Are you aware that it’s Celiac Awareness Day today? If so, awesome! If not, then that’s what this new campaign I’m doing is about. Celiac Disease affects 1 out of every 133 people and that number is growing fast. 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 or mind. 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.  Many of you know my story, but here’s a short video summary below to give you an example of what we’re looking to do. We will also feature your full videos in weekly upcoming posts.

(If you’re reading this in email, click here to watch the video.)

So, what is your story?

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. All (if any) profits from the film will go to the Jennifer’s Way Foundation for Celiac Education to further promote our cause.

 

*Required Guidelines:

 

NO EXCEPTIONS
All entries MUST be Celiac.

SCRIPT
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…

LENGTH
Please keep your video under 3 minutes.

PERMISSION
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] 

QUALITY
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).

HOW TO SEND TO US
Submit your videos to videosubmission@jennifersway.org. 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:

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

This Post Has 72 Comments

  1. katie b

    I’m not one to get in front of a camera, but I will tell a bit of my.my family’s story. It took a full 13 years to get the Celiac diagnosis for our daughter who was having health problems from her first 6 months in life: skin rashes, chronic illness, stomachaches, headaches, bloody noses, joint pains, sight problems, anxiety/depression, OCD. SOO many problems all chocked up to her personality or my hypochyondria. Going GF and now SCD solved all of her issues! In the process, though, our whole family of 4 tested, with us all showing elevated antibiodies. I was 35, my husband was42 and our son was 10. Chronic heartburn, joint problems, depression, anxiety, bloating, gas etc. disappeared in us also. The funny thing about this disease, though, is the amount of enemies it can bring on. A family emember just recently deleted me from FB because he says he got tired of my ‘constont negative food allergy’ posting!!! I guess at almost 400 pounds and always sick—-he just wants to revel in his denial!

    1. Jennifer

      Katie

      Believe it or not i dont watch much of what i do in front of the camera either. If you can find it in your heart to help so many others who suffer with this disease your words can really make a difference. Please think about it. It doesn’t have to be long at all. We celiacs need to work together to get changes!!

      Much thanks
      Ever Onward
      jennifer

    2. Mays

      Thanks for sharing your views on gltuen-free products. You should try Breads from Anna. They are baking mixes and they’re awesome tasting. Soft. Flavorful. I was really surprised. The pizza/pie crust mix is excellent. I went nuts for the herb bread. The sweet breads (pumpkin and banana) were excellent too, If you don’t have them in your local store, Anna has a web site just google breads from anna !

    3. Yasab

      My disease(s) corntol my life, but my ability to enjoy life. I take them a challenge to find new, interesting ways to explore the world & food, and speak up for those who can’t for themselves!Great mantra sweetie! I agree some days are just HARD, but having something to focus towards is a big help!

  2. Deb L

    Hi Jennifer:

    Thank you for this initiative. This is the first time I’ve ever posted a comment on any site, but I am moved by your compassion and passion to support those who aren’t heard or understood. I am a 39 year old mother of a 2 yearold and 4 year old boys. I was finally diagnosed 6 months after my fisrt child (pregnancy and a C-section had brought out unbearable symptoms–not so good for a new mother).

    I will make a video for this cause! Anyone who is hesitant should think of how theraputic it will be for them as well as for those they love.

    This disease affects those around me (us) in so many ways–when I’m too tired to finish the dishes, or the contant question “What can you eat here?”, or when I am in so much physical pain I have to lay down instead of play,, or the brain damage that makes me forget and puts the burden on my spouse to remember where I put my keys and to balance our checkbook–my loved ones need healing, too.

    My 70 year old father saw you on Dr. Oz. During your interview, he turned to my sister and asked, “Why did they think she had MS?” She explained (as she has supported me through this journey).

    Many people, even my own family, struggles to undertand the affects of celiac on their loved one (whether it’s active or you are healed and still living day-in-day-out with syptoms that won’t go away). But, after your appearance, my Dad finally undestood. He actually said he was sorry for not realizing how I was feeling, sooner.

    Again, thank you. I won’t say that misery loves company, but I will say that there is comfort in knowing I am
    not alone (or crazy!).

    Best,

    Deb L.

  3. Gluten Dude

    Great idea Jennifer. I’m on it.

    FYI…saw you at the Schar facility opening in NJ. Would have loved to hear more of your story and less of everyone else patting themselves on the back.

  4. NYCgrubber

    Hi Jennifer – Great story and inspiration to others! I am still astonished daily by how much my body/skin/health has changed since diagnosed with Celiac and eating gluten-free. If only I knew this years ago – my life would have been so different. I’ve recently cut out eggs/yogurt from my diet and my skin continues to improve daily – it is amazing what food can do to our bodies. Thanks for being a resource – I myself am trying to be one as well – all the best!!

  5. Pingback: Jennifer Esposito has celiac disease. Could she be the advocate we have been hoping for?

  6. Karen Ingraham

    Amen. Finally, a celebrity who can speak intelligently about celiac disease, who realizes how little people really understand about CD, about the fact that it is an auto-immune disease with no treatment, no cure…the disease that just keeps on giving. I think that people don’t understand, because once you go gluten-free, they assume that you’re cured…or that it’s really not that bad. People find it hard to believe what they can’t physically see. And it’s easy for them to be blind to, or explain away, the lesser-known and more subtle, but no less agonizing, side effects of CD. Thank you for being an educated, eloquent advocate for celiacs.

    1. Jennifer

      I so appreciate your kind words. This disease is no joke. I deal with it everyday in a big way. Has taken a great toll on my body but not my mind. I refuse to let it stop me and am determined to make people understand exactly what Celiac is. There are many projects under way to help us live a little easier. Labeling on meds and better ingredients and stricter labeling on “gluten free” products. Much work to be done as you know. Please help by joining me in the Celiac awareness campaign im putting together. I need as many faces and voices that i can gather to make a powerful PSA. Click on Attention all Celiacs for info

      Thanks again and be well!

      jennifer

  7. Amy Macklin RD, LDN

    I love your campaign! Thank you for using your platform and bringing such a positive influence to the celiac community. I do not have celiac disease but am raising a son with the disease. We have been living the gluten free lifestyle since 2003. My story reads… I am a registered dietitian on a mission to make a difference in the lives of gluten free children. I’m determined to not let the gluten free diet get in their way of experiencing all that life has to offer and most of all, define whom they are. I am dedicating my life’s purpose to this cause. I understand the importance of awareness. I will definitely spread the word about your campaign. I can’t wait to see it!

