Unfortunately, your diagnosis and medical need to be gluten free isn't an automatic guarantee that everyone in your life will be a part of your Celiac Support System. Not everyone is going to understand, not everyone is going to care, and not everyone is going to be willing to speak up for you. While this is tough to accept, it is necessary, and allows you to focus on how truly special those people are that are willing to help you with your fight against gluten.
In honor of Celiac Awareness Month and a recent negative turned positive experience, I want to share a bit more about my own experiences of theseclusion of Celiac and the importance of a support system.
I was diagnosed with Celiac in 2012. Three years later, I can finally say, I've got a solid support system, but that wasn't always the case. It has taken time and a lot of my own advocating for some people in my life to accept and embrace the fact that Celiac is something I will always have and needs to be taken seriously. For those of you with people who "don't get it" in your life, be patient and remember Celiac does not only effect you at times, but also others in your life and they may be adjusting as well.
In order to build your support system, you have to be prepared to explain and educate. Knowledge IS power. Ignorance or unawareness is often the main reason people do not understand the severity of Celiac and the seriousness of Cross Contamination. Take the time to explain this to others, and relate it to something concrete that they will understand, or use a visual that even an amount of gluten smaller than your fingernail can make you sick. Be prepared to explain it multiple times, those on your support system may forget, or make mistakes, because they are not living Team Gluten Free on a daily basis so be understanding with them as well if they slip up. (Like the time my mom thought wheat free meant gluten free and bought me cookies that I ate...and got extremely sick from. We laugh now, BUT, always be on guard yourself, and check the ingredient labels of something and remind others what you can and can not eat!)
Overtime, my Celiac Support System has grown, what started out as just my mom and dad has grown into a mix of family members, friends, bloggers, my boyfriend, and even some members of his family! The road here, has not been easy, and has been filled with more bumps than I would have liked but something that happened yesterday lets me know how far my Celiac Support System has grown and come since my diagnosis three years ago, and makes my heart happier than ever.
Care to hear the whole story? Click read more below
Slowly but surely, my support system, as they learned, began to grow. I now have THREE houses I can SAFELY eat at, TWO hands I can use to count my Celiac Support System (who know how to read labels for me!), and ONE very special blogger friend, Kaila at Gluten Free Life 24/7 who constantly inspires me to not let my diagnosis determine what I can and cannot do. (I actually even met her in person, a few weeks ago, check that experience outhere)
SO, I AM AT A VERY POSITIVE PLACE IN MY LIFE, and finally felt like I had made SO much progress with my Celiac, and not letting it hold me back from living my life, until yesterday.
Family dinner, a party of fifteen, all in celebration of my boyfriend's Papa's birthday at their local family favorite. An establishment his entire family has been going to for years....that doesn't have a gluten free menu and that I have actually eaten at and gotten sick from beforehand...
I felt anxious just thinking about going to the restaurant, BUT I couldn't avoid it, and I wanted to be a part of the celebration. Since I live eight hours away from my own family, over the last five years, I have been welcomed into my boyfriend's family as not merely a guest, but an actual family member. (I get my own Easter basket and invitation to everything!) They are my second family, and I love them just as I love my own, so I needed to somehow finagle my way into the celebration safely...
Because of Kaila, I felt inspired to try and ACTUALLY eat there. Despite getting sick after eating there, I wasn't convinced it was the restaurant that made me ill, but it could have been myIBS or something I ate at his house that weekend I visited. SO, since Kaila is a bit of a "going out to eat expert" with Celiac and multiple food allergies, I felt that "if Kaila can do it, so can I!" I sent her a message, and asked for any advice or input on what I should say when I call.
