I write with a heavy heart today. In the last couple of years my every waking hour has been consumed with all things Celiac related. The years spent on this blog and social media trying to spread awareness, writing my recent book, my bakery, writing back to as many of you as I can, the new facility in Queens and of course dealing with the disease first hand has all been a lot to say the least. Especially owning and operating a bakery with my own money on absolutely no experience in this arena was a real tough one for me.
But it’s the release of my book that has really left me shaking my head with sadness. My book has been called a cookbook, a memoir, and as of recent, a gossip tell-all. Hell…lets also call it erotica at this point.
The many that have already read it are in disbelief right along with me. If you haven’t read it yet let me say this – DO NOT BUY MY BOOK if you believe you will get cover to cover recipes, a memoir of Hollywood stories or some other frivolous gossip trash. YOU WON’T.
My book, in which I bravely open up my life-long struggle with this disease is just that, MY journey with a disease. I take you through my life’s twists and turns that ALL relate back to where I was with this disease and how it reared its ugly head at that point in my life in hopes YOU will see a pattern in yours and give you the help you need to be your own health advocate the way I had to be. As most of you know, it takes 7-10 years for a proper diagnosis and even then the struggle continues. I wrote this book because I DIDN”T WANT ANYONE TO SUFFER AT THE HANDS OF THIS DISEASE THE WAY I DID. PERIOD.
And YES it has done just that for many so far. I sincerely thank all of you who have reached out to tell me how moved or helped you were by this book. It absolutely means the world to me. In some of those letters and emails, I also get many stories of your own, all of which make me cry. I read about a women who lost her mother at 50 to this disease because her intestines erupted. I read about another women who lost her child at birth due to complications with her celiac disease. I read of young children losing part of their intestines and having a colostomy bag for the rest of their lives. I’ve read about your frustration and sadness of not being heard by family and friends when dealing with this disease. I read it all and I feel for all of you deeply.
It’s for this reason I am doing what I’m doing in hopes to change things for those suffering. Thats why my heart hangs heavy today. The lack of care, glib, hateful, or even joking manner at which this discussion is met has made me think of closing up shop. In the past month, dealing with press that didn’t care to discuss this subject on their show, to some recent statements, leaves me questioning humanity.
A recent sad individual addressed my disease as my “intestinal problems” and that that wasn’t the only thing that was “full of crap” ha ha – and that my book was nothing more then a gossip geared at a person in my far away long forgotten past. This nonsense was then picked up all around the world never mentioning once what the book is actually about; obviously no one bothering to actually READ the book. This mixed with the constant jokes about gluten and the fad that goes along with it has just made me think, Will we change anything?
But even more so – WHY ARE PEOPLE SO ANGRY? Why is it so hard to talk about the actual subject at hand – CELIAC DISEASE? Why make fun of people that are hurting? Is your life that bleak that this is how your feel powerful and important? I do not know when it became ok to joke about the misfortune of others. Or when it became ok to write nonsense with no BASIS of truth behind it? I’m not sure what type of person it is that can take someones struggle and try and make it trash. To make matters even worse then state that I should thank them for the recent gross press because “you will have better book sales, your welcome.”
REALLY? No words
To the creatures who live from such a place of greed, hate and where fame is god, I have news for you, not everyone lives under those agendas . I for one do not. If my book sold not one more copy but managed to help a handful of people than I’m happy with that. I have made not one penny from my bakery and its still the best work I’ve ever had the honor to do. No fame or money can compare what it feels like to give a child sick with this disease their first cookie EVER. It’s awesome when I am able to donate my gluten free treats from my bakery to autistic children who need it. It also makes me happy to know that at the end of my life I will have contributed something worthwhile to this world and hopefully helped some others along the way
What can you say for your life?
My message here is simple – be kind to one another, help another celiac who is struggling, stop the jokes about us and please find a way to deal with your unhappiness rather than spread it on others.
As for me closing up shop, it wont happen. Good or bad there is something in me that just won’t stay down, especially when dealing with such ugliness. So tomorrow I will brush myself off, pet my loving pups, bake goodness at my bakery, and THANK GOD for the life he has given me, Celiac and all.
Why joking about this disease matters was summed up beautifully in Gluten Dude’s latest Post helped along with Irish Heart. Please read!
Be well…
I loved your book. Read it in 2 days and the barely mentioned relationships are just that. I get it. I was so annoyed (for you) with all the hype about the unnamed. You have inspired me to go gluten and dairy free. I went to a Dr years ago who tested “everything” and she said I had celiac. I also did one blood test with regular GP and he said no I do not. Whatever. It makes me feel bad. Dairy really can make me a moody………
Anyway, thank you so much and I’m sorry people jumped on the few sentences about an ex. That’s not at all what the book is about!
Day 3 no gluten! Day 2 no dairy! (Feeling crappy but I know this will pass:)
What about grass-fed dairy? US people in the Dr. Osborne gluten free world are not having problems with the way it use to be before BIG BRO got their hands involved in it and started feeding animals poisons and altering the foods in other ways.
Stay strong, Jennifer!!!! The people you want to help are SO helped by what you are doing. And those who love us are seeing how your words, efforts and treats (ummm that salty rosemary bread?!?!) move us to tears. There will always be those who just don’t get it or who are not kind…. I can’t imagine what it is like to filter all of the hurtful and pointless criticism you are receiving, but hold your head up high because you are doing great things for the Celiac the GF community!!!!!
Stay the cause Jennifer– Have you ever paddled a canoe against the river’s current… If you stop for a mere second, the canoe immediately floats backwards…Your boat is ‘the truth’, and the paddle is your words, love- actions to move in the truth, against the opposing currents/forces of the world. Boats will pass you from the opposite direction with great ease of current (the world’s beliefs/lies)- their paddles are lying bitter,nay-saying shouts.
But you paddle with all your strength continuously for not to flow with the currents of this world. Paddle the cause, stay the course–It is filled with love, focused by truth and brings forth Life, and peace. (Oh yes- one ore thing– 1000 people in a room and all saying the same thing, does not mean they are right.)
I was among the many that groaned at a particular tweet aimed at your book the other day. Whilst I don’t have Coeliac disease, I can relate to the long and hard days of awaiting diagnosis for my own problems (fibromyalgia, chronic fatigue syndrome, deep vein thrombosis and pulmonary embolism) and how impossible it seems to have a ‘normal’ life.
For me to actually still be breathing what with the clots is a miracle. Autoimmune disorders and my particular predicament are impossible to understand as nine times out of ten they’re genetically activated. For you to speak out about Coeliac and still maintain an active life is as well a miracle, but those of us who have had such horrible experiences don’t see it as miraculous; it’s a product of our hard work and the support of everyone around us.
I aim to pick up your book in the coming days as it’s always interesting to hear how some people cope with particular illnesses/disorders. I find it despicable that some ‘organisations’ and ‘people’ (they deserve not that adjective as it implies a sense of empathy) focus solely on a distant past.
I wish you every success with your fight (one that you are certainly winning) and hope that people pick up your book for the right reasons.
Oh Jennifer,my heart is sad for all that you have endured at the hands of such cruel people. I actually read your book and can not for the life of me understand why so many people jump on the bandwagon of hate. I believe there is something seriously wrong in a person’s heart that get joy out of hurting others,to me they are no better than the idiots that are abusive to children and animals. sick sick minds.
I know all too well of the eye rolls and have even lost a friend of 20 plus years over this disease because she just couldn’t understand the extreme fatigued i suffer from when I just didn’t have the energy to return her calls. It seems so many people just can not understand a disease that can only be controlled by not eating gluten that causes so mnany bizare symtoms and pain. This disease nearly klled me. In hosptial,renal failue, severe iron anemia, and dehydration from 8 months of constant diahrrea,blood transfusions iron infusion i began to come around. Tested for every thing under the sun and had endoscopy to comfirm diagnoses. I also have DH most severe on my eyelids whidh only recently is under control. So my dear fellow celiac I admire you so much for all you have accomplished and continue to go forward in the midst of such hateful road blocks.Keep wearing your suit of armour and take comfort in knowing so many of us are lifted up with each struggle you over come.
I look forward to ordering you goodies and can hardly wait. Making a trip to New York is not in the cards for me at this time because of many other health issues due to celiac but as I improve that trip is right up top of my list.
Take care Jennifer I wish you all the best with everythig . gentle hugs,cynthia
Thank you for all you do! Spreading awareness and information of this disease is so important as evidenced by the hatefulness that stems from ignorance that you are unfortunately encountering now. Don’t listen to those idiots. People who go out of their way to make fun of others who are suffering from a devastating disease are not worth your valuable time. It’s hard to understand why there is so much animosity towards this disease. It runs in my family, and most follow a gf diet and are doing well, but I have a cousin who doesn’t. She was officially diagnosed as celiac, yet refuses to change her diet. Since her diagnosis, she continues to get sicker. First diabetes, then lupus, now fibromyalgia. I know she will die soon if she does not stop eating gluten. It’s very sad, but sometimes even people who have celiac refuse to understand and accept it. Keep up your wonderful work-it is so appreciated, XO
What the hell is wrong with these people? Are we with celiac disease such a threat as to warrant this type of reaction to a very helpful book written by a wonderful woman? While I have a similar story as yours, reading your book helped me enormously in understanding many of my other symptoms and that they all go back to celiac disease. In fact, my son is currently reading your book–he is 19 and also has celiac disease. Don’t ever stop what you are doing, Jennifer. You are my hero and I thank you for your courage. If I could get to New York to come to your bakery, I would do so in a minute. God bless you
Jennifer, please do not let this add to your stress, especially as you are still healing. Your story is making a huge impact and is saving lives. We cannot control other’s reactions, just like we cannot control our reactions to gluten.