  8. Pingback: Make your CELIAC video TONIGHT for Jennifer’s Way! | Celiac and the Beast

  9. Michelle

    I’m sort of frustrated by the requirement that you have to be diagnosed. I’m not officially diagnosed because doctors wouldn’t even consider testing me for this, and in my helplessness I went gluten free before diagnosis – without knowing that I’d never be able to get a diagnosis after that. I guess I won’t do a video, but you can read my story on my blog here. This sort of makes me feel ostracized from my own Celiac community… I get that a lot of people say that they might have Celiac when they are just intolerant, but some of us can be fairly certain that we have Celiac based on symptoms. I’ve struggled with all the same issues – maybe in the future allow a little more flexibility? Everyone’s story is different.

    1. Jennifer

      Im sorry you are feeling frustrated. I understand, as well as many others who visit this blog. Im making a celiac campaign and do not mean to exclude anyone. Honestly the people you need to be frustrated with are your doctors. I too was told for years that nothing was wrong, they were ALL WRONG. They are also wrong by saying that once you start eating gluten free you can not be diagnosed properly. Maybe through a blood test that is the case, which has a huge false negative rate anyway, the true way to get a proper diagnosis is through an endoscopy. If you have Celiac disease the villi will be destroyed and that will be seen upon biopsy through the endoscopy. Villi does not grow back and heal for at least a year or two after being 100% gluten free. Or you can start eating gluten again and do another blood test in about a month. Either way if eating gluten free makes you feel better you should do so. Again I understand your frustration but I’m not the one who you should use your energy on. Get a doc who will LISTEN! You are always welcome in this community and will always be heard here. This is a difficult thing to deal with for everyone. Just doing my very best to help educate and share.

      Be Well

      jennifer

      1. Aazaad

        OMG I’m so excited to see your reivew!!!! I got diagnosed with Celiac about 4 moths ago and I’ve been having a very hard time following my new diet, especially since I love to bake. A couple of days ago I saw this product on a gluten free website and I was debating on trying it. My husband found a couple of stores in my area that carries them and now I’m really excited to try them out. We are going to the store tomorrow!!!

    2. Samu

      that she felt that all of my issues were reetald to my digestive tract. Wow, I thought, this doctor gets it!!! The constipation that I experienced was so uncomfortable! The results of the stool test came back with a high marker on sensitivity to the protein gluten. I’d never heard of that before. With that result, she wanted to do some blood work that looks for the antibody found in Celiac Disease. The results showed WEAK positive (I had been eating gluten regularly prior to and at the time of the testing). She consulted with a G.I. specialist who suggested I have an endoscopy which is the gold standard for diagnosing Celiac Disease.I had the endoscopy procedure. The results showed SEVERE villious atrophy!!! Diagnosis: Celiac Disease. The G.I. specialist said that he would not have put my screening blood test (which showed WEAK positive) together with the SEVERE biopsy results. This concerns me tremendously! Just how accurate is the blood test? Have you experienced similar results in your practice? Could a person’s blood who has been dealing with Celiac for a long period of time somehow not show the severity or even be false negative? I want to bring this to your attention being that you are an expert on Celiac Disease research.After my diagnosis, I did a bunch of reading and found out that the disease could be reetald to genetics. I wanted to find out if I had the genetic marker(s) associated with Celiac Disease. I had the genetic blood test done through my G.I. specialist and the results showed that I have the DQ2 gene and got it from one parent.With those genetic results, my G.I. specialist recommended that my family members get tested.My Mother has Type 1 Diabetes, rashes, fatigue, over-weight issues, joint pain, Gout etc.I sent information with her to have her doctor test her for Celiac. Her doctor’s comment was, You do not have Celiac Disease. But she eventually ordered the screening blood test for my Mother which did show a negative result.My Sister has terrible diarrhea, rashes, fatigue, over-weight issues. She also was tested and the results, negative.I’m very concerned that they both have Celiac Disease and perhaps the blood test is missing it. Is this possible? (Just a note, I made sure to inform them that they needed to be eating gluten for the test results to be accurate and they both were eating wheat at the time the tests were taken (they are still eating gluten).)Frustrated, I encouraged my Mother to talk with her doctor about having the genetic blood test done to see if she or my father were the carrier of the gene and perhaps to give her doctor the heads-up to test her on a yearly basis if she was the carrier of the gene. Her doctor told her that the test was not covered by her insurance and that it would be very expensive. No progress.Without positive results on the blood test, an endoscopy is not advised. I fear that my family members are walking around with, as you say in your video, a silent killer and I wanted to ask you about the blood test accuracy. Again, my blood test showed WEAK positive and yet I had SEVERE damage to my small intestine. How can that be??? And what is the best thing I can do to help my ill family members. You said in your video that they should not go on a gluten-free diet before being tested and diagnosed.Have you published the specific recommended blood tests that one should have to be screened for Celiac Disease? If so, it would be great to know where to find that information. I want to make sure that my family members are getting the proper tests. I’ve been reading about new stool cultures possibly being more accurate than the blood tests? Your expert opinion would be greatly appreciated!I’m feeling tremendously better on a gluten free diet! So glad I was finally, correctly diagnosed!

    1. Jennifer

      Thank you all so much for telling your stories. I can’t wait to get this campaign together. Please still pass this campaign idea along and urge other Celiacs to make their video too

      Much Love

      Jennifer

          1. Sejan

            Glad you liked that compote. It was a hit at our house which suriprsed me. I don’t usually make things like that, but I had those ripe pears to use up. Those raw almond flour based cookie balls are a super way to use up odds and ends from the baking cupboard like dried fruit, nuts and chocolate chips too.

