We celiacs need to get the word out, the CORRECT word out, about what this disease is REALLY about, and I need your help. I know how so many of you, like myself, have felt so unheard with this disease. Doctors, friends, even family suggesting that maybe your physical symptoms were somehow in your head.

Well, now is your time to speak your MIND, raise awareness, and help others suffering like you. Here’s what I need you to do.  I’d like to create a Campaign for Celiac Awareness in a short film version by combining your video stories with mine.

Here is my video plus a handful of others that have been sent to me by other celiacs.

Warning: array_slice() expects parameter 1 to be array, null given in /home/content/06/8197906/html/wp-content/plugins/vimeography-pro/lib/renderer.php on line 25

Warning: Invalid argument supplied for foreach() in /home/content/06/8197906/html/wp-content/plugins/vimeography/lib/helpers.php on line 14

So grab your video camera or your iphone and put yourself on tape!

If you’d like to participate, I’ve listed some helpful and *required guidelines below. Please note that we will need release forms signed to allow us the use of your video, your story and your voice. The purpose of this video is to raise awareness and inspire our health community to learn more about this disease.

Required Guidelines:

All entries MUST be Celiac.

Your video must begin with: “My name is ____________ and I’m a Celiac. It took ___ years (months/weeks) to be diagnosed.” And then proceed to tell us about your diagnosis process and your journey. How long did it take you to get a proper diagnosis? Were you given helpful instruction on how to survive and become healthy after being diagnosed? Please list examples of misdiagnosis and/or other physical/social/mental problems that came from being undiagnosed for so long. For example: infertility, cancer, nerve damage, hair loss, osteoporosis, loss of friends or social events, depression…

Please keep your video under 3 minutes.

Please also sign and send this release form along with your video submission, allowing us to use your footage. Also understand that there is no guarantee of usage. [Click here to download the required release form.]

I understand that most of us are not video production professionals, however please try to make sure you have good, even lighting and are in a neutral environment. Avoid logos on your clothing and in your surrounding environment. Highly visible logos may prevent us from being able to use your footage. Please also send high resolution footage if you can (the larger the file size, the better the resolution).

Submit your videos and your release form to [email protected]. Please note, anything over 20 megabytes will not be accepted by our email server, so you might consider using one of the following services to send your large file:
- wetransfer.com
- yousendit.com

I’m so thrilled to join forces with you. Seeing your faces and hearing your stories live on film will be close to meeting you in person, and I can’t tell you how much that means to me! We need the TRUTH of this disease to get out there, and with your help we can get it there. Many voices are louder than one. Make your voice and your story known.

I hope to “see” you soon. Much love!

~ Jennifer Esposito

This Post Has 81 Comments

  1. Christy Wickenkamp

    Why just Celiac? What about those of us with the same auto immune disease? Only difference is that our immune system creates antigens that identify the part of the gluten that matches our cerebellum. Celiac picks up a different part that matches the intestines. I experienced the same thing you did as a top neurologist at Mayo told me it was all in my head. I was finally diagnosed, after being told by other doctors that I would be dead by the end of the year because I had some degenerative spinal disease. Thanks to an article in the Liiving Without magazine, I am still here today.

    I held a symposium that focused on gluten free, regardless if someone had Autism, Celiac, Gluten Ataxia or ADHD. Interestingly most people have many family members with one or more of these. I had the Celiac Sprue association, a Autism specialist and nutritionist at the event. I was amazed when the former president of the Celiac Sprue Association asked me where I thought Gluten Ataxia belonged. They had been conversing with the National Ataxia Foundation on who should own this.

    I have to ask what makes Celiac so special? We should be educating people about what a auto immune disease is and how your body will choose to attack a specific part of your body based on the section of the Gluten DNA it chooses to recognize as a unfriendly invader. Which probably all started when you had a virus or bacteria that had the same section of DNA code in it. We should educate them on the studies that show how gluten cuts of blood flow to the brain and then allows it to saturate the brain which by the way cause anxiety and depression. Maybe you should consider raising Gluten Auto Immune Disease awareness.

    Thank you,

    1. Deborah

      I agree with your comments Christy. I was going to do this, but I am not diagnosed Celiac. I probably never will be because my doctor gave me the least sensitive test, and then I went gluten free because I felt so much better without gluten. I’ve had multiple problems, including melanoma, chronic urticaria related to the nervous system, anxiety, various digestive tract issues, dysphagia, eczema, unexplainable arthritis and joint stiffness, numbness and weakness in extremities, positive ANA (RNP), poor balance and coordination, restless legs, migraine, insomnia, high liver enzymes, tendency toward leg cramps my whole life, and I’m always hungry. I’m now allergic to tomatoes, intolerant of any stimulant (caffeine, cola bean, chocolate, even ginseng), and gluten-sensitive. I found a list of 300 common symptoms and conditions potentially due to celiac disease from the university of Chicago celiac disease center, which was eye-opening. Here I had all these seemingly unrelated problems, which now indicate to me that I’ve had an autoimmune condition all along.
      A link to the full the list is here http://www.cureceliacdisease.org/medical-professionals/guide/symptoms
      Jennifer, as I read your book, I was taken aback by the parallels to my own life. Yours was much more severe, and slightly different, but the ages at which I had certain conditions come up was very similar to your life. And now I see that my mother was probably gluten intolerant too. She struggles with Colitis her whole life and died at 53 from colon cancer. I’m doing what I can to not follow her lead.
      Take care

      1. Lucy Walton

        Dear Deborah, I cannot believe the parallels between my story and Jennifer and yours too. I have a huge number food intolerances in addition to the ‘usuals’ dairy, soy and egg yolk. My family have also suffered with gut health issues and depression and I am now confident it is linked to celiac disease.
        I found out I was a celiac earlier this year as I have the HLA-DQ2 gene but I am now going to go through my house and scrub and clean and purge all my toiletries and cleaning products and everything I own to remove as many toxins as possible and hidden sources of gluten. It’s going to cost a fortune but I guess that’s just the way it is. I’m glad this support network exists – without it i would feel very lost! Lucy x

    2. Beth Adams

      I agree! I haven’t been diagnosed Celiac even though my doctor is pretty sure I am… The gluten challenge (I had been “off” gluten to the best of my knowledge for three years when someone finally suggested the biopsy) made me too sick and I didn’t see the point. I did however get diagnosed with EOE. I thought getting the celiac diagnoses would be hard to live with..…. this is much worse! No gluten…or dairy, nuts, fish, soy or eggs.
      Auto Immune diseases, I have two that I know of, are all hard to live with emotionally and literally until you learn how to work with them!

