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46 Comments

  1. 1

    cynthia

    Hi GD, It is sad, that people make fun of us that have celiac disease. Would they dare to do this to people with other diseases? And that is where the problem is, they do not view this as a disease they see it as a choice to be gluten free for whatever reason. If we had to take chemo for cancer or daily injections because of diabecties diseases of this sort instead of controlling our disease with just food maybe they would treat us differently. This meaness is out of ignorance of not understanding what it is like to live with celiac. I for one am happy that we donn’t have to take daily injections or chemo etc,. but oh how i wish we could just take a pill for that. Too bad they can’t take a pill for being thougthless and snarky. Thanks again GD for letting us all know we are not alone in this. there i did my rant for the day. stay well

    Reply
    1. 1.1

      Crystal

      Excellent point about “I we needed chemo”, maybe that is the course we need to take to get our point across. Other than a life-long elimination of gluten (and hey maybe we should abandon that word as well and use gliadin, since it is that fraction of the protein that is the actual culprit, but I digress) a bone marrow transplant is the only controversial means to a cure for us. I was near the point of disgust this morning when I called a local chain pharmacy that I haven’t used lately and wants a refill, but also wanted to add to my profile that I have celiac disease. They had no way of pulling this up in their system, I mean, REALLY, with all the research and pronouncements regarding our disease, why can’t the medical community get it even a little bit right?

      Reply
  2. 2

    Alysa (InspiredRD)

    I’m trying to go peanut-free until Thanksgiving. After that, guard your pantries, because I’m coming for the peanut butter! (said no one ever)

    This is getting so old.

    Reply
    1. 2.1

      Molly (Sprue Story)

      Though giving up peanut butter would definitely be a more effective weight loss mechanism than going gluten-free…at least for me. :P

      Reply
    2. 2.2

      Gluten Dude

      I agree it is getting unbelievably old. So old that I almost didn’t post the blog after I wrote it. But I had to put it out there so maybe somebody, somewhere will get the message that this sh*t has got to stop.

      Reply
  3. 3

    Molly (Sprue Story)

    Agreed on all counts, except I have to point out that you aren’t living the SINGLE gluten-free life. As someone who is, I don’t find the idea of a dating website so hilarious. When I posted about it a couple months ago (Ellen got to the make-fun-of-Gluten-Free-Singles party pretty late), I said I was intrigued by the idea because I’d want anyone I dated to be at least mostly gluten-free so that I wouldn’t have to worry all the time about cross-contamination, and so we could share meals. I wouldn’t want to confine myself only to a dating pool made up of only people with celiac (and I hope that anyone I dated would find it in their heart to go GF, at least around me), but as a supplemental option I can see how it might make things easier.

    Reply
    1. 3.1

      Gluten Dude

      Totally agree. I wasn’t knocking the concept itself.

      Reply
      1. 3.1.1

        Sarah

        My husband is awesome 99% of the time… but there are those times where he says “But you ate there before” or complains if I only want to do take out if we both order gluten free so that there is not confusion… If I hadn’t already found the love of my life… I would seriously consider that website. People there would already (for the most part) understand your disease.

        Reply
        1. 3.1.1.1

          Kathie

          I have two GF kids in their 20s and I thought the GF singles site was a great idea…would be so much easier to have a significant other with the same diet…

          I’m tired of all the GF talk…we eat the way we eat because we have to…end of story, the media should stop making it more dramatic than it needs to be…like “reality” shows…

          Reply
    2. 3.2

      Grace

      Yes, obviously I wouldn’t want to limit myself only to gf people – but I see the appeal. I find it incredibly difficult deciding when to mention it to someone; worrying about how they’re going to react. I’ve still never built up the courage to ask them to clean their teeth (or even just rinse with water) before kissing…! I just tried to avoid it until I thought it would be safe. This is probably why I’m doomed to be single for life!!

      Reply
      1. 3.2.1

        Molly (Sprue Story)

        Grace, you and me both. Actually, considering how many more women have celiac disease than men, I’ve sometimes thought dating would be easier if I were just a lesbian. Oh well. :P

        Reply
  4. 4

    Kevin

    Maybe we should make fun of those working for minimum wage? That would go over well and be appropriate because in NJ with an estimated population of almost 9 million folks, it only affects 40,000 folks or 0.4% of people on min wage.