        1. Heather

          Thank you. I just wanted to say that your blog has already inspired me. I was told 13 years ago I had celiac, but without any education and very little food available, i brushed it aside. I’ve recently become very sick and finally realize exactly what I’m dealing with. I can’t believe the doctor didn’t make it clear how important the diet was. His words were “You might want to try the gluten free diet.”
          I’m just about a month gluten free and cannot believe the difference so far. I’m looking forward to how I feel in a few months.
          When I read your story I couldn’t believe it. Everything I went through was right there. I even was recently scared to death about the Chronic EBV virus, which I don’t have. It really helped open my husband’s eyes too. I’m not imagining this, I’m really sick, and there is a remedy.
          I love your blog, thank you for doing it.

  10. Laura Newman

    I think this is fantastic what you’re doing (and I’m in the process of emailing my video to you as I type)… to have someone in the public eye who has coeliac/celiac disease, and understands it, and wants to raise awareness is just brilliant. It took me 10 years to be diagnosed and the past few months, while being on a gluten free diet, have left me feeling the best I have in a long time. Thank you for all your hard work in raising awareness and here’s to healing! Laura

  11. Kaari Jacobs

    This is a great idea! I will try and get a video done in the next few weeks. I’ve lost track of how long I’ve been GF, but it’s something that’s now second nature to me. Nearly all of my health issues, including horrible skin rashes, all disappeared when I went GF. All of my friends and family members are supportive now, and go out of their way to have GF alternatives at meals. Hang in there! It really does get easier as time goes on. And you will turn a corner and start feeling better!

  12. Laura

    Hi Jennifer,

    My son was only 1 and a half when he became very ill. I did tons of research which led me to an elimination diet. Gluten was the problem. I put him on a gluten free diet and he immediately improved. When my son improved on a gluten free diet it all made sense to me.

    I always had lots of problems to the point that my husband, doctors, family and friends thought it was all in my head. I was very thin, rash, bloating, gastritis, always sick, lack of energy, afraid to eat out because of my constant upset stomach and the list just goes on. Then there were the mental problems such as headaches, brain fog, and bouts of depression. It was horrible. My son suffered more than I did and that just made me feel like more of a mess. After a year of testing, doctors finally gave me an official diagnosis of Celiac Disease. I was also recently diagnosed with Graves Disease.

    I found your website through a yahoo article about the show Blue Bloods. So sorry you had to resign due to CBS’s foolishness. Most people I meet do not know what this disease is, they think it’s an allergy or it’s not a big deal. I admire what you are doing and trying to accomplish. Love your website and can’t wait to try some of your recipes. Be strong and healthy!

    Wish you all the best,
    Laura

    1. Madeline in NYC

      I love what you are doing, Jennifer! I have gluten sensitivity too and found that going off gluten made a huge difference. It would take me seven hours to wake up while eating things with gluten in them. Intestinal parasites were found to be part of the problem for me. Most doctors are not very helpful with this. I’m gaining useful information from online forums and a book called “Healing With Whole Foods” by Paul Pitchford. Blessings and thanks to all who are doing their own research on these issues.

  13. Pingback: My Celiac is not Your Celiac…but we ALL need support! | celiacinchilliwack

  14. L O

    I am not true Celiac, but I am positive for gluten insensitivity. My blood tests were inconclusive. I then was referred to Enterolab.com. Dr. Fine uses a very sensitive stool test. Although I am not Celiac, I maintain a GF diet because I am prone to other autoimmune disorders. My Hashimotos thyroid condition cleared up on a GF diet. The Enterolab test showed I had 2 genetic markers for gluten sensitivity but was clear for celiac. I have maintained a GF diet for 15 years. It is a healthy diet so long as you don’t substitute other high carb grains and sugars. I also recommend “Dangerous Grains.” (Ron Hoggan and James Braly). Mine is dogeared from loaning out.

  15. Mary Morgan

    Jennifer -

    I have just discovered your website and blog and am very grateful that you are willing to advocate for all of us who suffer from celiac disease. As a recently diagnosed celiac, I relate to so much of your journey….the constant fatigue, depression for no apparent reason, foggy thinking at the office. extreme weight gain and a new medical issue every time I turned around. I felt like everyone thought I must be a hypochondriac….. I couldn’t believe my bad luck! The last doctor I saw before seeing the one who diagnosed me did an “executive blood panel” which showed an extreme Vitamin D deficiency and low iron. I was not tested for celiac disease until I went to the nearby university hospital for a comprehensive medical evaluation. Once diagnosed, I was almost elated because even though I will have it the rest of my life, it made all my symptoms and illnesses make sense! I will continue to follow your blog, your work situation and support your foundation. Thank you so much for what you are doing!

    Wishing you all the best and wishing a hex on CBS for its lack of understanding!

    Mary

    1. Chandu

      I’m excited to see how it goes! In today’s world, it is much eiaesr to be gluten-free than it used to be I think. There are so many products out there (some are pretty $$ though) and they can help you at least have things that you love without the same reaction.Good for you on signing up for that challenge! Seems like a great way to get the ball rolling and gain a sense of familiarity and routine with your blog so that you can continue to keep going with it without as much initial resistance, perhaps? Have fun!

    2. Fenix

      It’s a pity you don’t have a donate butotn! I’d without a doubt donate to this superb blog! I suppose for now i’ll settle for book-marking and adding your RSS feed to my Google account. I look forward to brand new updates and will share this blog with my Facebook group. Talk soon!

