I haven’t blogged about going gluten free since I actually bit that bullet over 3 years ago. That anniversary is not one I celebrate. It represents a time of mourning, a total loss of the life I once knew. I actually went into the field of nutrition for the same reason that many others do, because I really loved food (note the past tense). Some of my favorite foods were veritable gluten fests – pasta, pizza, chicken parmesan. I always opted for the healthier versions of those foods, and I enjoyed them responsibly, but I truly LOVED them. They were a treat and having them always gave me joy. Not being able to enjoy them is painful and not at all funny.
Friends and family still find it hard to believe that I no longer eat my favorite candy (Twizzlers) or nosh on my beloved Papa Gino’s pizza. And, they find it harder to believe that I’m unable to eat anything they serve. At parties and family gatherings I live with the hunger and the virtual torture of everyone around me “eewwwing” and “ahhhing” over the delicious treats… Mom’s spaghetti and meatballs, my Mother-In-Law’s eggplant parmesan, and every birthday cake at every birthday party (some 10+ a year, but who’s counting?). “Oh you can’t eat this? Really?” “Really” is all I can mutter in response. Most foods contain gluten in some form since gluten is in wheat (the base for flour), oats, barley and rye. I tend to bring my own snacks, so I don’t literally starve, and I keep my sobbing to a minimum as I do my best to avoid the delicious smells wafting around me. I am trying to make light of this, as I often do. But, believe me there is nothing funny about HAVING to avoid gluten.
Imagine never again enjoying the sweet simplicity of a fresh baked roll, or the decadence of chocolate cake. Not being able to just grab a bagel at the office, or having to refuse a friend’s homemade blueberry muffins. Needing to read every label and scrutinize every bite. Does any of that sound funny to you?
Allow me to get a bit more graphic to really drive home this point. If I eat something that contains gluten in any form (i.e. a touch of flour, a bread crumb, a single stray oat) l have diarrhea within 15-30 minutes. Sometimes it’s accompanied by nausea, bloating, and sores at the corner of my mouth. Would it scare you if you knew that something in food could damage your entire digestive tract if you ate just a morsel? That is the fear I live with every time I eat outside of my house. And, the residual damage of having even a little gluten causes me days of fatigue. It is as though my body has been poisoned and it then must take time to recover. Some research shows that the damage from gluten can actually last for months. It’s not funny. It’s a disease (Celiac) and it’s very debilitating. Coming off a weekend trip to Cape Cod where I ate only 2 meals at restaurants, the lack of humor is especially fresh in my mind. At both meals I stressed to the servers that I could not have gluten, and I picked from just a few items on the menu that I knew to be naturally gluten free, yet after each meal I had digestive upsets that sent me running back to the hotel room. I wasn’t laughing.
I wasn’t going to share any of this with the world, because it’s embarrassing and somewhat hard to talk about. But, then I just happened to be watching TV as I did the dishes last night. The show Two Broke Girls came on TV and although I didn’t enjoy the show when I watched it the week before I left it on as background distraction. The show is a comedy featuring two waitresses; one is a snarky, seasoned server, the other, a spoiled, rich girl who has never worked in her life. The spoiled girl says to the snarky waitress, “one of my tables is asking if we have anything that is gluten free. What should I tell them?” The snarky and overtly ignorant waitress responds, “tell them ‘you’re not allergic to gluten, you’re just masking an eating disorder.’” The studio audience roared with laughter. I dropped my dish brush and immediately turned off the TV.
At first I thought turning off the show was the only retaliation I had for such ignorance and cruelty, but then I remembered that education is the best remedy, and thus this post. As you can probably tell after more than three years of trying to live gluten free it is still very, very difficult and I am totally stunned by how hard it is to protect myself not just from gluten, but from the ignorance and lack of compassion of some people. Apparently many believe that avoiding gluten is a fad, a weight loss gimmick, or even some form of eating disorder. This certainly could be true for some people, but those are surely the minority. Given how incredibly difficult it is to avoid gluten, which as I previously alluded to is in virtually all prepared foods, it is odd to me that anyone would believe that avoiding it is for reasons of vanity alone. I’m quite certain that the many individuals with Celiac disease and the many more with gluten intolerance would tell you that if they had a choice they would not go out of their way to make a fuss about avoiding gluten in their meals. It is a medical necessity! Would you laugh at a diabetic if they told you that they couldn’t eat a piece of cake because it could eventually cause them to go blind? Would you carelessly add sugar to their meal? I certainly hope not. The same consideration and understanding needs to be taken for anyone avoiding gluten.
I leave you with some final questions that I think everyone should be asking themselves. Why are some people (especially children) so harmed by gluten? Is it possible that those who are so sensitive to its effects are just harbingers to gluten’s long term dangers? If that is the case, then maybe those of us who are so diligently avoiding gluten will have the last laugh in the end, but I doubt any of us really want that.
