to socially isolate themselves. Keep inviting them out and ask them for ways you might be able to help them still feel included.
Another great way to support people with celiac disease is through respect. One of the biggest things I think people with celiac disease struggle with is getting respect. It can be hard to understand and respect the needs of someone with celiac disease if you’ve known them to be okay your whole life. Why now? How come they used to be able eat gluten for all the years you’ve known them?
The answer is that celiac disease is environmentally triggered and can be triggered at any point of life. You can be fine one day and not the next. That’s the nature of this autoimmune disease. It’s important that you respect their diagnosis and new needs.
If you are confused or want to know something, ask us respectfully and don’t do it in front of other people (like servers).
If we say no to food you’re offering respect it. If we say no to anything, respect it. We don’t want to seem “difficult” we just want to keep ourselves safe.
With celiac disease and a gluten-free lifestyle, comes a lot of changes and needs. You might question them, but it’s important you respect them.