  16. david

    First I am so sorry to hear you are having problems with you television role. I have had a similar situation. I worked for a company for over 11 years and a few months after I was diagnosed I told them what I had and that I might not recover very quickly if ever from the complications of long term undiagnosed Celiac disease. A few months later they said I was given the choice to resign or be fired. In the state I live in they can fire you without any reason. The only thing that was commented on was that they thought I had an anger issue, which can be part of celiac disease, but it was not evident at work.
    I was misdiagnosed for over 11 years. I was told I had Ulcerative colitis then a few years later it was microscopic colitis then my large intestines were clear. The entire time I lived with fatigue, depression, diarrhea, and pain every day. After 8 years and being told all my symptoms were from the colitis, I would eat and almost fall over with pain and they said it was my gallbladder but when they did the imaging nothing was wrong with my gallbladder. My blood work was abnormal but none of the doctors did anything about it. They said it was dyspepsia and the colitis and I would just live with it. I had taken all the meds for Ulcerative Colitis with no relief. I was a hard worker trying never to miss a day of work. the only way I could function was using imodium. The people I worked with could not believe I lived with the diarrhea and extreme abdominal pain all those years and still worked. I just said that it was the way it was so I had to live with it.
    Last year about this time I stated having muscle cramps in my hands and arms to the point I could not work safely. They tested my blood and said I had a parathyroid tumor but after more extensive radiologic tests it was determined not to be a tumor.
    The pain wasso intense that it was at least a 9 out of 10 every day. They finally decided to send me to the Mayo Clinic but it was going to be 3 months before I could get into Dr. Murray’s care. I had to see a new GI doctor locally and he said he thought I had pancreatic cancer and wanted to go in and look at my pancrease using and endoscope (ERCP). He performed the procedure under general anesthetic and had to place a stent in my pancrease because the sphincter had scarred closed from all the years of undiagnosed Celiac disease. The doctor while placing the stent noticed the inflammation of my small intestine and took biopsies and post op took blood. Dec 5th I was told I had Celiac disease. Eat gluten free and you will be fine is what I was told. After another month I was still in so much pain and the diarrhea never stopped. This new GI doctor said you are just eating gluten and he tested my levels again and they were falling which indicated I was not ingesting gluten.
    I finally got to Mayo and told my 11year saga. The staff reviewed the originally biopsies from my colon and I was told I never had ulcerative colitis or microscopic colitis. They kept me there for a week and redid their own coloscopy, endoscopy and 20 other test. They thought I had lymphoma my small intestines were so badly damaged. They told me that I am so bad that I may never recover and continue to have all the symptoms which I have not enough time or space to list. Just say that I have almost all the worst of the worst symptoms of the long list of Celiac disease.
    Currently I am disabled and unable to work. Mayo clinic said I would not be able to work for 3 to 5 years if it every happens.
    My daughters where then tested and they both have celiac disease so at least they can live gluten free.
    What hurts is when people see me and say you don’t look sick. The other is when you say you have Celiac disease they say sorry you can’t eat bread.
    I read your story and it touched me because I know what you and your family and friends are suffering with Celiac disease. The ignorance is terrible and I am wanting to help prevent others from my level of suffering.
    Thank you,
    David

    1. Jennifer

      Your story sounds very familiar and so NOT ok. I’m so sorry for your suffering. It makes me so very sad for the suffering we celiacs have had to suffer at the hands of ignorance. I’m doing everything to change things. We may have a long way to go but with people like yourself involved in educating and openly discussing your story we will move forward. If you have the means to take part in the celiac campaign I would so appreciate it. The more voices the better. All the info is here on site.

      Thank you again and be well

      jennifer

  17. Marsha

    My son was diagnosed with CD a year and a half ago. He turns 7 tomorrow. Our experience with getting a CD diagnosis was quick, but my son suffered for 5 years of his life. He was always crabby and clingy, never wanting to be put down. His stools were always loose and pale. I remember mentioning it to the pediatrician one time. I was asked if he ate a lot of fruit. The answer was yes, and she said there’s your answer. He never liked eating bread, his body was telling him that’s not good for me. It wasn’t until I started sending a sandwich in his lunch that things started a downward spiral. We thought he had norovirus. It was December, ha came home sick from school and had horrible stomach cramps. He then got better. He became ill again in the week leading up to Christmas. W didn’t know what to think. Diarrhea and stomach cramps continued. We took him in to see the pediatrician on Valentine’s Day. She took X-rays and said he had a lot of gas. She then wanted to do. Loos work and have a fecal sample taken. Before he went to the doctor I did my own checking on WebMD. CD was one that popped up. I asked the doctor if a Celiac panel,could be run since blood was being taken anyway. She shrugged and said why not. 2 days later were at a gastroenterologist appointment. The GI doc came in and said that his rest results were back and that it showed he had CD. This road has been a tough one over the last 1 1/2 yrs. mistakes have been made and tempers have flared. School is a definite challenge. No one understands, and if they think they do they have all the wrong information. It makes me want to scream! I love that you have started this campaign. If there is any way I could help, please let me know. In many ways my son’s life depends on what you are trying to accomplish.

    1. Jennifer

      Your email touched me so that I mentioned it to a few people. The last sentence about what we do NOW will affect your sons future. THIS IS WHY I started all this. I can’t see anyone suffer the way I did with this disease. It is an absolute disgrace that your son and you had to go through this. Its NOT ok! I am doing everything I can to bring awareness and education about this disease to the masses. Please take part in the Celiac Awareness Campaign. If you have the means to record a short video that would be amazing. All details are here on site. My wish is to get as many celiacs to tell their story to then combine together into one voice for a public service announcement. Every bit helps to improve my future and of course your sons. I wish you the very best and much health to your boy.

      Be Well
      Jennifer

    2. Christy

      This made me cry. Like reading my own sons story! He will be 7 next month. 11 months gluten free and doing so much better. Good luck to you & him…we are our children’s only chance! (& a huge thank you to Jennifer!)

  18. Theresa

    I was diagnosed with Celiac 5 years ago and have been gluten free since then, however, I am now experiencing joint pain, neuropathy and other symptoms that I never had before. I just recently watched this video http://www.youtube.com/watch?v=hAMlir8oprw and now I think I understand why, even after eating GF for years, that I am still having strange symptoms as well as gastric issues. We can blame GMO (genetically modified) foods for this I believe.

    1. Jennifer

      ComPletely AGREE!!!!!! Please read and sign petition on site Organic Bytes. Go to article called, Payback Time: Boycott The Organic And “Natural” Traitor Brands that Helped KIll Prop 37. When you read the amount of money that was given by top brands we trust you are going to be appalled.

      jennifer
      so sad

  19. Dr Robert O. Young

    Reversing Celiac Sprue – Degeneration of the Intestinal Villi

    Dear Jennifer:

    I must share with you an incredible testimony of healing that has taken place for
    Aliki Pishev who was challenged with a “life threatening disease.” May everyone who reads and understands Aliki’s pH Miracle bring hope to others who are in fear, pain and suffering with this message of healing light.

