Well…it’s been a busy couple of months. The bakery, the new facility and the book tour has been crazy. I can officially say the Celiac Awareness Jennifer’s Way Book Tour is finally finished and wow what a ride.
If you have followed along here then you know the trials and tribulations it took to get this book to the masses. From years of trying to convince publishers that a book like this was useful and not depressing (as many wanted a “happy ending” or a “wow you’re cured moment” or worse, celebrity tell all nonsense) to the insanity of trying to simply speak about this subject, celiac disease, to the media.
Huge magazines aimed at health and well-being said “Nah, we are booked,” “we have covered this diet” or “we will publish a recipe of hers online but don’t want to discuss this subject. ITS BEEN DONE”. The top talk shows ALL said NO for a variety of excuses too annoying to mention. Especially since I had been on almost all we reached out to many many times before.
The only prime time morning shows that I was so grateful to appear on were both strangely enough being cancelled. The response was infuriating, upsetting and to be honest extremely confusing. Especially since this all went on during Celiac Awareness Month! HUH?
I started noticing that at this exact same time there was more and more bashing of the gluten free diet than ever before. News stories, celebrity gluten free bashing, “studies done” and even big name doctors who promoted gluten free eating suddenly all speaking a very different tune. I even wrote about some of those stories here and on my Facebook page. Many of those stories and “studies” even stating that unless you were a diagnosed Celiac than every other condition that is said to benefit from a gluten free diet,( gluten causes inflammation and inflammation to ANYONE isn’t good, especially those with an autoimmune disease) Autoimmune disease, autism, and gluten intolerance was basically all in your HEAD and a major marketing ploy from major manufacturers to do nothing more than get your money.
I was sickened by this and felt hopeless I must admit. While I agreed that the gluten free craze had made every company from big to small slap a gluten free label on items (gluten free or not) to get in on the frenzy; but to say that a gluten free diet wasn’t healthy for anyone other than celiacs, which was a small percentage, was just not right.
We were all trivialized in one full swoop.
Now again I agree most gluten free packaged foods out there are full of sugar and crap but to be so bold as to say that this gluten free diet is merely all a big scam was mind blowing. I get so many emails and Facebook messages from people who have suffered tremendously at the hands of gluten in their bodies and to hear them all be diminished in such a way was everything my book was against. If you haven’t read my book, I journey through 20 yrs of being told that my illness was all in my mind, so I have a deep compassion for people dealing with this same struggle and encourage everyone to be your own health advocate.
Then one day as I was about to write a Facebook comment about a particular outrageous “study” that clearly stated that this was all a ploy to make money off you, it dawned on me what was happening. In this article, it stated that the gluten free industry had become a 25 billion dollar industry. Thats 25 BILLION folks! Taking it directly from the wheat industry! Think about it – that 25 billion was spent somewhere else before this “craze” with gluten free started. The wheat industry is one of the worlds biggest money makers, period. If people stop buying the product, wheat, and switch to gluten free products, then thats a huge whole in peoples wallets. HUGE.
Every talk show and magazine has advertising money to keep it up and running. To keep speaking about the gluten free diet and giving it actual validity as I would have with my book would be a direct conflict. I realized this was much much bigger than me and my book. This was an all out war and unfortunately many who are ill will be in the cross fire.
But instead of feeling upset by the recent backlash to ALL of us who need to be gluten free and choose to be for HEALTH reasons, I feel uplifted. Uplifted in the fact that what I’m preaching and so many others are preaching IS having an impact. For such a large number to be eating a gluten free diet, it is pushing huge companies to PAY ATTENTION. THEY ARE – and now they are trying to change your mind.
My plea to you is this: if you feel better staying away from wheat then you should CONTINUE TO DO SO. If your arthritis feels better or your skin issues disappeared or your brain fog is gone, then keep going. That is NOT in your head. That’s an actual fact that YOU feel and see. Of course for the celiacs, we MUST keep going but for everyone else do NOT be swayed; stay on course and give YOUR body what its asking for – GOOD, CLEAN, FOOD. You have a right to that.
