- I love these. I called them wishing flowers when I was a kid. We used to close our eyes, make a wish and blow. If all the seeds blew off, your wish would come true.
September has always felt like a new beginning to me. Maybe it’s old memories of getting back to school, or the end of Summer bringing the new start of Fall. Whatever it is, it brings a sense of starting again, a chance for renewal, which I absolutely love. Well, I’m going to take liberties with this feeling of renewal right here. As many of you already know, my dedication to bringing understanding and information to the celiac community or anyone struggling with their health has become a life mission for me. While I’ve been doing just that at my bakery every day and working to finish up my book; with such massive undertakings, sadly this blog has been neglected. No Longer. There have been so many things I’ve wanted to share over the past few months with you. Stories about some amazing people I’ve had the pleasure of meeting at the bakery, recipes I’ve wanted to share, and oh yeah my new TROOP! I recently welcomed a golden retriever puppy named Brooklyn Magoo to my brood. (Pics soon). But before I spill the beans on all these happenings I wanted to kick of September with a story of strength and starting fresh.
About a week ago I was out in the Hamptons by the beach for some rare down time. Even more rare was the opportunity to do dinner with my sister (who is also celiac), her husband and my niece and nephew. We went to an uber cool place that in the past had done ok by my sister and I, but this was during the day. For a girl with Celiac Disease, going to a restaurant in the middle of the summer, by the beach, on a super busy weekend night can be nothing but scary. Belittling. Humbling. Scary. Regardless, we all sat down, had a bit of wine and my sister deferred to me to do the ordering.
For us, I picked a salad with absolutely no dressing and the branzino with roasted tomatoes. We had this before and had no trouble. I could see the waiter was busy and distracted as he took the other orders at the table. When he came to me I told him: “I am a severe celiac and cannot have any gluten and absolutely no dairy.” I always make sure to look them straight in the eye and follow up with this statement: “I don’t have an allergy and I’m not on a diet. I have a disease and if there is gluten in this dish I will wind up on the floor, right here in the restaurant.” I always say it very nicely, but you can tell I’m dead serious. I then said to him to please check with the chef if it would be ok to do PLAIN olive oil and lemon for dressing. He scribbled some words down on his pad and said, “That dish is fine” I replied “Do you mind just checking with the chef? I’d appreciate it.” He said “fine”. I could see he was a bit rushed so I stopped him before he fled away. “Please let me know if it’s too busy to accommodate me, it’s no problem really”. He scurried away, and when he returned a minute later he said it would be fine.
Minutes later a salad was placed in front of me as shiny as a new quarter. I looked at the supposedly plain salad and immediately knew that was not the case. Without hesitation I sent it back and my boyfriend went to get the manager for me. A very nice woman came to the table and when I explained the story about my disease she stated her grandmother had celiac and she totally got it. I said “I dont mean to be a pain but I will be extremely ill. It’s not a diet for me.” The waiter then stated that ” about half the people that come in now request gluten free so not everyone can be celiac, I think it gets the kitchen confused”. She assured me she would take care of it. This statement made me so ill of course. For all those choosing gluten free to be cute or in “fad” or whatever, you are not making it any easier for those with an actual disease! But ok, on with the story. Salad course complete, now on to the main.
The main course finally arrived and my sister took one bite and told me not to eat it. She said she could taste something not right. For my sister to speak up in this instance is unlikely. She usually just eats it and suffers for weeks. Of course I was already suspect of everything, but my sister had just confirmed it. Was this really happening again?
Now here’s the transformative moment folks: instead of calling the waiter over and insisting they prepare it again, or getting upset, or eating it and suffering, I put my fork down and pushed the dish away from me. When the waiter came over and asked if it everything was ok, a sense of calm came over me. I wasn’t going to feel bad, or get mad, or try and make him understand something he really had no desire to, I was going to simply and honestly state what I felt. I looked him straight in the eyes and said without apologizing first or after, “I’m not going to eat it. I don’t trust it and I refuse to be ill”.
The waiter was taken aback. He said “the chef said it was fine”. I said, “I’m sure he did his best but I will not be eating it, thank you.” As I sat there and the manager came over as well I kept my story the same. Brief, calm, pointed and at peace. I sat there and watched everyone eat and enjoyed the conversation and realized how empowered I felt. In this situation I had always apologized or felt bad or felt like a pain but this time I didn’t. I felt like I honored myself and my body in a way that it needed to be. So much of this disease renders you powerless at times. The autoimmune disease, as celiac is, is the one in charge every day. So taking back a moment of power was a moment that lasted and lasted. I had a lovely evening with my family that night, I wasn’t sick from anything that I might have eaten and I walked out of the restaurant feeling proud.
