I expected a bit of a backlash from taking a stand against The Disney Channel. But when the story was picked up by CBS, The Hollywood Reporter, Huffington Post, Perez Hilton and tons of other media outlets, it lit a match and boy oh boy…have I gotten a backlash. I’ve been called pretty much every name in the book, most of which I can’t print.
Though kudos to JB182Dog for coming up with “Gluten Douche”. Insulting, yet oddly comical.
Amy, who started the petition on change.org, has taken it even worse. She and her family have been verbally barraged with the most debase comments you can imagine. Simply for standing up for what she believes in. Nice…huh?
Hey…we put ourselves out there so we’re fair game I suppose.
So the question becomes…was it worth it?
Short answer…hell yeah!
There is such an overwhelming public misconception about gluten-free that we need to continue to strive to get our message across in any manner possible.
I want to mention two things that happened yesterday that perfectly highlight the misconception vs the reality of what gluten free means.
The Misconception of Gluten Free
Watch this video and you’ll see the problem wrapped up nicely. The video is from the Chelsea Handler show last night. She is a comedienne (and a pretty good one at that) and her job is to poke fun at things. So when she mentioned the Jessie episode being pulled, I knew she’d have at it.
But it wasn’t the jokes that made me angry, it was everything else.
- Look at the image to the right. This is a screen grab from the video. They chose to use the words “Celiac Episode” though nobody once mentioned celiac disease in the entire segment. So instead of mocking the gluten-free wannabes (who should be mocked!), they are taking on celiacs.
- Chelsea herself says she is allergic to gluten, but still eats it anyway. If you eat gluten, you are not gluten free. So please, I’m begging you Chelsea, as you so eloquently put it, shut the f*ck up about it. You’re part of the problem.
- We’re compared to vegans. No comment.
Until we can change the misconception of what gluten-free means for us, we will continue to be the butt of people’s jokes. We’re high-maintenance. We’re whiners. We’re fad dieters. And the sad thing is, if I didn’t have celiac disease and I just listened to the media, I’d probably think the same thing until I was educated about it.
But why educate when it’s easier to laugh at us?
The Reality of Gluten Free
Living gluten-free can be a total drag. I don’t know one person who lives with this autoimmune disease that wouldn’t give their left leg to have their normal life back.
I was approached on Facebook yesterday by a mom whose 18 year old daughter has celiac disease. Here is what she asked me:
Would you share my daughter’s English Paperwork on Celiac Disease Bullying? It is her project written from experience. I’m having a bit of difficulty posting it as it is way to close to me and cuts me like a knife. She makes light of the things that happened to her, many of which she left out, from having food thrown at her, being called “special”, to classmates video taping her in moments of harassment by others. It was “real pain” to live through, yet there is much agony to read what children and young adults go through when they are unaccepted for their disabilities.
That’s her to the right. She’s an amazing young woman.
Please read her English Paper: That Girl by Jayci Drew (the story of celiac bullying)
This is the reality of living gluten free. The bullying, the lack of fitting in, the snubbing by other adults, the need to “prove” she needs to be gluten free. And at the end of the day, still feeling like crap much of the time. This is all part of the package.
You still think it’s funny?
Looks like the video has been blocked by E! Thank you for carrying the torch for all of us!
Thanks. Just linked to it instead.
CBS just had a commercial for Prevention of bullying for kids with food allergies. I was watching the Doctors and the commercial was during the show! It had one shot of kids eating cupcakes and a child looking sad outside the room. I was amazed! YAYYYY awareness!
I meant to say~~AMAZED that there was a public service commercial, not amazed that it happens.
Dont stop what you are doing….change takes time. And thanks for all you do Dude!!!!
Jayci – Your essay was beautifully written. It must have been difficult to share your experiences, so I thank you for being so honest. Celiac disease runs in our family too and I worry about my niece who is only in first grade and has many other allergies in addition to her Celiac disease. My hope for her is that she will grow up to be as strong and beautiful as you.
Thank you.
Thank you for bringing up the gluten Disney episode! To be honest, I’m really surprised that Disney did that in the first place. They’re usually really great about food allergies at the parks. It’s to the point where we actually have a certified gluten free item available to us, where-ever we go. So it’s odd, ya know?
But, I really don’t think we should be making fun of the gluten free “wanna-be’s” though. It’s a bit like stooping to their level and bullying on our own end. Any kind of bullying is not right.
Plus, with the non-celiac people, we don’t know the whole story. Like Chelsea might be a NCGS person, where when she does eat it, it doesn’t kill her, but rather make her really sick.