Which brings me to the final hurrah on this crazy ride of getting the book attention and ultimately celiac awareness…The Daily Show with Jon Stewart.
I had heard that his wife and son suffered with celiac disease as well and told my wonderful never-back-down publicist to send a book and letter over to the show asap. It took a few weeks of her calling but we eventually had an answer that YES they would book me on the show. We were overjoyed. Not only because I LOVE his show and it is HUGELY popular but because I KNEW that whether or not he chose to speak about his own personal struggles, he would at least truly understand and give the subject the respect it so desperately needed. Not that the Katie Couric show or a few others that I was on didn’t, but it’s a very different experience when someone personally deals with this tricky disease.
After a month we still had no booking date and we were getting discouraged. I thought to myself if he didn’t want to talk about it after having it right in his own home then really who would. It was then that we received word that we had an official date. I was so elated and so very nervous.
The day of the taping I had a brief pre-interview with the producer going over what we would discuss. She confirmed that his wife and son most definitely had celiac but whether or not he would mention this was up to him at that moment of the interview. I understood and was still so excited for the show.
My lovely ladies at the bakery made him a huge goody bag to take home to his family so with the goodies in hand, we went to the studio. As my publicist and I waited in my dressing room going over the points I wanted to make within my time out there we heard a knock on the door and in walked Jon.
Jon and I met years ago when he did an episode of Spin City but it seemed a life time ago by now. He has gracious and welcoming and immediately started telling me about his journey with his son. Something I see all the time with fellow celiacs, a willingness and almost need to share their story with someone that truly gets it. I listened to this concerned dad, not celebrity, tell his horror story about his boy and how ill he was. Then we touched briefly about how the gluten free fad is making a mockery of this disease and he stated that’s what he wanted to talk about. I said great and thanked him profusely for having me on and it was show time. I thought okay that’s a huge issue and if he doesn’t want to talk about his personal issue than that’s just fine.
Not a second or two into the interview I was blown back by his openness and honesty about his boy. Please realize the gravity of this situation – most of EVERYONE I spoke to about this subject and getting my book out there made me ALWAYS talk about an “upside” or to “not make things so dreary”; to just speak about a disease. There was always a “fun spin” or a “happy recipe” to make and here was a comic writer and a comic show on the COMEDY NETWORK speaking openly about a disease and not making it LIGHT or a JOKE in any way. I was BLOWN AWAY. Yes he still had to make his show what it is, funny, but he so seamlessly transitioned from something very real and painful for him into a joke or two not once demeaning the actual subject. I was elated.
I can not thank him enough for being so gracious; not only to me but this disease and all who deal with it. This was a HUGE win for ALL OF US. The more we can give validity to the severity of this disease, the more we will be heard and hopefully make some changes.
Do NOT write me here or anywhere else and state that he or I did not advocate for gluten intolerance and brushed it off as a fad. That was NOT the case at all. We both spoke about the FAD and in a 6 minute interview there is only so much you can say. I know for me and from speaking with him, that NOTHING about the subject, being ill from gluten whether a diagnosed celiac or not, was a joke or pushed under the rug on any level. His son’s life depends on it and so does mine.
So it has been a loooonnnnggggg road with this book tour, full of highs and lows, but ultimately ending on a huge unexpected high. I thank you all for your support and going on this journey with me. We have moved forward and will continue to do so!!
Much Love.
Be well,
I thought it was a fantastic interview bringing the right amount of serious attention to a serious subject with the right kind of humor that doesn’t demean the disease, as you wrote. Thanks SO MUCH for making it happen.
I wonder if Jon had seen the Jimmy Kimmel garbage and other attempts at humor by some of his “peers” (i put that in quotes as Jimmy Kimmel and the like are so far outside of Jon Stewart’s league its not fair to call him a peer–he’s peerless), and in part wanted to do a segment that explicitly responded to the snark and “jokes.” If you can say, did he mention any of this to you?