I read your book and wept – finally there was someone who experienced what I have been experiencing! My husband read your first chapter and also cried. “This is your story!”
We must stop apologizing for our intolerances – if we start forgiving and accepting ourselves as “broken,” then it will be much easier for us to tolerate others who cannot accept us or the disease. Otherwise, those folks may become like gluten for us – and our bodies may react similarly when we are exposed to their unkind words and injustice.
We are discovering our daughter is also gluten intolerant, although her blood tests for the past several years have come back negative. Although she is a gorgeous little girl, her teeth have been affected and she has overwhelming anxiety. My advice is: get the whole family off gluten if one person is celiac!
Love to all out there. Relax, and stay healthy!
Piss off stupid people. I just dealt with something similar ARGHHHHHHHH!
You said on the first day of announcing your book what is was about and what is was NOT about, these folks need to learn to read.
I head to NYC this Saturday and I can’t WAIT to eat some of your lovely food, primarily BAGELS!!!! okay and BREAD!!!! okay and ……
xo, Sani a very happy mom
People can be so cruel, I don’t understand it. I believe it’s because of their own ignorance, they don’t want to take the time to find out about celiacs and what it means to be gluten free. I think you are doing great things for the celiac community. I don’t have celiac, but I am gluten intolerant. Please don’t let these naysayers get you down, you are very strong and that’s an admirable trait. Thanks for all you do.
I can’t express enough love to you right now because I understand your hurt of not taken seriously. However I say to you right now NEVER GIVE UP!!!! Because or your courage to go on Katie , it was then I found you and Celiac in which I ran to the phone to make testing appointment. In 2009 I started the journey of Chrones and Colitus. Yet my mental health and memory was fadding. No energy focus ect. I knew I wasn’t THAT CRAZY…LOL. please know you have saved my life and my family…I spent 3years sick on my couch and now I am working daily to clean up the last 4years and for that I am FOREVER GREATFUL!!!! You are the voice for the voiceless… Gods Angle….
I just wanted to say, that I have read your book and could not put it down. It was very informative. I also went to Dr’s for several years and they also said your test results are normal. But I knew something was not right. It took a friend to convince me to see a Dr that specializes in food allergy/intolerances. And you can guess what happened. Though I do not have celiac, but I am intolerant to gluten, most nuts, and olives and olive oil. Needles to say, it is a struggle, especially, gluten and olive oil. But I think of you, and get my strength to Cary on and learn more as I have through you. There were things related to gluten I was unaware of. Found them in my pantry, etc.. Got rid of them and I feel even better. I hope to get back to New York sometime and visit your bakery. Thank you from the bottom of my heart for making my life so much better!
I relate to every word you say. I tell everyone I know about this disease in order to hopefully prevent them or someone they know from suffering for years like I did because I didn’t know about Celiac. It is no laughing matter. I can kill you. Thank you for your gusto for life and for caring for all people. You are a treasure among us!!
You are a beautiful and sensitive person Jennifer. I watched you on Katie show and felt you were clearly incredible! Every minute you were poised and informational and anyone with a brain could see how important the message was. You are speaking to a crowd of mixed reviews like Oprah did in her beginning. No worries. Those who get it, will benefit. Anyone with a voice about any subject carries that inspiration. The world is not flat but can you believe those before us who had to prove that? What about those who spoke about washing hands because germs were on them? I heard it all as a nurse in my student days. Stand by what you know for sure. Maybe it isn’t about fighting but about just leading by example. People will turn their heads. God bless you.
Jennifer, Stay strong, continue on your path, these individuals will certainly fall by the wayside. You are doing a world of good. Sadly, these people exist and thankfully many like you do too.
One more thing. I believe that people who say cruel things are sometimes jealous because you have the courage and guts to do what they wish they could do, but won’t. I agree ignore them, you are doing a great service to all of us!
I am so sorry! I know what you are going through. I care. Please know that you have helped so many including myself have hope. I flew from San Diego to NYC and found your bakery and it put a smile on my face. Sincerely, Jeannie
Dear Jennifer
A friend told me about your book after hearing you talk. I immediately bought the kindle version. I could not put it down. I was comforted by your words. I could relate to so many of your issues. As the book continued I was empowered and took another step on the acceptance level of not being able to eat gluten. Today I am trying one of your recipes
you are a trailblazer and as Brené Brown says when you are leading a revolution and are standing out in front you will have people that are not so nice to you….. (summarized). Please know there are so many of us standing behind you and others when they hear your story and wisdom are/will be ever so grateful for all you are doing. In your heart you know you are doing good I hear the strength and tenacity in your words at the end of your post. Use that energy for all of us and brush off the ashes of those who blah blah with useless words…. With sincere appreciation ! Stand tall my friend!
Jennifer..just keep telling yourself..You can’t fix stupid. I love your book and everyone in my support group is reading it. We appreciate your courage and persistance. My mother only lived to be 40 and I think she must have had celiac. My daughter and I have it and I was diagnosed at 40 after many years or problems. I put myself through college in my 40′s and became a registered dietitian at 49. It was a struggle and sometimes I wondered why I was doing it, but it has been worth it and I know there are people out the who were diagnosed with celiac because of me. And there will be MANY people diagnosed with celiac after reading your book. So hold your head high, let the haters hate, let the stupid people %$&*% and just keep doing what you love. You don’t have to defend anything and there are MANY people who appreciate what you do.
Jennifer, there is an old saying”ignorance is bliss”. Ignore the stupidity and continue doing what you are doing. You are truly a blessing to many. Loved the book and how you shared your journey!!
Best of everything to a beautiful person!!
Wanda
Sorry you have to deal with all the ignorance that is out there. Please stay strong and continue what you are doing. You have touched so many lives and helped so many. That is your true purpose! Thank you for being the kind, considerate person you are. Continue to educate the people that need it. Ignore the ones who don’t know what they are talking about. The Celiac Community needs you as their spokeperson! Again – thank you for everything.
Your book was amazing. I’m so sorry that you have to deal with all of this nonsense (I don’t want to curse here.)
Please know that those of us who have Celiac Disease appreciate you each and every day for all you do for us. Please continue to fight the good fight. You are a strong brave woman, don’t let them tear you down.
Jennifer
You have helped and inspired my daughter more that you can possibly know. It really doesn’t matter what other people think – just that you have helped so many people. Closing up shop would mean that the people who don’t understand are more important than the ones that you have helped. Don’t stop now!
The pundits don’t joke about cancer, why is gluten such a target? My son spent years looking for a diagnosis, finally confirmed with celiac disease, follows a strict diet but continues to suffer debilitating stomach/bowel issues. No beer and pizza for this 20-something, it breaks my heart that his social life is now non-existent due to the limitations of celiac. On the other hand, I have become quite adept at baking gf, and research/follow blogs like yours as a result of his disease. Jennifer, keep up the good work, and know that the people who matter appreciate all you do. God bless!
My daughter has celiac and is in graduate school at The University of Illinois. She has discovered some good gluten free beers such as RedBridge and New Grist. She also likes Strongbow, which is hard cider, which most bars serve. Following a strict gluten free diet does hamper your social life, but you find out fast who your real friends are. Friends will seek out restaurants that offer gluten free options such as chips and salsa. Sometimes they even call ahead or check with the waiter or chef, just to be on the safe side. Best wishes to your son. Glad he likes to bake.
Thanks Barbara, My son does enjoy baking. He doesn’t drink alcohol, but the biggest issue is with the cafeteria food at the university. He needs to talk with food service this year and get them to make sure the food is not cross contaminated! Yeah, it has hampered both of our social lives, but I think it is harder for college kids, don’t you?
Please don’t let it get you down. There are a lot of people out there who think all of us women are just hypochondriacs. They have no idea what things we go through to get a doctor to listen to us and believe us. Fortunately, I have a great doctor who has known me for years and when I don’t feel well, he knows I’m really sick. I watched you on Katie and I have most of the same symptoms so I am going to insist on being tested for celiac disease. I pray that isn’t what I have, but it is better to know and deal with it. Ignore the naysayers. If they weren’t complaining about you, they would be complaining about someone else. I can tell that you are a very sensitive person and that is why it got you down. Put your shoulders back and don’t let them win.
Nice blog; standing tall is a fine attribute… Your voice is needed and heard on high, and you are loved and admired by many…
As for the detractors, the cynics, those making jokes…. Consider the source.
You are breaking down tall walls that have stood for years, that have been fortified by science (?), and are being actively maintained by scores of entities with no agenda for actual knowledge and healing.
And you are only a girl with a calling…..
And you are slowly dismantling this gargantuan rock by rock, day by day, pebble by pebble…. You gotta be loving it!
Olympian runners never look back, they just keep going….
But, they rest, eat well, train regularly, listen to the coach, and every so often they enter a contest…. You are doing the same! So, pace yourself and make necessary allowances preparing for the long haul.