    3. Brenda

      It is now being recognized that there are over 200 symptomatic manifestations of gluten sensitivity or gluten intolerance that can result in disease. Celiac, it has been determined, is actually one of the more rare of the family of immunologic diseases that can result from the systemic damage resulting from gluten in the human body. Therefore, we as a community suffering from damage caused by the same poison should not minimize nor should we exclude those individuals that demonstrate the serious and debilitating gluten manifestations that exist apart from the more rare Celiac diagnosis.

  2. เช่า ts 3

    Hello there, i have faith that i discovered an individual been to my website well, i came to come back a decide on? . I’m seeking what you should improve my website! Perhaps its sufficient to make use of several of your opinions!

  3. Allison shea

    Than kou Miss Jen for saying out loud what I have veen feeling for years. Your interview on Katie could have come put of my own mouth. I have been saved because the food was killing ne. Keep up your afvocacy and anything I can do to help, i am on board!

    1. Michelle

      Me too!! I miss you on Blue Bloods…which is how I found this blog. Thank you so much for creating a community. Most people in my life don’t understand. They are greatly supportive but don’t understand what the symptoms really feel like and the emotional toll that this takes. I’m tired of fighting with my body:/

      Thanks again, you’re awesome.

  4. Linda Allebach

    Jennifer, please know that there are people you’re helping who have not been diagnosed with celiac but who, like myself, have had numerous other autoimmune diseases. The response from many doctors has been the same, that I’ve imagined things, that I need to have “calm” mealtimes, that maybe I should see another “type” of doctor (translation, a shrink). I’ve had at least 7 autoimmune diseases in the last 40 years – they come and go, they aren’t fatal but my life has been completely altered as a result. Alopecia areata, iritis, IBS, rheumatoid arthritis, psoriasis, to mention just a few. The only relief for me on the worst, IBS, has been to radically change my diet (and yes, I figured this out through my own research) and since I now eat only the Special Carbohydrate Diet (SCD), I have seen great improvement in the last 5 years. My doctor continues to look at me like I am a little crazy but now says that medical science does not have the answers for me – omg. Sort of like Dorothy in Oz after the Wizard dispensed a heart to the Tinman, a brain to the Scarecrow, and courage to the Cowardly Lion: “Oh, I don’t think he has anything in that black bag for me.” But there IS hope and help and healing and I just wanted to thank you so much for bringing the subject to the public. Wishing you lots of success with your book and although I really really missed you on Blue Bloods, it certainly appears that God had another, much bigger plan for you. Muchas gracias amiga!

    1. Sarah Rose

      You need to find a functional medical doctor such as Amy Meyers in Austin or Susan Blum in New York or read their books. Dr. Alejandro Junger has one as well. You more than likely have leaky gut as well. All of these doctors have protocols for healing your gut as much as possible. This is a long road ladies, but we can do this!

  5. Jan

    I am 80 years old and have never been diagnosed. Found someone online who put me on a detox diet starting with meat, fruit and veggies. I have never been able to add anything to that! No, I cannot use the recipes. Wish I could find a GOOD doctor. Too late to be diagnosed.

  6. Ed & Dixie Farrell

    Dixie and I want to tell you that you were a fabulous actress on Blue Bloods. We wish that you could continue the portrayal of a detective on NYPD. It hurts both of us to learn that you have been suffering so much and for such a long time. We both pray that you have recovered enough so that you may live a happy life. We wish you the best!!!

  7. Arlene R. Tumminello

    Hi Jennifer. I also am from Brooklyn,NY. I was diagnosed w/Celiac at age 2. (1944) descended belly and bulging eyes…I was malnourished… A pediatrician told my Mom to only feed me Bananas. I ate bananas for 2 years…and got better. After that I ate everything, and was sick for over 50 years. Every dr. I went to…ignored the symptoms and never responded to me when I mentioned the word Celiac. Approximately 15 yrs ago…I had an endoscopy and it was positive for Celiac. I did all my own research about this disease. I am now an official CELIAC GURU. I can cook anything and teach anyone diagnosed w/ Celiac better than any doctor can. I worked for Whole Foods Market for 8 yrs and showed customers how to shop and cook gluten free. As a side note, I was born highly allergic to Eggs. Since I was 9 mon. old. Therefore, I eat gluten free and egg free. If you should ever want to reach out to me, do not hesitate to do so. I am a wealth of knowledge. I even show people how to look for hidden ingredients….. I saw u today on the Chew, then went on email…and a friend of mine tole me to check your site out….good coincidence. I look forward to hearing from you. I am presently unemployed, and taking care of my son, 47 yrs, who has end stage Liver Cancer Stage IV. Thanks for taking the time out to read my story. Wishing you the best…. I am certain I can help some people with this disease, since most doctors do not know the first thing about shopping, or cooking…. Ciao

      1. Wendy Marchand

        I also had the same problem. I was finally diagnosed with Celiac and had stopped eating Gluten but would have bad reactions to some foods. My doctor did a test for SIBO (Bacterial Overgrowth) and it came back positive. This is why even when I ate sweets that were Gluten Free I would still be sick for days. There is treatment for SIBO and I am feeling much better. Hope this helps!