    In love and light,

    Dr. Robert O. Young

    Dear Dr. Young:

    It is 7:30am on Mother’s Day and I should be staying in bed for the traditional “breakfast in bed.” Instead, I feel compelled to write to you this important message.

    Yesterday, I was at Jeff’s training which was awesome and one of the questions was, “What does pH Miracle Living mean to you?” I responded quickly but now that I’ve had more time to think, I’ve come up with a more meaningful answer.

    When you are given a diagnosis of a “life threatening disease,” you find yourself falling into this abyss of darkness. You feel helpless, alone and powerless. In September, I was diagnosed with celiac disease. I was told that people with celiac have a higher chance of developing other conditions, including lymphoma. When I asked about this potential danger and whether or not I should be worried, the response was, “………well, if you notice fatigue, weight loss or high fevers, come in right away.” My immediate thought was, if I wait until then, it will be too late. I decided not to wait and took matters into my own hands. I took control of my health.

    As a clinical psychotherapist I was comfortable with advocating for my patients. I had considered myself a healer in some ways. But now I needed healing and I didn’t know where or to who to turn to. It was an all too familiar place. A few years ago, I had gone through six years of repeated miscarriages (five losses in total). The sense of loneliness, pain and fear that one goes through during a health crisis can be quite difficult.

    That was when my journey began. Through a long time friend who herself had some health challenges and regained health, I also took the leap of faith. It was in January that I spoke with you and to be honest, it was the first time that I felt a surge of hope and joy. It brings tears to my eyes just remembering the intensity of those feelings. It felt like someone had thrown me a rope that I could finally hold onto.

    I was suffering from all kinds of symptoms: anemia for two years, elevated liver enzymes for three years, frequent headaches and migraines, osteopenia, vitamin D deficiency, regular painful mouth lesions/canker sores, low energy, inability to run for two years (after always being a runner), exhaustion.

    As you suggested, I did the pH Miracle Whole Body cleanse and the complete program. I’ve been drinking the greens faithfully since January. Three weeks ago, my primary care physician called ecstatic saying, “I have never seen such good blood results on you!! Everything is normal!!!”.

    Today, I feel like a new person! My whole life has changed! I can honestly say I feel the healthiest, probably that I have ever felt. All my nagging symptoms are gone. I’ve resumed running since January and now exercise four times a week (for a 42 year old with 3 young children and a busy job, that’s pretty good)! I’ve had other surprising benefits as well. I am sleeping naturally for the first time after years of needing medication to help me sleep. I feel calmer and happier. People have commented on the changes in me.

    So, what does the pH Miracle “LIFE” style mean to me? I can say it with one word: HOPE. You, through your research and your products, have given me the greatest gift. My deepest fear has always been that I would not be around to see my children grow up. Now I have the tools and knowledge to make sure that I have a long, healthy life. This is the most valuable gift that we can give to our loved ones and to people everywhere.

    On this Mother’s Day, an appropriate day for this message, I’d like to thank you from the bottom of my heart. I know deep in my soul that God sent you to me, at a time that I most needed his help and guidance. I’ve seen what miracles you’ve created for so many other people who have suffered with their health. Dr. Young, you have changed my life and I will always be eternally grateful to you.

    With the greatest respect,

    Aliki Pishev

  20. Linda Allebach

    Jennifer, kudos to you for showcasing Celiac disease. I have a broader autoimmune situation, having experienced about five different manifestations for the last 40 years. Included were alopecia areata (your hair literally falls out); iritis in both eyes for six months (couldn’t focus or work); ankylosing spondilitis (a form of rheumatoid arthritis); and IBS (Irritable Bowel Syndrome). Due to the most lasting (IBS) I have had to retire early and my life is impacted daily. All these years, no doctors have collaborated — which I requested numerous times — to figure out why all these things happened to me. Although I did much research at the Library in the early days, thank God for the Internet! With help from a concerned friend, found a book called “Breaking the Vicious Cycle – Intestinal Health Through Diet” that is called the Special Carbohydrate Diet (SCD) and eliminates all grains, gluten, starches and sugars. Been on that regimen for two years now and have had the most improvement EVER. Still not perfect, but am able to have much more control over my life and daily schedule. Reason it works is because it overcomes the damage to my small intestine that had been done for many years due to those foods. And of course autoimmune means I’ve been trying to kill myself for all that time. Very sad that doctors in the U.S. are largely trained to perform surgery and/or prescribe. There are no answers for us unless our diets are changed — sometimes radically. I make my own yogurt, dry curd cottage cheese, soups, salad dressings, and sauces. Most everything from scratch — a lot of work but completely necessary. Can eat fish, poultry, some beef, and lots of vegetables and fruit. So thanks again for being brave enough to bring this problem to light in the media. Good luck with your continuing recovery and hope so much to see your acting role reprieved on Blue Bloods, along with my favorite guys Tom Selleck and Donnie Wahlberg. God bless!

  21. Michael duBois

    Dear Jennifer,

    You are a hero to the millions of celiacs, including my daughter, who stand in solidarity behind your foundation, your product line, and your personal civil rights. We cannot wait to see your considerable talent at work in a new showcase.

    You’re the best!

  22. J H

    11-26-12: I saw your story on Fox TV. Great and needed story! I looked up the trigemial nerve symptoms along with itchy skin, and unusual non-symptomatic, foggy headaches. The only big factor–I changed from a Active Adult 50+ to a complete Ultra Women’s Health vitamin. I got that one because it had more pills and probably cost effective and was a women’s pill. I thought it might help me more. I started having the symptoms and changes after the vitamin change. I plan to go back to the old vitamin and see my doctor in about two weeks.

