Celiac patients wonder why Celiac disease is not taken seriously. I can tell you a couple of reasons….

First, Celiac disease is controlled by diet. I saw a post today talking about Celiac testing for someone that had already gone gluten free. The poster was frustrated. They felt they had to poison their body just to get a test. They already knew they needed to be gluten free. The treatment is the same, so why bother?

Except, Celiac disease has over 300 symptoms that can be vague. Knowing you have Celiac disease versus some other disease is important. The other diseases have a different cures or outlooks. I have read too many stories where people think they have Celiac disease and go gluten free. Later they find out, it was a different disease altogether. Because they delayed care thinking it was Celiac, they have more advanced disease.

To add to this argument, Celiac disease does not have a medication. People believe that if there is a medication, it is serious. Like if I scratch myself and heal without going to the doctor, my injury was not serious. If I scratch myself and have to get stitches, that’s more serious. Same thing here – if I don’t take a medication, Celiac is not serious. (Yes, I know getting stitches is more serious, but I’m trying to make a point.)

Second, the genetic roots of Celiac disease create a false sense of disease. This leads some people to say, “I carry the Celiac genetics, so I must have Celiac disease.” By that logic, everyone with a BRACA gene, must have breast cancer. Estimates show between 45% and 85% of those with BRACA genes get breast cancer. Still, 15% to 55% don’t get breast cancer.

Many diseases with genetic roots are similar, you have the genetics but not necessarily the disease. Genetics show the possibility of disease, not the presence of disease. Over 30% of the population carry genetic markers for Celiac. Less than 3% of people are diagnosed with Celiac.

In summary, Celiac patients must ensure our disease is taken seriously. We have to educate, inform, and advocate for ourselves.

Finally, Celiac disease is not dramatic. A Celiac patient having gluten is not going to have a life threatening allergic reaction. It is the quiet pain of symptoms in your home where nobody else sees. It is the moments of agony from gastrointestinal distress, brain fog, body aches, and fatigue. It is the social isolation, being made fun of, and constant vigilance of eating gluten free that eats away your mental health.