      2. Brenda

        Hi…..I was on a gluten-free diet for two years, and while I felt better, some of my symptoms still remained. It was only recently that I discovered Dr. Osborne’s Gluten-Free Society website where he explained that 92% of those on a gluten-free diet were still not symptom-free. I was intrigued, so I read on and watched the videos he posted that explained grains and the scientific response the human body has when allergic, sensitive, or intolerant–and the differences between those three. I learned something fascinating. Most commercial gluten-free foods are made of corn or rice flour or derivatives thereof. It did not occur to me that rice and corn are considered green and that the endosperm of those particular greens contain gluten enzymes as well. This may explain why my symptoms have never completely disappeared, and that may explain why this is the case for the other 92% of people on a gluten-free diet, according to Dr. Osborne. Corn is used in so many ingredients in the market today, four instance cornstarch, corn syrup, corn oil, and even in ingredients like vegetable oil, natural flavorings, etc…..things you might not consider. I realize that if I was sensitive or intolerant to rice and corn, I could still be ingesting a large amount of these gluten enzymes without even realizing it (keep in mind that there are multiple types of gluten, and each grain contains a different type of gluten). Long story short, I illuminated all greens for my diet and all my symptoms disappeared. I would encourage anyone reading this to try the same if you continue to have symptoms on a gluten-free diet.

        1. Brenda

          I was dictating my previous post and later noticed that where It says ‘greens’, it should say ‘GRAINS’. That’s where my southern accent gets the best of me–lol.

        2. Rebecca

          Wow… Thanks for the information! I found this very helpful as I am a newly diagnosed Celiac sufferer. I was diagnosed allergic to most food four months before the Celiac diagnosis. I knew some of these foods were related!

      3. Brenda

        I was dictating my previous post and later noticed that where It says ‘greens’, it should say ‘GRAINS’. That’s where my southern accent gets the best of me–lol.

  8. Alexa

    I don’t specifically have Celiac Disease but I have a very high wheat/gluten intolerance–it took over a half a decade for me to get diagnosed properly!!! I was sick for YEARS…..constant colds, sinus infections, etc…..for two years straight I could not shake a cold–like my immune system just didn’t function. I would cough to the point of almost vomiting (and often did) after most meals. I had constant sinus drainage and skin problems. I felt sluggish all the time. I was miserable. I had been to numerous doctors and had been tested for all kinds of things and it wasn’t until one at a walk-in clinic sent me to be tested for food allergies. The immunologist did blood work and it came back with the high wheat/gluten problem–I was in shock that such a simple thing had caused so many problems (and also that it took that long to get diagnosed!!!) As soon as I cut it out of my diet nearly all of my health problems I had suffered from for years went away within 24 hours!!!! I went for almost three years without even catching a cold!!!! That was several years ago and now I can tell within minutes if I’ve eaten gluten because my lungs start filling up with sticky fluid that makes me choke and cough–my co-worker got diagnosed with Celiac disease the same month I discovered my wheat problem–since then it’s been amazing to hear how many people are diagnosed and no longer suffering once they eliminate it from their diets!!!!

    1. Jantina

      I also have an intolerance, when I have gluten within 20 minutes, my asthma acts up, I have a severe migraine and I end up sick for at least two days ( and yet I still am not very careful…dumb me)!

  9. BR

    My mother has lived with celiac condition for 51 years. She is 83 years young. She has never strayed from her diet and she looks like she is 60.

    She has counseled many young celiacs but finds the younger generation does not have the will power to not stray.

    Being one of her six children, I grew up eating her diet. She always found a way to make the found just as pleasant as regular diet of gluten products. I trust Jennifer’s recipes can match those of my mother’s.

    Keep up the good work

    1. Tatiana

      Hi BR, could you please share what foods your mom excluded from the diet besides wheat, barley, and oats? I’just started a few months ago to live without these foods and feel better but I think there are other foods that defect me as well. Thank you very much!

  10. Lori McDougall

    I just saw you on the John Stewart show talking about your book Jennifer’s Way. I want to thank you for putting the word out there about Celiac disease! I was diagnosed in 2002 and was lucky enough to have very astute doctors recognize my symptoms and diagnose me before I was very sick!
    I do get tired of people thinking this is a fad although the gluten free food has improved greatly in the past 12 years, in the super markets and restaurants. I am looking forward to reading your book!

  11. Eve

    Saw your interview on Jon Stewart, and am planning on buying your book. However I have a bit of a bone to pick with you. There are some of us who are “simply” gluten intolerant, and for us it is not a fad. My doctor suggested that I try gluten free to see if it would help some of my vague diffuse issues. So far (one month in) the biggest change, is the significant loss of abdominal bloating. The doctor has hopes that in time my anxiety and panic issues may subside. No, did not do any of the tests, as I do not trust them, given my daughter’s experience. My daughter had the blood test in New Zealand in 2006, test results were inconclusive so she was not allowed the biopsy test. Given the issues she was having she decided to go GF, and a number of issues over time resolved themselves. She has a couple of other autoimmune issues, so we suspect celiac.

