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16 Comments

  1. 1

    Sharla

    This is my story, almost to a T. It has been 3 years and I am still fighting. I try to be so very careful, but becoase of a back injury I have lost my job and insurance, so going back to the Dr. is not an option right now. Such a mess.

    Reply
  2. 2

    Connie

    Great roundup, Gluten Dude!

    I was just reading today – did you know Joanne Weir has a gluten allergy? I had no idea. She’s a cooking guru with some great tv shows.

    I’m just wondering if its a new diagnosis, as she’s tried the food on her show before (I think, its hard to recall since I haven’t watched her show in awhile).

    It was in Tasting Table Good Taste today. Those folks are doing a great job trying to include gluten free content that’s good in their newsletter frequently.

    Reply
  3. 3

    Amanda

    I’d venture to say we’ll all see ourselves reflected in this piece. It’s a shame that no one’s story is a diagnosis after just one month or even a year. Funnily, I just got my food allergy test results last week (another thing to investigate in trying to find a path to healing) and my list was equally jaw dropping — 31 staples ranging from garlic to lettuce and beyond. White flag indeed, GD.

    I’d be interested to know if any of the veterans here have experiences they can share with other food allergies. For my part, the doc wants me to do a 90 day elimination of all things on the list and then slowly add back to test for sensitivity. I’m only one year GF and I’m not sure that I’m emotionally capable of living an even more restrictive life in the kitchen.

    And, as always, your work is inspiring GD. Thanks for fighting the good fight.

    Reply
  4. 4

    IrishHeart

    Amazing video. Thanks for posting it, GD.

    I love Dr. Fasano and appreciate his dedication to helping celiacs. His research into zonulin could benefit future generations with possible vaccines.

    I love that he VALIDATED the fact that just going GF is not the magic bullet, but it is the key….but that some people take a long time to heal because our bodies are so beat up.

    My cousin’s wife was one of those banana babies. Another celiac I know was also—and you know what they eventually did? Ate gluten– because no one diagnosed them properly and the doctors said they would “outgrow it” . They suffered serious ramifications as a result.

    Like Jennifer and Mickey Redmond, I went years not knowing what I had. I knew there was something very wrong with me during the worst years I was so deathly ill–and I simply could not get any doctor to see it. I followed the same path as Jennifer–dozens of doctors– until I was sure I would be in a mental health ward, a wheelchair or dead.

    I INSISTED …”SOMETHING is keeping me ill. This is not me at all.” I am not just anxious or depressed or menopausal or have fibromyalgia,blah blah blah….I said this so many times, that even 2 years later, I still shudder at the memory of it all. I probably triggered the disease early on (I had a mysterious bout of illness in high school that my family doctor called virus X as he could not determine what is was. I was sick for a month.) I had many symptoms and conditions develop through the years. I never knew how they were ALL connected until my diagnosis.

    Reversing a lifetime of malabsorption is not easy.
    I was just crying and applauding Dr. Fasano when he said that—it validates us all.

    She does all she can to promote celiac awareness. You do too, D Dude, my friend!!!… and I try my best too. I made it my mission to not let anyone suffer as I did —if I can help it.

    It’s a damn shame how many people go undiagnosed when there is really no excuse for it at all.

    Reply
    1. 4.1

      IrishHeart

      not D dude…G dude!…sorry, hon….long day, very tired… typo

      my bad

      :)

      Reply
  5. 5

    Adalaide

    I was super excited when I saw that this piece was going to air. I stayed up late to watch it and sat through the torture of the first half of the show. I was so thrilled to see that instead of focusing on what happened with CBS, they focused on how this is a horrid and debilitating illness that is complicated and life changing. This wasn’t a crap storm of how we have some trendy disease or are on some fad diet. I felt for the first time in a year like the media actually got something right reporting about this awful disease.

    I also have read and reread Jennifer’s story on her website, and watching her tell it is no less touching. I think we can all related. I remember going over and over to the doctor and being told they couldn’t find anything wrong with me. They didn’t know what it was. Maybe I should try this or that medication, maybe I should see a psychologist. I knew I wasn’t crazy, I knew I was sick but no one would listen.