    You say that is mean? Well celiac disease affects at least 1% of the population so that would be 90,000 people in NJ (more than twice the min wage pissed off folks) and no one in the state legislature is having a bill assigned for the state constitution for those who are affected by celiac disease.

    Maybe we can laugh at those with breast cancer too while we are at it? Why not, I do not look that good in pink anyway and it is such a small percentage of those affected anyway with 232K new cases. That is light if you think about 3 million in the USA that have celiac disease, most which do not know it.

    While we are at it lets pick on those with Type 2 diabetes! They say it only affects 1.9 Million folks per year. Still lower than celiac disease. I mean most folks with diabetes eat like crap, are overweight and don’t listen to their doctor anyway so why not make fun of them? Get off your ass and exercise and eat right please! That would go over well don’t you think?

    Heck, this should get more attention than the min wage debate so who the heck is looking out for us? Oh yeah, no one. Thanks for nothing!

    Signed,

    Very annoyed Kevin!

    Reply
    1. 4.1

      Gluten Dude

      Kudos Kevin for a great comment…thanks!

      Reply
  5. 5

    GipieGirl

    What makes me really disappointed is the likely effect this widely shared news story could have on children diagnosed with celiac. Bullying is bad enough already for kids with the disease (as with kids with any disease, diversity, or difference)… but the grownups who wrote this article clearly do not care enough to consider that.

    Reply
  6. 6

    Jersey Girl

    GD-

    Infuriating post. I was going to send you links to a bunch of news feeds that were covering this trending gluten is a myth, yada yada yada but I was too freakin mad I couldn’t do it. Thanks for posting this, we need to get the word out there. motherbleepingfers.

    We need to reach known celebs/atheletes with celiac to stand up for us. How can we do that?

    grrrrrrrrr.

    Jersey Girl

    Reply
    1. 6.1
  7. 7

    Claudia

    It never ceases to amaze me how people make fun of the “gluten free lifestyle” As mentioned the previous comments, lets make fun of diabetics, or people who are poor, maybe lets make fun of someone with Dementia. I say f–k em! I get “oh you can’t have this can you?” or people feel sorry for me. I don’t feel sorry for myself. I think we should do some creative visualization. Imagine Gwyneth Paltrow wearing a t-shirt with “Who Farted” and Kim Kardashian is with her and she is wearing a t-shirt with “I’m With Stupid”. Makes my day.

    Reply
  8. 8

    Gloria

    As a 20 year celiac I always had high hopes of gluten-free being recognized more. Back then I couldn’t even buy a sack of rice flour without seeking out a Health Food store and there were NO Gf products available to me except by mail. But I have almost given up all hope as I have seen things get worse and worse. As a dietitian I am horrified at the gf garbage people eat. I almost never eat out because people just treat it like a fad diet. And now we are the butt of jokes.
    I will admit that it always annoyed me when people say they have a gluten allergy because I knew it was not accurate, but you are right, having that as a headline is misleading.

    PS. I don’t like the picture of the mouth, it is frightening and gross.
    PSS I don’t like the pic of Ryan Seacrest either.

    Reply
  9. 9

    Lisa Mims

    I applaud the fact that you are willing to talk about this in public.

    Even though I have biopsy-diagnosed celiac, (Marsh Level I, despite being gluten free for over a decade), I’m in the minority of people who have celiac, that don’t have the “common” genetic markers.

    The media influences doctors as well–I’m afraid to change doctors for fear of having to go through all the testing again.

    I agree. This has to stop.

    Thanks for talking about it.

    (And *where* is the study that Jimmy Fallon was talking about that says it’s all in your head? The longer I have celiac, the more I find out that people in my friends and family have it. Where did they get that information?)

    Reply
  10. 10

    M

    Days like this make me want to hate everyone (except those who understand). I’ve been on kind of a media fast and I refuse to click on any of those links.

    I’m newly diagnosed & haven’t even come out as gluten-free to many of my friends. Just don’t really want to deal with the grief & Spanish Inquisition. I was going to go to a support group this week to try it out, but was just too tired. I feel like I’m never going to go out to eat again and sometimes I think I’m okay with that.