  12. David Peacock

    It began to truly manifest itself in 1999. Prior to that, I had always had bouts or ringing in the ears and unexplained tiredness, but i quickly dismissed it. In 1999 though i started to have a constant headache accompanied constant ringing in the ears along with a pressure sensation in the inner ears. I went to the doctors, got all the normal tests, and of course, nothing was found except my white blood cell count was a little high. I had MRI’s and CAT scans and nothing was found. One Neurologist suggested i had some form of cerebral arthritides, but the symptoms didn’t match. Things started to get worse as the years progressed, i became sensitive to light and at the same time began loosing peripheral vision and loud noises were extremely painful even though i was losing my hearing. Again, more MRI’s and again, no results. Over time i began to have unexplained panic i could not handle any stressful situation. It became hard to think as though i was in some brain fog. Someone would tell a joke and others would laugh and i just wasn’t quick enough to catch it. This is the point when the doctors start handing you sample packs of anti-depressants and prescribing zoloft. But i wasn’t really depressed. As things progresses i began to have very painful hair roots, they just hurt to the touch, strange inflamed pimples and cysts would appear on my head and neck that were so very very painful, the hair follicle roots were like needles being pressed into my scalp and the weirdness continued, i became sensitive to milk, i never was as a child. In fact, i began to sensitive to a lot of foods that were at one time no problem to me. Then i started having blood in my stools quite often. it was always some new strange symptom after another. i am almost completely deaf now though i still have the ringing in the ears. After requesting extensive blood test from my family doctor “Test me for everything!” i said. The results? i was diagnosed POSITIVE for CELIAC SPRU along with Rocky Mountain Spotted Fever ( which i always test positive for and is considered a false positive by the doctors because its not SUPPOSE to be chronic). The Doctor said that i was the first person to test positive locally through the blood test!
    Now, i try to eat Gluten free,,, but its very hard!! and it’s not just the gluten now, it’s other things like Vinegar and dairy.
    My last doctors visit, he did a ultrasound of my liver. the results showed a hepatitis LIKE damage to my liver. Apparently my body has been ether fighting something for a long time or had chronic inflammation. I blame the Celiac. I still have the constant headache and i still have the cognitive issues and arthritis but i can tell a difference when i TRULY stay away from Gluten.

  13. yalmot

    I don’t know what I have physically affecting me but I understand the treatment you didn’t get for many years because any doctors I get appointed to want to get me in & out w/the least treatment possible take this pill & we’ll see how it works in three months come back @ we’ll see how it’s working. I’m so tired of trying to get help.

    1. Ahmad

      October 22, 2012 at 7:51 am Hi my name is Kristie Buford owner of Your Way Cuisines an internet based conmapy in Lafayette, LA. I had my first GF expo show this past weekend in New Orleans. It was a great experience. My product as of right now is Gluten Free Roux for gumbos, stews, etoufee and more. We had a great response from the community. I am looking to do more expos, however I don’t feel I am ready to travel across the country yet. Do you have any shows coming up in the Louisiana, Houston, Dallas, Missippi, Alabama area? I would appreciate more information as well. Thank you, Kristie Buford, Your Way Cuisines

    2. Eddy

      August 12, 2012 at 10:27 am If your lads like pizza, then you can make a very nice pizza using mashed paotto and gluten free flour as a base. You can also vegetables to the sauce. Soups are also easy to do, especially if you have frozen mixed vegetables. You can bulk up bolognaises and curries by adding extra vegetables to them as well.

  14. Tatiana

    I’m so glad I caught you on the show and now am reading these posts that are also educational for me. Four years ago I was diagnosed with autoimmune atrofic gastritis and pernisious anemia, but my doctor honestly admitted he didn’t know anything about this disease. The only recommendation I got that I have to do shots of B12. I also have osteoporosis, numbness in my body parts and big problems with staying asleep at night. i also have lupus in inactive form right now. The blood test showed no celiac but i’m certain i have food allergies. After awhile and searching on line, I went through different diets but can’t figure out the allergens. I stay away from gluten for months now, I feel better with my stomach but still have other problems. What is the best test to go through to figure out foods afecting me? I have strong will power and suffered enough to stay on the diet, I just don’t know what foods to avoid. Thank you very much for you recommendations!

  15. Diane Davis

    When I saw you on the John Stewart show, I cried. I am 49 and I have had celiac my whole life, but was not officially diagnosed until 2001. For the past couple of years, I have been struggling with my disease and the negative ways it has been affecting my life. I am really sick and tired of people not understanding what I go through on a daily basis. I cry everyday, I don’t sleep or eat much, I am physically and mentally exhausted. Recently, my boss has decided that she is allergic to gluten and is now the gluten expert. But, has no sympathy for me when I am experiencing an episode of being exposed to gluten. These are the type of people that I want to punch in the face.
    Anyway, I do know that I am not alone in my frustrations and I am thankful for your book. I am going to buy it and read it and pass it on to my co-workers. Maybe they will finally get it.

    1. Emanuelle

      August 12, 2012 at 2:36 am The book has a lot of good info in it as to how to cook and live gluten free. However the book does not mark in the reecpis which items you need to make sure are gluten free (it notes early in the book that there are some items that you will need to make sure are gluten free, the other GF cooling books i have bought and used have marked every item in the ingredients list. It is a good starting point, and the BBQ meat loaf (page 210 if i recall correctly) is AMAZING, but the other reecpis in the book i have tried so far have been pretty bland, maybe i just so far have chosen the wrong ones but compared to the other GF cook books ive used this has a much lower percentage of great reecpis -matt

  16. Kevin Billingsley

    Hello Jennifer,

    Thank you for your book and telling us about your journey. I was diagnosed 5 years ago. It took countless doctors to finally come to that diagnosis. It was at least 15 years to finally figure it out. But I am thinking now that it was all my life. I have been in and out of the hospital since grade 5. From then on I just kept getting sick, then better,sick. In between the diagnosis and my childhood I started having major food allergies. Most off which I still have today. I was severely anemic. Countless times in the 15 year long diagnosis. They would always get me on iron and other supplements. I also had a lung removed. On the final time my anemia was so low that they had no idea how I was even standing. They said my count should have been in the 40′s. I was 4. That is when they freaked out. They did a blood test and were concerned that I may have cancer.
    I finally got the news. Good news. You do not have cancer. Bad news. You do have celiac disease. What the hell is that I asked. Since then it has been a struggle to say the least. It was a fast learning curve. I stopped eating gluten right away. Bought a whole new kitchen. 6-7 months later and they did the endoscopy. Yep. You have celiac. My small intenstine was still 75-80% damaged. Looking back there are so many signs that the doctors should have picked up on. I guess there is no money in it for them so bother.