I have it on good authority that you are winning, and your sacrifices are worthy of the rewards…
You are loved, and may God continue to bless, strengthen, and guide you in wisdom and charity in all that you attempt to accomplish….
The very level of resistance you receive is an accurate measure of your achievements…
Smile, sweetly, for you are kicking some serious ass….
Always praying for my princess,
Ed Stull!
Jennifer I have admired you for many years. I had no idea how ill you became (were, are) when you left Blue Bloods- I so enjoyed you on that show. Nevertheless, you have helped tons and tons of people and you are a strong lady with a brilliant mind. I can’t wait to buy your book, I will get it today. I am gluten free and have been for three months- I don’t think I have celiac but I can not explain properly how much better I feel with all of that junk out of my body, how much more alive, and how happy! It has made a huge difference. Ignore the idiots and the cruel- they don’t get it and never will-you are a special angel to many of us- stay strong, and hold you head high- you are AMAZING!!
Being an advocate can be draining. Being a well-known advocate such as yourself will just bring out that many more jealous haters and people with their own agenda. I will NEVER understand how people get off on spreading rumors about other people. It’s the lowest life form on earth.
But you know and I know how much good you are doing. Your voice matters. Do what you need to do to take care of yourself. The community isn’t going anywhere
Amen GDude. Jennifer, thankfully I haven’t heard or seen what was said and wouldn’t want to. Haters…there will always be some and I’m sorry you had this experience. Just plain crazy. Your book is fantastic and you are a blessing to all of us. Thank you for all you do, have done, and will continue doing! Here’s part of what I commented re: the Dude’s post on compassion, “Jennifer, thank you for being our visible advocate on the scene. I have been happy to see you making the rounds. Your appearance with Katie Couric was great along with Elizabeth Hasselbeck. To the community here at large, thank you!! It would be a lovely world if everyone adhered to the Dalai Lama’s words.” Totally looking forward to ordering things when your bakery goes online. Keep up the good fight! We’ve got your back
Your book and your work are awesome! I have been gluten free for about 7 months and have been feeling so much better! Always told I had IBS. I want to be tested but not sure how long I have to eat gluten for accurate results.Not to mention the pain while eating gluten! Also one doctor told me at my age (60), I would know if I had Celiac disease!I am not so sure about that! I am so sorry that our World is so lacking in humanity, but you should hold your head high and continue to help those that need and want help and awareness! I live in the South and it is really difficult to find truly gluten free anything prepared, so I mostly just eat fresh meats and veg,and fruits. An occasional cookie would be awesome! So keep up the battle for all of us!
No one is ever too old to be diagnosed or to do what you can to make YOU feel better. I went lactose free at the age of fifty after suffering for thirty years. A few years later I started developing bowel problems and severe abdominal pains, gradually developing multiple additional problems. The worst was a round-the-clock cough, at first mild, but over time becoming more and more pronounced and painful. After trips to multiple specialists and surgery removing polyps over the larynx, my internist knew not where to refer me. She had tested me several times for celiac with negative results. However, she suggested that I remove glutens from my diet. The change was not overnight but six years later I feel like a new person–and I am almost 84 years old. I also had other food allergy tests and had to stop eating several foods that I liked. It is worth while because the quality of life is so much better.
It’s so great to hear your story. When I was diagnosed, 7 years ago I let my family know they should be tested as well.
My parents’ doctor told them they were to old to change!!!! What a great answer, huh? I’m sure my mother has celiac but won’t get the blood DNA test nor will anyone else including my daughter and granddaughter who probably have celiac. So good for you. I’m so happy you are felling better.
My wife and I bought two of your books to hopefully get them signed by you at some point and I also bought one on my Nook so I could read it. We are not rich and we live on a Cops salary but it is in support of you Jennifer and Celiac.
Over the years I have had to fight several battles with the higher ups or public scrutiny over various issues. One of the very first things you have to decide is ” Is this a battle or war I am willing to join” then of course the next is “wether or not you are willing to be the leader”. I assume you did this before writing your book and doing the talk shows.
There are many people out there who have been trying to get the truth out about Celiac; their stories and hard work are all over. But now you are becoming the spokesperson and the leader in many cases. Jennifer you are becoming the leader of a group of people who need a leader to help get the truth out. This might be a fad diet to some but to many it is a deadly terrible disease.
After reading your book I can see you are strong or you would have given up many years ago, so your strength and desire to strive will see your through.
I read a lot of books on Roman and Spartan wars. One book I have has to do with the “Warriors Ethos” and the definition is: The Warriors Ethos embodies certain virtues, courage, honor, loyalty, integrity, and selflessness. I see all these in you Jennifer, so stay strong because after you wrote your book and began going on talk shows, you have now started people talking more about Celiac.
You have a strong gathering of people behind you. If you are willing we are here to fight with you. If you can help one undiagnosed person to realize they might have Celiac and get tested, then you have helped a person survive.
Carl
YES!
I dont understand the vitriol, I don’t get why people fear that which they do not understand. I read your book and it has changed my entire approach to the disease. Celiac runs through my family and my 7 year old daughter will have an endoscopy done next month to determine her status. I fear for her, but with people like YOU Jennifer who are courageous and stand in the face of ugliness against the odds to shine a light on a profoundly and ubiquitous disease, who MAKE A DIFFERENCE.
I watch some of your interviews and I cringed through most of them thinking, “they don’t get it”. The most disappointing was with one interviewer in particular WHO HAS CELIAC disease and choose not to relate to your shared experiences and did not communicate a level of respect for your sharing story which CAN AND WILL change the lives of those who are receptive. I was disappointed by how you — and the disease were received. I’m sorry for that and I hope that you can believe that there are MANY of us here, standing by you, who are will to fight for a voice and the right to be heard. Your book Jennifer has given me some much clarity in my own health and I promise to pay that forward. I think the next challenge is CORN, which will be a major battle as it is funded from the—Monsanto, and by de facto ultimately supported by the government.
I believe that will be a real uprising in the population who see that although they are off of gluten, they are not feeling totally better. It seems even more difficult to be corn free as most GF foods are not terribly nutritious — which is why your products are SUPERIOR — and they are loaded with corn.
What can we do? There are enough of us to have a voice; there is power in numbers. Sign me up!
Thank you so much.
Ignore the bad, and enjoy the good- know that you are helping so many and just ignore the rest. Go girl, your fans and clients are here sending you good vibes.
Its what we do, try to help those who want to be helped ( leave the rest) forget about the media, word will catch on about your book as it did with my cookbook, Finally Food I Can Eat. The Universe delivers, always, hugs
Jennifer, thank you for constantly putting yourself out there. As someone who’s also been suffering most of my life, I understand how frustrating it is. I hate that people joke, think we’re crazy, or just faking it for attention. I have family members who think I’m overreacting and try to put gluten laden products in my face or make me feel guilty when I can’t eat food at certain family gatherings. I am blessed to have an amazing fiance who supports me and takes extra care to protect me when we’re out and also defend and hold me when I’m faced with such contempt. I mean seriously people its food! I wish for the day when everyone will stop joking about gluten and recognize that people do suffer, even if you can’t physically see it. Thank you for all you do and keep up the great work!
I have started having extreme digestive distress so I have started searching out the gluten free world no longer eating wheat which is in everything is difficult I really feel if people have never witnessed a gluten intolerance they don’t have a clue the media has had a hand in making gluten free just another fad mainstream marketing has not helped by plastering on every item gluten free people can be thoughtless i have not read your memoir as yet I am in the long process of writing my own (memoir) I understand the pain
Your book was EXACTLY what I NEEDED… An experience – your experience. The first book to make me feel normal… Thank you!!!
Please Jennifer–Keep first in mind the good that you are doing and how much people respect and care for you. These cruel and sad remarks are a small part of the view that thousands of us see for you. Please do not give up and do not be sad. I am very happy to be able to read your posts.
To quote you, Jennifer: “I am Italian, and I am a fighter.” YOU said that. You are an inspiration. I am a Scot and I am a fighter.
I read recently that: What other people think is none of your business.
It’s part of knowing that what you do is for the greater good and that praise or criticism should not be where we base our self worth. I think it’s part of being human to feel belittled when we have put so much effort into what we believe is selfless and out of love and caring. I read all of the stories and comments on your blogs and know how helpful you are to our rapidly growing community. You should know that as well. Leave the critics and naysayers in the dust and put that energy toward your amazing goodness. You are a blessing to the celiac community. You know that.
Jacqueline, good one. Thank you for the reminder that I once read also after suffering from gossip and ill-will. “What other people think is none of your business.” Although it can be challenging especially in Jennifer’s situation. I like how she said “Good or bad there is something in me that just won’t stay down, especially when dealing with such ugliness. So tomorrow I will brush myself off, pet my loving pups, bake goodness at my bakery, and THANK GOD for the life he has given me, Celiac and all.”
We all love you and are grateful for all that you do. Shame on the haters. They just have some sort of unhappiness in their lives and are taking it out on you. Plus, salaciousness sells! It’s sad that people who haven’t even read your book are focusing on a brief passage and making it the whole story. Keep your head high, cause you are a beautiful human being. I know from reading your book that you are a kick-ass fighter! Hopefully one day I get to come to the bakery, meet you, and sample some of those delicious treats you guys have!