  23. Stacey

    I do not do cameras. I went undiagnosed for what is estimated to be well over 8 years. I went from a healthy and slightly overweight young looking 29 year old to looking like I was 70 years old in a matter of a few years. The physical look is hard enough to deal with seeing my outer beauty gone in a matter of a year, but dealing with the part of it I could not see,trying to find foods I can eat when I can eat and working a full time job to boot. It was very hard for me to hear that my body had been alive only because I had enough fat and muscle for it to “eat” to sustain me. No matter how much I ate, I lost weight, nausea, constant pain. And yes for a while it was “in my head” according to most. I woke up everyday for 10 years making a decision to get up and go on or lay down and continue to die. Im a fighter……

  24. Diana

    I’m also not one to do anything on videotape! I was an actress for 18 years & never got comfortable with it.

    My story is a bit different. I had the skin form of celiac long before I had the intestinal symptoms. The latter started after I had shunt surgery that ‘required’ (a story all on its own) messed with my intestines (or around them). After that I had horrible, daily symptoms & tried everything to get control over it, to no avail. Doctors kept telling me I had to ‘learn to live with it’ and that it was all about my other condition–hydrocephalus. Considering that the intestinal issues didn’t start til I was 15, I never believed that it was related to they hydro, since I was born with that. If it was related, I would have had this ‘problem’ all my life!

    For over 20 yrs I ‘lived with it’, trying every idea floated to me to try getting control. The final ‘try’ for me was going gluten free, which has been a godsend! I still occasionally have ‘issues’, but a couple of times a year sure beats daily!

    I also lost over 125 lbs, while I’m gaining at the moment, I still want to lose another 60 or so.

    I’ve probably embraced gf living, in part, because I was trained as a chef in college and I see developing recipes as fun, relaxing & potentially providing me with an income. I am currently looking for more clients for my personal/private chef business, specializing in gf.

    In the last few yrs I’ve had lots of fun and interesting experiences. I have a couple of occasional clients and one or two that are more regular. For a couple of yrs I volunteered at the local food co-op in their cooking school as an instructors assistant, doing mostly gf classes. Then I worked for our regional PBS station, in the kitchen. A few yrs later I was called by my former boss to do a special menu for one of the pledge drive groups w/IBS. I talked to the doctor who runs the clinic that was volunteering for the phone bank & he said that my story wasn’t unusual at all.

    Last fall I did a cooking demo at the neighborhood farmers market, which went over very well. Again, the focus was on gf. It was supposed to be a kids’ class, but we had mostly adults coming to the booth.

    Because of my gf interest, I’ve gotten the mom & pop grocery near my home to carry a growing number of gf products, but I still go to the co-op for a lot of my supplies.

    Last night I made spiced buckwheat pancakes with mesquite flour & topped with roasted apples and pears. Our Thanksgiving, as always, was gf. I made a veggie rich cornbread stuffing w/cranberries in it, along with nuts & wild mushrooms. This time of year I always get requests for my pumpkin souffle, which I used sweet potato flour in.

    I”m also diabetic, so I don’t eat russet potatoes (the occasional waxy potato is okay) and I’ve been using a lot more stevia & the occasional agave.

  25. Dominick Cura

    Hi Jennifer!
    I am definitely going to make a video, but I first just wanted to share my story in words with you. I am 13 years old and in 2009, when I was nine, I was diagnosed with Celiac disease. Since I was a little kid I was feeling really bad. I would look very sick, I’d be very tired and always have dark bags under my eyes. My legs would always ache a lot and it would stop me from sleeping easily. I would also get lots of headaches. No one could figure out what was wrong. Finally after a while my pediatrician suspected it could be Celiac disease. After a few tests including a biopsy I was diagnosed with Celiac disease. At first, it was really hard for me. So much stuff I loved eating, and have been used to eating I would never be able to eat again. After a few weeks my view of Celiac disease started to change. I found some foods I started to like better than glutinous foods, such as quinoa pasta. I then decided to start my own blog and post about updates in the “gluten-free world”.
    During this time I also found a gluten free cookbook and I started baking from it. As soon as I ran out of all the recipes that looked good, I decided to try to develop my own recipes. Then in 2011 I got the idea of writing a cookbook with my own gluten-free sweets and a short story of how I changed Celiac into a positive thing for me. It wasn’t easy. I’d mess up many times and I would feel so discouraged after making them that I wanted to stop baking, but I really was dedicated to writing my book to help people with Celiac and raise awareness, and so I kept going, baking almost every other day. In April 2012 I self-published my cookbook: “Eternally Gluten-Free: A Cookbook of Sweets and Inspiration from a Teen!” I was so happy to finish my book. My book is on Amazon.com and many stores in Seattle, I hope to soon have books in other states. In my book I have only recipes of sweets and I also have a few Italian recipes because I’m half Italian. I bet you know some of these because you’re also Italian! I have recipes for Struffoli, Panna Cotta and Cassata cake and I recently made some more Italian recipes but I didn’t make them in time for the book. I’m also going to try to make cannoli soon because I really miss them and am dying for one! Besides my book I also have a blog: http://www.eternallyglutenfree.com and I have a few other big projects I’m working on that I was inspired to do because of Celiac disease. I’m trying to also publish my book with a publisher, as well as trying to make a documentary about Celiac disease. The reason I want to make a documentary, other than raise awareness of Celiac disease, is because when I’m older, instead of being an author or baker I actually am planning to be a movie director. Some of my friends and me have worked hard on making our own movies and I recently started a documentary about my grandfather. I remember thinking to myself a few months ago, If I want to be a movie director when I’m older I should do whatever I can while I’m still a kid to make sure that comes true because I won’t be a kid forever.
    I know if I never had Celiac disease I would never had accomplished the things I have done this past year and I would have a totally different future. ! I would never had written a book, written my own blog, held a fundraiser and be inspired to follow my dreams. Celiac Disease is the best thing that ever happened to me! I am so thankful for Celiac disease. It’s changed me a lot and has made me a very unique kid which I appreciate a lot! I’ve been trying to raise awareness of Celiac and to help out people with Celiac. If you could visit my blog and Facebook page that would be great! I am so glad there is a great celebrity like you who because of Celiac disease can more easily help out everyone with Celiac Disease and raise awareness. Thanks!
    I was able to change something negative such as Celiac into changing my life into much better than it was before, including me writing my own book, “Eternally Gluten-Free”.