    Rage on!

    Reply
    1. 10.1

      Jazz

      I think most people here can relate. I was diagnosed in May and I did not want to deal with explaining it to everyone. I knew there would be eye rolls and disbelief and all of that. I have gotten over that now and I tell anyone who needs to know friends, family, in-laws anyone I would have been expected to “break bread” with. I hate that saying now. Just as a word of encouragement it does get better. The rage lessens with time, and those people who love you will learn to understand.

      Reply
  11. 11

    Crystal

    So amongst all the followers of the Great and mighty Dude and of course Mrs. Dude, let’s just all chip in and buy an island and allow no gluten to cross our shores!!!! I say this only jokingly, but goodness wouldn’t it be great!

    Reply
    1. 11.1

      Martha Lardo

      I’m in. Someplace safe would be amazing. So tired of getting glutened no matter how hard I try to be safe.

      Reply
  12. 12

    Musicmidget

    This is so frustrating on so many levels. And as someone who has celiac, I almost feel worse for the folks who are intolerant because there’s no medical test that can prove that. And stuff like this just perpetuates the idea that we’re a bunch of whiners. The only piece of credible journalism I’ve seen so far on celiac disease is the piece Fox News did on Jennifer Esposito after she was forced off of Blue Bloods. Come to think of it, that may be the ONLY piece of credible journalism Fox News has ever produced. ;)

    Reply
    1. 12.1

      Jazz

      Too funny…Fox News got something right. WOW. I am cracking up at this. Not to hate on Fox but…..

      Reply
  13. 13

    AmandaonMaui

    I think the conversation needs to be redirected back to celiac disease and non-celiac gluten sensitivity, instead of “gluten free.” Eating gluten free may be the way we treat our illnesses, but the gluten isn’t the cause. The gluten is the trigger.

    It may be really hard to do, but I think we need to talk more about the diseases, and the symptoms, than just about how we don’t eat gluten. I’ll admit that my website name includes the words “gluten free,” but that was before I knew how much of a problem those two little words were going to become. I also thought they’d be useful search terms for people seeking information on how to stay safe, and avoid their celiac triggers while living on or visiting Maui. Now I almost wish I’d used different words.

    The media is a problem. The media is about money, politics, and oppression. Changing the media may be difficult, but the best place to start is with media literacy. I suggest checking authors like Jennifer L. Pozner who are media literacy activists.

    Reply
  14. 14

    Jazz

    As people with celiac disease we are twice cursed. First by this disease and second by the loads of misinformation that is out there. The media spins everything and unfortunatly fad diets are always poping up. I just hope the popularity of the non medical gluten free diet passes and we can slip back into the shadows rather than the headlines. I dont need the world to understand celiac. I need the people who manufacture food to understand. I dont think I will ever trust a resteraunt again. I keep hoping this will change but as of now I only eat at home. For the other brave individuals you deserve to be treated with respect and the same level of caution other food issues are given when eating out.

    Reply
  15. 15

    IrishHeart

    One thought:
    None of these people would scoff the GF diet if they had a loved one with celiac.
    sigh….just a big fat sigh…..
    That’s about all I can muster today reading this crap..
    (that’s not entirely true. I said a bunch of swear words, too)

    Second thought:
    There is no such thing as a gluten allergy.
    I never use that phrase because it’s just not true.
    Not even when making my case in a restaurant.

    Third thought:
    We need new tee shirts!

    “I have Celiac Disease and it’s not funny”
    and on the back.
    “Celiac awareness”… failing miserably in the wake of the GF fad.

    Reply
    1. 15.1

      Jess

      Irish Heart,
      The sad and tragic thing about all of this is that most of these people probably do have a loved one(s) with celiac disease who are undiagnosed….

      Reply
      1. 15.1.1

        IrishHeart

        True that, dear Jess.

        Reply
    2. 15.2

      John

      I had a custom t-shirt made up (cost me ~$40) that says in large impact font: “ASK ME ABOUT MY CELIAC DISEASE”. I’ve only worn it a few times so far but always at times when I know I’m going to be around a lot of strangers in a casual setting where there’s food freely available. Makes me feel like a one-man public education task force.