Please Don’t give up your fight… You have helped more people than you know!!!
Please don’t give in to these awful hateful numpty’s. They are not worth a second of your thoughts. I have been to New York twice and had trouble finding things to eat. I have fibromyalgia and leukaemia that has left me with a very sensitive stomach. I can’t eat wheat or gluten, anything from an animal or fish and recently dairy. I have lost my mum to t-cell lymphoma brought on by an undiagnosed allergy to wheat and gluten. It gave her three tumours in her stomach which could have been different if she knew not to eat wheat or gluten. She died in 5 months after taking herself to the hospital and saying that she wasn’t leaving till they found out what it was. Too late they started her on wheat and gluten free food. Because I am so sick my husband and I are trying to save up to go to New York because we love it there. It’s not been working too well because my husband has to stay at home to look after me. Last week my son booked a flight and hotel in New York for us in March next year. He is a wonderful son and wanted to do something nice for us to look forward to because we are going through a really tough time and need a break. Also if we wait too long I might be too sick to walk around New York. Our first thing on the to do list is to come to your bakery and have all the things I normally can’t eat. I will probably gain a lot of weight eating your wonderful looking food. Please keep strong and don’t let the hateful people destroy something you do well and have worked to hard for. I am coming from Scotland and my husband and I are so looking forward to seeing your bakery and he will love seeing me get some good things to eat. Please keep strong.
I’m shaking my head in disgust. There are no words to describe these people (I could say a few but why bother). I’m so sorry that this is happening to you Jennifer….my heart goes out to you. You are doing so much for this community and don’t deserve the bad stuff. I guess when you start saying things (the truth) people don’t want to hear they will cut you down. Keep your head up, keep smiling through it all, (they hate that). You have become successful on your own terms, with your truth and for that we all RESPECT you. God Bless!!!
Jennifer, I’ve been thinking about you the last couple days and this post, wow, just brought me to tears. But I hear your strength in it. AND I so much admire that you shared everything you did in your book. Looking back on my own life, I can see where my physical health impacted my life and decisions I made–and boy did I make some bad ones along the way. I admire you because you are strong enough to own and relate all aspects of your life because it’s all part of the journey. You have owned it and moved beyond it. Life and love will be exciting for you. Thank you for sticking with your bakery. I will plan to visit over Memorial Day weekend in New York — I worked at Pip’s Place on the UES before we moved!! Social media makes it very easy for the crackpots to come out, but we are here with you as well. Be proud and move forward just like you are–you have SO MUCH to be proud of!! And thanks for fighting for our tribe. XOXO
I’m so sorry that your brave and vulnerable story has been met with these kinds of reactions. I too have a chronic illness (fibromyalgia), and reading your book has made me feel inspired and empowered, part of a strong and compassionate sisterhood. It has also encouraged me to continue to tell my story.
I know how awful it is to be so sick for so long but have endless doctors unable to tell you what is wrong. I met my own Super Doc a few years ago and, as you and all our fellow chronic illness survivors, have slowly been learning how to live well despite my limitations.
Please know that you are making such a difference in people’s lives
Ignoramus’s!!!! Is all I can say!!! Show them the cat scans of the scarring in my intestines and colon at the age of 29 when I was first diagnosed with Celiac Disease!!! Show them the many bottles of medications I still have to use even being Gluten free for 17 years because the many years eating gluten without symptoms left so much damage they triggered an autoimmune response which left me susceptible to other digestive disorders so now I struggle with Colitis & multiple Food Allergies!!!! Jennifer take heart:) your work is so appreciated by those who count. The media be Damned!!! They misrepresent issues all the time!! I’ve wanted to visit your bakery for quite some time now….I hope I will be able to take time off from work one day and come in to the city. Please continue your important work of spreading this message to the masses!!! Chin up we are rooting for you and the awareness you have brought to so many!! God Bless You and your tireless devotion:)
I love you for what you are doing:) Don’t let a handful of hateful people drown out the many thousands that you have helped. I am in that number. I cried when I read your story because it was sad, I identified with it and it could have been my own. Thank you!
I bought your book on Kindle and read it within a couple of days. I am amazed at what you went through pre diagnosis and post. I have admired you as an actor for years and was blown over to learn you had Celiac. My 13 year old daughter was officially diagnosed almost two years ago and my numbers for the blood test were weak positive. We have been gf for almost two years. Her diagnosis came out of left field but once we got it things made since. The way I feel after giving up gluten, the symptoms I can recall looking back over my life that have resolved, amazing.
What I read in your book was YOUR story and you had every right to tell it. You did not drop names or bash anyone, you related your experience in this or that relationship or situation. It’s obvious to me that the folks who look for sensationalism had to dig hard for any of it in your book. It’s not there. I know that the point you make is that your message is lost in the salacious headlines. IT’S NOT LOST ON THOSE OF US WHO “GET IT” (not trying to yell here just emphasize) I have never been to NYC but I would love to and would definitely visit your bakery. Hang in there!
You, your story and your courage are inspirational. Please Jennifer, put all negative comments aside and continue on your path of helping fellow Celiacs. Your story brought me to tears as it is my story too. After reading your book, I felt for the first time that my diagnosis was real and that I really have this disease. I was diagnosed 3 months ago, one day after my 65th birthday. Diagnosis has been a work in progress for 40 years but only serious in the last 6. I have connective tissue disease, Rheumatoid Arthritis, joint pain, upper right stomach pain, flushing, sun sensitivity, skin rashes, chronic diarrhea, flattened villi, canker sores, Epstein Barr Virus, elevated liver enzymes, hypothyroidism, panic attacks, depression, fainting, and anxiety. I have been gluten-free for 3 months and since reading your book last week, I am now dairy-free. And, because of you, I am not alone. Thank you!
Jennifer..you told the truth in your book..never be ashamed of that…you are admired by many for that…only you know what went on but just possibly I think maybe you were hooked up with a lunatic that came off as mr. nice guy in public..and to make matters worse you had celiac(you didn’t know yet) coming down hard on you at a time in your life when you really needed support…..we live and we learn……what you do for all the children and adults who cross your path in life in your store and elsewhere I think far out weighs the few who find fault with you…remember you are a public figure and if it makes press and sells papers or magazines they will print it…….I think your new bakery will do better then you ever dreamed it would….hang in there!…..hell ill close my business and come work for free if you need help…..its always darkest before the dawn…..do what you love and you will be just fine
I loved your book and couldn’t put it down. It spoke to me that you opened up about your private struggles and reminded me that I’m not alone in mine. I’m glad that you concluded that you won’t close up shop. Please don’t — it means the world to me to have a safe haven in my neighborhood. People will say hurtful things in their ignorance, but you know what the truth is about how debilitating this disease can be. You have a community of supporters (myself included) that is grateful that you’re raising your voice to increase awareness.
Jennifer,
There will always be hateful people and they want us to give in and give up but we can’t. We are stronger because we are able to be kind to one another and those that are hateful and rude to us. It is not our fault we are struggling with this disease every day but we can prevail because we are strong, hateful people will always be just that, hateful. They are afraid of what is different and cannot accept the fact that we don’t need them or their acceptance. Please keep doing what you do, your work is amazing! I know I appreciate the awareness you are spreading and the kindness you are showing others!
My dear Jennifer,
I purchased your book after reading an excerpt from your book on Gluten Dude. It made me cry and I knew that you were writing your book from the heart for all the right reasons, not for fame and glory. Thank you for your courage in telling your story and for being another voice to help increase awareness in a world where so many have the disease and don’t know it. Only when others walk in our shoes will they truly be able to understand the pain we have gone through. When we are finally diagnosed and start feeling better after eliminating gluten from our diet, one of the biggest challenges we face is not finding empathy from family and friends. Instead of coming along side us with love and support, many blow us off and provide additional pain emotionally, which can sometimes be worse than the physical pain we have endured prior to our diagnosis. Keep doing what you are doing and do not let mean-spirited people, who don’t understand, influence you. Walk the high road and continue to be an advocate for the celiac community. God will honor your efforts. Remember…when human beings let you down, there is ONE who will not…our Heavenly Father, who knows our pain. He will never leave us or forsake us. He knows our hearts and that’s all that matters. Bless you, Jennifer.
I have always cared what people think of me (regardless of telling myself I shouldn’t) and in the past I always tried to keep my opinions to myself that way no one would judge me. I’m finally starting to realize that if people don’t like what you have to say, or misunderstand you, it’s not your fault. The people that matter/love you will understand you.
What I am trying to say is I understand where you’re coming from. Writing in detail about your long and continued struggle with celiac disease was brave and honorable. I was diagnosed a year ago but due to the length of time it took to finally reach this diagnosis, I continue to struggle with pain and I think some damage will just be permanent.
I know it’s easy to say don’t let the ugly things people say get to you, but it does. You opened up and made yourself vulnerable and it’s pretty pathetic that people will take advantage of that. But that is a reflection of them, not you.
Thank you for writing this amazing book!
Why let stupid people get you down? Come on – don’t become your own doubter. Your information and willingness to share has helped many people.
Yes Jen, what ugly and negative people say and do is indeed a reflection of THEM.