    If only a channel more people are willing to watch would air this! More people should see that this isn’t trendy or cool. It is real and impacts not only every one of us who has the disease but everyone close to us. Every time I see that Dr. Oz or the Today Show or some such is talking about celiac again I just want to bash my face on my desk because I know that they’ll just talk about how cool I am for having such a fun disease.

    Reply
  6. 6

    IM

    I think it’s absolutely wonderful that the US has such strong advocates. All the good doctors here like Dr. Green and Dr. Anderson have moved on to you guys over there.

    We need more coverage over here, people!!

    Reply
    1. 6.1

      IM

      Also, Does anyone have a link to the written summary of what’s in the video??

      Reply
  7. 7

    Karen Morgan

    I really like your style! Jennifer was a client of mine a few years back and couldn’t of been nicer, so I was really sad to see her treated so poorly. People in general are still slow on the take to accept celiac disease as a pandemic problem; most see it as a diet fad or a flash in the pan. Your piece highlights this problem perfectly. Cheers!

    Reply
  8. 8

    Kim

    As a mother of a daughter with celiac this is so heart breaking. While I am glad we have a diagnosis I fought (and fought, and fought, and fought some more) to get someone to notice what are TEXTBOOK signs of celiac. I had no idea what was wrong with her but I knew my 4 year old didn’t have the mental fortitude to carry on a charade that lasted 12 months. Even more disturbing is her dentist was completely unaware that celiac was the cause of her badly damaged teeth. To this day I can’t get close relatives to test their children despite many of them moving down the growth curves at each check up. Join Team Gluten Free, post on your facebook, educate whenever you can. So many are suffering unnecessarily.

    Reply
    1. 8.1

      Tina

      Kim,

      I feel for you and meet with countless parents who suffer/struggle with this disease with their children. My son is 11 and was diagnosed 5 years ago after a 5 year battle to find out what was wrong. They diagnosed him as Autistic but after lots of testing and trials he came out of a lot of his Autistic issues after the CORRECT diagnosis of Celiac. Parents don’t have to struggle like we all have. We need to educate every second, minute and hour of the day.

      Thanks to our efforts here we have a supportive school system and a great gluten free annual Expo as well as Camp Gluten Freedom for our children. (glutenfreelivingnow DOT org).

      Thank goodness for strong women like Jennifer Esposito who will keep putting this disease in the public view where it should be. It really pains me to think that parents are suffering through this so unnecessarily…. Doctors need educated too.

      Reply
  9. 9

    Deb

    Thanks so much for posting this video. I didn’t see it advertised until after the fact and was sorry to miss it. My 14-year old has Celiac. He was diagnosed when he fell off the growth curve a few years ago. What I am struggling with is why is Jennifer still so sick? I thought once on the GF diet (and she seems to be so careful), you could lead a normal life???? My son doesn’t feel faint or sick at all. Is it because she went so long without diagnosis?

    Reply
  10. 10

    Wendy

    I’m so glad I got to watch this one “after” the ridiculous TV piece w/Dr. Drew.

    Fox Files and Jennifer did an Excellent Job. This is An Educational Show. The other one is just A Sick Joke.

    A year after gluten free ….Now I can’t have chicken or eggs anymore either…..and potato. It certainly did not end with just cutting out gluten.

    Thank you for posting both of these GD.

    Reply
  11. 11

    Gluten FreeK

    What a wonderful piece! Jennifer is so well spoken and so earnest. I’m so proud of her!

    I watched it with my husband who burst out into laughter when Redmon starting talking about mouthwash and even mentioned “Listerine”. I was a bozo and had been glutening myself the past two weeks with mouthwash.

    So, even celiacs need more awareness (or at least reminders:-/)

    Reply
    1. 11.1

      IrishHeart

      LOL….I saw that and wondered if Freeky would see this video…..

      Reply

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