Or she might be just a fad dieter. Who knows. Either way, we’re not in the place to judge, bully and make fun of back. We have to be the bigger person and just let it go.
Sorry for the long soapbox comment. Just I’ve been seen a lot of elitist type bullying from Celiac people lately, and to be quite honest, I’m tired of it. Sometimes it can be just as bad as the bullying from the bread eating, no allergies/sensitivities/diseases people.
Point taken Chrissy. I assure you I am not a “celiac elitist”. Anybody that gives up gluten 100% for health reasons falls into the same boat as a celiac in my book.
I just don’t see that what I am doing is bullying. “Education with an edge” is what I like to call it.
You said “So instead of mocking the gluten-free wannabes (who should be mocked!), they are taking on celiacs.” Since this diet is so hard to follow I doubt there is anywhere near the percentages of “wannabes” as is claimed. And so what if people want to try it. It is totally hypocritical for you to mock others.
Because people should not ‘try’ diets they know nothing about. Gluten and Casein are PROTEINS that the BODY NEEDS. PERIOD. I think an allergy to a necessary protein is ludicrous and anyone believing they have this ‘celiac disease’ needs to go eat a big cheese pizza, wheat crust, pepperoni, flour dusted dough, with the little crumbs like some places use underneath, and a big ol’ casein protein shake.. 1100 calories worth.. then go work out you lazy —-.
Ah Doug. So much anger and ignorance. No need to spout your views here. Or anywhere for that matter. You are just making yourself look really, really stupid.
Aren’t trolls so sad? Doug, for your sake, I hope you find a more fulfilling hobby.
My father was someone much like you. He delighted in being hostile to others online and thought it was fun to upset people for no particular reason other than the fact that he didn’t like people. He died a bitter, angry person with no friends. Even his own wife–among just about everyone else he knew–is glad he’s dead. Trust me, it’s a terrible waste of a life. I don’t know you, but I feel compassion for you. Happy people don’t spend their time leaving senseless angry comments on blogs they know little about.
And for the record, I have an elderly friend who began her nursing career in the 40s. In those days, celiac was thought to be a rare disease of childhood. They didn’t understand it as well, and they didn’t have the blood tests then to confirm the diagnosis, but they certainly saw cases and knew it existed. They used to put the kids with celiac on banana diets, because they didn’t know what else was safe for them to eat.
IMO, Gluten Dude wasn’t calling Chelsea out about not having Celiac Disease. He was calling her out about claiming to need to be gluten free and then publicly eating things that contain gluten. That behavior makes it more difficult to get people to take the need to avoid gluten (and cross contamination) seriously.
Bingo!
Um, Dude, did you not write that gluten free wannabes should be mocked? Celiac is serious, but there are other valid reasons people go gluten free. Our daughter has epilepsy, and gluten can contribute to an increase in seizures. Live and let live and don’t expect everyone to understand or show compassion.
I will say it one more time. I support ANYBODY who gives up gluten 100% for health reasons.
for the love of mike! I do not think people read very carefully.
He said gluten free “wannabees” — which means people who dabble in it for the fad aspect or to lose weight or who do not take it seriously and who make this very difficult for the rest of us who need to be GF to LIVE.
That very mocking laughter I saw on the Handler show last night is what I am talking about. She merely said the words “gluten free” and that crowd and those other guests of hers scoffed, laughed and mocked the GF diet mercilessly.
They do not know what it means to be a celiac..
And your daughter is not a GF “wannabee” if she adheres to a strict GF diet for medical reasons.
She is gluten free for all the right reasons.
Who cares why someone is gluten free? I think we all just want to feel well. Perhaps the mocking laughter you heard on the Handler show was the same mocking laughter you’re dishing out.
Again, live and let live and ignore the jerks.
Please don’t tell me how to “behave”. I’m the biggest “live and let live” kinda girl there is. I do not give a rat’s butt what people do
with their lives— as long as it does not affect me or those I love.
Then, I care. A lot.
GF “fadders” make this disease and those of us with it a laughing stock. Some celiacs and NCGIs are not taken seriously by restaurant staff, co-workers, family and friends,and even their own doctors because they think it’s not legit or serious enough.
Maybe if you read some of the heart-breaking stories that are posted here or on celiac.com, you’d understand WHY people are so upset when celiac and the GF diet are mocked.
People who make fun of celiac disease deeply offend me. This effing thing tried to kill me. I had to come back from the walking dead. You have no idea what my life was like and how it affected my family.
People who scoff the disease and the treatment of it offend me.
I was just trying to explain what the Dude said because obviously,
you did not read it carefully — or you would not be getting
so adversarial over it.