Every day I follow you Jennifer and Gluten Dude for encouragement. You have helped me through many tough days in ways that these critics can’t even imagine. I have four autoimmune diseases and Celiac is one. What you have done with you advocacy should be highly commended and never discounted in any way. You are a hero in my eyes at least for me. My life has been turned upside down & inside out. You have done me a public service every day for a long while now. Keep doing your good works!
Agreed Mika. I first found Gluten Dude, and then found Jennifer from his blog and community while I was bedridden with illness. I spent hours over a few days reading and watching Jennifer’s videos on my laptop. I was amazed how similar my own experiences have been and was incredibly comforted, encouraged as well and felt supported to know there was a woman out there like her, advocating for all of us. She is indeed a great heroine. The two of them have kept me going…when the going’s been rough.
I am so very thankful for your book! For me, it is like a big hug! Its comforting to know that we are not alone. Your story has helped me feel understood….and what is important is that others out there, maybe yet to be diagnosed, have it available to look to for their own source of comfort and understanding.
I want to say THANK YOU! You and your story have touched my life!
Dear Jennifer,
After commenting on a few above posts, I would like to add that your character, honesty and integrity speaks for itself. I have no interest in reading or seeing what the ugly hater’s have said. I know truth when I see it and your qualities have spoken volumes to me as well as your story. I’m much older, was diagnosed very late, and was moved to tears to know that someone like you has endured similar things. You are incredibly brave and strong to do what you do and a complete inspiration. I know you’ll be up in no time.
Hugs,
Mary
dear Jennifer I think honey that you have so much on your plate that these disgusting idiots were just too much. (I have relatives just like them) Give yourself some quiet time to calm down and let your mind, body and soul strengthen a bit. Remember that the problem is not you honey-THEY are the problem. (and this old world is FULL of these kind of people) YOU are the exceptional one. This old world has become strange to us older folks-the norm is to think of no one but self which makes people cold, uncaring, thoughtless, rude and downright mean. But there are still good folks out there Jennifer-they just ain’t the norm any more. And YOU are one of those exceptions. You care, you think of others and are obviously putting others before yourself. And those of us who walk the same road as you, are mentally holding our hands together WITH you and we all have become stronger. So you remember that Jennifer when the going gets tough. You not only have your strength-you have ours-each and every one you have helped with what you are doing. And you just continue on honey doing what you do best. And you will hurt them back without lifting a finger towards them- (for some reason Jennifer they can’t stand it when we do that) Know that even tho we don’t personally know you, we feel like we’ve known you for years-that’s just how much you mean to us. God Bless You Jennifer
just bought the book and cannot wait to read it….it had GREAT reviews when I checked before buying
KEEP UP! you rock and make a huge difference in my life, through cookies and by normalizing my existence living with Celiac. Your book is relevant, helpful, and informative, ,Your words and your message are much needed.
You’re not alone. xo
Jennifer the “Illuminati” or whatever the name they really are known as would want nothing more than for you to go away since you and others like you are making US AWARE of what we really are eating and how it affects us. Which is why they treat you the way they do with the shows and all. I think a good show for you would be PBS.org. I am glad you care it’s so rare today. We all need to fight the “powers that be”. We are fighting this battle with you Jennifer and YOU are making a difference more than YOU even know
Your our light! HUGS
Good Morning Jennifer!
You have made a difference and will continue to do so simply by continuing with your projects and spreading the word whenever permitted.
Stress causes inflammation — inflammation is our enemy — so hug that new fiance, enjoy you inventing new tasty treats and smile at anyone with a negative or dismissive attitude towards Celiac Disease.
In the five years since my diagnosis, awareness has grown substantially — yet falls dismally short. Science is catching up with what many of us had to figure out on our own. Once day every child along with any person presenting with non-specific symptoms will be tested for Celiac Disease. Until that day, we simply spread the word to all that will listen.
Thank you for all you do, Lisa
apologies for the typos…still early on the West Coast!
Loved your book Jennifer. Very well written. Saw the Hollywood comment about your ex. Thought it was ridiculous as he was barely mentioned in passing. WTF is up with everyone. I’ve only been gluten free for a year after 25 years of hell so I’m right there by your side.
Keep up your good work and try not to pay attention to all the idiots out there!
I’m a registered nurse and have a daughter who is gluten sensitive. I feel guilty over all the years of testing we put her though just trying to find out what her medical problem was. It wasn’t until a close friend of hers encouraged her to try eating gluten free. Her problems and symptoms went away. For 24 years she suffered unknown what was wrong. I now talk to all my patients and anybody that will listen about celiac disease when they describe symptoms that may indicate it as a possible diagnosis. You are making a difference. Just remember there will always be jerks and uneducated people.
Thanks
John
Jennifer, your book and your blog have been a HUGE blessing to me as a fairly recently diagnosed celiac. In particular your advice to cook and make the effort to cook good healthy meals, was actually what I needed at just the right time.
So Thankful for YOU,
Thankful for Whole Foods
You are an inspiration to me. Don’t ever give up. I was diagnosed 18 months ago and my doctor doesn’t know how to support me. They have a hard time believing that an obese person could have celiac. I had to convince myself that the diagnosis was true. The first thing I did was google celiac and obesity and got lots of articles about it. I was severely malnourished, a broken foot, anemia, fatigue etc… I have celiac and have dieted myself up to this weight. because I could not absorb nutrients my body held on to every scrap of food that I hate in search of nutrition. I do not overeat and people have always thought that I lied about what I ate. I have to admit that I do miss bread but that is a small price to pay to get better. Hang in there, I believe you are making a difference.
Jennifer,
All the good work you do cannot be taken away by hateful, ugly comments of a few petty people.
The people who love and appreciate you will always know where the truth lies.
We’ll just keep telling the truth about celiac. In the end, we’ll prevail.
You are so happy running your bakery!You are so happy with your new love, too..!.so enjoy this time now and focus on these joys and ignore the rest. Who cares what haters say? Poor things, they obviously have no joy in their lives.
You’re stronger than all that. Hang tough… and be well.
“Strength does not come from physical capacity. It comes from an indomitable will.”
― Mahatma Gandhi
Jennifer – you are a very special person. Don’t let this get you down. I was recently diagnosed by wonderful doctors who RECOMMENDED your book and your blog!!! I’m still new to this and learning but having this community is important. I’ve always liked you as an actress and thought “she’s such a cool gal, very genuine” and now I know I was right. Wishing you continued good luck with the Gluten-Free bakery venture – next time I’m in NY I plan to come by. know you are supported and appreciated by those who walk this same path and the people who love and support them as well :-).
I was diagnosed with celiac 7 years ago and I’ve never been more educated on the disease than after reading your book. I turned to the wonderful celiac community for advice, knowledge & support. Through blogs, books, endless internet searching & racking GI doc, holistic doc’s brains, I still didn’t understand how to cope & be at peace with the disease until after I read your book. I learned so much more about the disease & how to cope. tHANK YOU SO MUCH! I will make it to NYC to visit your bakery, I’ve been craving & onion bagel since I read your book!
many thanks!
Hey Jennifer!
I am in the process of reading your book and was AMAZED to read FOR THE VERY FIRST TIME in any book, article, etc. about celiac disease that those with celiac should not eat products with CARRAGEENAN in. I was diagnosed 5 years ago, adhered strictly to a GF diet and still felt awful until I discovered that carrageenan was the culprit. I avoided it for one year and then tried eating some ice cream that contained it and then I was fine. I do continue to eat it sparingly, if at all, though. My allergist says it is a derivative of MSG and MSG is very bad for EVERYONE! People with CD have Leaky Gut Syndrome, which can cause all sorts of problems and after eliminating gluten, the gut heals and sometimes those additional food sensitivities are resolved. That is the case for many who have lactose intolerance as well. For those reading who are newly diagnosed, please know that this does not mean that you can ever eat gluten again. Thanks for making people aware that carrageenan may be troublesome for celiacs. I’d also like to point out that if you are eating GF and continue to have issues, you need to be checked for lymphocytic or microscopic colitis (colonoscopy WITH biopsies), a condition which is quite rare in the general population, but fairly common in those with celiac disease who do not respond to a GF diet. How do I know? It happened to me.
You make some good points Andi, but I do have to correct you in one aspect. Those who are diagnosed with celiac disease can NEVER eat gluten again. To do so, would put you back on the horrible cycle of sickness again.
A few years ago when Jennifer noted continued symptoms I mentioned my discovery that food products with carrageenan caused me to react as if I had eaten gluten. I have had the same response to canned beans with seaweed as a salt additive/preservative. Then late last summer early fall I started to feel ill to soon discover two major gluten-free manufacturers – while having removed carrageenan made from red seaweed – had started to add alginates like calcium alginate or alginic acid made from brown seaweed to their products. Company when contacted did not understand the issue. I still maintain that some part or parts of the seaweeds protein contain gluten like proteins and while these seaweed containing products may adhere to the <20 ppm vs the stricter certification of 5 ppm and many respond to the higher limit. Working to get the scientists to look into the reason that for many of us only gluten, msg and seaweed products cause us to react yet we can eat other clean field to factory grains such as oats with non ill effects.
Seaweed contains gluten-like proteins?
That’s interesting because no celiac researcher has ever listed that food additive as being gluten-like. Can you point me to some reading material on that?
thanks.
