I attend a support group once a month for people with Celiac Sprue. I joined the group a year ago, after my first holiday season being gluten free left me frustrated, depressed, and feeling isolated. This group has become my rock, my greatest source of information, and sometimes the only thing that gets me through the month.
Last night, at our monthly support meeting we had a new woman to the group. She attended with her husband, who was there for moral support. Unlike myself and many Celiacs, this woman's symptoms came on incredibly suddenly and without any warning at all. You could tell just by looking at her that she feels so unwell. This woman is absolutely BROKEN by her new diagnosis and the difficulties she is having adjusting to her new diet, new lifestyle, and all of the new rules. She cried through most of the meeting, silently and introverted, but still crying. I looked at her earnestly and promised her that it gets easier and that when I joined a year ago I was in her shoes. But I left out the part about how it gets much harder before it gets easier.
Being told that all of your problems will be solved if you simply avoid ingesting gluten (the protein portion found in wheat, barley, and rye) seems like the simplest solution to some of the most difficult problems. For me, it was exhilarating. That's it?! Sign me up!
Then begins the long process of healing. Then begins the long process of getting better, getting sick again, finding out that you can't eat yet another thing, finding out that even lotion can make you sick. Then begins the long road of physical and emotional recovery. Then enters the masses of assholes with their idiotic comments.
I could write a whole book on Celiac Disease and what it's like to have it (in fact, I am attempting just that) but if I could impress just ONE thing on people who don't have the disease it would be to please have some respect and watch what you say. You may think it is an awful disease or seems miserable or hopeless but imagine how we feel! One of the most devastating parts of the disease is the isolation that almost all of us feel. It is simply not safe for us to go to restaurants, eat at other people's homes, or even do simple activities that others take for granted. Most Celiacs struggle with some sort of emotional journey they have to go on to come to terms with the fact that they ARE different from everybody else and their lives are changed forever.
With that in mind, here are the top 5 things you should never say to a Celiac:
1) " Oh my God, that is so awful, I could NEVER live with that, if I had that I would seriously kill myself."
Maybe you should just go ahead and do that for me anyway, k thanks, bye.
2) "You are so lucky, I wish I couldn't eat anything!"
Umm, fuck you, no you don't.
3) "Look, I made you cookies!"
I hesitate to add this, because it is not in any way mean spirited. However, the number one thing that the Celiacs I talk to say they get frustrated with its people trying to accommodate them. It takes us years to figure out and determine exactly what we can and can't eat, what sources we can purchase foods from, what types of cooking utensils are safe for us - you cannot possibly accommodate us by reading one article you Googled on the disease. Your very thoughtful concoction is most like unsafe and puts us in an AWFUL conundrum - don't accept it and look like an asshole, accept it and throw it away, wasting food and leading you to believe that we ate it and you should cook it for us again in the future or accept it, eat it, and possibly get violently ill for another 6 weeks, setting our recovery processes back even further. If you want to do something thoughtful, get us a non-food related item. You can find out what our favorite beverage is, get us flowers or how about a massage gift certificate? We are stressed out.
4) " I'm sure you can eat just a little bit. One little bite can't hurt you. I cheat on my diet all the time."
NO!!! A lot of Celiacs, including myself, are EXTREMELY sensitive to even minute amounts of gluten. Meaning we can get sick even if you cook us a piece of chicken in a pan that you made a grilled cheese sandwich in earlier, even if you washed it. We can get sick from toasting our gluten free bread in your toaster. I got sick for weeks after using mascara that had wheat in it last year. No, we cannot cheat! And while not all Celiacs are at the same sensitivity level, we all risk the same effects if we cheat - how do you spell diabetes and cancer? Is that worth the risk? Never.
5) "Can't you just take a pill or have a surgery or something?"
No. There are no medications, no vaccines and no cures for this disease. Why, you ask? Because doctors get most of their education from pharmaceutical companies. Scientists get most of their research money from - you guessed it - pharmaceutical companies. Drugs make the world go round. The only treatment for this disease is a diet change. Pharmaceutical companies have not found a way to profit from this, therefore doctors know very little about it, the public is grossly misinformed about it, and scientists don't have the funding to do more research for a cure. When Pfizer starts manufacturing rice pasta, then we may get somewhere. How do you like them gluten free apples?
That is my rant for now. I would like to reserve the right to add to this list. And yes, every single thing on here has been said to me, many, many times. If you really want to make a Celiac feel comfortable and welcome, here are the best things you can do:
1) Show interest in the disease, but privately. Don't ask questions loudly in a big group of people at a social gathering. Instant. Panic. Attack. But do call us, email us, take us aside and express genuine interest in understanding more. Unless you don't care, then don't pretend, just go away and eat your damn cookies in peace.
2) Don't try to accommodate us. Don't pick a restaurant that you heard has gluten free menu, don't cook a meal or dish for us. Just assume and know that we are going to eat before we go to a social event or bring our own food. IF you do feel the desperate need and desire to go out of your way, the best thing to do is buy some sort of packaged gluten free product and don't open it. HOWEVER, almost all Celiacs have other food allergies and intolerances as well so you are really risking wasting your money on something we won't be able to eat.
3)Try to socialize with us in situations that make us comfortable - allow us to host the party at our homes. Let us pick the activity we want to do (movies are a favorite of mine because I am sitting in a quiet dark room where nobody can stare at me or ask me a million questions).
4) Leave us alone. Some Celiacs, most in fact, require a period of time to adjust to this new lifestyle. We are busy throwing out our beloved lipsticks, replacing our entire food supply and tossing out all of our kitchen equipment. This is so taxing mentally, physically, emotionally, and financially. So please forgive us if we don't have the energy for a night on the town or if we are too scared to take that trip to Tahoe with you. We will get there eventually. You can let us know you miss us and that you are ready and waiting to hang out. Just don't press the issue too much to the point that we feel like we are also disappointing all of our friends on top of everything else that we are dealing with!
5) The coolest thing that a lot of my friends do is show me they are thinking of me. On a random Wednesday afternoon I will frequently receive a text picture from somebody at a store somewhere of some gluten free product letting me know that 'hey, Winco carries gluten free pasta now so you don't have to pay $6 for a box of spaghetti anymore!' This is such a thoughtful thing, even when we have already seen the product, restaurant, store, article, etc. it lets us know that you are thinking about our well being and caring for and about us, even when you are not directly being affected by our presence. It lets us know that you acknowledge that we have this thing but that it's something we can deal with. It also helps enforce the fact in our minds that Celiac awareness IS becoming more widespread and that this condition will, in time, become easier to live with.
For all of you who read this far, Celiacs, friends and family of Celiacs, or those who have no idea what I'm talking about but are going to Google Celiac Disease as soon as you're done reading this, I truly appreciate it.