Being an actress and in the public eye for almost twenty years, I can count on one hand the number of times I’ve been in the press for anything other than promoting the project of the moment. If you had told me years ago that I would write a book so openly about my personal life, I would have said you were crazy.
When I was diagnosed with celiac disease, all that changed and I felt almost compelled to tell my story. This disease has taken many twists and turns and has been at the root of many unanswered questions in my life since I was a child. The pain and suffering, not only physical but emotional, is something I wish on no one. If there is one paragraph, even just one sentence in this book that helps you in any way to understand what may be going on in your life with your health, then that is what I set out to do.
I believe there are a few very basic needs for us, as human beings. We want to feel safe, loved, accepted, and heard.
Most if not all people with celiac disease are threatened in a big way. Feeling safe becomes something that doesn’t apply to you anymore. You are not just in the hands of doctors who are often not able to tell you what’s wrong—for most people, an accurate diagnosis takes years—but you are also at the mercy of every meal. Food becomes an enemy that you must keep your eye on at all times.
Feeling loved gets threatened when family, friends, and society don’t really get this disease, or at least not fully, or not yet. That can be very isolating at times, leaving people feeling unloved.
That brings me to acceptance. Everyone wants to feel a part of something. Not being able to conduct your life as everyone else does is not only hard on the social aspect of your life, but on your heart as well.
Finally, that leads me to the last basic human need, and to be honest, this has been the biggest single reason I have opened my life up and related my struggles to you: so you can feel like you can tell your story and be heard. I take you all the way back through my childhood, in the hopes that you will see in my early symptoms clues to help you understand yours.
I want to show you by example that not all celiac disease symptoms are stomach-related, and some symptoms can seem far-removed from your gut. I take you even further back, showing you that my mother and grandmother had symptoms, too, to show you that celiac disease can be passed along through families for generations, so you can look back at your own family history for clues and validation. When I finally found out I had celiac disease, I realized how far back it went.
My ultimate intention in telling this story is to help you find your voice. I cannot count the number of people who have written to me and come in to my bakery from around the world, just to say thank you for telling my story by telling yours. I want to give a voice and a face to this disease. Many people have been unheard for so long regarding this disease, as I was. Some were told they were crazy, some given a wrong diagnosis, and many are still searching for an answer. This leaves people feeling unheard, and as I say in the first chapter in this book, it is my experience that something happens to you when you go for so long without being heard.
Your soul starts to die a little. You stop voicing your opinions and concerns, your gut stops speaking to you, and you become someone who doesn’t believe their words matter.
If I say anything in this book that you hear, please hear this: your voice matters and your symptoms are real and there are people out there who will listen. You can be heard and you will be heard. I am here to tell you that I get it. I hear you.
Just finished your book….Bravo! Loved it!
Just read your book! I have an intolerance, which is worse than I thought looking back on my diet, I am going tomorrow to my pharmacist to see if there is gluten in my medicine!
I’m gone to tell my little brother, that he should also visit this
webpage on regular basis to get updated from newest information.
My web blog – one moment eye care
I bought your book with the attitude, “what am I going to learn that I haven’t researched already?” and was blown away. What I didn’t expect was a sense of vindication of actually being Celiac. The media has made me feel like a nutcase and I was noticing a change in attitudes of people around me because of “the doubtful media”. I will now stop apologizing for being Celiac because it exists and I know it. I also didn’t realize the continual healing process was more than just giving up gluten. Although I feel a million times better, I still stuggle with anemia and exhaustion. I now have put all the pieces together of when Celiac came to be for me, 20 years ago.
It’s been a full year since I was diagnosed and 9 months for my 5 year old son. I realize now having the mono virus back in college was my trigger. I don’t recall issues as a child, in fact I lead a happy, stress free life until college happened. College, of course, brought on the booze, pizza parties and late night studying. That’s when I recall my first bout of IBS, sinus issues, insomnia, weight fluctuation, ammenorrhea and depression. I was a lazy eater and loved to dine out. Making something without it coming from a box and from scratch was a weird concept to me. I worked for a micro-brewery too and only drank true craft beer. I too always scoped out where the bathrooms were when entering a room, just in case. Doctors didn’t say much over the first ten years. Just said I had IBS and to stay away from spicy foods and stress. Since my IBS would strike no matter what I ate, I shrugged it off to stress. Subconciously, I refused to accept nutrition as the culprit since I hating cooking so much.