Jennifer- Yes!!! Keep planting seeds… the harvest takes time, but well worth the work and wait. Thank you for your persistence and determination to stay the cause. All to simply reveal the healing blessings that are available to all who have the capacity to SEE THE BLESSING that you offer.
With love and support from Canada.
Jennifer, thank you for all your efforts and concern for Celiacs!!
It was a great interview! I too was blown away by how open Jon was about his son’s struggles. I wasn’t expecting that, and was thrilled. He was respectful and engaged, and really, what else can we ask for? Jennifer, you did a wonderful job, (and you looked beautiful as well)
As a non-Celiac with gluten sensitivity, I wasn’t offended in any way, and actually didn’t even think about it until you mentioned it in the post above. I feel that you speak for me, as much as you do for Celiacs. Thank you so much for everything you do for our community!!
Heather, I agree with you. I have Gluten Sensitivity after being diagnosed with Pancreatic Cancer in 2012. I am so thankful for Jennifer!!
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Admiring the hard work you put into your blog and in depth information you pdivore. It’s good to come across a blog every once in a while that isn’t the same outdated rehashed information. Wonderful read! I’ve bookmarked your site and I’m adding your RSS feeds to my Google account.
Bravo! The interview was fabulous. Being gluten free because of Hashimoto’s Disease is the only thing that gave me back my life. You get it. Thank u God!!!
Aww, Jennifer–this was an awesome interview. It made me smile, laugh and I do believe it give vindication to the seriousness of Celiac disease. Thank you for persevering in having your voice heard. You look very healthy and beautiful, by the way. God bless you
Wonderful post!
You know, when I was starting my online “organic, certified organic” personal care products business, I did a ton of medical and business research. What are BAD ingredients? What is the business forecast for this industry? Well, the shocking truth is I learned that the “organic personal care and cosmetics” (Beauty etc) industry had a graphical line going nearly straight up like going up the Himalayas…over like 10 years. The growth expectations were HUGE. You’re so right. When an industry sees the growth expected they all jump on the bandwagon. I sorted out so many products I would NEVER sell because I saw nasty ingredients in them…”organic” products. Nasty ones! I informed people like you do.
It’s the same with gluten free industry. You are just so correct.
I’m scared. I know me…I will be so angry, furious. I’ve just recently learned my cancer hangs over my head and might come back…it won’t respond to chemo or radiation if it’s in my gut. I’m overwhelmed. By the way, though it was cutaneous leiomyosarcoma on my face, it’s normally found in the stomach and small intestine!! If I don’t have celiac, I know I will sit in fear, as I do now, about what I eat.
I haven’t gone for a celiac or allergen diagnosis with the gastro doc yet.
This revelation is because of you, Jennifer. I’m sorry this is so long (I’m mouthy) but I’ve suffered so much with illness but was raised to pick my butt up and keep on keepin on. It’s like “Oh yeah, I feel like shit, so? Get going!” I’m sad and depressed now because it’s just hard day to day. Not knowing will bother me, but knowing it’s celiac will piss me off…after all these years of plate in my neck and excruciating pain, cancer, digestive issues, sinusitis, nearly going deaf from ear infections…why why why?
Thanks Jennifer so much for helping me to understand it may not be only genetics as I thought for so long. xox
I saw the interview when it was done on TV and you have no idea how grateful I felt when I saw it. Thank for your perserverance, and I encourage everyone to thank Jon for bringing you on the show. Validity is a very healing thing for the emotional part of this disease, and often what we need most. I am excited to read the book. I am grateful it was written. Thank you from someone who went 35 years undiagnosed, came very close to death because of it, and is still fighting to be well.