I am sure some people have a problem with carrageenan in high doses, but it’s not a hazard to all celiacs.
For example, I have intolerances to MSG, high histamine foods and soy, but that’s not because of their relationship to gluten. Other celiacs tolerate all those foods just fine. It’s just me.
Some practitioners argue that those with inflammatory bowel disease should avoid carrageenan. However, there’s been no research either proving or disproving that it is a hazard for those who have celiac disease or non-celiac gluten sensitivity.
I have not found any at least.
I did, however,read thie celiac doctor’s article and I respect her opinion.
http://www.thepatientceliac.com/2013/01/13/carrageenan-and-celiac-disease/
….and I meant to mention that I am guessing you are the same Sharon who is commenting on her blog as well?
I have conversed with both Dr. Tobacman and Dr. Jess Madden of thepatientceliac.com. I have discussed my hypothesis with other scientists one involved with a major celiac group who noted there was this huge database of foods for which amino acid sequencing must have included the seaweeds yet despite all my research and requests and that of Jess and many others including cornocopia there is no definitive documentation that the species of red and brown marine algae used in our food supply have had all parts not just the blades put through amino acid sequencing. See also theglutenfreeprofessor and gluten dude who have blogs on this as well. The significance is that many unhealed celiac patients are known to heal after removing carrageenan from their diet. For me and many others we have no other food intolerances except for gluten, seaweed products and msg. As a person who was in clinical research for a few decades it is hard to believe there is not an underlying connection.
Last week because my relatives don’t understand I just did not want to ask the waitress if the cream was carrageenan free. Put about 1-2 teaspoons in my coffee and drank only half the cup. Have had GI, joint, neuro and other symptoms that will probably last the usual 2 weeks. Left a message with the restaurant to check what is in their cream but I know from past experience that is what it was.
By the way I have repeatedly asked Dr. Oz’s team to look at the inflammatory if not directly gluten or gluten-like response to these seaweeds and seaweed products – particularly the ubiquitous carrageenan that is quickly being usurped by alginate as the manufacturers do not understand that the issue with seaweeds for CD and NCGS folks and others who have an inflammatory response to these is the same whether red algae or brown algae. An additional issue is that many including Dr. Oz have touted the anti-inflammatory benefits of seaweed!
Karen,
So true, but if you reread my comment, you will see that I made that point. I certainly don’t want people to think that they can eat gluten every again, if they’ve been diagnosed. Outgrowing celiac disease is a myth. Once you have it, you can never eat gluten again.
Thanks for emphasizing it though.
This was the sentence that was a bit confusing and provoked my response,
” For those reading who are newly diagnosed, please know that this does not mean that you can ever eat gluten again”
See, when you said this, it looked as if you were telling people that they might one day eat gluten again. Do you see what I meant?
Karen, Andi
“This does not mean you can ever eat gluten again”…. implies…”because you can’t!” so honestly, it seems clear to me. It’s not incorrect; it’s just phrased differently
than “you can never eat gluten again”.
Full disclosure, I was an English Prof.
But she said, “this does not mean…” so I just got confused.
I know what she meant and I am not trying to be so damn picky. I guess I divert to the English Prof–I am a freelance journalist and Lord knows, we have perplexed many copy editors.
IrishHeart — thanks for the moderation, and for the record, you are right about the difference in language, especially in the context. I was also was a former English teacher!! Also, I appreciate the calling out of carrageenan. It’s pretty much a bad boy for anyone so glad Jennifer has it getting some exposure. Processed food not good, folks. Peace!!
When I said “Peace!” I was really hoping we could move beyond this semantic discussion. But the original sentence, which was written correctly and grammatically, in context said that while you might be able to reintroduce certain inflammatory elements in your diet when you have started to heal (eg, carrageenan and maybe perhaps some dairy products) that doesn’t mean you can reintroduce gluten, ever. Now, please go check your toothpaste and alternate milk products for carrageenan!! There are alternatives but you have to read labels. PEACE!!!!
Yes I discovered carrageenan in toothpaste when I just was feeling off a bit – not severe symptoms, but I said to my husband I feel slightly “glutened” as they say. Could not believe it was in toothpaste. Keep in mind one type within the same brand may have it, another may not.
Cookie decorations – sprinkles – though many now are being made GF – are another source. The person who has sold me makeup for years was an unhealed celiac and bemoaned how she felt the labeling was not accurate. She showed me a bag of candy that made her sick. It was jellied with a hard coating like Christmas cookie sprinkles, and yes carrageenan was one of the ingredients.
The other odd product that contains carrageenan is personal lubricants!
And get this Gaviscon frequently used for GERD /reflux brags that it spreads and adheres better to address GERD now that they have added alginates – the brown seaweed version of essentially carrageenan. I sent their consumer folks a message as several years ago before the change I used this. With my diagnosis and.GF diet now I only have an issue when contaminated. Cornocopia website has a pretty complete list of products with carrageenan and are aware of the alginate invasion.
Peace be with all of you. I was honestly not trying to stir up trouble. I truly apologize for agonizing over the statement. It is just me. I was having issues with it. I am sorry
Jennifer,
You cannot spend one more minute on ignorance!!! You cannot fix ignorant! You, your story and hence, your book, are so very inspiring and bring hope to all of us that have spent most of our lives being told “it’s all in your head”. Your message to “keep going” until you find your own answers is so important. We all seek to feel “normal”. To wake up in the morning with energy and enthusiasm for our passions is our human right. All of us who cannot do that have not “chosen” to do so…our answers just haven’t been revealed yet. Thank you from the bottom of my heart for all of your work and passion. I look forward to the day that I will be able to order from your bakery to be delivered in California. You inspire me to want to have a bakery of my own here. I have to feel better first. Thank you thank you thank you for everything!!!
Please do not be discouraged by the naysayers. I saw you on Katie & read your book in 2 days. What a struggle you have been through & what a strong positive light you have shined on this awful misunderstood disease. Gluten intolerant since 2010 I want to thank you for all you have done & continue to do. Visited your bakery for the first time over the weekend & almost wept as I ate one of your jam cookies. Hands down the best cookie I ever had!
I have not read the book yet. From what I’ve experienced from “Jennifer’s Way” and the “why ” she is getting the word out, she comes across as sticking to the “why”. I am one of the gazillions of people with Celiac disease. It is much harder for those with a sensitivity/intolerance to gluten. Those are the people who need more support. They need extra encouragement to believe they have as much of a potential for serious health problems. Not just those of us who finally got lucky enough to definately know what was wrong.
I do understand why some people make fun of the whole gluten issue. I’ve asked some of these people because I wanted to understand what was really going on instead of calling them “jealous haters”. Some of what they say is true. People running around in t-shirts that say things like “I punch gluten in the face” is embarrassing to me.
Just stick to educating the public and not being offensive. Be careful who you team up with Jennifer. Make sure thay have the same great clarity of “why” you are doing what you are doing and not being rude about it.
Nice post, Charis. I think NCGS (non-celiac gluten sensitivity) is an evolving paradigm if you will. While CD experts have denied any connection – most especially the autoimmune one – there are clear immune ones with NCGS. Celiac.com has a recent summary of experts meeting on gluten sensitivity and Journal Watch recently cited a study showing children with IBS are four times as likely to develop celiac disease. For years experts denied any connection of IBS and especially IBD to celiac disease. The celiac.com piece also discusses IBS and its possible connection to both. Testing is behind the research as another gene not part of the standard CD testing is being linked to celiac – the MD of thepatientceliac is one of those with the DQ7 I believe as opposed to 2 and 8.
Finally, experts have denied that NCGS may precede a positive diagnosis for CD and many doctors believe once you test negative you cannot develop CD especially if you do not have one or both of the two common genes. A case study in Ireland had a women in her mid fifties present with what the doctors thought was CD though tested negative antibody and biopsy wise. Five years later presented with full blown CD pos blood and biopsy and ulcerative colitis which I believe is in the IBD realm.
So we have much to learn and educate others – most importantly primary care doctors – about these GI disorders/diseases and their connections so people are properly diagnosed and treated.
I read your book and found it very informative. Keep up the good work. I admire your strength and love of life. Don’t listen the nay sayers! Pet your pups, take care of you and reach out to as many sufferers that struggle with this silent killer. I am in your corner along with many others. Kindness is all around us…we just have to get past the ones that want us to not see it. Be Well!
Jennifer, I just finished reading your book and I wanted to thank you for sharing your world with the rest of us! Through the last eight years I have had to restrict my diet by trial and error because the doctors couldn’t figure out my allergies beyond Nickel and Carba Mix, which are not food related per-say but require major restrictions of chemical products I can use or be in contact with. I feel like I should be living in a bubble. I then found I am intolerant to soy, it won’t kill me just make me so sick I regret trying to eat. So I had to learn what had soy in it and how to avoid it. Not an easy task, so I can completely relate to lack of social outings and depressing holidays when the family gets together and there is nothing safe to eat… I usually bring a side dish now of something safe for me and a cooler with other alternatives. After reading your story I believe I need to look again at my diet because there are many days that I still feel “not right” and itchy. I only sleep when medicated with Benadryl and my nails are kept very short. So I will be going gluten free and see how that goes. Looking forward to buying your goodies online as I’m from the west coast and may never travel to the east side! Again thank you! You made my world a little brighter!