I chose this path of explanation one more time (rather than just saying “screw you”) because I think you are probably a nice person –and I am a very nice person 🙂 –but you seem to be missing the point of the whole thing–and it is this:
Celiacs are NCGIs are tired of being shit on by the media, comedians, ill-informed doctors, people we know, and people we don’t know— and the last thing we need is someone telling us we should not be upset about it.
.
Best wishes to you.
Amen IH. It is the laughter with Chelsea making light of the diet and Disney having the same laughter. There is nothing funny or amusing about a child having a food thrown at them that could make them deathly ill. Nothing.
And then to have her say she tries to not eat the bread, but does it anyway. She obviously has no clue how many of us react to gluten.
There is no way in hell I could eat a piece of bread and not suffer for months…. Affecting my work, my relationships, my ability to function in daily living period.
I had my teenage son and my husband watch the Disney piece and Chelsea Lately – neither one laughed. Neither one have to be gluten free and neither one found this amusing after knowing how sick I was and how I still can get from just a teeny amount.
I agree with Gluten Dude here. People need to shut up unless they have a true sensitivity/ intolerance or allergy. They dont have a clue what we all struggle with. Then when we go out they take us less seriously and our health is at stake. I need to be alive. I have to support my kids, and well my husband would die without me. I have the right to be pissed. And so does anyone else. Good post Ellen
I don’t know Chrissy, I would think if gluten makes Chelsey truly sick, she wouldn’t knowingly eat it for any reason. I know I sure stay away from it…
Too many people who can eat gluten are playing around with the gf diet claiming to be intolerant when they just plain aren’t. I honestly believe this is why people who really need to be gf aren’t getting any respect. The Dude is right when he tells some of these celebrities to just shut up….They are making a mockery of a very serious medical condition. It’s a shame. I think there has been far too much of the wrong kind of “awareness.” To me it seems to be more about the selling of gluten free diet than the actual education about celiac disease.
I think people are clearly confused about gluten. I think some people actually believe it makes them fat. As far as I know, it’s calories that cause weight gain…not any in particular, just too many.
I realize I’m not much liked in the celiac community for my objective views. It actually does hurt me…I do have feelings.
I’ve been diagnosed since before some of you were even born…let alone knew what celiac was. Yes, I am blood and biopsy diagnosed. I have faced a lot of criticism for daring to talk about my diagnosis. The most recent was on Twitter. Believe it or not, the gluten free community mostly rejects me. I guess I’m supposed to hide my diagnosis. I am alone for the most part.
The Disney show is geared towards our young people. Therefore, they have a responsibility to teach our youth the right way to treat others. This episode was wrong on so many levels…I have a friend with the severest form of neurofibromatosis. You have no idea how badly he is treated by society… ADULTS actually mistreat him! It’s just shameful. He isn’t contagious… as a matter of fact, he my die from his type of nf. Kids need to be taught right from wrong starting at a very young age.
As an adult, being made fun of for my dietary restrictions is just annoying and occasionally hurtful.
But what that episode of Jessie portrayed was straight-up bullying. With our current focus on the dangers of bullying, it’s amazing to me that Disney even considered airing it in the first place. That the media is having a field day with Disney pulling the episode is just proof that (a) they have nothing better to do with their time and (b) they’re too shortsighted to recognize that the real issue is bullying.
Jayci, your essay was beautifully written. It’s articulate people like you who can help put a stop to bullying over dietary restrictions.
Thank you so much for posting Jayci’s essay. I have printed several copies to hand out to my friend’s with kids with allergies and celiac disease. I will let my child read it when she is older (she turns 6 in 2 weeks). I want her to grow up and be as understanding and a positive as Jacyi is.
Another great post. I have not been bullied – just the random insensitive comment. The last random comment came from a guy who told me that he had really good genes (implying that mine were fundamentally flawed). Jerk-wad.
But, sadly, I’m a baby-celliac. I’m not even 6 months old yet. I’m sure I’ll get my fair share soon.
You’ll be out of your celiac diapers in no time 😉
Thank God because these are beginning to chafe! 🙂
🙂 🙂 LOL.
Jayci’s paper was very well written and heartfelt…and you are so right…who would choose this? I had someone tell me the other day they were thinking about trying being gluten free because they had heard you feel better on the diet. I just told her to get tested and it’s all in or nothing. It’s not something you just do half way…and if I didn’t have to do it, I certainly wouldn’t choose to, as it IS really hard. But all that being said, for me, it is SO worth it. Thanks so much for what you do to bring real awareness…
I, too, am disappointed by your suggestion that GF wannabes should be mocked. Chances are, if someone has given up gluten, they are doing so with an intention of feeling good and bettering themselves. Why does that warrant mockery?