Kudo’s to you Jennifer for your bravery and diligence. I really liked the Katie show you were on. You were articulate and worthy, every bit of it. Gluten free foods are still, we find in our practice a culprit for auto immune IF solely relied on them. We often have to pull people off grains because there is more sugar than if you had sugar straight. People just have no idea! Read Grain Brain by Dr. Perlmutter. I now see every company coming on board for gluten free products- gotta participate in the billion dollar game! Barilla pasta I saw recently however they use corn and rice and you can bet your bootie it is not non-GMO corn! Everyone watch your ingredients carefully and be judicial!
Thank you for giving us a believable public face. It matters.
Awesome interview! Good for you in discussing the disease openly!
I have felt sick for so many years and always thought that it was related to stress…
It will soon be one year that I have been diagnosed and it is unbelieveable to feel the pain go away. We all need to continue increasing awareness! I do it daily.
I thought it was a fantastic interview! And his humour didn’t demean the disease in any shape or form. And after coping with this illness in past and present, if it weren’t for my sense of humour there would have been times I would have cried or not gotten out if bed. Humour can be good if not demeaning a cause or person.
Be well!
Laura
Jennifer, your perspective on Celiac was honest, sincere and credible during this interview. You could not have stated any better the truth about this disease. You are a beautiful, articulate ambassador for all of us with Celiac Disease. Thank God for celebritys like Jon Stewart and yourself.
Thank you Jennifer!
Unfortunately, until a huge pharmaceutical company develops/finds an expensive drug to treat Celiac disease, this disease will get little notice. Fibromyalgia was treated as an “all in your head” disease until a very pricey drug, Lyrica, was marketed for this disease. However, the only time this disease is discussed is during the selling of Lyrica and other than that, you are still treated as if you are lazy, crazy or overreacting. It’s all about the almighty dollar.
Jennifer, your book has changed my life! I was diagnosed with Celiacs disease in Sept. of 2013. I had a blood test and my RA doc. said that it showed I was highly likely to have Celiacs, but that I needed to have an endoscopy to get a REAL diagnosis! So, that’s what I did and sure enough the biospy showed I in fact had CD! However, my only symptoms were lots of gas and loose stools once in awhile, I was more concerned about my RA and the pain of that then anything else. My
gastroenterologist just told me that I had CD and just to go GLUTEN FREE! So, no problem, for months I just avoided gluten in my food, but noticed that I still had more gas than I should and some loose stools, but I just thought it would just more time for my body to adjust! NOT! Until I read your book I had NO idea that it was everywhere and in everything in my house!!!! So can’t thank you enough for being an Earth Angel for Celiacs!!! Thank you for never giving up and getting the book published! I am going to see my gastro doc. this month and I am going to tell him to read your book, in fact, I just might take him a copy!!! I am shocked and surprised that a gastro doc. doesn’t explain much more about this disease!
Feeling so great since taking all your advice! Coming to the east coast in Oct. and if I can I am going to try to make it to your bakery!!!
Joan
Much love and much gratitude to you Jennifer…you are doing so much hard work planting so many seeds, the work you are doing is helping so many of us. God bless you may your harvest be bountiful!
Jennifer, THANK YOU! For everything. The book, the book tour, your bakery, and your candor on this debilitating disease. You are an inspiration! I read your book the first day it arrived. I suffered for 20 years with Celiac disease before getting a diagnosis. As we all well know, this disease is so debilitating and most folks don’t have a clue as to how serious it is until they or someone they love get it. I am inspired by your tenacity for getting the word out and for getting well. Great work!
We appreciate all that you do! I know it’s frustrating, but you are helping so many. So thank-you! Keep up the great work! We are grateful for your voice!!!
Your interview was great! Keep spreading the healthy gluten- free good word!
Well it is no surprise that the Main Stream Media is doing all it can to get out the message that Gluten Free is bad. What gets me is the kind of Dr.s that are telling us Gluten Free is bad. Get a load of this DR on a local news station telling us Gluten Free is bad VIA Youtube Video: http://www.youtube.com/watch?v=1msByPo2R8E I mean do not take this the wrong way, but this Dr. doesn’t look at all like he knows how to speak proper English.