I can not begin to tell you how sorry I am to you for going through what you have. Your book is one of the best that I have ever read. I could not put this book down. I found so many things in your book that explains some of the issues I was having with food. I have not formally been diagnosed with Celiac. I have had doctors tell me it was in my head, IBS and just take this magic pill. When I went back to them telling them something was wrong they kept on stating it is IBS. No doctor would listen to me. I decided to give gluten up for a week and I started feeling great. I added gluten back to my eating and everything was back. I have been gluten free for three years and am feeling so good. I have been suffering as a kid also and doctors could not find out the issue. Many stories to tell, but I will cut it short and say THANK YOU SO MUCH FOR WHAT YOU ARE DOING FOR ALL OF US SUFFERING.
Sandra
I did not put your book down for three days, anyone who actually reads it can see that it is a personal journey that you wished to share for good reason. I do not have celiac disease but I have a damaged digestive system through years of acid reflux and now corrective surgery. I have many symptoms that you have highlighted and have now started to incorporate a cleaner eating regime into my day to day life to try to alleviate my symptoms. Not only this but I have been able to pass this book on to my daughters boyfriend who is newly diagnosed with Chrohns and has had a hell of a year with hospital admissions with the hope of helping him to. I also work with diabetics and met a lady yesterday who was hospitalised for six weeks with digestive issues then discharged without diagnosis. She told me her symptoms and they matched yours, I advised her to go back to her GP and ask to be checked for celiacs. So not only are you helping those with the disease you are helping others to pass on your knowledge in the hope of helping others and that is something that you should be proud of.
I have not finished your book yet, but had to tell you that my journey is so very similar to yours, although not as extreme. I also have looked back at my mother and grandmother (both deceased) and see the signs that they also had undiagnosed celiac. Your story will definitely help many people find a diagnosis and deal with this disease. Thank you for putting on paper what so many of us deal with.
I am humanly close to you and support your fight but unfortunately the world of Hollywood is difficult and a sentence can make a difference …. and the gossip is always just around the corner …. and protect your real privacy is complicated … and you have to rely on competent people … however, I will read your book.hug.
Jennifer,
I am almost finished with your book and I see myself over and over again in what your write about. I am still struggling to stop the pain and constant stomach aches.. I lived with years of anxiety, depression and anti anxiety drugs. iBS and psychological diagnosis with no relief. Finally I have the answers but not feeling better. Everyday I starve because it seems everything I eat makes me hurt. So sometimes starving is a better pain. I absolutely am coming to your bakery. I live on Long Island. Your Guardian Angel gave you the strength and knew God had a mission for you. You are a great actress, hated seeing you leave Blue Bloods but when I saw you on Katie, I saw hope.. Thank You. I need a good doctor seems you have been through many do you recommend Columbia NYC? I saw they have a celiac dept it seems? My daughter who is 14 has been diagnosed and my husband as well! That is 3 out of 5 in my house. My 2 boys are 2 and 4 just waiting to see if they have it. I believe in my heart my 2 yr old does. I need a good doctor as I am trying to do everything right but no relief from this pain and bloating I suffer everyday.. Thank you again for opening so many eyes and giving hope. I cannot wait to get to your bakery. Best wishes to you always. Nancy
Nancy, the best advice I can give you is this – a good doctor and dietician (both well versed in not only celiac and other GI disorders but also in an anti inflammatory and elimination diets), continued education and most of all patience. Yours may not be a simple just remove gluten and all the hidden gluten in condiments, etc. issue. You may have other food sensitivities thus an elimination diet may be necessary. Many find that once they heal after eating close to the earth, sun, and sea avoiding any all additives that they are able to gradually one at a time add back foods. See thepatientceliac.com a women MD with celiac who covers much about dealing with this and celiac folks who may have issues with even non-gluten carbs requiring a FODMAPS program.
As anyone who has read my postings, and Jennifer mentions this in her book, for some reason seaweeds and the seaweed-based additives carrageenan and the newest quietly added by many manufacturers alginates or algin often combined with a salt like sodium alginate or potassium or calcium alginate. Just got over a two week recovery from being glutened likely from ham in an omelet at a reliable restaurant to then buy some pineapple juice that had gums I can tolerate but missed the algin so I dumped the drink I was making for my husband and me. Got sick as a dog last evening GI and joint, back and muscle spasms then realized I had taken a small sip of this non Dole brand before I put it in frig to chill.
Nancy you must be patient and find the safe array of foods for you to start to heal. Have a good dietician start to help you. You have to eat as healthy as possible and your doctor should check for other GI issues. Supplements are often needed – talk to your doctor and check labels as with foods they must list gluten and other allergens. Prescription meds and OTC over-the-counter you may be taking often contain starches that may be or may not be (not required to disclose these) from gluten-based grains or have lactose or soy or iron that are GI irritants and ones which many celiac folks cannot tolerate before or even after healing. I had to take a liquid antibiotic a few years back as no company will pull form could guarantee the starch was gluten free as FDA does not regulate source labeling. A common OTC GERD med Gaviscon contains alginates. So have your medical team take a good look at the inactive ingredients in your medications. There is a proposed gluten in medications disclosure act but the other common allergens may also remain in meds to cause issues.
Let us know about your progress, Nancy. Take it one day at a time. Keep a food journal with how you feel with all and any foods you eat listed.
Jennifer
I saw you on The Chew and I must admit that I am moved by your journey even though I am not a Celiac. Just someone that strives to lead a healthy life. I GET IT! What you’re doing IS making a difference and inspiring hope in so many. Know that there are leagues of individuals that are praying for you and even holding your arms up as you get weary during the journey. WE support you as you support the mission. Ohhhhh how I wish I resided closer to NYC. I’m planning a trip just so I can visit your bakery and hopefully see those delightful poochies of yours.
~Much Love & Be Well!
I read your book and wanted to tell you how helpful it has been. I have had a very similar experience, had to diagnose myself-none of my doctors have considered this disease to be legitimate. My husband’s entire family has been reading your book to better understand what the disease is and what I’m going through. Thank you so much for writing your book and sharing your experience with the world!
Jennifer -
I bought and finished your book in 1 day. I’ve struggled all my life from digestion issues and it hit all new heights during/after I had my two children. I too contracted C Diff. after my daughter was born as well was very anemic. I remember the call from the Dr. he was so shocked that a 31 year old woman would have it. Nothing was out there to connect all the dots back then. I just new I had to stop visiting the bathroom so many times a day and being so dehydrated. I had kids who needed me! I read another Gfree book 5 years ago & did the Gfree journey on my own. I had read about the no dairy option while you were making the transition, so within 4 days the bad bathroom visits stopped. The thing that I most struggle with now is the acid and inflammation throughout my body and the pain associated with it. I cannot take any anti-inflammation medicine due to my stomach. This is the main thing that I was relieved that you discussed and gave options on how to help it. I do not want to go to the Rheumatologist and be put on meds. I also liked the sections where you discuss the ignorance and the people that don’t believe you are as sick as you are. My own sister (who has her own digestive issues that she ignores) has been the worst about discounting my illness. Thanks for talking about the emotional toll that this disease takes on you.
YOU ARE HELPING!!! BE PROUD!!!
Hi Jennifer… You mentioned on The Chew that you didn’t have a good vegan cheesecake recipe… well I ran across one that I thought you might like to try:
http://food52.com/recipes/22884-raw-vegan-strawberry-vanilla-cheesecake
I sure wish you had a bakery in L.A. too!
I ordered your book, can’t wait to get it…
I’m so doing this cheesecake. Got to go back to the store though. I haven’t even put the groceries away from an hour ago.
I just finished your book. I could have sobbed all the way through it for so many reasons- For all that you have suffered because of not being heard by doctors, family friends and employers . For all this disease has taken from everyone dealing with it within the celiac community.You put into words the thoughts and feelings that my family and I have walked through before and after Celiac disease became our reality 3 years ago.Feeling absolutely alone and knowing no one understands the daily struggles unless they live it themselves. and Many more reasons. Thank you For all that you have done and continue to do. Thank you for being an advocate for the Celiac Community!
I read your book in 2 days and found hope which was really a need as I have been to over 11 doctors and they still have not helped or accepted the AlCAT test that said I was severely allergic to Gluten, I have a horrible rash all over my body and have had 3 skin biopsies to try to find out why the cells around my foot are as hard as a rock and the swelling have all but deformed the image that it is even a foot. I had to beg to get tested for Celiac Disease. I stopped glutton 4 weeks ago and the results are severely worse than when on it. Thanks to your book I find patience, hope and love. Thank you.
Thank you for your book; it really helped me turn this around to a positive… That I can cook for myself and that will bring me freedom. Thank you a thousand times for that. I really needed to embrace cooking as something I can do for myself so I went out and bought new equipment and supplies to make the task easier. Your book also helped me understand and accept that I have a serious illness that I need to take seriously. I was really trying to skirt the whole full blown celiac thing because, honestly, who wants to embrace that? I also have food allergies, including corn, so I had been really mad about the whole thing. I’m also not feeling suddenly terrific, and so I appreciate that part of your book as well. I hope my tone doesn’t sound sad… I’m not sad any more, and I’m actually starting to become excited that at some point in the future I may start to feel better. Thank you.
