{For Celiac Awareness Month, I thought I would share one of my most popular posts on the subject. I originally published this after being gluten-free for only six months. Even though I’m more used to this way of life now, these challenges still get to me. And I’m still having dreams about social situations, in fact I had one last night. There were crumbs everywhere.}
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I had a dream last night. I was at a party and there was nothing for me to eat. It was a sit down dinner, so I couldn’t hide the fact that I wasn’t eating. As much as I tried to find something, I knew all the food was contaminated with gluten. I wondered out loud if this place had a gluten-free menu. Someone checked, they didn’t have one. Everyone around me was treating me like my condition was an annoyance. I ran out the front door feeling like an outsider.
Yes, this was a dream, but I think it was just an exaggeration of how I feel in social situations now. Remember, I was diagnosed with celiac disease in August so I have only been dealing with it for six months.
At first, I was relieved and even celebrated my diagnosis. It was so nice to finally have an answer for my illness. I asked you to celebrate with me and you did. Then in October, The Gluten Dude left a comment cautioning me about the long road ahead. Instead of congratulations, he wished me best of luck. His comment was in perfect timing actually, because it was about a month or so after my diagnosis that I realized just how hard this would be.
I’m not sure what I was expecting. Maybe I thought that eliminating bread and crackers and pasta wouldn’t be so bad. Many of my recipes were already gluten-free. Avoiding the foods that made me sick was easy, and it still is. I am never tempted to sneak a bit of a donut or a sip of a regular beer. There really is no temptation because I know what it would do to me. Maybe that’s why I thought it would be easy. After cleaning out our kitchen and making it a gluten-free zone, I have no problem cooking at home. Except for the occasional failed baking attempt (gluten-free baking is challenging!), eating at home has proven to be no problem.
What I didn’t anticipate was the difficulty in eating away from home. Whether it’s at a restaurant or a friend’s house, the risk for cross contamination is great. Ordering off the gluten-free menu does not guarantee safety. Taking a gluten-free cooking class made me sick for a week. Going to a baby shower and realizing that I could only eat the fruit made me feel uncomfortable. As much as I enjoy socializing, I don’t like to be the center of attention. It feels like celiac disease sometimes forces me into the spotlight as I have to explain my dietary restrictions to the waiter or explain why my plate is empty at a party. Add to that the fact that I am not avoiding gluten, but also dairy and all forms of oats while I heal.
And then there’s the fear. What if my food isn’t gluten-free? What if they didn’t prepare it in a separate pan? What if my friend used a wooden cutting board for this fruit? Do I risk it?
I really started to worry after getting sick from food at my parents house. Since my diagnosis, they have done everything to learn about celiac disease and make their kitchen safe for me. If I can’t eat safely at their house, where can I eat? Thankfully, they reevaluated their kitchen situation and the last time I ate there, I was perfectly fine. I am so grateful for everything they do to make sure we can still eat together, but it does point out that eating away from home is tricky. And if a friend or family member goes through the trouble to make me gluten-free food, I feel so guilty turning it down or telling them that it made me sick.
So this is my journey so far. I don’t have any pearls of wisdom just yet, except that it’s important to advocate for yourself and be vigilant about the food that you eat. As my friend Ashley pointed out, my celiac disease will in time help me to help others. I am thankful for that. But for now, it’s a difficult road. The Gluten Dude was right.
If you have celiac disease, would you leave a comment? How long have you been living with it? Do you have any advice? Do you relate to my fears? What do you find the most challenging? I would love to hear from you!
Thank you for sharing such an honest look into what it is really like. Hard as we try to always be positive, it’s a challenge! I teach gluten-free cooking classes, but am one of the few in my area teaching gluten-free classes that actually lives gluten-free. It worries me and your post has reinforced my concern.
THIS: “As much as I enjoy socializing, I don’t like to be the center of attention. It feels like celiac disease sometimes forces me into the spotlight as I have to explain my dietary restrictions to the waiter or explain why my plate is empty at a party.” <– Seriously, social eating is one of the hardest parts of GF eating. As a really non-high-maintenance girl, I don't like that spotlight and "I have to be needy/demanding about my food" feeling. Also, I'm thin, so I really hate when people (often loudly) point out at parties that my plate isn't very full or ask if I'm trying to lose weight and make me feel like I'm an extremist with an eating disorder. Blech. Luckily, I do have many friends and family members who have been champs about all of it! So I try to focus on that 🙂
Katilda, that is EXACTLY what happened the day before I originally wrote this post. Someone at a party made a comment about how I only had fruit on my plate (it was a brunch) and how that must be how I stay so skinny. Ugh!
I’ve been living with diagnosed celiac for about 31/2 years. I so feel your pain. Home is usually fine. Although my daughter and I have on occasion reacted to ” gluten free” products. Dining out doesn’t really seem worth the risk. I will say though that we have had some pretty good luck at Disneyland. We attended their Mothers Day Brunch last year and every dish had a little card with the allergens listed. No one in our group got sick. : ) It’s a challenge everyday. I have gotten pretty great at packing “picnics”, we take our own food when we travel, I even have a toaster oven for hotel rooms! Good thing we like road trips. I believe that we find our own way with this disease. It just takes some time and patience. Make sure you always have something safe, just in case.