I thought the interview was very well done and was very impressed by how you both did. I like you suffer from neurological problems. It’s so important to keep putting accurate information out there and like you said for those who have not a diagnosis of Celiac like you and I to feel valid in there choice to eat GF if they feel better and it relives there symptoms.
Thank you Jennifer !
Thanks Jennifer! You and Jon nailed it!! Thanks for speaking up on behalf of all celiacs. It’s the first interview I have heard that totally expressed how I feel as a celiac.
It was a really great interview. I’m so glad he gave you time to speak and he was so genuine as well. I appreciate having you on our side to advocate the need for clean food. You did a fantastic job!
Can’t wait to someday visit your bakery. In the meantime I’ll continue to order online. Thanks for everything you do!
Wonderful interview! Thank you to both Jennifer and Jon Stewart for bringing awareness about this disease to the audience. Yes, the mockery that the fad followers have made of the GF lifestyle makes it dangerous for us (me, my son, and all of the celiacs) to eat out. I have taught my seven year old to read food labels, making him aware of hidden starches, malts, etc., so sad that his life depends on this skill.
Wishing you health and happiness!
As I sit here and cry after reading this, all I can say is THANK YOU. Finally someone is taking this serious. Someone who can get this out there is doing it. It is sad that it takes a celebrity to do it, but if that is what it takes then so be it. Dear Lord thank you again. From a woman suffering from Celiac in Kansas, the flippin’ wheat state of all places.
As usual, you ROCK! Baby girl…. So proud of you and all the accomplishments…. I continue to pray and believe good things on your behalf. Please take care of yourself and stay strong for the good fight you are waging. You are loved and admired greatly! Thank You!
Ed
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Hmm it looks like your blog ate my first comment (it was exlermety long) so I guess I’ll just sum it up what I submitted and say, I’m thoroughly enjoying your blog. I as well am an aspiring blog blogger but I’m still new to everything. Do you have any suggestions for newbie blog writers? I’d genuinely appreciate it.
Great interview!!! Thank you Jennifer and Jon Stewart for bringing awareness about celiac disease to the audience. Finally someone is taking this seriously!!!
Very nice! What a great start to my week. Ok ok I finally went ahead and ordered your book. I was waiting for you to do an audiobook version, in your voice. I’m a slow reader and have trouble sitting still. Great job!!
Special Report: The Gluten-Free Standard” Video on Youtube describes how the NEW FDA rules will help people with Celiac Disease verify there food is now GLUTEN FREE. http://www.youtube.com/watch?v=YGqt3PPVlL0
Dear Jennifer,
Thank you for speaking out about Celic’s disease and letting the public know that for many of us this is not some fad, not a way of drawing attention to ourselves, or making life difficult for others. I travel all the time, and I have to say it is so much easier now concerning gluten-free dinning than it was 10 years ago. In many ways, the gluten-free diet fad has helped make more foods available and actually taste good! Terrific job on The Daily Show – you helped a lot of people.
Hi Jennifer-
Thanks for all your hard work in putting out the word about this strange and hugely misunderstood disease! I have a question that concerns me since finding out recently that I too suffer from this disease. How do I gain weight while suffering from this? I am 6′ tall and at my best, my weight should be 165 to 170lbs. I was shocked to find out yesterday that I weigh 145lbs. I am afraid to exercise / lift weights while in the throws of this disease, but am losing muscle density due to not having anymore fat on my frame. I am currently on the gluten free diet as well as the SCD diet and have seen progress in having a lot of symptoms clear up, feeling much better! But knowing that it can take up to 2 years to heal enough to absorb nutrients due to having my villi be virtually non-existent. Thanks again for all of your hard work, and good luck with your new bakery and your fight against all the nay-sayers out there!!!
