A few months ago I was having some tea with a friend at a restaurant uptown. There was a couple sitting quite close to us and was in a pretty heated debate. My friend and I tried not to notice, and continued our conversation to give them their space. At least until the gentleman leaned over and said “can I ask you ladies for your opinion on something?” As he proceeds to tell us about their discussion the woman looked horrified. You know, it was one of those man/woman debates that we have all had at times. Us being non bias (yeah right!) we sided with the lady and she suddenly became light-hearted and all smiles. We ladies must stick together! My friend and I finished our tea, said goodbye to the couple, and left.
A few weeks later I happened to be at an event and there sitting next to me was the same man. He introduced himself as the “crazy man” from the restaurant. Of course I remembered him I said and we laughed about that funny evening. Ok, now a third time! Just last week there he was again sitting a few seats away at a round table at a charity event I was attending. I arrived late due to work and quietly made my way to my seat as the presentation was already in progress. I nodded hello to this familiar face and sat quietly as food was being served. Good looking food too! Food of course that I wouldn’t dare touch. Everyone at this round table of 10 ate and noticed that I wasn’t. I usually say no to these preset dinner events because I don’t ever want to waste the food or money. Also sometimes the questions become way too tiring as to why I’m not eating. When ever I feel like it’s a bother to answer such questions and want to shy away from these events, I remember a certain Gluten Free book… Someone had bought me this oh so popular book. A nice gesture, but even the cover of this book irritated me. It was gimmicky and referred to a gluten free lifestyle as a diet and said something about weight loss as well!! Arrrggghh!!! One of the biggest problems with people not being diagnosed properly is because of this light attitude about celiac. It is an auto immune disease and should be treated as such, not a diet!
Before throwing this book out the window, I decided to look inside. I came across a chapter about what to do in social situations. It said to be ready to change the subject, at a party or dinner you should be ready with facts on your favorite sports team or a funny story. REALLY????????? I screamed when I read this and a few of the other antidotes! I thought to myself if we don’t talk about this disease in REAL way then we are going to keep up this charade of people suffering silently. If people don’t start demanding answers to their health questions then where does that leave us? Sick, alone, and telling nonsense stories and talking sports when really we feel sick to our stomachs? I thought to myself when I read this, I would never do that. But, do people really want to hear about your auto immune disease at a party? Probably not. There is a way to politely express yourself yet still educate someone in the process. And that’s exactly what happened that evening at the charity event.
Once the presentation was complete everyone finished their dinner and started to chat. A huge piece of filet mignon covered in sauce, potato graten and bread lay in front of me as I drank water in hopes of quenching my appetite. Didn’t quite work. The familiar man noticed I hadn’t touched a thing and made a comment. Something like “why aren’t you eating? …dieting?” I thought about a response for a second. I mean, he was across the table, did I want to shout out, “I HAVE AN AUTOIMMUNE DISEASE” across the table? Probably not. This table really didn’t seem like the forum for an autoimmune disease discussion. So I just said politely that I have a many food allergies. His eyes popped open, not expecting that answer and said “so does my wife, she is horrible.” I looked at him not caring anymore about the table and said “does she have celiac disease?” He said immediately “yes, and so does my son!” I always find people are happy to hear that someone else understands what this truly means. That was all I needed to start my conversation.
Before I knew it most of the table was talking about celiac and gluten. I found a couple at the table who knew of an organization of mothers with allergy ridden children. Another man knew nothing of this disease but was fascinated and wanted to learn more. My familiar friend went on about how his wife was undiagnosed and suffered for so long that he just believed that she was just lazy. He said that she was so bad at times that she would just pass out. He suggested we exchange numbers with the simple hopes that his wife and child would finally have someone to talk to who understood. I told him I would do more than commiserate with her. About a week after the function, I’m happy to say, I dropped off a care package full of some of my favorite baked goods! Chocolate chip cookies, rosemary olive oil bread, pancake mix, and banana pecan chocolate chip muffins. I expected nothing in return but maybe a happy email. What I did get was not only one happy email but several. I also received a picture of the family eating my cookies and smiling. Especially smiling, the seven year old. If you can help one person feel better, or just make them smile, by a cookie, a kind word or by understanding what they are going through, then your day is complete. So was I right in not sitting quietly and avoiding the question as to why I’m not eating and stating my disease for the table to hear? I say most certainly YES. Please do the same..