  26. Elizabeth Martin

    Jennifer,

    I have Celiac and just recently found out, for years I was told that I have IBS and fibromalgia. I m 52 and thought that my being tired, my abdomanial pain and constipation was just part of getting old. This summer I was deathly sick for 3 month, it started with a urinary tract infection and passing out for 15 mins. scaring my family to death, my PCP did not know what was going on, I couldn’t eat without having nausea, and became very weak. I was scheduled for a colonosopy when my GI Dr said he wanted to do an EDG instead. He did a bipopsy for celiac and from their my Celiac journey begins. Since going Gluten free I have ended up in the ER due to severe allergic reation to walnuts, various infections with a weakened immune system and now have an esophageal yeast infection. I am only praying that things will get better as time goes on and I am sick of being sick and know that my family is worried to death and tired of me being sick also.
    Thank you, Jennifer for your great work and this great web site.

  27. Diana

    Hello Jennifer,
    I was so excited to visit your website after seeing your segment on “Fox Files”. I am very grateful that you are bringing awareness about Celiac Disease. Your site has made me feel as if I now have another family-one that understands what we Celiacs go through. I was diagnosed in January 2012, actually only four months after my first complaint to my primary doctor. She suggested I had GERD, then acid refulx, then a hiatal hernia. It was after an endoscopy performed by a GI doctor that I learned of the celiac. Unfortunately, the pain was not only stemming as a symptom of the Celiac Disease (perhaps not any pain at all from it) as I was kind of diagnosed “by accident”. After going to a gluten-free diet and being assured that I would feel better in a matter of days, the pain became more intense and changed location in my stomach. Within a month I had several blood tests along with an abdominal sonogram and CT scan and was soon diagnosed with stage IV colon cancer. Dealing with two life changing diseases in a matter of two months has been a challenge to say the least. I am still learning, reading, researching, and have attended a Celiac Support group a few times this year. I am so very grateful for the doctors that finally did listen and could figure it out. It is so frustrating not to be heard, and I admire that you are out there to give us a voice and make people aware-health professionals, friends, co-workers, family. People just don’t seem to “get it”. I will visit your site regularly and keep hoping and praying that the word gets out there and more and more people can become educated about this disease. I am interested in making a video for you, are you still accepting them? Thank you. Best wishes to you.

    Diana W.

  28. Tom in Memphis

    Jennifer, I wanted to thank you for having gone on television and talked about Celiac. I am a 64 year old retired airline pilot who suffered from all these symptoms and never had a clue as to why. My fatigue eventually led to such immobility that I would fall asleep while flying the airplane. And the list of symptoms goes on and on and on. Anyway, God Bless you, since if it hadn’t been for you, I would probably have ended up like so many others-an early grave.

  29. Tracey

    Hi

    I reached out to you on my new Twitter (TJ_FCTees) (I am completely new to social networking) and you were SO kind to direct me to this site. I would love to help bring awareness. As I told you my Dad is Celiac but it was untreated and undiagnosed for 3 years after multiple double-balloon endoscopes, a small intestine blockage that eventually was removed but still it was not diagnosed correctly. As a result Celiac is the direct cause of the cancer he is now fighting called EATL T-cell lymphoma. I need to be tested because I have many many of the same symptoms of Celiac. I have just been so consumed with what has been happening to my Dad I have kind of put myself on the back burner. If you would like for me to tell my Dad’s story for your video I absolutely will. I’m very nervous to make a video but I will do anything I can for my Dad to bring awareness, and help find a cure for his cancer. I guess you could say I am a Celiac daughter. Please let me know and I will help if I can. Thank you again for directing me to this site with such invaluable information. I will be visiting this site often especially for the recipes and telling my friends and family as well.

    Big Hugs

    Tracey

  30. Katherine

    I was a school counselor for 17 years and saw children struggling everday. Now I wonder how many of those kids were suffering from depression, brain fog, learning problems and fatigue due to undiagnosed gluten sensitivity. I was diagnosed myself 3 months ago and I’ve battled those symptoms for years. For me it felt like adult onset autism. This is such an important project you are undertaking! Teachers and school counselors need to be aware of celiac!

  31. Kim Rhodes

    Jennifer, you are awesome! Thank you for your efforts to raise awareness! I am very active with the NFCA in the Philadelphia area. It would be a pleasure to contribute my story, and I will do so. I think my story is super important because my pregnancy triggered celiac. Although that is not an uncommon trigger, my doctors had no idea. So, celiac affected me any my unborn child, all the signs were there, buhobo one recognized them. My daughter was born – luckily shes health and she has celiac too. My story and feelings were so much the same as yours that your story was hard to read. Recently I helped a friends 10 year old daughter get a diagnosis after two years of suffering – two years!!! I’ve seen increases in awareness, but it’s not enough. Love your site and mission – would love to have you join forces with the NFCA; the two missions are aligned.

    Gratefully,
    Kim

  32. Carina Tiffany

    Is it too late to submit a video!?

    For some reason I just stumbled across this tonight and am already planning to shoot it this weekend!!!

    My story is outrageous and no one should have to go through what I have (and you ofcourse and many others) and I would love to share my story!!!

    I will film it this weekend so I just want to be sure that you are still accepting submissions?

    Thanks so much, you are an angel <3
    Sincerely with love,
    Carina

  33. Bethany Hicks

    Hi Jennifer, I stumbled upon your blog when doing research for my blog- Glutenfree-b.blogspot.com. I too am passionate about getting the word out aboug gluten sensitivity, celiac disease and how all foods effect us as a whole. I was diagnosed with IBS, suffered with depression and anxiety most of my life, and 3 years ago after having my 3rd child via VBA2C, started experiencing severe joint pain, fatigue, nausea to name a few symptoms. I was finally diagnosed with celiac disease after the doctor hesitantly ordered the celiac panel, (I didn’t have any of the common GI problems associated with celiac). My anitbodies for gluten were skyrocketing and my doctor was shocked. I would love to make a video about my experiences if you’re still accepting them. Please let me know.