At this time of new beginnings I ask you to take your power back as well and stop apologizing for the disease you did not ask for. Honoring yourself and your health tastes much better than anything you could ever possibly eat.
I will be speaking with you soon.
Too right, I do it every time even if people sit there uncomfortable with them eating and me watching, I don’t really care or mind. I would rather starve myself than ever, ever feel sick. Thank you for sharing x
Thank you, Jennifer. I needed to hear that. I was raised by my mother to be kind and sweet, the disease to please. And there is no place for that after a Celiac diagnosis. I now have to ask myself instead of, Am I being polite? the new question is AM I being vigilant enough? Am I looking out for my health and that of the baby I am growing inside of me right now, as I am typing this 8 months pregnant. I know the answer is to cook my own food and stop eating out, being prepared and asking tough questions, but it’s hard! I thank you for your blog and your activism. It isn’t easy, but we have to be our own best advocates
Thank you for a great post. Three years post diagnosis, I still struggle to make my family understand I have an autoimmune disease let alone restaurants. Very grateful for a boyfriend who chose to go gluten free with me and advocates in restaurants very firmly that there cannot be gluten in the food.
I had my 17 year old daughter read this post because as she finds herself in these types of situations – alone, in a group, or on a date – I wanted her to see the exact words you used. Thank goodness she too has a spunky personality – still, I know it helps to know even someone like you can find themselves dealing with something like this. Please know that what you write here makes an impact on people!
I admire the passion you have approached the Celiac diagnosis and advocacy with, and the way you’re turning a negative into a positive for so many people. Since diagnosis six months ago, I’ve been very committed to being gluten free (looking up absolutely everything, emails, phone calls, checking things that probably make people think I’m crazy!), and saw TTG scores drop dramatically in the first three months. But I’ve really stuck to eating at places where they know me and I know the cross-contamination procedures. The hard part is figuring out what to tell the server, how to get the message across. The first trip I take as a Celiac is the one that’s a big unknown for sure! And I know I’ll have stories just like this one – thanks for sharing the story, it’s exactly how I hope all people with Celiac react!
I greatly appreciate your using your celebrity to educate the public about celiac, particularly giving the strange trend in recent years to ridicule health issues (Jeremy Piven is still a punchline that needs no explanation). If you ever need to generate emotions of extreme anger and disgust for a role, just listen to Adam Corolla’s podcasts where he and his lackey Drew Pinsky (do you deserve the title “dr.” when you are so ignorant about a disease affecting 1% of the population?) routinely denigrate gluten free diets…As for your dining experience, I hope your story encourages gf diners to prepare a script for such encounters so as to maintain a feeling of power and dignity. That said, I personally would never expect a restaurant to take the responsibility of preparing a celiac safe meal for me. As a long-time vegan (well before I was diagnosed celiac), I would never go to a restaurant without calling ahead to make sure a vegan meal was available — given fair warning, I find that chefs are happy to accomodate — or accept I might not eat if it is a last minute meal….(I also always carry a snack…). But since my diagnosis, I have not eaten out. There are no gf restaurant in my town, and I would never trust even the most well-meaning staff to meet the high standards of celiac safety. You have to know as a cook yourself that to ask a kitchen — at primetime, no less — to stop and dedicate an entire prep area, cooking implements and cook to make your meal is crazy/presumptuous/unlikely. And even if the food were properly prepared, how could you trust the server to not place your salad next to one with croutons that could slip off, or to wash her hands after she refilled another tables bread basket then handled your plate? I do not know how restaurants in England, Australia and Italy where gf meals are a regular feature non-gf restaurants handle these basic but crucial sanitation and staff education issues, but until we find a way to protect celiacs here, I take responsibility for myself. Restaurants here are just starting to offer gf alternatives, but really, how are you going to make a gf pizza in a flour-filled kitchen? For celiacs who have to eat out regularly at regular restaurants, I think you are quite justified in calling ahead (if possible) and suggesting you will bring in your own meal so your family or business associates can “enjoy that fine establishment without burdening the kitchen with your impossible requirements.” Because as you have said, I am not willing to be sick just to be polite…but nor should you have to become a hermit.
Thank you sooo sooo much for the Gluten free recipes. This is very eitcixng for ppl like me who cannot eat chappati, puri, upma, sheera, and many many things made from maida, rawa, wheat flour !! Can this flour be used to make Samosas?