      Reply
  16. 16

    Mindy

    You know, I read something yesterday that said there was such a thing as “celiac rage”. I have been in such a mood this past week and I am not even sure why. Perhaps it started when, after almost a year of trying to get my cousin to get the blood test, she finally asked her doctor and he practically laughed at her and told her “I am not testing you for that. You don’t have it. If you had that you would be pooping all the time and you would be skinny and pale because Celiacs don’t eat.” umm really? I am still so mad about it that I am half tempted to pose as a new patient and tell him that I think I may have Celiac, and when he tries to feed me that bull**** I would calmly tell him that as a matter of fact I was diagnosed with it and then give him a packet of information along with a piece of my mind….. Ignorant, arrogant fool… anyway…. This post just makes me mad too… I used to like Ellen! I may have to just stop watching her for that. I actually think that dating site is a good idea! I am married, but kind of want to sign up just to find friends I can talk to that ACTUALLY UNDERSTAND! Maybe they should just create a gluten free friends site… Ugh…. I just need to breath…. Sorry for the rant…

    Reply
    1. 16.1

      IrishHeart

      There is such a thing as “gluten rage”. This applies to people who still ingest gluten and shouldn’t and it affects their bodies and minds.
      (there is plenty of science to support the neurological effects of gluten and I have posted it here on GD’s site many times)

      but… no scientific or medical evidence of “Celiac rage” exists that I am aware of. And I do not like this term at all. :(

      So, in the interest if getting it right…(since we are all outraged at being painted in a poor light?) maybe we should not coin a new phrase and have celiacs depicted as being “in a rage”.

      We get a bad enough rap…even though we are justified at some of the things posted on the internet……you know, the endless source of undocumented bullshit??.

      Maybe it’s just “justified outrage at the BS”? ;)

      Reply
    2. 16.2

      Mindy Hill

      I am so annoyed with this I decided to email Ellen. So here is what I said.
      Ellen,
      I have been a fan of yours and watched your show frequently. But, recently I saw a clip of an episode and I just wanted to express how thoroughly disappointed I am in you. In the clip you were showing your viewers some weird dating sites. Included in that was a Gluten Free Dating site. I can see how something like that could be funny to someone who knows nothing about Celiac Disease and how it truly effects every single aspect of your life. But maybe before you start making a joke about something so serious, you should do some research. It infuriates me that the media and people like you are turning it into a big joke. It makes it hard for people like me to live a normal life. Would you like it if someone picked on your way of life? I don’t think so. Did you know that the depression and suicide rate among Celiacs is higher that the normal population? How you do think that teenager, who is trying to heal himself, feels when their peers pick on them for something they HAVE to do to stay healthy? Don’t you think that child will feel like an outcast and become depressed? I am just appalled at the lack of knowledge out there and the people who are making this into a big joke. I actually don’t think seeking out someone who understands and won’t roll their eyes at you isn’t such a bad idea! Just like you seek out others who understand your way of life. I think you owe Celiac patients an apology, maybe then I will consider watching your show again.

      Reply
      1. 16.2.1

        IrishHeart

        Good for you. Let us know if she responds.

        Reply
  17. 17

    Gretchen

    Eh. Gluten eaters are such a bunch of whiners. I could care less what gluten eaters have to say about me or if they roll their eyes. And media driven gluten eaters are the worst. Being bullies because of ignorance is pitiable.

    Reply
  18. 18

    Xzavier Smith

    Empathy edges towards mutual understanding.

    The myriad consequences resulting from celiac disease and gluten sensitivity, culturally contentious issues, manifest far beyond the physical and psychological trauma stemming from years, even decades, of misdiagnosis and subtle harassment from medical professionals, family, co-workers, and sections of the media. I am indebted to this experience, which cultivated a wealth patience necessary to persevere as I continue to regain my health and help others.

    An open heart
    An open mind
    Our deepest thoughts
    Are always kind.

    Reply
  19. 19

    Jennifer

    Right on, Gluten Dude. The media’s handling of GF is pretty infuriating, but I try not to let it get me too worked up because in the end it’s only hurting me. I read the comments about gluten not being an “allergy” and my thoughts on that are it’s the easiest way for me to explain it to friends, or to a server at a restaurant. I don’t want to be spreading the wrong information though, but personally I don’t want to have to say that I have NCGS because then people still look at me like, wtf?? And then they think I’m not “legit” enough because I don’t have celiac. In a restaurant, I say “I have an extreme allergy to gluten, basically celiac”- I guess I don’t like to lie so I have never just said “I have celiac” – is there a different way I could handle this?