    What brings me the most joy is that I have meet another celiac. She was just diagnosed 2 years ago when we met. I have been able to help her through the hard times. And she helps me through mine. No one outside truly understands the pain that we do have to go through on a daily basis. Hopefully someday this will change.

    Thank you

  17. David

    I understand that feeling for sure. Hang in there and keep researching. The biggest help i have gotten is from family and friends that help me eat right and point me in new directions.

  18. Sam Chapman

    I finally self-diagnosed as extremely gluten intolerant 3 years ago at age 53. My life had become miserable and I was practically nonfunctional in many ways. I may be a celiac, but I’ll never know as I will never get on gluten long enough to get tested. Just a crouton would absolutely tear me up.

    I am frustrated at and sick of the media and many in the real world calling the gluten free diet a fad. I’m glad to see people like Jennifer helping expose the truth about the evil of gluten in many people.

  19. dellie

    I cried when I watched Christine Strong’s video. Like her, I still have symptoms. I am 100% gluten free, so I suspect the damage to my gut from gluten cannot heal completely due to being undiagnosed for over 35 years. I feel isolated most of the time. We don’t realize how our social lives are so centered around food until we can’t eat what we don’t cook themselves.

  20. Jolie Erickson

    I just saw you on the Daily Show. I feel your pain – I hate going out to eat or eating at other people’s houses. I hate even asking about gluten at restaurants because people make fun or don’t believe it is a problem. Even my father gives me a hard time about it. I have not been diagnosed – I had a blood test that came back negative and the doctor gave me a prescription for IBS. Since going gluten-free, all of the symptoms have gone away: the severe bloating and gas, burning diarrhea, constipation, and joint pain, and I started menstruating again (I hadn’t started again since the birth of my daughter TWO YEARS before). And the anxiety and panic attacks are reduced but not gone. The thing is, whenever I doubt myself and eat gluten, the bloating and diarrhea are severe, so much that I can’t stand to put it back into my diet just to try to get a positive test. So I call myself “intolerant.” And I just avoid eating anywhere but home, and I pack my food with me wherever I go. I just wish people would not make fun of it – there are times when I truly hate eating.

  21. Jackie Shea

    I bought your book for my kindle..I’m halfway through and I can’t stop crying. Over the last several years I have been to the doctor so many times and every time I got a separate diagnosis for something. We had been rear ended in a car accident in 2011 and I ended up with sciatica..I’m only 28…after a ct scan they found I had a buldging disc which I attributed to this but they also found I had disc degeneration. Over the last several years I have been sick with something every month and figured becayse I teach little kids I picked up somethimg in my classroom. I had a random cellulitus infection in my leg last year and they couldnt figure out why. In the fall I ended up in the er because I couldnt move and had severe abdomen pain..ultrasound came back negative and I was told blood test came back normal..my blood tests have always been normal so I’ve been told. Throughout the year I would wake up with horrible shooting pains but like the doctors said” nothing is wrong with you” I ended up back in the er in may 2014 for same pain..they said I had sludge in my gall bladder and it was a little inflammed and they recommended I have it removed..I thought ” yes! They figured it out” long story short…I never really recovered from the surgery..I atw pedilyte pops toast and crackers..the pain never stopped..I lost 15 pounds in 3 weeks. I ended up back in the er 2 more times that week of surgery once by ambulance..they gave me a dx of constipation and unknown abdomen pain and sent me home with atavin..I said my chest hurt and I felt like I was having a heart attack..I was reassured that my xrays were clear and ekg was normal.I kept having pain but was afraid to go back to the er again.I called the surgeona office and they said they’d order more blood work. I was told it came back normal and that there was no clinical reason for my pain and that maybe I needed ” help”. I asked for a ct scan but they wouldnt order one..my pcp took their side and said to keep taking 2 atavin and that the pain was from my muscles rebuilding and I’d be bettet on monday…I switched hospitals and surgeons..the new surgeon told me something was wrong because my liver enzyme levels were in the 400s..he ordered a ct scan and found that my duodenum was inflammed and referred me back to gi..he did blood tests and biopsy and I just got diagnosed…even for my follow up with the nurse in his office who obviously didnt read my file was trying to convince me that I didn’t gave it because joint and muscle pain, flecks on your finger nails, panic attacks and heart palpitations, frequently going to the bathroom, tingling in hands and feet aren’t related to your stomach” she even had the nerve to ask if I had a traumatic childhood…again making me feel she thought this is all in my head! when she checked back with the doctor she said ” oh you do have celiac disease! I didn’t really have time to look over your file” and then she said all of those symptoms can be related to CD. I cried and have cried since..I was told dont eat gluten or dairy and theyll retest in six months. Ive found I cant eat “gluten free” packaged products because they either make me nauseated or give me symptoms of anaphilaxis…I told them I’m afraid to eat anything othet than fruits cegetables nuts or meats and she said talk to an allergist..onward to new pcp, nutrioniat and allergist..it’s reassuring to know that other people have had similar problems..in looking back on how I had shin splints and stress fractures from running in high school I think I’ve shown symptoms for 14 years but no one cared to figure out why because its so much easier to write out a prescription…I’m ready to take back my life…thank you for giving me a voice here because for a long time I thought I lost it

    1. dee

      Your life was mine. Only I didn’t get a diagnosis until I was 48. I had the exact same life as you, with no one believing I was really sick. I lived that way from my teens until I was 48 years old, which was 14 years ago. I am so happy that so many are sharing their stories, and I cry with every one of them. Yours is no exception. This disease is a killer, and it really has no “cure”. We can manage it to a degree, but until it is law for gluten to be declared in everything, many will continue to be “glutened” with tiny amounts, which doesn’t always show up with blatant symptoms right away but is doing its’ damage to our intestines nonetheless. I have damage so bad from not getting a diagnosis all those years that I still cannot absorb nutrients well and I still cannot tolerate many other proteins. I celebrate with you in the writing of this book, as no person should suffer at the hands of an ignorant medical profession, and only in sharing our stories will others be spared an entire lifetime of pain and sickness.