Ever Onward,
Jennifer Esposito
I wanted to share the beautiful letter and picture I received that in turn made MY day so much brighter too. Hope it puts a smile on your face also:
Hi! I just wanted to start by saying thank you. It is truly amazing the random coincidences in life. Not being able to eat gluten has been difficult but once I took it out of my life, it’s amazing how much better I feel. It was like I was always in a cloud, I was always exhausted and therefore moody and cranky. My joints always ached. My stomach was always bloated and uncomfortable. I was just told I was lazy.
I feel like a new person. I read your story online and realized so many have similar stories. Anyway tonight Andy and I gave our sons the treats you sent over. My younger son said , “mom pinch me I must be dreaming.” Andy and both my boys were devouring the treats, I had to remind them it was gluten free.
Your food is amazing. Please let us know how we can order. I have many friends with children who have a gluten allergy as well and know they would be very interested.
Again, I can’t thank you enough for going out of your way for the crazy couple who interrupted you during your dinner at Ciprianis:)
You are wonderful to have shared this with us. Jennifer’s Way is spectacular!!
Thank you,
Heather
I have to say, I loved this story. Thank you so much for sharing it with us!
Glad you were able to help that family out! I’m drooling over that care package.
My mom has celiac disease and social situations are discouraging for her as well. My tests came up negative, but I chose to go gluten free because I often had stomach problems and other symptoms – and I feel much better! When we explain why we aren’t eating or have different food, people sometimes seem understanding and interested, but most of the time, they just nod and seem like they want to move on and talk about something else. It’s frustrating, but we’ll keep trying to find ways to discuss it like you did at the charity event.
My mom and I even offer people some of our favorite goodies to show them that gluten free is not taste free, but they look at us like we’re handing them something radioactive. I don’t get it! Doctors and society as a whole need to get behind celiac disease and gluten-sensitivity as serious problems and not just another diet trend.
As you said, ever onward. We’ll keep on truckin’!
Happy Thanksgiving, and good luck with your bakery and everything else! My mom and I appreciate all that you’re doing to educate the public. And if we’re ever in NYC again, we’ll have to check out the bakery! I think there are a couple near us in the Philly area but we haven’t had a chance to visit them yet.
Hi Jennifer, i just want to let you know that your an angel for doing all that you do, I also was very sick, with alot of bone pain and muscle pain & weakness, which made it very difficult to walk or even get out of bed and fatigue, i felt useless to my daughter, and husband, I also dropped down to 101 lbs, at 48 years old , dx 3 yrs ago with Celiac, 10 years on synthroid for Hypothyroid, and now almost 2 years with Hashimoto’s and Thyroid nodules. went Dr. to Dr. but didn’t buy what they were telling me, i wasn’t a hypochondriac, anorexia, or depressed, maybe only because these so called doctors couldn’t get a clue, and there only help was to offer me pain meds, and others, which was frustrating, and i hated taking, Then later lead to 5 ulcers along with my dx of Celiac, I am the 7th out of 8 kids and I am the only Celiac, my sisters and brother, all have health issues, but none of them want to be tested, with is a shame. after what they saw me going though and how miserable i was you think that would want to. I love you’re blog and stories about familiar crazy man, and your right people think this is a diet and everybody wants to jump on the band wagon, all for the wrong reasons. HELLO !! it’s not a fad, but if it’s to get the word and out and educate people, like your blog, Celiac’s are not eating gluten free, because we want to and it’s the latest fad diet, it’s an auto-immune, so just because your giving us gluten free, doesn’t necessarily mean it’s gluten free unless it’s without cross-contamination, then it’s 100 % gluten free..someone once told me that i can if i can eat the fried chicken if i peeled of the skin, i had to set them straight, no clue what so ever. I always like to speak up when people ask me why I bring my own food and not eat what every body else is eating and I will tell the story 10x or 100 times, and doing that i find out that somebody they know, their friend, their neighbor or one of their relative has Celiac, communication is the key, and not being afraid to speak up.. i have no problem with that, even though my 17 year old daughter tells me ” Mom know body wants to hear your story about your celiac disease over and over ” . Yes they do ! as you can guess, my daughter doesn’t have celiac disease, yet.. Thank you Jennifer, love your recipes, that are also soy and dairy free. STAY WELL
THERESA
Just found your blog, Jennifer, and I can really relate to your stories. My daughter was diagnosed almost two years ago when she was 11 and social situations are certainly the hardest. Heck, sitting at a lunch table with a bunch of middle schoolers is a challenge every day. She just came in to the room the other night while I was watching the episode of Blue Bloods where you went undercover. She heard me gasp when you got stabbed with the needle and I had to explain that a favorite character was in danger. (I knew, however, that Danny would save you!) Anyway, I can’t wait to tell her that you also have Celiac Disease. It does help her to know that she is not alone!
