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I Am Not My Treatment: A Disease Overshadowed by Glutenspeak

05/14/2015 06:39 pm ET | Updated May 14, 2016

May is Celiac Awareness Month. My guess is that it's mostly celiacs who are aware of this; it's celiacs who are more aware of the facts about the disease, the stats, the treatment.

Celiac disease websites, message boards, and blogs are probably visited mainly by celiacs, or by those suspecting that they have celiac or non-celiac gluten sensitivity.

But sometimes it's those who are uninterested, unaware, undiagnosed who need the information the most. It's a task made more difficult, ironically, by the popularity (or infamy) of the disease's treatment.

Gluten-free. Depending on whom you talk to, it's a diet, a treatment, a lifestyle, or a fad. And it's ubiquitous. It's overused. It's played out. It's diluted.

The popularity of the gluten-free diet has both helped and hurt those with celiac disease. It has brought more options to the shelves of grocery stores. And it has also brought criticism, mockery, and dismissiveness from those who don't even realize that they may be sneering their way to an early grave.

The gluten-free diet might never be taken seriously because it has moved into the realm of "fad." Okay, fine. However, one downside of all the hubbub about the treatment is that the disease a gluten-free diet treats has been overshadowed. It's when the disease isn't taken seriously that the problems start to arise.

Celiac disease is not a fad (despite celiacs maybe wishing it would just go away already). It's an autoimmune disorder, and it's genetic. Most celiacs already know that, and they might also know how hard it can be to convince family members to get screened for it too. Maybe because the people they are trying to convince are sick of hearing about gluten. Or maybe because they are tired of hearing that they should get screened just because someone else tested positive. Or maybe they'd rather not be diagnosed because they don't want to give up gluten.

No celiac wants their family members to have celiac disease. But they don't want them to risk feeling sick, being malnourished, or continuing to damage their insides either. Screening for celiac is not about living gluten-free. It's about screening for a disease for which, luckily, there is a treatment.

According to Dr. Daniel Leffler, director of research for the Celiac Center at Beth Israel Deaconess Medical Center in Boston and NFCA Scientific/Medical Advisory Council Member, celiac disease should be a part of family medical history, and getting screened should be the default for those who have celiac in their family.

But what should be is not necessarily what is, and the National Foundation for Celiac Awareness (NFCA) has launched a campaign that aims to bring us one step closer to this ideal. "Seriously, Celiac" urges diagnosed celiacs to talk to their families about getting screened. In an interview with Alice Bast, president and CEO of the NFCA, she mentioned that the key is keeping the focus on the disease, not the lifestyle.

For example, say you have been diagnosed with celiac disease and want to convince your family members to get screened. Rather than saying something along the lines of, "Maybe you should try going gluten-free," you might instead explain that celiac is genetic, and all you're asking for is a simple blood test. It's a small ask that might lead to a lifesaving diagnosis -- and can save years of distress.

Jillian Lagasse, co-author of The Gluten Free Table and The Lagasse Girls' Big Flavor Bold Taste and No Gluten, recalls feeling panic and excitement when she was diagnosed with celiac disease over 10 years ago. Panic because she had been diagnosed with a life-changing disease, and excitement because, well, after suffering throughout her entire life and being misdiagnosed several times, she finally had a diagnosis.

Okay. This all might be sounding very self-serious. Can't I lighten up? Crack a joke? Here's the problem with that. There are people who make jokes about being gluten-free, and it's not always understood that those jokes are generally aimed at the absurdity of the fad, not the treatment. There is a difference between the gluten-free fad and the gluten-free treatment, but it all gets lumped together as "gluten-free." Then more jokes are made, and the race to see who can come the closest to crossing the line begins.

But because the gluten-free treatment/fad line is so non-distinct, sometimes jokes do cross into treatment territory, which is on the side of disease. That's when people stop taking seriously what needs to be taken seriously, which can be harmful. It's rare to hear a joke about other kinds of diseases. Or to see so much skepticism and snarkiness surrounding them. As much as celiacs might have a sense of humor right along with everyone else about the gluten-free fad, it stops being funny when a celiac approaches his or her family about getting screened and is met with an eye roll.

Everyone will have a different reaction to being asked to get a blood test for celiac disease. Maybe it won't be an eye roll, but reluctance. Or denial. Or fear. It might require patience, or it might require no convincing at all. Once we start slicing off the breadth of misconceptions and associations with the barnacle-like fad of ill repute, we can really start saving lives.

Copyright © 2015 Celia Kaye
All Rights Reserved

Celia Kaye is the name under which writer-filmmaker Kaitlin Puccio pens articles about her experience with gluten sensitivity. Kaitlin has written a forthcoming children's book on celiac and gluten sensitivity for the Celia Kaye lifestyle brand, and has been a contributor to MindBodyGreen. Follow her on Twitter, like her on Facebook, and visit her at celiakaye.com.

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