    2. David

      Jackie. I have the very same situation with my Appendix. It was inflamed, and they are so very quick to recommend taking it out because its such an easy and lucrative operation. I can’t help but wonder though, if they had left it in,, and after finding out i had Celiac and then changed my diet, well, i just wonder if my Appendix would have healed itself?

  22. Ash

    I am so grateful for what you are doing. This is such an incredibly valuable resource and I am so glad you are using your celebrity to spread awareness for such a cause.

    That being said, I do not have celiac but have an autoimmune disease and am gluten intolerant. I am in the same boat as you at restaurants… and in certain social situations… where people tsk tsk about it being a fad or whatnot. It makes me very self conscious. And if they ask if I have celiac and I say no, I feel the need to go into an explanation like, “… but I have an autoimmune disorder and can’t have gluten just the same…”

    My point is that while perusing your website and seeing interviews, those of us who are gluten intolerant/sensitive due to autoimmune disorders seem to be lumped in the “fad diet” category as your focus is (understandably) celiac. But I, as well as many others it appears, find this to be a wonderful resource even though we may not have celiac. I just feel that your voice could quite possibly help turn society’s tsk-tsks about “gluten free” around if you were to mention that there are other legitimate, real reasons why gluten needs to be avoided… namely in the case of pretty much any autoimmune disorder… just like celiac. This is not to discount celiac as I know the seriousness of it. But gluten is just as bad for me to eat and I have a different disorder.

    A wonderful resource for autoimmune disorders/celiac/gluten is The Paleo Approach by Sarah Ballantyne. Despite the title, it’s focus is on diet and lifestyle for autoimmune disorders and is very heavy on the importance of grain-free diets with the presence of celiac, hashimoto’s, asthma, etc.

    Thank you!

    1. Michelle

      I am in exactly the same boat! Most of my family is really supportive, but my grandma saw some sensational piece on Fox News and got on me for being gluten free. And when I go into restaurants I’m tired of being treated like some sort of annoying high-maintenance customer, and having to say “well I’m not exactly celiac but etc etc…I’m really sorry”

      I know that people with Celiac have it really bad, but emotionally the other issues definitely take a same or similar toll.

  23. deb

    I just had to share with someone right now. I am on chapter 4 of your book and I am crying like a baby. I had my basket of tricks, too. A bottle of Mylanta and several tubes of Rolaids, and always had a box of crackers to help keep the gut pain at bay. And my friends and family laughed about the Mylanta. Every time I took a swig, they thought it was funny. I drank it like soda. Why didn’t anyone think that was odd? 47 years of misdiagnosis. My life. I hope people start listening. Becauseno one should have to suffer through their entire life like so many of us did. And what is actually funny, is that I just thought it was my normal. Until I could no longer remember my phone number or my address. And I forgot how to add and subtract. And I couldn’t talk to people because I couldn’t remember words. And I got lost in stores and crawled under clothing racks crying because I didn’t know how to get out of the store. I still grieve for the life I lost. I am over 60 now and have so much wrong with this body. Constant pain. Horrible pain. But I still have hope. I still pray for a doctor who will actually want to help me. And I do everything I can to give my body what it needs to heal. And I find hope in knowing that someone out there understands what this disease can do to a person’s soul, because up until now, it’s been a pretty lonely road. Thank you for sharing your story. God bless.

  24. Cat C

    I have just been diagnosed as Celiacs yesterday, after a lifetime (41 years) of symptoms that I had no idea were actually a disease. I started my search 6 years ago due to some overwhelming symptoms I could no longer ignore. Severe vertigo attacks were the show-stopper in my life. Years of testing with all sorts of specialists proved futile, and my horrid, life-interrupting symptoms were blamed on my migraines. I was sent away time after time with migraine medications, anti-depressants (of which I never took), advice to seek out psychiatric help, and all hope gone. My life stopped 6 years ago.
    (Side-note – my migraines are a symptom of Celiacs, which I find very amusing, after a lifetime of brain scans, drugs, special treatment, and being told I must learn to live with it.)
    I was definitely not prepared for an answer after all this time of YES, we know what’s wrong with you!!! I’m relieved, sad, overwhelmed, and not sure I really believe that my journey to find an answer has come to an end. A new journey is starting, granted, but all my anger, frustration, anxiety and sometimes flat-out panic, unwillingness to give up the fight to find the reason my body was broken – I now have to let that go. That will take some time.
    I’m really looking forward to reading your journey in your book, and I thank you for sharing your story. I’m looking forward to connecting with others that have this same struggle. I’m looking forward to healing. Most of all, I’m looking forward to living again.

    1. Georgina Dodrill

      Thank you for your story. Like you I had several episodes of vertigo in my early 20′s. I was told I was very young to have them but was just given medication, I was diagnosed with coeliac three years ago and they reckon I had it from a very young age. I am now 38. I am currently seeing a neurologist as I suffer burning stabbing, numbness and balance problems still. Going for an MRI but not sure if it is related to my coeliac or something else. I struggle with eating out as people look at you in a strange way if you ask if it is gluten free.

  25. Harold Gregorich

    I’m half Italian and a diagnosed Celiac living Gluten Free for the last seven years. I have been chasing a decent gluten free ravioli for all these years. Just months prior to diagnosis My son and I made raviolis like grandma used to make and I ate them until they came out of my ears. I also suffered with all the ravages that go with the disease. Is there a decent GF ravioli recipe out there anywhere or Am I going to go to my grave in misery? HELP!