Toni, it is such a relief to hear what you said about having a good experience at Disneyland. Our daughter is GF with about 6 different food allergies, and we are planning to spend a day at Disneyland this summer. I always appreciate hearing the good experiences people have had at different places. I can’t let my guard down, but it makes me feel a little better!
I have heard nothing but wonderful things about Disney.
I received my diagnosis in October 2011. The worst thing for me is work. They are always having pot lucks which I can’t eat. Even if I bring something that is gluten free, I end up with whatever I brought and maybe some fruit and vegetables ( hoping they’re not cross contaminated. It makes me feel so socially isolated. The last one they had was during lunchtime, so I just left and had my own lunch and returned at the end of it. Most people know I have celiac so they don’t really say anything, but it makes me feel so anti-social. I’ll retire in a couple of years so won’t have to deal with that for too much long.
Well written. This could’ve been about me, and I almost felt as if it was while reading. I’ve been gf for 7 months now and my family has all been fantastic, but I got sick this past weekend while visiting my parents house. It broke my heart to tell them since i know how careful they try to be. I used to cook in restaurants and I used to be bothered by “those picky people” when seeing an order that had, “hold this” or “____allergy” etc. so, many times i dont speak up in restaurants, I just order what I think is safe. I pay the price for that one more often than not. It is hard. Very hard, but if we don’t take care of ourselves, no one else will do it for us.
Thanks for sharing your story! I was diagnosed with Celiac Disease in 2010 and have been gluten free for 3 years. I still experience the same challenges that you have explained here. Two ways that I combat these challenges are to either eat before I go to a party or function, or I bring a dish/plate of food that I know that I can eat (because I prepared it myself). Most, if not all of my friends know by now that I am VERY strict with what I eat – they don’t even bother with trying to make me anything anymore 😉 It took about a year for them to realize how serious I am. It was hard to “train” them while still receiving hard glances or playful jabs and jokes about gluten ruling my life. Part of the struggle in “training” your friends and family is to finally become confident enough in yourself to no longer be bothered by voicing your dietary needs. There came a point in my life where I noticed that I didn’t feel embarrassed for saying “Sure! Let’s go out to eat tonight! I’ll be sure to eat before we leave” or “I’ll be sure to bring something I can eat!” Now… this doesn’t mean that I still don’t get annoyed that I can’t eat with them or have to watch them eat… I just don’t let it damage my feelings anymore. I’ve also began to notice that the more people I tell that I can’t have gluten, the majority of them say something like “Oh! I have a friend/family member/co-worker who can’t have gluten! That must be so hard. I really feel for you!” So in terms of speaking up about your dietary needs… I say go for it. Don’t be afraid to let everyone know why because chances are they either know someone who has the same lifestyle, THEY may even have the same lifestyle or you just might educate someone (like you do with your blog here). Spreading awareness is key and I think the more each of us share our own personal stories, the more people will actually listen. When things become personal – they leave a lasting impression. Keep your chin up and never give up on yourself! Think of yourself as a crusader for the Celiac Community!
I feel exactly the same. I started off thinking, “Oh, it’ll be fine, I prefer having friends over for dinner to going out anyway.” But then it turned out my friends don’t want to ONLY eat dinner at my house, and that even if they did it would start to get tiring having to host every get-together. In New York people tend to socialize by getting together for dinner or drinks, and when I got diagnosed a few months ago I decided to cut out alcohol while healing. That means I can’t go out for food OR for drinks, unless I’m that person who only orders Diet Coke (which is usually what happens). I hope that, with time, it’ll get easier…good luck to you and me and all of us!
what an important post. I have a wheat allergy but if I am not as sensitive to things like cross contamination, it’s a whole other level what you are confronted with. I have a few thoughts, first people need to take this seriously. A nut allergy they get but why is Celiac different? Because you don’t risk dying instantly? Because there’s so much “gluten free” they feel a fad? Second, I hope in time your fear is decreased that you scope things out and don’t worry what others will think.
It’s been six years since my diagnosis, and I think it’s actually getting more difficult to go out/eat around others. Now everyone thinks that they’re an expert, and also wants to talk ad nauseum about it. Usually I just want to eat my fruit in peace and talk about something (ANYTHING) else for a second! I try to tell myself that it’s all in the name of raising awareness, but really would prefer they just mind their own business. Great post!
Thank you for your post. I was diagnosed yesterday, and I am overwhelmed. A colleague recommended your blog, and it confirms my fears. I know there are a lot of things that need to change, and it is going to be a long road. The best thing I can do is educate myself…this is a start!
Wonderful article. It has been a difficult road at times for me. My challenge is discovering new foods and not having time to cook for myself. I found a great program at http://glutenfreefamily.net that has really helped me out. I can’t tell you how many foods that I have discovered using this. Best of luck and hang in there!