Humanity. You said it. It’s depressing. People are so rude, thoughtless and just plain old mean. It’s scary to think what the world will be like in 20 years. It’s sad that the Celiac Disease community suffers because it is not a money making disease. Refer back to my first few sentences. Your book, Jennifer, is inspiring to say the least. Please don’t stop with what you are doing. The good in people will persevere; at least that’s what I have faith in. I have to in order survive it seems. I have not been diagnosed as a Celiac but something is wrong with me. Or rather some things, as in plural. Many symptoms similar to the many mentioned in your blog entries. I’m being my own advocate. It’s so hard.
Thank you for your book.
Jennifer I would like to start by saying THANK YOU. I have been struggling with this for two years since I was diagnosed and still do not have all the proper information. I just finished your book and being a single mom a business owner and running a household with two dogs I finally can say that I can do this! Your story is surprisingly a lot like mine and seeing what you have gone through and where your are now I have faith in myself. I have not been able to find a doctor or nutritionist who can clearly look at me and tell me that they can help me so now I I am out to help myself! For Christ sake I live 30 minutes from Boston! So I just keep trying! I have used some of your ideas for the detox and they are great! Thank you so much for everything thing you are doing it is inspiring and so helpful for someone who has a voice to make it heard! I applaude you for putting your story out there and helping all of us who have struggled and who still are! I can not tell you what it means! Just wish you had a Bakery near me! Good Luck and God Bless!
I was diagnosed with celiac disease a month ago. I’m in the process of reading your book now. Only in Chapter 3 and I love it – and I haven’t even gotten to the “celiac” parts. So don’t listen to all those people. There is so much misunderstanding and so much apathy in this world. I’ve been writing in my blog a lot about celiac disease because I want people to understand that it’s not easy. It’s not just “eat gluten-free” and you’re fine. For Pete’s sake, I was eating gluten-free for three years and THEN got diagnosed with celiac disease because I had high blood antibodies simply due to cross-contamination. How’s that for a failed celiac healing. The celiac life is not in any way easy, and it’s infuriating to be told it should be. I appreciate what you’re doing, what you’ve written, and am now personally searching for a way to spread awareness of celiac disease also. Keep going!
I have been dealing with celiac since I was a child but it is only within the last few years that I was able to make the connection with food. It is only within the last year that blood tests revealed very strong celiac indicators. I read your book yesterday and was completely moved. I underlined and made notes regarding symptoms, experiences, and anything to which I could relate. And there was a lot. In fact, it was almost unbelievable to me. I attend a gluten free support group and even there the symptoms and experiences just do not resignate like those in your book. This is a lonely, lonely disease. As I read and re-read parts of your book, I found it hard to see through my tears. I am a mental health therapist and I can tell you that there are a huge number of mentally ill, homeless individuals who undoubtedly have this disease. At my worst, I could completely see how I could have been among them. I was unable to think and too tired to move. I look back and wonder how I ever maintained a job, a house, and a family. This disease has had a huge impact on me personally, professionally, and financially. I did nothing well but somehow kept going, always searching to understand why my body and mind were changing so rapidly at such a young age. Sometimes I wonder if some of the anger expressed by others about this disease has to do with their own dependence upon food and gluten for coping. They feel threatened and enraged at even the idea that their own, “toolbox” could be challenged. Maybe they even feel jealous of the individual who has the strength to pull off something so radical as completely changing the way they approach food. Many would prefer to believe health is a matter of just trusting their doctor. Whatever the case is, I can tell you that you have made a difference in my life. I have never seen one of your shows or movies. Pop culture is just not my priority. I do know and love you now! Thank you for your AMAZING perseverance in the face of so many obstacles. Thank you for your courage and passion. I pray that you continue to extend the same love to yourself that you so generously extend to the celiac community. Many blessings to you and yours!
Hi, I am still reading your book but made the mistake of putting it in my Kindle and now need the book itself since there is so much I want to highlight etc.
I was awestruck how much I identified with your story. I wasn’t as sick as you (you really went through hell!) but I was pretty darn sick for about 10 years until I was diagnosed with mercury toxicity. When you mentioned you that too I couldn’t believe it. I had just about every symptom you did (including the mercury which I never knew related to the celiac since I knew nothing about celiac at the time.) That was 30 years ago! I was diagnosed with Gluten Intolerance only 8 years ago so figured I “didn’t have it as bad” and haven’t been paying much attention to labels that said things like “may contain gluten or wheat”. Whether I’m Celiac or not (one Dr. says yes, another says “just intolerant” ) I am convinced that it’s time to make a clean sweep at every in my kitchen and get more serious about this.
I know now that I’ve had this since I was a kid and since I had the genetic testing done, both my parents had it so I have 2 genes and am sure my adult girls and probably their kids have it too. One grand daughter is autistic, one gets a rash from the sun which really makes her sick, etc. Neither daughter will get tested or get their children tested and gets really mad when I bring it up so I don’t anymore. I just pray they find out themselves before it’s too late…when ever that is. I was only diagnosed about 8 years ago and am now 71. I know now I’ve had this since I was a kid.
I can’t thank you enough for your book and to opening my eyes to all the things that I’ve never known about Celiac. I never realized some of the problems I still have are probably related to celiac too.
QUESTION: I have never been to a Gastroenterologist. Is it too late? Would a good one, if I can find one, be able to still help or guide me further at this point? I’m scared of the ultimate consequences of this disease.
Thanks for all you’ve done for so many, Jennifer. I can’t wait until your bakery goes “on line”.
Sue
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I am glad you are felling so much better now. I recently started watching “blue bloods” and I was much saddened to see your departure in season three. The show truly suffers from your absence.
This may sound odd to some, but even through the criticism, there is a light. Word is out there that you have written this informative and wonderful book about celiac disease. I am sure that all of the hype has caught peoples’ attention. I am also certain, that someone heard the hype and wondered to themselves what all of this is about and maybe they should read it and then was helped by what they read.
As someone else stated, you can’t fix stupid…well, you cannot fix insensitivity either.
This ‘hype’ got word of your book out there….
I read your book and could not put it down! I have known about celiac disease for 50+ years! When I was a child a relative was diagnosed.
Take heart…you are doing good in this world!
God bless you, and please be like that little pink bunny and just keep going and going and going!
Thank you so much for the book! I received it as a christmas present, and devoured it in two days. I was moved to tears on multiple occasions. While not as devastating a case as yours, my celiac was also undiagnosed for about 20 years. My husband thought my constant stomach aches and depression and social anxiety were made up, or excuses to get out of doing things I didn’t want to do. Even coming from a family where auto-immune diseases are common, some of them seem to think it’s ok for me to have “just a little” or “hardly any” gluten, and that it’s ok to lie to me about food they bring or serve at family gatherings… The invisibility of this condition is almost as debilitating sometimes as the disease itself.
What a gift you’ve given all of us, in sharing your story and being such a public advocate for all of us. I cannot adequately express my gratitude, and my joy at finding another person who understands. Thanks you, thank you, thank you again.
If there was anything I could give back, I would – I would love to share the wonderful new recipes I’ve been finding. I love food too, and feel lucky that I do – because before my celiac diagnosis, I loved to cook and explore more unusual ingredients. Now I still have a wealth of non-gluten ingredients and techniques to draw from to cook delicious, healthy meals.
Jennifer, I am not certain if I commented before on your book. I think it has been on my list but never done, so here goes. I waited a few months after it was published to buy and read it, thinking what more could I possibly learn as a healthcare professional who had worked in clinical research, read all the MD specialists books, and keeps up on current research? Now aside from books for baking and GF grains and flour, I recommend to new celiac patients and NCGS folks Dr. Green’s book first then your book.
You capture the medical, psychological, emotional, and social consequences for those dealing with celiac like no one else. You address the steps towards regaining of one’s health and eliminating continuing symptoms with your all in approach. I found the liquid vitamins that your doctor recommended brilliant to increase the absorption and recovery of bodily systems impacted by the loss of vitamins and minerals over years- for some of us decades of time. The all encompassing nature of this disease as it hits a multitude of systems – for some even their psyche is not captured in any other publication. For me your noting of good days and bad days and saying it is OK to need a nap or rest if you need to, made a big difference In my life. It validated one of the big issues we fight with this disease esp. as we are healing or recovering from an accidental gluten hit.
Finally, I think most specialists who deal with celiac do patients a grave disservice by not telling patients – really being honest from the beginning that for many of us just eliminating gluten may not be enough. I was reprimanded by the director of a local celac group associated with a major area hospital not to tell new crliacs this. I said you realize if these folks go gluten free and continue not to heal to have symptoms because of temporary or long-term issues with other food sensitivities like lactose, soy, corn, etc. to not have newly diagnosed do a basic elimination diet including known food additives to cause problems lsuch as MSG and now carrageenan and alginates does a grave disservice because when their symptoms do not abate after going GF – you know what they do? They cheat and eat gluten. Great. People diagnosed with celiac esp. those who have gone undiagnosed for years or decades often have a tough road ahead of often more than just eliminating gluten, and your book captures the smartness, experimentation, and patience it takes to achieve the highest level of wellness with one’s body as is possible.
Thank you, Jennifer.
I wish I knew how to contact you privately to share my experience with celiac. Your journey has been a source of joy to me.