  26. homepath

    Unquestionably imagine that that you said. Your favourite justification seemed to bee on the web the simplest thing
    to rremember of. I say to you, I certainly get annoyed
    at the same time as fols think aabout issues that they
    just don’t realize about. You controlled to hit the
    nail upon the highest and defined out the whole thing without
    having side-effects ,other people could take a signal. Will likely be
    again to get more. Thank you

  27. Woodrowuldx.Wordpress.Com

    Green roofs, or living roofs, are becoming more popular in the United States,
    covering acres of horizontal hard surfaces from schools to businesses and warehouse or commercial locations.
    These companies will ensure about the pristine condition of the roof.
    Most flat roofs are given a warranty of 10 years, but there are
    flat roofs that date back to the 1900s.

    Here is my web blog: Site (Woodrowuldx.Wordpress.Com)

  28. Chauncey

    This design is incredible! You most certainly know how to keep a reader entertained.
    Between your wit and your videos, I was almost moved to start
    my own blog (well, almost…HaHa!) Fantastic job.
    I really loved what you had to say, and more than that, how you presented it.

    Too cool!

  29. Gluten Free and Healthy

    Funny thing–Western Europe, Australia, New Zealand, and probably other places in the world, have known about celiac for a long time. A celiac friend moved here from England almost 40 years ago and had to send back home for gluten free products. In parts of Europe, gluten free food is considered a medical necessity, and celiacs get “prescription food” free as part of the insurance with the National Medicine card from doctors or pharmacies. I had no problem finding gluten free foods offered in even youth hostels on Cinqua Terra or any place in Italy where the best gluten free pasta is made. English gluten free bread served in hospitals is better than any gf bread I’ve tasted. However, it is never sold and only supplied to hospitals or doctors.

  30. Laura Suess

    I am reading Jennifer’s Way and so much of it resonates with me but some of it does not. I have multiple food sensitivities and I wish my problems were limited to gluten but I also can’t have soy, dairy, MSG, high histamine foods, and night shades (tomatos, potatoes, etc.) Skin prick and blood tests have yielded negative results for true food allergy but I don’t care what the medical community says, I am not making up my hives, rashes, and gastroinestinal symptoms. When I eat the wrong foods I am miserable for days. I think most doctors are clueless about nutrition and food sensitivities and it will be 30 years before society really understands it. More people will be diagnosed or discover their symptoms and only then will our food be non-GMO and not full of gluten and artificial crap that destroys the immune system. Kudos to Jennifer for taking action like this. It’s a great start but needs to go beyond celiac. Having so many food allergies has ruined my life. I hate it now.

    1. Teri

      totally understand your feelings and frustrations. Makes it hard to find much joy in life, doesn’t it. But we just keep on going on. Hang in there. Can’t say that it will get better because it never seems to, but it’s the hand we have been dealt. Wish my problems were limited to gluten too. Hate all the food restrictions and how boring meals are. And cooking was my passion!!!

  31. lycanthrope

    You are so awesome! I don’t believe I’ve truly read something like this
    before. So good to discover somebody with unique
    thoughts on this subject matter. Seriously.. many thanks for starting this
    up. This web site is something that’s needed on the internet,
    someone with some originality!

  32. Tanya

    I read your book after seeing you on the Today Show. I have struggled with stomach issues for years with no tests and no diagnosis. The Doctors would tell me to take imodium and send me on my way. Today I finally had the blood test for celiac disease. I am almost hoping for a positive test so I can finally know what’s wrong with me, but I’m dreading it at the same time. Thanks to your advise, I had the determination to ask for the test and not take no for an answer.

  33. Teri

    I happened upon this by accident and am so thrilled that I did. I go to bed too early to ever see any network shows but finally eliminated DISH and now have, only, Netflix and found Blue Bloods simply because I am in Tom Sellack’s age group. To make a long story short, I think you are very beautiful. I didn’t know your name so I googled you and found out about your story. I’m sorry that you are off of the show, but I am thrilled by your website. I have had stomach issues my entire life. All of our stories are so the same, aren’t they. I have food intolerances, and follow the FODMAPS diet. Very restrictive. No gluten, dairy, very few fruits or veggies, no MSG so many various NO’S. It is depressing, but I am 62 and still working full time and sleeping the rest of it!!!! Not that bad, but any chronic condition is so very difficult to deal with partly because we look normal. It’s nice to have a community of like minded people and the work you are doing is making a difference, I am sure. Best wishes to you.

  34. Annette

    Dear Jennifer,
    I’m one of your biggest fans, even posted on twitter recently when I saw an old BlueBloods that you were the best in that role! I have a blog (mentioned above)I began to help folks struggling with managing their menus. buying products, etc. I also write a blog for the NAtional Fdn for celiac Awareness.
    I’m writing today to ask a ques.: Saw you on Katie Couric a while ago, discussing the symptoms most people never associate w. Celiac Disease. Here’s a puzzle for you: I have this horrible “itchy” irritating skin problem, mostly on my abdomen. Sounds wierd and docotrs don’t understand. Have you experienced this and if so, how did it resolve.
    There’s a night or two when I’m not even able to sleep from the “itchy” feeling. And of course, don’t want to keep scratching it.
    You’re right, so many, too many, internists have no clue. Last year my internist was asked if there was gluten in my flu shot, & he said, “Don’t worry, you’re not ingesting it.” Duh!!
    Switched, of course, to a practitioner who gives me one that is.
    But now, no onecan help with a rememdy for this problem. I put a lotion on it, one with no parabens, gluten, etc. but it didn’t help.
    Anyway, on the chance that you’ll read this, I’ll be anxiously awaiting your reply.
    Keep upi your wonderful battle to further this cause.
    By the way, ordered your bagels and lved the “Brooklyn” Cinn. flavored ones. (I’m a displaced Brooklyn girl, now in NJ.So I miss that old taste!!)
    Best wishes, Annette MArie

