I often cringe when I read an article stating that the “gluten-free diet trend” is all the craze and many of the people who have Celiac Disease or are gluten sensitive are hypochondriacs or attention seekers. It is amazing the spin media is putting on a very real autoimmune condition and in a society where perception trumps fact, this can be a dangerous thing.
Alice Blast recently contributed an article to the Huffington Post which echoes my sentiments exactly. I thought I would share it with you and perhaps you can share it with those who downplay your illness and lifestyle.
Let’s face it, if we can choose not to have Celiac Disease or a gluten issue at all, we would. A gluten-free lifestyle is not a diet so much as it is medicine for us, so that we can live a normal life and not be sick all of the time.
Gluten. It’s everywhere we turn — from our packaged foods to the Internet headlines, there’s no shortage of talk about gluten and a diet free of the sticky protein.
Every time I see an article talking about celiac disease, non-celiac gluten sensitivity (“gluten sensitivity”) or the gluten-free diet, I hold my breath. Sometimes, I don’t even realize that I’m subconsciously bracing myself for the possibility of reading misinformation on a serious autoimmune condition, celiac disease. A condition I happen to live with.
One of the latest articles, “Dear America, Quit Flipping out About Gluten,” accurately covered celiac disease but ruthlessly ridiculed everyone else who is cutting gluten out of their diet. Author Albert Berneko quipped that “‘gluten-free’ has become a kind of health-mindfulness merit badge, an artifact of our Puritanical conflation of self-deprivation and virtue — like how ‘anti-vax’ is used to indicate a variety of take-no-prisoners parental vigilance, or ‘natural birth’ is used to indicate empowered, anti-establishment toughness, or ‘gamer’ is used to indicate virginity and loneliness.” To that I reply (in my best James-Dean-Rebel-Without-a-Cause-Impression), “You’re tearing me apart!”
Dramatic? Maybe. But, 83 percent of the people with celiac disease are undiagnosed. Instead of driving people away from eating gluten-free, we should be encouraging them to get tested to see if they actually have an undiagnosed and serious autoimmune disorder before taking the gluten-free diet for a test ride.
And then there’s the other side of the equation: Gluten sensitivity and other conditions triggered by gluten. What if nearly every day, you saw article upon article claiming your disease isn’t real, isn’t a big deal? And what if those stories subsequently made the people who hold your only medicine — gluten-free food — come to believe that you were making up your disease and instead trying the new trendy diet?
Both the New Yorker and Time recently published stories about the inexplicable rise of celiac disease, which damages the lining of the small intestine when even trace amounts of gluten (found in wheat, barley and rye) are ingested. Undiagnosed or untreated celiac disease opens the floodgates to a host of other potentially devastating health consequences, including infertility, thyroid disease and even cancer. No well-balanced news story can talk about celiac disease without also talking about the only known treatment: a 100 percent, strict, lifelong gluten-free diet.
But what about the people who are not diagnosed with celiac disease? Renowned chef Marc Vetri, a graduate of the GREAT Kitchens online gluten-free training program of the National Foundation for Celiac Awareness (NFCA), is well-versed in safely preparing food for people with a medically-necessary gluten-free diet. Yet, his HuffPost blog published on July 24, 2014 highlighted the problem perfectly — there are many people attempting eating gluten-free (and, according to Vetri, failing) who may not have a diagnosed condition that warrants it. However, according to current research, gluten sensitivity is a real thing and belongs to the world of gluten-related disorders. Researchers are questioning if gluten alone is the culprit. (Translation: There could be more to gluten sensitivity than just gluten. This statement in no way means that the condition does not exist). More research certainly needs to be done, but as of now, there is no test for it other than an elimination diet.
The symptoms of celiac disease and gluten sensitivity are well-documented. A quick Internet search will turn up information on both conditions, which often leads people to take on the gluten-free diet on their own, without first being tested for celiac disease. Enter the “fad” part of the equation. True, many people are out there eating gluten-free for no diagnosed medical reason. But some of them are living with undiagnosed celiac disease, which requires lifelong medical care and follow up.
The bottom line is, dabbling in the gluten-free diet probably won’t actually help one’s health in the long run. Perhaps the phrase “gluten-free diet” is what’s leading people to start trying treatment on their own. If you suspected you had diabetes, would you ever just try some insulin to see how it goes? Certainly not. Celiac disease is no different. Just because our treatment comes from a grocery store shelf rather than from behind a pharmacy counter doesn’t mean it’s not medicine.
I suspect the confusion stems from the word “diet.” When we hear diet, we’re naturally inclined to think of weight loss. In the case of a gluten-free “diet,” the term actually just means the types of food people eat regularly, not in an effort to lose weight. I often wonder, if we started referring to our treatment as a “gluten-free prescription” or “gluten-free regimen,” would people stop equating our medicine with weight loss? While I obviously can’t say for sure, my gut tells me that could be the case.
If you remember nothing else from this post, remember this: Celiac disease is a serious autoimmune disease that needs to be treated under the guidance of a medical professional. If you think gluten is making you sick, get tested for celiac disease before going on a gluten-free diet or you run a high risk getting false negative results. Eating strictly gluten-free is tougher than you might think, and lots of education on the hidden sources of gluten is needed. Don’t deny yourself proper follow-up care and a healthy life. Your results and your health depend on it.
For more information on celiac disease symptoms and testing, please visit www.DoIHaveCeliac.org.