Since receiving my celiac diagnosis just over three years ago, I've learned a lot along the way. I'm sure that if you're reading this and you have celiac disease that you too are learning something new with every step in your journey back to health.
One thing that I have noticed, which I feel is unique to celiac disease sufferers, is that whenever I try and share my experiences, and what I have learned about my needs with regard to food, my statements are often met with anger, ire, or just completely dismissed.
Because going gluten-free has become such a trend, many people are just so misinformed about what celiac disease actually is. And unlike other serious autoimmune conditions, somehow there always seems to be a question as to the validity of celiac disease. In cases where individuals living and surviving with other autoimmune diseases are not questioned, somehow it is socially acceptable to question celiac disease. Why?
I think the answer is plain and simple: There is a lack of education about what celiac disease is. I would also argue that our society is utterly obsessed with policing other people's bodies. Particularly when food is brought into the equation the intensity for policing, judgment, and condemnation spikes. I have even had the misfortune of experiencing this within the medical community. For reasons beyond my comprehension, I have had medical professionals argue with me over the validity of my disease, even though I have the tests and labs to prove its existence. Thankfully these individuals do not treat me, but it scares me to think that they have patients who may be suffering. Is science and hard data not enough to simply acknowledge that celiac disease is real and much more widespread than many people believe?
Not long ago I was filling out a health questionnaire on which I was asked to list health conditions. Nowhere on the list did celiac disease appear. I thought to myself, okay well that's fine; there must be an "Other" option where I can explain my disease. Unfortunately there was not, and while this might not seem like a big deal, there is something to be said for looking at a list filled with autoimmune diseases and not seeing yours even thought it is one of the most common of all. Despite "celiac disease [being] one of the most common autoimmune conditions affecting approximately 1 in 133 people," I can't even list it on my patient profile. Something about that doesn't seem quite right to me. And "even though celiac disease is very common [and increasing numbers of people are being diagnosed], more than 80 percent of celiac disease patients remain undiagnosed." Could hesitation to acknowledge the severity of celiac disease along with a lack of education be part of the problem? And is this why celiac disease is treated, by some, with less dignity and respect than other diseases?
It may seem silly to some people that I voice this frustration at all, but I believe that it is something that must be addressed. It simply cannot remain the case that people with celiac disease are left to suffer for years before receiving a proper diagnosis, that they live in shame because many do not recognize the severity of their disease, that they are questioned or viewed as picky or high maintenance. This cannot continue to be the state of affairs for those of us living with celiac.
One of the most frustrating things I have encountered throughout my journey to health is the mischaracterization of celiac disease in the media. I have seen celiac disease depicted countless times as an allergy or intolerance. Even Michael Pollan explained celiac disease as "a real allergy to gluten" in his "Cooked" documentary series on Netflix, which of course it is not. It's an autoimmune disease. This is by no means a slam against anyone, but rather a plea that people become fully educated about a disease before speaking about it or on behalf of it.
While that type of wrongful characterization of celiac disease may not seem overtly harmful, it is frustrating and it contributes to how people view the disease. The American Council on Science and Health recently released an installment of their "Fad Friday" discussing the existence of gluten-free vodka. Interested given the "fad" designation, I watched the whole video. It was indeed interesting but I also found it problematic. It seemed to me that piece suggested that perhaps these labels are more about marketing than science based health facts. As the video explains, the FDA states that all distilled spirits are gluten-free because the distillation process "removes" gluten. However, I personally react to these beverages even though I'm not "supposed" to. To those who doubt that claim, I ask what should I trust? My body or the FDA? Not only can you react to this type of spirit, a person with celiac disease can react to additives that are not gluten-free that are added to naturally gluten-free beverages, which the series did in fact point out. But it seems to me that this point alone makes it clear why gluten-free labeled vodka exists. So then what is the point in asking why "gluten-free labels are a thing" and file it under a fad when it is clear why they exist? Why add to the misinformation about and judgement of celiac disease? Why not instead do a piece highlighting the need for such labels in order to raise awareness?
Celiac disease is not an allergic reaction to wheat. It is not merely an intolerance to wheat. It is a disease, an autoimmune disease which has devastating effects for those who live with it if it is not treated properly and the only treatment for it is a completely gluten-free diet. The gluten-free diet is my prescription. It is how I live a healthy and happy life. So if I buy vodka that I know and can trust is safe for me why should that be criticized? What is there to not understand about my choice to purchase something with a gluten-free label and why should it be dismissed or undermined?
Not only is there misinformation out there, as harmless as it might seem, there is also very real and harmful shaming happening to people who live gluten-free for a medical reason. I feel that I must also note that I strongly believe that if someone doesn't have celiac disease but they choose to live a gluten-free life, that that is their right. However, it becomes a problem when gluten-free diets are recognized only as a matter of choice and trend rather than the prescriptions that they are for people like me. And while the bad information out there does make life more difficult for someone with celiac, I also think that these issues highlight all that there is to be grateful for.
As always I am grateful every day for my family and friends, my boyfriend and his friends and family, my doctors, and my colleagues who listen to the facts, who support me wholeheartedly and do not contribute to both the culture of shaming and misinformation. To them I cannot express my love and thanks enough. There are also so many wonderful restaurants that understand our experiences and provide 100 percent safe havens for people with celiac disease to go out and be normal. And I can't thank them enough either. In particular, I want to thank Senza Gluten here in NYC for always making me feel like family when I walk through the doors. This type of community support is indescribable and there really is so much to be grateful for with this disease. It is amazing that we can live such healthy and fulfilling lives without medication. However, we have only just begun and a proper education must take place. Knowledge is power.
I welcome you to share your thoughts and your journey with celiac disease below or by contacting me at hannah.crane@nyu.edu.
***Disclaimer: All opinions presented are my own. I was not paid to endorse any party mentioned in this article. ***