Are you aware of celiac disease? Silly question, I know. But, of course, some people aren’t. Just yesterday, I “came out” as gluten-free to the high school student I’ve been tutoring since last fall, and she asked, “What’s gluten?”
High school students aren’t the only ones unaware of celiac disease—there are doctors who might have the same question, even if they’re less willing to ask it. For this reason, we have Celiac Awareness Month, beginning tomorrow.
Just to be contrary, though, I’m working on raising awareness of something else: gluten-related disorders. At Columbia’s symposium on Development of Therapies for Celiac Disease, “celiac disease” took pride of place in the conference’s name, even though many presentations focused instead on gluten sensitivity, gluten ataxia, and the possible involvement of gluten in some cases of schizophrenia, autism, and other neurological conditions. Quite a spectrum.
Why wasn’t the conference named “Development of Therapies for Gluten-Related Disorders”? There could be several reasons: 1) It was being put on by Columbia’s Celiac Disease Center, which also hasn’t made the leap to putting GRD in the title; 2) “Celiac disease” still has more cachet as a “real disease” with some doctors and researchers; and 3) The term “gluten-related disorders” is still too new for people to have heard it.
“New” is a relative term. Scientists have been recommending this umbrella term since 2012, yet many still haven’t caught on. As a gluten nerd, I receive Google Alerts on “celiac disease” and “gluten sensitivity.” Nearly every day, some newspaper, magazine, or website comes out with an article that uses outdated terms.
I’m a fan of “gluten-related disorders.” To learn why, check out my latest post on My Life with Food Allergies.
And if you think the world needs awareness of all gluten-related disorders, please share.
Based on a Sprue Story 
I think this is progress, because gluten is connected to so many autoimmune conditions and diseases. It’s good that gluten in on the radar of many concerned groups, now, though we need to also include lectins. A lot of people who are gluten intolerant have just as many problem with lectins, but you never read anything about them. I think we are going to find that you can’t separate out one component of anything and fix the whole thing. We really do have to work with the whole person, the full diet and lifestyle, etc.
“We really do have to work with the whole person, the full diet and lifestyle”<–Could NOT agree with you more!
I agree with your reasoning, especially that because a diagnostic test for celiac disease exists, doctors are more confident in diagnosing it than other gluten-related disorders. People are jaded, and have seen different untestable syndromes become “popular”, and they see gluten-related disorders as only the latest fad disease to come through. Syndromes that have no blood test or that you can’t biopsy for, like Chronic Fatigue, ADD, Asperger’s, have signs and symptoms that people see in themselves at least occasionally, and so do gluten-related disorders, making for a lot of self-diagnoses that the medical professionals are probably suspicious of. It’s great that more research is being done!