There is far too much that we don’t know about the effects of gluten on humans, on autoimmunity, on the digestive tract, and I could go on to suggest that people who forego gluten without a celiac dx deserve mockery.
IMO, NO ONE deserves to be made fun of, and certainly not for their diet decisions. Eating is fraught with enough baggage in this country, don’t you think?
Here is who I mock: Any Kardashian and any celeb who says they’re gluten free but then still eat gluten. They’re fair game.
Lame answer.
I support him! No, it’s not a lame answer. If you’re going to claim to need to eat gluten free then do it 100% of the time! You want to feel better 100% of the time don’t you?
Gwenneth Paltrow! She is a joke too
I think that because it has become a huge fad-diet, as well as vegetarians and vegans, it becomes mocked. Though there is a disease that forces some to be gluten-free, I think a lot of people don’t realize that. And vegetarians and vegans shouldn’t be picked on either, because they aren’t all doing it just to fit into some hipster trend. But mocking people for their diet whether they choose it or not is ridiculous.
I think the Disney episode sounds inappropriate, though I haven’t seen it so it depends on the context, like if they showed this bullying to explore why it was wrong or if they were showing it for laughs. However, this is Chelsea Handler so I wouldn’t read too far into it. It’s like being offended by Daniel Tosh. They are going to make fun of anyone for anything and really not care or be completely informed about the topic…
Non-celiac gluten intollerance = gluten-free wannabes (who should be mocked!) ??? Aren’t we all on the same team here? Celiac snobbery should be avoided as we know better than others how hard a proper diagnosis is to come by. If someone feels better by not eating gluten that should be enough.
I’m banging my head against the wall here. Please folks…NCGI gets the same respect from me as celiac disease. I have NEVER stated otherwise.
Didn’t mean to blame you 🙂 I guess I wear a chip on my shoulder about the issue. It is hard because some people are very firm in their belief that gluten only affects celiacs. I had positive antibody and genetic tests but never had an endoscopy because I went gluten free too soon and was working with a doctor who didn’t fully understand.
Understood. This community is totally not like that…promise.
I tested positive for antibodies but never got an official diagnosis, and have had a hard time getting medical people to take me seriously. But I’ve never felt mocked by G. Dude or anyone here. I feel in like-minded company.
The people who view gluten-free as a lifestyle choice for the trendy or see it as the latest fad diet to try out–or announce on TV that you can be sensitive to gluten but still eat some–those people make our lives (whether we have celiac, non-celiac gluten sensitivity, gluten ataxia, DH, epilepsy, autism…) so much harder, and less safe, that they should be fair game for critical discussion.
well said, EJ!
and from all the reading I have done, testing positive for antibodies IS indicative of Celiac (despite no biopsy) and I am so sorry no doctor understood that test result.
Thanks, Irish. And I loved your response above to those who think we have no right to be upset or to respond to these kinds of things. Denying the validity of others’ perfectly reasonable reactions is a form of cruelty in itself…among other things.
And I’m 100% with you on the antibodies, but I appreciate the comment. My doctor at the time (12 years ago), was actually remarkably sane about this. She said that I obviously had a lot of inflammation going on, and the thought of causing more inflammation by doing an endoscopy seemed wrong. She suggested the option of going gluten free for 3 months without it, to see if it made a difference. (You can guess she wasn’t a gastroenterologist or surgeon, and had no money to lose by this suggestion.) The difference was so profound that I have no doubt I have celiac disease, or at least some type of serious gluten-mediated illness. But almost every other doctor over the years has stridently tried to insist that I can’t possibly have that diagnosis. In spite of a positive antibody panel at the time and the fact that I have severe GI, neurological and other symptoms if I so much as ingest a crumb.
EJ
MY GI doc (the one I have now, not the one who left me to die)
would look at your test results, your improvement on a GF diet and
say: Looks like celiac to me.
But he is one of the rare, enlightened ones who sees this beast for what it is. He took a chance and biopsied a man who was seronegative, did not have the genes and the man’s villi were totally flat. He knew in his heart the man was suffering from malabsorption and he was not going to “play by the AMA rules” and let the guy die.
Diagnosis or not, we are all in the same boat. 🙂
My DX was hard-earned, but it took almost dying for me to get someone to put it on paper.
There are many celiac elitists who disagree with this gluten spectrum, who think blood- and biopsy- proven is the only “right DX”
but I am not one of them.
And for the record, neither is Dr. Fasano.