Hi Jennifer, i just want to let you know that your an Angel for doing all that you do, I also was very sick, with alot of bone pain and muscle pain & weakness, which made it very difficult to walk or even get out of bed and alot fatigue, i felt useless to my daughter, and husband, I also dropped down to 101 lbs, at 48 years old , dx 3 yrs ago with Celiac, 10 years on synthroid for Hypothyroid, and now almost 2 years with Hashimoto’s and Thyroid nodules. went Dr. to Dr. but didn’t buy what they were telling me, i wasn’t a hypochondriac, anorexia, or depressed, maybe only because these so called doctors couldn’t get a clue, and there only help was to offer me pain meds, and others, which was frustrating, and i hated taking, Then later lead to 5 ulcers along with my dx of Celiac, I am the 7th out of 8 kids and I am the only Celiac, my sisters and brother, all have health issues, but none of them want to be tested, which is a shame. after what they saw me going though and how miserable i was you think they would want to. I love you’re blog and stories and about the familiar crazy man, and your right people think this is a diet and everybody want to jump on the band wagon, even though they don’t do it for the right reasons, because they don’t know about cross-contamination, you don’t make something gluten-free by peeling the skin off of fried chicken or taking croutons off a salad, like i have been told to do by a so many people, even one who was a celiac, and i told them that’s just wrong. HELLO !! It is not a gluten free fad diet. Celiac’s are not eating gluten free, because we want to and it’s the latest fad diet, it’s an auto-immune, so just because your giving us gluten free, doesn’t necessarily mean it’s gluten free unless it’s without cross-contamination, then it’s 100 % gluten free.. I always like to speak up when people ask me why I bring my own food and not eat what every body else is eating and I will tell the story 10x or 100 times, and doing that i find out that somebody they know, their friend, their neighbor or one of their relative has Celiac, communication is the key, and not being afraid to speak up.. i have no problem with that, even though my 17 year old daughter tells me ” Mom know body wants to hear your story about your celiac disease over and over ” . Yes they do ! as you can guess, my daughter doesn’t have celiac disease, yet.. Thank you Jennifer, love your recipes, that are also soy and dairy free. STAY WELL
THERESA
I loved this story and was able to share some of it with my friends tonight at our Holiday Party/Gluten-Free Cookie exchange with the Gluten Intolerance Group of Colorado. Inevitably the conversation steered toward awkward social situations when you have a dietary issue. I encouraged everyone to read this story. You pointed out how it IS possible to balance sharing and educating others without making a huge scene or being rude!
oh, and I know which book you are talking about
i would like to know where I can get recipes. My hus band is newly diagnosed and I would love to thrill him with some really good meals !!!
Thanks…sue
Hi Jennifer, if I may call you by your first name. I watch the show Blue Bloods every week! Your smart alec charater cracks me up.
I saw you this morning on “The View”. I was very enlighting. I know someone that is close to me that has been recently diagnoised with an immune disease. I’ll pass your information on to her and let her know about your website. I’m a strong believer on saying what’s on your mind. Sometimes the truth hurts but a lie will never heal! Take care.
What a great way to start my day! Thank you so much! My husband who is a disabled veteran from the Gulf War has Celiac and suffered for 20 years before he was finally told by a doctor…”Maybe you have Celiac”, but had NO plan for him, just told him to eat fruit. Well….4 years later and thousands of miles away, he is doing wonderful (but he eats more than just fruit). When he left Hawaii he was in a wheel chair and dying from malnutrition. Now, he tells everyone he feels as good as he did when he was in high school.
One of our biggest struggles is explaining to his family what we can and can’t eat so they “get it”. They just don’t get it sometimes, it can be very frustrating. Going to restaurants is a whole other issue. We have only found 3 “chain” restaurants that we feel pretty safe with, but prefer to find all gluten free restaurants when possible. But they are so expensive…$20 for a small pizza!!
I have learned to cook through all of this and even though I don’t have Celiac have learned to eat healthier and have benefited from turning our house gluten free. I look forward to trying your recipes. Thank you again!!
Jennifer, I watched you on Dr. Drew last week. I immediately started eliminating gluten and feel like a new person. You see I’m 61 years old and have never been diagnosed with celiac disease, until now, you’ve changed my life. Although Dr. Drew seemed extremely harsh to you during the interview, you were persistent and stayed with the message of letting people know there is a solution. Thank you for turning adversity into a blessings.