Sticking up for myself

Celiac Disease, Health May 4, 2015

In March, I posted about why a celiac should always ask about food at a restaurant, even if you have been there a million times. Things change, and your health is important.

And if I was with you at a restaurant and I saw that you weren’t being taken seriously, I would have no problem speaking up for you. I would even get mad on your behalf. I might even get downright feisty if I was sticking up for you.

But me? Ugh, it’s still so hard for me to stick up for myself. Why is that?

Disneyland at night

Last month we took the kids to Disneyland. We were there all day and had a great time, but we stayed for one too many rides and ended up stuck in the tram line in the pouring rain trying to get back to our car. So at 9:30pm, we walked dead tired and soaking wet into a Chipotle. One of my “safe spots” that pretty much always does gluten-free right.

Except this one didn’t. I had to ask the girl to please change her gloves and use new spoons, and she was pretty nonchalant about it. She didn’t wash her hands, and she didn’t wipe the counter. I have been there enough times to know the drill she was supposed to be following…and she was only doing it halfway.

I knew eating the food was going to be risky. Stupid even. But I was tired and wet and just didn’t want to make a fuss.

So I ate it.

The brain tingling started immediately, and I knew I had made a big mistake. I paid for my wimpy-ness for weeks.

I got glutened, and it was all my fault.

If I had been with you, and she tried to make your food in that way, I would have spoken up for you. So why didn’t I speak up for myself? I’ve had a hard time with this since I was diagnosed, but I thought I was over worrying about putting people out. Apparently not.

Lesson learned. I’ll try to be stronger next time.

If you have celiac disease, I would love to hear some tips or words of encouragement. Or feel free to knock me upside the head, that would work too.

You Might Also Like

  • Adele May 4, 2015 at 11:41 pm

    because I know you know that I, at times, have been in epipen situations for not asking I’m going to let you in on what finally helped me. I found someone who could be that voice in my head, made a deal that if I did something stupid I would tell them and that they could yell, scream, and tell me the truth about how stupid I was. I couldn’t do it for myself, but the thought of a lecture from someone I respect did wonders for me not backing off and always (most times) remembering to ask.

  • holly May 5, 2015 at 1:11 pm

    I have celiac disease, I’m always bringing my own lunch to work & not able to eat the work snacks like donuts that everybody else can have, but that’s ok, its better not to be sick. I find it helpful to keep some gf granola bars in my purse for those situations where you can’t find any gf food. One time I met two girlfriends at an asian restaurant for supper and the servers had not even heard the word celiac before, so I sat there and ate nothing but enjoyed their company. I’d say next time, even stop at a grocery store and pick up some fruit or a salad, its not worth getting sick. And keep some snacks in your purse, they come in handy.

  • Tracie May 5, 2015 at 2:08 pm

    I also have Celiac and really struggle with this too. Being assertive does not come naturally to me. I hate feeling like I am being difficult, making things inconvenient, etc. even though I know I will suffer as a result of not speaking up. I can feel the eye rolls at Chipotle when there is already a long line of hungry people behind me who are upset about the extra time it takes to make my order. I think part of it is a personality thing too. Sitting in a restaurant watching other people eat is hard. I hate feeling different or singled out. My words of encouragement would be that you are not alone! But I’m also interested in hearing other advice people might offer on how to be more assertive in these situations.

  • Traci May 6, 2015 at 3:33 am

    Celiac has been my life for over 6 years when I was hospitalized with pancreas concerns and liver problems. I love cooking, eating, and trying different types of foods. It was hard for me to eat out and go to BBQ’s but over the years I learned to speak up.
    At first I would avoid everything because I didn’t want others to feel that they had accomodate for me. I would even eat at places I knew weren’t GF and order the closest thing I could, not a good idea. I quickly figured out that I had to start doing things differently to stay healthy.
    Now when I go to restaurants I ask to talk to a manager or cook and when I go to BBQ’s or family/friend’s event I make something to bring that I know I can eat and make sure it’s one of the first things people serve from.
    It really boils down to how we feel about ourselves. I know that I’m worth a healthy life and I will have it. I enjoy my life and plan to be alive to meet my grandchildren. It is that important to me to eat GF.
    Honestly talking to managers and having a voice helps educate others on Celiac disease.
    P.S.
    There are apps to find gluten free restaurants with GPS to locate places to eat closest to you. Users can post and leave comments on experience as to help other GF friends.
    There are also grocery book guides that can help you find GF products in stores by looking under general headiheadings. It will list any brands that certify their products GF.

  • Robyn May 6, 2015 at 4:38 am

    My daughter was diagnosed 18 moths ago. I suspect it in myself and dropped gluten before I was tested. My daughter had lost weight and muscle. She had sunken “allergy eyes” and really dry cracking skin and major anxiety. Being gf, she has gained height, weight, has bright eyes, rosey cheeks and softer skin and anxiety is gone!! I primarily make all snacks and meals, which honestly is quite stressful to keep up with (also live with other food intolerances). The loss of dining choices has been very difficult. We did not eat out often and really don’t eat fast food, but there are some places I miss and sometimes it is just the convenience and easiness that I miss. I am still learning to use my big girl voice when I order at restaurants and I try to call ahead. I admit I do not trust youth working in restaurants. I often ask to speak with a manager and if they seem uninformed, I choose not to stay. If they have understanding of gf AND cross contamination and are willing to oversee the making of our food, I find comfort in that. Traveling has been hard. I want an RV. I also carry a print out about what celiac is and what food needs to be avoided or how food needs to be made – it is written in English and Spanish. I am still learning and finding my voice. But all I have to do is look at my daughter and see where she is and how far we have come……and my voice gets stronger and more confident!!! It’s not easy……..and each day I continue to take another step…..

  • Natalie May 7, 2015 at 3:32 pm

    This post could have been written by me. I related to everything you said. I’m trying hard to be a better advocate for myself because my health is important, but still feel awkward at it sometimes. Eating out can be very frustrating and is so limiting. In my area people aren’t as knowledgeable about gf foods and cross contamination :/ Both my husband and best friend are great advocates for me when I’m too uncomfortable to find my voice. I’m a work in progress. Thanks for this post and knowing I’m not alone.