The last ten years, I had moved on from the brewery and married an awesome man. Surprisingly enough, he put up with my snorting nose morning and night and the emergency runs to the bathroom. My nose had progressively gotten worse over these years and I couldn’t even distinguish whether I had a cold or allergies. If there was a flu outbreak, it was enevitable I’d be the first to get it. My insomnia had gone away but I slept for hours but never felt fully rested. I struggled to get out of bed and always had dark circles. It took a year and a half to get pregnant and the dr’s discovered I had PCOS which was causing my ammenorrhea…therefore I wasn’t regulary ovulating. Luckily, I was blessed to have my first child. My pregancy was relatively normal except I developed extremely low blood pressure and became dizzy and extremely tired. I delieverd a boy and he was an extremely happy baby but I was not. Post partum depression hit hard and was unable to breast feed properly. This left me with the feeling of inadequacy and true sadness. I was also noticing pain in my lower arms. My lower arms were starting to tingle and feel numb but I shrugged it off as the baby bucket seat was heavy to hold. With exercise, my post partum went away but the arm pain didn’t. I never questioned those weird sensations and figured it was tendinitus. After having my second child a couple years later, the arm pain got worse and I still shrugged it off. My low blood pressure continued but this time I was focused on finding out why my sinus’ were stuffed ALL the time. After waiting months to see a specialist, he determined I had a diviated septum and needed surgery. I would be fine after that. So I got the surgery and didn’t notice a change in the slightest. I went to an allergy specialist and he told me I must have arbourne sensitivities and allgeries to animals…food allergies were not even mentioned or tested.
2 years ago, my arm pain became unbearable. They began to burn and feel weak along with the tingles and numbness. By this point, my stomach felt like it was rotting from within and my depression had come back along with weight gain. I had heard about Celiac disease but also shrugged it off. I thought if I had it, I’d be crapping my pants after eating a bagel (my usual am breakfast) and I’d be super skinny. My IBS would come out of nowhere…strking mostly when I ate out. In fact, my pivotal moment when I decided I couldn’t live like this anymore was after eating an Indian Buffet. I felt sick as soon as I left but it wasn’t a food poisoning kind of sick. I needed to find a bed to pass out in. I couldn’t process my thoughts and was in a state of confusion. By this time, Celiac was well known and my dad tested negative but was trying gluten free anyway and felt better. I asked the dr to test me for it and my blood test came back negative too. So the dr referred me to a gastroenterologist and a neurologist. He then said the next step would be MS and diabetes testing. Of course where I’m from it takes months to see a specialist and I just didn’t want to wait. My girfriend suggested trying a primal clean eating diet for a month and reintroducing gluten back in a month. I cleaned my pantry and went for it. I didn’t go through a detox though, in fact I felt glorious after a week. I didn’t realize the bloating and gassiness I had before was not normal. I had a sense of clarity with my thoughts and I was able to have a “nice” bowel movement. My clothes fit completely different and I was happy. I felt strength back in my arms and the tingles had subsided.
I was too afraid to go back on the gluten and I was still waiting to see the specialists. After 3 months, I finally got my neurologist appoitment. I told him I felt better now that I was off gluten but told him of all my previous syptoms. He left the room and a nurse zapped me with a machine which determined I must of had “mild” tendinitus. He did not see a gluten connection with my pain.(If that pain was mild, then I feel for any major sufferers out there). I waited for another 3 months and finally had the gastro specialist appointment. I told him my story and how I feel better now that I’m off gluten. He said I’m most likely suffering from IBS but felt it was important to do an endoscopy to get a true diagnosis(thank god). He also recommended a colonoscopy to rule out any bowel disease. He then said I was on the low scale of importance and gave me an appointment for this 6 months later. I didn’t care, I gave myself an intolerance diagnosis and was happy with it.
As I waited for this procedure, I started to notice that maybe my son was maybe intolerant too. He was hospitilized for pneumonia twice at 15 months, had surgery for tubes in his ears at 2 years, speech delay, extremely irritable, had itchy skin rashes and foul mushy bowel movements. He constantly complained of tummy aches and his meltdowns were nothing like his brothers. He seemed to be another world and incoherant to all us around him during his meltdowns.
In short, after my procedure, the dr called to tell me there was indeed damage in my intestines and diagnosed me with Celiac. (I painfully ate gluten a month before the endoscopy). My son’s dr, reluctantly ordered a blood test even though I have Celiac. Mentioned blood tests are too invasive for little ones and he preferred to wait for any noticeable deficiencies. It frustrated me that dr’s would rather wait to see stunted growth than to be proactive. Needless to say, my son’s bloodwork came back positive and he didn’t have to go through the prep work of an endoscopy…which I’m grateful for. He now doesn’t complain of tummy aches, he’s not constantly scratching, extremely focused and wakes up happy. Those freaky meltdowns are of the past now.
I’ve learned from your book is the need for vitamins. Our dr’s just told us to avoid gluten…end of story. Last round of bloodwork I had showed I was anemic so that prompted my dr to recommend iron but there was no mention of anything else.