Adam
Jennifer,
Thank you so much for this informative website and for all you are doing to help
Celiacs and other gluten sensitive people! I haven’t been diagnosed with anything but know that life if better for me without gluten. Your site is one of the most helpful I have seen. I wish we had one of your bakeries in Nashville, where I live. Next time I’m in NYC, I want to check it out! I have enjoyed your work as an actress-love your sense of humor-and am grateful for the work you’re doing now.
This wonderful interview led me to your book and blog. I’m so very grateful. I was diagnosed in 2009,finally under the care of a good doctor who picked it up immediately (after years and years of failed attempts at figuring out why I felt so awful – same old story). Your book has helped me immensely. I went thru the detox at first as well, but I was unaware of the phenomenon and felt like a failure – a very confused failure. I didn’t get better in 6 weeks – it took much longer, but I eventually did. I rarely eat out, but had begun to include several “gluten-free” processed foods to my daily diet, and symptoms seem to be returning. You woke me up to the cumulative effect of so called “gluten-free” foods, as well as dairy. And where there are symptoms, there is damage. Thank you for addressing the issues straight on, telling your story and providing so much more information than the doctors generally do. Blessings to you and all of your endeavors! I’ve always enjoyed your acting roles, but the Celiac connection has really made a difference in my life.
Thank you for being an advocate for all of us who live with Gluten intolerance and sensitivity. I’ve been gluten free for 2 years now and yes, there are so many that just don’t understand. They think that just this time won’t hurt, or just don’t worry about it and it won’t bother you.
Thank you for standing up for us. While I haven’t been diagnosed with Celiacs I understand how frustrating getting the right diagnosis can be. It took Doctors seven years to diagnose my RA. I can’t imagine what you must have gone through. The pain and fatigue must have been unimaginable. Take care.
What else can I do but join the legions to say THANK YOU! For your tenacity, bravery & kindness to share your story. I have been in & out of doctors’ offices for years, with every diagnosis under the sun. I was about to give up & try to live with “my new normal” when I saw your interview with Jon Stewart. Crying as I read your book now & have an appointment next Tuesday for celiac panel blood test. Thank you for coming in to my life at just the right moment & renewing my courage & conviction!
Thanks to Jon Stewart for introducing me to your campaign and book. After being diagnosed as idiopathic, I have given up on the medical community but your diagnosis of allergies to not only gluten but dairy and soy, etc. are right on. Can you recommend a toothpaste, hand cream, shampoo, etc or purveyor of? Thanks for all you do!
I’ve been gluten free for over 16 years since my daughter was diagnosed and I found relief from some of my health problems. But I still struggle with anxiety, fatigue and frustration that I feel like I’m doing something wrong because I have so many bad days where I feel so crummy. My husband saw the interview and bought your book for me. I identified with so much. This can be such an isolating disease. The nasty comments and not being able to join in with people when eating. It’s bigger then just saying no thank you. Often I’m ok but the people around me are put out. Thank you for your book and your fight.
Thank you for going out there and raise people’s awareness about Celiac disease. I admire you for what you do and how you do it.
I’m a new Blue Bloods viewer, I ordered the DVDs from the previous season and discovered your role in the show. You were perfect, capturing the profile of an NYC native gal, very enjoyable. I wish that you were still on the show. I wish you the best of luck, personally and professionally, and best of health.
I saw your interview with Jon Stewart and thought it was fantastic. THANK YOU!! I know this may sound strange but it is so nice to hear an actress sharing their medical need for being GF rather than just to lose weight or to feel better. While the feeling better part is probably due to either undiagnosed celiac or GF intolerance, this is not even mentioned. So much of the media tells us that this is more of a fad and isn’t serious or even repudiates its necessity for us. I am so tired of hearing how going GF can even be bad for us! We all need to hear that this is a serious illness not to be taken lightly. As a celiac myself I cringe at all the media stories that trivialize this disease and misinform. I thank you Jennifer for having the courage to stand up and tell your/our story.
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