To show your support for those trying desperately to avoid gluten for medical reasons, please support Gluten Free food labeling
6 thoughts on “Gluten Free is NOT Funny”
Wow. I’ve never heard of that show before but that’s ridiculous. The ignorance about gluten is pretty astounding but I think the good news is that it’ll only die down from now on–it’s just getting to be too mainstream. Unfortunately some people are treating the gluten free lifestyle as a fad but luckily there is a large enough of a population of actual Celiac’s disease sufferers to back up the facts: that gluten isn’t something to be laughed about or pushed to the side. Nice post, great blog by the way.
Thanks for your nice comments. I really thought that going gluten free had become much more mainstream too which is why I am especially stunned lately by how insensitive people are about the topic.
I was in a cafe last Saturday and there was a gluten free brownie which my boyfriend offered to buy me. We sat and we waited and noticed a woman on the other side of the cafe pushing her piece of gluten free brownie around with a fork. I watched as she leant over to the counter and asked “Is this brownie supposed to be like this? It’s all soft and separated.” to which the lady behind the counter replied “Oh, its gluten free.” I watched in amazement as the woman instantly dropped her fork and wrinkled her nose in disgust at the realistaion she was not eating ‘real’ brownie. She looked over and caught me staring at her and said “Oh, don’t have it. It’s disgusting.”
I didn’t say anything but I should have. I should have told her it was the only option I could eat there and the label clearly said it was gluten free. Its people like her who are really gluten intolerant.
Rachel – People like that woman just make me laugh. It must be nice to live in your own little world where a soft brownie is “disgusting”. I have people turn their noses up at what I’m eating all the time because it seems weird to them. Yet, rarely, if ever, does it actually cross their minds that I HAVE to eat that way. That maybe they should just be thanking their lucky stars that they have the luxury of choosing to eat “real” food, and that perhaps they should be a little more compassionate about what it must be like to not have a choice.
But, I don’t say anything to those types of people. Someday I may get braver about raising a fuss, but for the most part I’ve just decided that some people just won’t get it until they absolutely have to. And, seriously, the way things are going with gluten intolerance – these people who are so judgmental about it are going to have a rude awakening.
Thank you for your blog. today is my first day of finding blogs online about Coeliac. Nice to know I am not the only person in the world with it that finds it so debilitating. My mood changes when I get gluten, then the pain starts and I had not realised but it probably takes me a couple of months to get over it as well. See I have Multiple Chemical Sensitivity as well so some symptoms overlap. I also find other people’s reactions very tiring and as I stated on another blog I have actually been abused for telling people that soy milk can have gluten in it, they put malt in it to make it taste nicer, when I have asked about the soy milk for a coffee when out and about. I also get looks, that spread to my husband as if to say, “oh my goodness how can you stand her?” So have walked away from some places on principle due to how I have been treated and will tell as many people as possible about the place. Most know nothing about cross contamination, as I have been caught out with that one so often. My husband fears that I will get gluten more than me at times as hunger really takes over for me. We usually carry our own food as we have car fridges, best thing a coeliac can have. I am also off dairy, and can only bear very little fruit due to fructose intolerance. My dr told me to lose weight last week, it just sent me into the depths of despair as I thought, what on earth can I eat??? What can I cut out? I find I get hungry so easy, but can only eat small amounts. I have a shocking sweet tooth and have spoken to other Coeliacs who are the same. Sadly I have found family and friends the worst when it comes to understanding, eg. I am supposed to be so grateful when at birthday parties someone throws me a packet of gluten free biscuits while they indulge in the gorgeous looking cake that gets cut……and I mean throws at me!! or the pitying look and “so sorry I didn’t think of you so I have nothing g/f as I didn’t know what to get you”. I think….well why didn’t you ask me????? But to be honest I am just pleased to get out and get home to my g/f food and can have what I want!!! I am rapidly getting to the point where I will be saying something or just walking out as I deserve to be treated better, if you could see what we have, as you do with someone with advanced cancer, I know I would be treated differently. I was in my 40’s when diagnosed and yep, there was anger, grief, frustration, finding others who tried to understand and help, and thank God I have married a wonderful man who is totally supportive and I am eternally grateful for him. yep….I have Coeliac, …… so to the rest of the world who wants to fuss over it negatively…….move on and get over it and just stay away from me!!! :-)))))
That must be especially hard to have to avoid fruit and dairy too. I often live on fruit when I am away from home. And, yes, parties are absolutely the worst. It has taken many years for my family to finally start thinking about what they can serve me at parties. But, mostly I just focus on bringing my own food everywhere. I try to be grateful for what I can have and remind myself that nothing tastes as good as being healthy feels.