  35. Nikki Needham

    I was a bit upset when my mom bot me ur book; like I need to read another Celiac/Gut book! But I wasn’t expecting you to touch on the emotional seclusion that accompanies this disease. I was diagnosed Celiac in 2003 & then severe LGS (Leaky Gut Syndrome) in 2009. Five months later I was diagnosed with chronic Lyme Disease. Diagnosis sure helps, lifts the veil of mystery & allows you to shout “I am not crazy you f’n bleeps!” I live in Canada but had to get these diagnoses in the USA; all Cdn doctors & specialists thought I had IBS, an eating disorder or depression. I have nothing good to say about our medical system. I also had people tell me it was all in my head, I should drink more water, etc. Oddly enough all of this dumb advice was unsolicited & as Dr. House would say, “thanks you’ve given me a lot of information, none of it useful”. Unfortunately for me, a few mos after diagnosis I was hit by a car, crazy luck. Then just as whiplash getting easier, I had a mis-diagnosed “women’s” issue & 4 surgeries which were later determined unnecessary & harmful. Now I am finally off pain meds (like poring gasoline on a fire) & can start fixing my gut. I thought this would be the easier of my health probs, but it sucks. So in retrospect, your book helped me realize that Celiac ain’t no walk in the park. Fixing your gut is draining, ironically it takes a lot of energy to not feel well. Thank you for your honesty, sharing your story reminded me that I still have a difficult journey ahead. Wish me luck on my next chapter – trouble is inevitable, but misery is optional.

  36. Shan

    Any suggestions for someone who is a Bakery Manager and can’t find another job with the same pay and suffers every day just to make it through the day! My regular doctor does not believe gluten can have an effect if it is airborne!

  37. Carol

    I started Garden of Health because I saw a need for donations of special dietary foods to food pantries. As a family who have several members in our immediate and extended family with special dietary needs like gluten free, low carb, low sugar, low sodium, dairy free, soy free, nut allergies, etc. it would be difficult for us to find food that these members could have. My daughter has the celiac has both celiac genes and several gluten intolerance genes. She is now 16 and as she was going through this she was told by all of her doctors as we started down this road to find out what was going on that she should see a psychiatrist. She now has some very amazing doctors. I went to school to become an health coach to try to figure out what was going on. These are all reasons why I decided to start this nonprofit.

    Special dietary foods are not donated very often because they usually cost on average double what regular food costs. This means that pantries do not get enough donations of these foods to help a client out on a regular basis.

    Garden of Health is a special dietary food bank. We work with existing food pantries to identify clients who have special dietary needs like gluten free, low sodium, food allergies, etc. We then supply them with food for these clients.

    15 Million Americans are diagnosed with multiple food allergies. When we think of food allergies we tend to think of the top 8 but there are actually over 100 food allergies. Roughly 6% of Americans need to eat gluten free for medical reasons.

    Imagine what it feels like to walk into a food pantry for the first time because you need help. Humility is a hard pill to swallow. Now imagine telling them all the foods you can’t have and then wondering what they are thinking. “Do they think I am being ungrateful or picky, if I don’t take what they have?”

    We are just getting started and need to fill our bare shelves so we have a supply of donations to start helping these clients get what they need to be healthy. We are a recognized 501(c)3 so all donations are tax deductible. I am hoping that you will share this with every one you know so that we can help those who can’t help themselves get better. I hope to be able to grow this to a point where every community in the US will have a pantry that will be able to help anyone no matter what their needs are!

  38. causes of sinus infections

    Very good blog! Do you have anyy helpful hints for aspiring writers?

    I’m hoping to start my own website soon but I’m a little lost on everything.
    Would you recommend starting with a free platform like WordPress or go for a paid option? There are so many choices out there thawt I’m totally overwhelmed ..
    Any recommendations? Appreciate it!

  39. Sharon Black

    Dear Jennifer:

    Just stumbled across a posting (on gluten dude.com) of a video excerpt of your interview with Dr. Drew. Since moving to the countryside a few years ago, I have not watched television, so was not familiar with you or your show. Watching the brief clip of you talking about your life with celiac, food allergies, and leaky gut issues, I was immediately taken by your heartwarming sincerity and passion for “getting the word” out and helping others while helping yourself. As for Dr. Drew, shame on him. He conducted himself like an arrogant tosspot. As Gluten Dude says, Drew could not have cared less for your plight, or the message you were valiantly attempting to convey to others, sufferers and non-sufferers, alike.

    I sat up and took special notice of what you had to say about celiac sufferers, et al., seemingly appearing healthy to others, and therefore, having to explain over and over, ad nauseam that one feels ill; often much of the time. This reality is difficult for most, if not all folks to grasp. Instead, as you well know, one is viewed as lazy, a slacker, whinger, the lot.

    As for myself, I have celiac, diverticulosis, and hypoglycaemia. These illnesses have been coming on for at least the last 25 years and have gotten much worse during the last 5 or 6 years. While having such afflictions are not a death sentence, per se, they do make like life much more of a challenge. They do mess with and at times, diminish the quality of one’s life.

    I have yet to read much of your blog, but it looks wonderful. I see that you now have a gluten-free bakery business, as well. Amazing. Bravo to you! Thank you for sharing your trials, tribulations, and triumphs with the larger world. What you are doing is so valuable.

    Your talking about working a reduced professional schedule has given me real pause for thought. I am poised to begin working (full-time at first, then part-time) 12 hours days performing manual labour, i.e., driving a trident dump truck. My greatest worry is my stamina level. Will I be able to actually do this? Now I am thinking of exploring whether or not I could work alternate days, which would allow me to cope better, to rebound, as it were.

    I will likely subscribe to your blog (again, so worthwhile!) as long as I can be assured of not opening myself/my inbox to all sorts of unwanted mailings and solicitations. Not meaning to cast any aspersions here. :)

    All the Best to You & Your Family. Please keep up your marvellous work and your quest for better health and living.

    Most sincerely,

    Sharon Black

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>