After a list of questions to ask and points to make from Kaila, I dialed the number and anxiously waited. After being put on hold, I was transferred to another wait staff member who could better suit the needs of my phone call. The conversation did not go as I had planned. I am a VERY bubbly person, and genuine over the phone...always asking how the other person is doing and am extremely courteous. I was instead met with short and stern answers, and an overall "matter of fact" attitude. I wasn't guaranteed they would "take extra precautions" or "they have a knowledgeable kitchen and wait staff" on cross contamination. They didn't even know what cross contamination or celiac meant! I hung up the phone with an uneasy feeling. I couldn't stop thinking about it all day Friday....and by the time Saturday rolled around, I knew in my head I couldn't eat there. My general rule of thumb is "When in doubt, go with out" and I had A LOT of doubts.
SO, I went with Plan B, B.Y.O.F. - bring your own food, something I've gotten so accustomed to doing, I'm actually a pro at replicating whatever dish the restaurant has that I want to eat. On tonight's menu was going to be a surf and turf of salmon and roast beef. I spent the morning prepping happily, waiting to be able to call the establishment again and ask permission to bring my own food. This is something I always do out of courtesy and respect to the restaurant so it is not a surprise when I arrive.
I have NEVER been told no I was not allowed to bring my own food, until yesterday. I will not go into details too much, but after explaining I was the same individual on the phone yesterday, and that I didn't feel comfortable eating there due to the risk of cross contamination since we were dining at such a popular time and in a big party (two Celiac no-no's typically) I asked if I could bring my own food. I was told "absolutely not," received some other negative commentary as well, and a final closing remark of "I hope you can find something to eat on our menu." I hung up the phone and sobbed hysterically in my car....I couldn't eat their food, I couldn't bring my own, I was about to sit and watch fifteen other people eat their food in front of me...the Seclusion of Celiac, an issue I thought I had overcome.
I called my parents and cried but from eight hours away they couldn't do much. So I decided to put my big girl pants on and just move forward, I would have to eat before hand. I went home and told my boyfriend, who was furious and said "if you can't eat there, then neither will I." While that didn't help the situation, his support and anger, showed he was in my corner and understood my feelings. He held me as I cried, and then picked up the phone to call his parents. I didn't even have to ask....A few years ago, he may not have been so brazen. A few years ago, he may have just left it at "I guess you have to eat here then." Not anymore, NOW, he is one of the BIGGEST parts of my support system, and advocates for me when my voice alone is not enough. We even did our first Celiac Walk together this year and he continues to find gluten free restaurants for us to test out!
I sat on the couch and listened proudly, while the situation at hand sucked, the fact that he was advocating for me, and making his family members known of my mistreatment, slowly made my tears stop. What happened next, made my heart swell with love and pride.
His dad called the restaurant, where he personally knows the owner and waitstaff and advocated FOR me, for MY needs, and SERIOUSNESS of my Celiac. I am not his flesh and blood, yet there he was, on the phone CALLING in regards to my behalf, explaining my situation, and seeing IF they could safely accommodate my needs. A few phone calls later, a conversation with a separate waitress who actually caters for Celiacs all the time, and a Celiac Safe Meal for Amber was guaranteed. My heart jumped for joy, not over the fact that I was going to be able to eat with everyone, but rather, the fact that his dad stood up for me, understood why I felt so uncomfortable and upset and made my needs a priority at a place he is well known at.
From going from a man who said "what the heck is gluten free" to my very own advocate, I couldn't help but smother him with a huge hug outside the restaurant.
And while I still had my concerns going into the meal, the amount of love and support I had received from my boyfriend and his family that day, made me feel confident enough that no matter what obstacles Celiac was going to try and throw my way, I had people who loved and supported me and were willing to stick up for me. (As well as keep gluten free soy sauce in the house, cook my food on aluminum foil on the grill, and know to use separate utensils.)
AND as a side note - I type this post, the morning after, with NO gluten in my system - CELIAC WIN!
- Have you ever had to educate and advocate for yourself with others?
- IF you have Celiac or other allergies, do you have a support system?
- What would YOU have done in my shoes?
- Any comments or questions?