  34. Lisa Jane Patrick

    I was diagnosed with celiac in 2000, one month after have Breast Cancer on my 40th Birthday. My entire youth.. I was tired and would get sick after eating deep fried fish&chips or piece of bread.. Celiac disease was overwhelming and not in Vogue as it appears to be today. The most useful tool was my Canadian Celiac dictionary..I purchased copies for friends and family..to take the mystery out of my health sensitivity. I learned to cook and bake from scratch for my needs and still cook full meals for my husband and family members that they enjoy. Often people will see inside my pantry and wonder.. what do you guys eat… All from scratch., fresh products and enjoying it. Limited but nutrition. My baked goods are awesome.. Little nieces even love them.. although I don’t believe in restricting others of gluten. Benefits to those not celiac.. ie. B12 and Folic Acid.. most celiacs have difficulty absorbing and it does cause health issues.. I don’t enjoy dining out.. eating..socializing over wine is just fine. as I don’t trust cooks.. even with the best effort.. a crumb can affect me.. so it isn’t worth it.. I have great ginger cookie recipe and carrot cake.. I keep ingredients simple.. lots of practice.. I contribute my healthy diet to keeping my Cancer away. On 9.11 @ 9:00 am I was giving a voice of remission of my cancer and I just couldn’t celebrate with my USA friends suffering that day.. so I always say.. I can never be a hooters gal… but a Happy Healthy Gal.. Celiac disease does not mean skinny, boring.. it is an opportunity to think in simple ways of nutrition and creative..The Canadian Gov’t allows a deduction for gluten free food on tax.. that is helpful. Canadian Celiac Assoc. is excellent in supporting Canadians.. I realize it is overwhelming for new Celiac.. but the dictionary is very helpful when shopping.. and it makes us aware of what we are putting into our bodies.. not a bad thing… Take Care and I have great lifestyle with food fueling it.

  35. Mara Leree

    Since I remember I always had stomach issues, but it got worst since 2011 when I had my third baby and he died after a medical error a week later, because of the stress involved I developed what I thought it was Crohn’s Disease, and months after panic attacks and depression.
    I’m part Spanish and part Lebanese, born and race in Baja Mexico. So one day I was watching I think the Today show, and saw you in an interview where you were being asked things about your disease, I got to this webpage and it was a blessing from heaven to read it. I got in contact with a family member who is a Naturist doctor, and ask him if it was possible that I have the same disease you were talking about. And he put me on a diet, i’m in the third week and I never felt this good. I got frustrated at first because here in Mexico is really hard to get Glutten free products, but a trip 2 hours north to San Diego every month its all it takes.

    I would like to help you in your campaign, but I speak Spanish. If you wish to, I can do a Spanish testimonial… I would wait for your answer.. Thank you for that day you were on than TV show….

  36. Jeff Kelly

    I was diagnosed on my own initiative at age 45 with the help of Enterolab(best $300 to counteract the mythmaking of Psychiatry that ever was spent). I am now 56. This condition destroyed my life financially. Destroyed it. I cannot tell you how awful I felt most of my life. Once going gluten free things physically improved but the rest of my life did not. It most likely never will. You see I was tagged by Psychiatry first at age 11 under a pressure cooker Parochial School situation and photos of myself from that time frame reveal an emaciated child, a profession that will NEVER let you go. I have lost everything, access to ANY kind of normal financial life, access to ANY personal life, and my family rejected me PERMANENTLY. In 2002 I almost died twice–once from gallbladder necrosis(that was removed by emergent surgery) and another time by bacterial cholangitis(I also have sclerosing cholangitis–in other words, the bile ducts inside my liver are being destroyed by my own immune system. I have ulcerative colitis and also hypothyroidism along with the bone loss of osteoporosis.
    When presented with my experience with these serious medical sequelae to Celiac my brothers dismissed it(who are trustees in our mother’s estate over my share, which is another entire twist which bears nothing directly on this but has a definite emotional content that I have no problem in revealing.
    I am sorry but I have no access to video recording equipment. However I can tell you what you are doing here is AWESOME. Keep it up please!! Because obviously if anyone is suffering chronic clinical malnutrition from this disorder and they either do not know it right away until their bones rot away or have many symptoms like me and doctors simply ignore it out of ignorance. This was an atrocious situation that destroyed my life, and the bigotry that comes with the label of “mental illness”–when it is not–simply remains with you especially with certain people for literally the rest of your life. Just that simple. The bumper sticker that reads “If you think education is expensive–try ignorance” really applies here. Physicians have tried lots of ignorance, and Psychiatrists only practice same in my opinion. Those who care must fight, because to not do so means to cede to those who prefer ignorance and bigotry the same upper hand they’ve had for too long in the power equation.

  37. Angela

    Thank you Jennifer. It took 30 years. It took a doctor with Celiac to diagnose me. We need help in the restaurants. They say they are gluten free and then you find a tiny piece of bread in your salad. It makes me sick and I can’t think for a week ( I can’t do my job). They don’t take it serious. Please mail deliver your baked goods.

  38. Mariana

    Jennifer, I’m from Argentina and I was diagnosed in 2010. I would like to submit my video if it is still possible. I would like to get involved to spread the word about celiac disease as much as I can. Please let me know.
    Also, I would love to have a bakery like yours here in Buenos Aires!!!

  39. carla

    Hello Jennifer! are you still accepting videos? I would love to get involved. I am 22 and was diagnosed bout a year and a half ago.. has been quite a journey and I have finally found your page!! Thank you for the inspiration and comfort. Your story, personality and passion reminds me that I am not crazy!! xoxo

    1. Cibbyaza

      Hi there I am lucky enough to have eenirexpced Udi straight from the source and Barrett is not kidding about anything he is saying. The funny thing is I dont have Celiac’s and I use to eat there at least once a week, my work would order there bc it was a skip from Westwood Denver North where I was a admin assistant. So if someone who doesnt have to be gluten free willingly chooses Udi then yeah!!! lol oh and go to the website and put in your zipcode it wll tell u where to shop for the products!

  40. Tetsu

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  41. Geovane

    Greetings from Florida! I’m bored at work so I decided to bswroe your website on my iphone during lunch break. I love the knowledge you present here and can’t wait to take a look when I get home. I’m amazed at how quick your blog loaded on my cell phone .. I’m not even using WIFI, just 3G .. Anyways, very good blog!

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