    Reply
  20. 20

    Videophyle

    The source of the negativity that the media is reporting are doctors, in this case a Dr Stukus who is an allergist. http://now.msn.com/david-stukus-says-that-gluten-allergies-dont-exist Again and again they disparage the gluten-free diet and try to say that people shouldn’t be on it. Personally I think it’s okay for people to experiment with the gluten free diet and see if it makes them feel better. And if they want to be gluten free it’s still a free country, right? If you have to wait for a doctor to do the right tests and get up to date on everything they should know about celiac disease, it’s a long, long wait.

    Reply
  21. 21

    Kelly

    I really resent the media’s portrayal of celiac disease and gluten because it trickles down to the general public and the people I deal with in every day life.

    I went to a wedding a couple of weeks ago and the invitation stated there would be a gluten free menu available (probably a cross-contamination nightmare, but hey, at least it’s an option). The waitresses were coming around at the reception to serve the food and when I asked about the gluten free chicken option, she got a major attitude. I’m thinking to myself, Sorry you have to go back to the kitchen, pretty sure you’re going to end up going back there for something anyway…not like I demanded to have it immediately or something. Geeze. So much hostility.

    I brought a gluten free item to a neighbor’s Halloween party last month. None of them knew I have Celiac and I didn’t tell anyone the cookies I made gluten free until someone asked me why I wasn’t eating any of the other food. Then it was this 20 minute conversation about how that’s “weird” and stuff like “You’re already skinny, why are you on a diet”…ughh I’m so tired of explaining this over and over! XD

    Reply
    1. 21.1

      Kelly

      P.S. My three year anniversary of my celiac diagnosis is November 15….woohoo(?) l0l….Well at least I can celebrate better health!

      Reply
  22. 22

    Shauna Silva

    The ignorance of society is disgusting. I watched those clips and I couldn’t even feel anything, except numb. The media has no right to knock us for being gluten free. We have a serious illness. Gluten free food is our only treatment.
    Unless the media does their research on Celiac disease and gluten free living, they need to shut their mouths. They have no right to report on a topic they know nothing about.

    Reply
  23. 23

    Terry O.

    Last summer my insurance company’s newsletter had an article on “food fads” and I warily read the article to see what they said about gluten-free diets. Oddly enough, it was fairly innocuous – after all the media scorn I was surprised. But then insurance companies have a vested interest in a person NOT using up medical resources, right?

    http://www.wellmark.com/blue/Summer2013/foodtrends.html

    Reply
  24. 24

    Krissy

    I made the decision that when I go to restaurants instead of claiming gluten intolerance, I would claim celiac if asked. People take celiac disease, in my experience, than non celiac gluten intolerance (my dx). I get told that it doesn’t exist or that it’s all in my head (yeah, cause constant, untreatable joint pain and documented inflammation in almost every joint that had me treated for RA for at least 6 months was all nonexistent). I have even had people who have Celiac treat me as a second class citizen because I don’t have the official so-called gold standard diagnosis that they hold dear (me, bitter? of course not! Why would you say that?). Articles like that just make it worse for me because it gives those who already doubt me ammunition. I put up with a lot from friends, family and strangers. I don’t need the media fanning the flames that make me hate going out. It’s never until someone actually goes GF that they realize just how hard it is to do.

    Reply
  25. 25

    EagleWindSpirit

    Put the vegan freaks in the same file. That we can’t kill an eat anything that has feelings. WHAT!!, I guess we should get rid of all animal predators, like wolves, Lions, Hyenas, eagle, hawks, snakes, crocodiles, Piranhas, Komodo Dragon, Gray Wolf, Great White Shark, Brown Recluse Spider, and the million other predators that exist in nature. Many of these “vegans” are ironically naturalists who are against anything that is usual or naturally normal. Do you know the human body is intended to digest meat too? But I guess nature needs a lesson from overly educated and overly self important people who have decided to hate their very own nature and body.

    Reply

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