Thank you Jen for your advocacy. I cried to myself watching you on Jon Stewart. It was nice having someone get it and talk about it. Although, I couldn’t possibly compare myself to the severity in which you went through and other Celiacs, I now realize how proactive and cautious we need to be. Even after 20 years, I feel blessed I caught it now and even sooner with my son. Who knows how bad it could have gotten. I have to remind myself of others ignorance to it and focus on what’s making me feel better.
I would have done this via video but I can’t stand how I look on video…now that’s real painful to me.
Thanks again
I can not possibly thank you enough for writing the book Jennifer’s Way, you are an inspiration, a glimmer of hope for so many people including myself. I had been truly ill for a while and like others you probably have heard from, I had also been to doctors trying to find out what was wrong with me. After reading your book I realized that my symptoms had been going on for a while and had a lot of stomach discomfort. I was virtually exhausted to the point that I would just sleep and sleep and sleep, I could not muster the energy to get up and do anything. I explained to my friends if the doctors can find out what’s wrong with me I am so ill, I believed I was going to die. I too did a lot of research online and thought I had IBS like symptoms. I begged my doctor to get me some help, and when she wouldn’t I moved on until I found a doctor that finally heard what I was saying and sent me for a colonoscopy, CT scan, XRays, Liver tests, Knee injections and finally and endoscopy and biopsy. I was diagnosed with Celiac. It has been trial an error process for me but after almost a year I am starting to feel like myself again. Every once in while I still eat something that makes me deathly ill (at a restaurant that stated they had Gluten Free Items that really weren’t). My Niece told me about your book, and told me I had to read it (she was so persistent she mailed me a copy). When I was reading your book I started to cry… not sure if it was because I realized how bad I was or just that I was so greatful that you took the time to be so informative and gave me information that I couldn’t find elsewhere. You are an Angel in my eyes… thank you Jennifer, I know now I can heal, even though it will be a life long struggle, you made my struggle manageable.
I wanted to thank you for writing and sharing your story. On a day when I was once again filled with despair over my health and searching Amazon for a miracle. Your book just happened to appear on the screen. I was a fan of your work-you always seemed so natural on the screen, and I was not aware that you had been struggling with your health. I was drawn to your story and reasoned to myself that I could buy one more book on the subject, and then I needed to move on. Quite frankly, it has been a very dark year of depression and frustration over my never ending health problems.( Basically it’s been a lifetime of one health crisis after another, but no need to share them all here.)
Your book came right before Thanksgiving, and I immediately sat down and read it all in one sitting. I couldn’t put it down. Your story was eye-opening to several symptoms and mirrored so much of my childhood that I never realized were probably all tied to the years and years of health problems and frustrations with the medical and insurance communities. As well as un-supportive family members that like to treat you like you should just suck it up and get along. Your book as renewed in me a fight for my health that I had lost. Most importantly your words have given me HOPE. It’s been a really long time since I have had any kind of hope for a future filled with goals and dreams instead of despair and pain. I know I have a lot of healing ahead of me, but thanks to your wonderful book, website, and bakery (I am so excited for safe and healthy bagels that won’t make me feel like I’m dying) I have a renewed will to fight for a quality of life that I have been afraid to even dream about any more. I cried tears of relief while reading the book, and the past few days I have cried tears of gratefulness for a chance to heal. Thanks again for opening up your life to help those of us looking for answers and continuing to inspire us forward with your daily commitment to healthy gluten-free options and using your to voice to spread useful information to the masses. I truly believe now that I don’t have to be fearful of food, that I must fight for myself, that I deserve to be healthy, and I can emphatically say that I will never choose to eat Gluten again! Thanks!
THIS AND ALL THE THANK YOU MESSAGES I RECEIVE – MAKE- MY- WORLD!!! TRUTHFULLY. I am so moved that i have given you some hope back. Thats all we want at times. JUST HOPE and someone to say, “I UNDERSTAND”. Well I understand. I understand your pain, your struggles, your good and bad days. Its a long road that twists and turns BUT YOU CAN FEEL BETTER!!!!! Please do NOT stop finding answers that work for YOU. DOctors that listen and friends that get it! YOU are worth that much. YOU DESERVE TO FEEL WELL!!!!!!!
All the best to you
Jennifer
Jennifer, I just wanted to say thank you for telling your story. I was just diagnosed November 2014 and I received your book as a Christmas gift. This was one of the best gifts I got. Your book has been helping me a lot and continues to help me as I continue reading it. I was just diagnosed at 25 but I have had problems since I was a child and it helps knowing that there are others who went thru some of the same struggles that I have. Again thanks for writing your book and telling your story it means a lot to me.
Hope I can buy your book from your bakery. Sadly I’m a vegetarian as well as Coeliac. A real joy to feed. ha ha