They have proposed that the new criteria for DXing CD is 4 out 5 clinical markers:
symptoms, positive blood panel, positive biopsy, gene test, and resolution of symptoms of a GF diet.
This way, people will stop falling through the cracks and the idea that it takes an average of 6-11 years for a diagnosis will become a thing of the past. We can only hope.
My diagnosis did not come from traditional means either. In June 2010, after showing the symptoms of metabolic syndrome and development of diabetes type II, my husband and I went on a version of the Mediterranean diet that resulted in what was effectively going “gluten free” for 4-6 weeks (the first 4 weeks of this diet had absolutely no refined grains or pseudograins in it). I felt better than I had in years and the mood problems, IBS symptoms, and ability concentrating that I had struggled with for most of my life disappeared.
After my husband and I lost 50 pounds between us (I was nearly 300 lb at the time) we went out to celebrate with a thin crust pizza. Within 45 minutes I was in excruciating abdominal pain and nearly blindly psychotic and running on rage. We were both freaked out, and so I called my doctor, who had some knowledge about celiac. Because I had been effectively gluten free, and because as a result of that a biopsy was probably not a good option (not to mention that I cannot be consciously sedated for an endoscopy), he took an extensive family history and asked about some things that made no sense (family history of tinea skin fungus) and some that did (family history of IBS and diverticulosis, family history of frail children, family history of autism managed with a GFCF diet). I had all of those things. And then I told my grandmother’s story – a young girl who only survived past early childhood in the Depression because her doctor was a classicist who had read Greek medicinal documents and who treated her emaciated condition with rice gruel cooked in goats’ milk – which happened to be the only foods she could keep down. The minute he heard that, he knew what he was dealing with.
It could be argued that this is severe NCGI. But the strong family history suggests otherwise. And apparently researchers at Columbia, Chicago, and Maryland agree… Knowledge of celiac has existed for thousands of years. But probably very few survived into adulthood, with many dying in childhood as emaciated frail children.
Irish, it’s heartening to know that there are at least a few sane doctors out there. Celiac and other gluten-related illnesses are so misunderstood, it’s tragic. As you know.
Claudette, your story is fascinating. You were so lucky to have had such a knowledgable doctor! Thanks for sharing that.
I was wondering what the connection might be with fungal infections. That’s been a big problem for me for years. But thinking about it, the infections improve with probiotics, and celiacs have messed up gut flora… There are so many insidious dimensions to this disease.
Jayci !!,
You are not only beautiful, inside and out, but your paper is very well-written! 🙂
May I share with you this quotation which has been a source of inspiration for me?
“Life is not the way it’s supposed to be. It’s the way it is. The way we cope with it makes the difference.”— Virginia Satir
You are a courageous young woman! I have no doubt you will have a long , happy and successful life. Many blessings to you!
Dude,
I just happened to see Chelsea Handler last night (flipping through the vast wasteland that is TV) and my first thought was :
“Well, she’s a self-proclaimed drunken sod who makes a living scoffing everyone and everything” –so that’s “her thing” I guess…but if she has “gluten allergies” (argh!) and it makes her bloated and itchy (her words) , well, duh, she should stop eating it.
There, I enlightened.
Do I think it will help? Nope.
Next.
Here’s what somebody posted on my Facebook:
“Maybe if she laid off the gluten, she wouldn’t look so tired and haggard!”
well, all that vodka she says she drinks…. may have something to do with it too.
🙂
I just watched the clip and came to realize I’m allergic to Chelsea Handler….”Chelsea, Chelsea, Chelsea, you poor misguided ####”.
There is no magic bullet for anyone with “this” – everyone who can’t ingest gluten, in any way, shape or form. The only way we will survive is to avoid gluten all the time. Hey, if a person actually does get sick from eating it and continues to do so, they’re not tougher, they are just stupid and like Celiac, there’s no cure for stupid…..yet.
Sue, you make me giggle.:)
i love this. i’ve heard people say how they shouldn’t eat gluten but they do it anyways as if it’s some cool tough kid move. and i’m just like what? you do realize you are killing yourself? l
In the UK gluten free isn’t such a big diet fad, and I have been fortunate enough to not have experience any kind of bullying because of my diet. But I am worried that at some point ‘eating gluten free to get skinny’ will get big over here.
this is so upsetting because i was a fan of chelsea and now i just really don’t like her. i could understand this kind of reaction if a show like Family Guy did this because no one is safe in family guy and it is a show for right minded adults (i think). the problem was that this was on disney channel and showing this to children is bad. no matter what the situation was, it was still bullying and they shouldn’t be glorifying it no matter what justification they may have. Then to go and say we take it too seriously. like what? yea ill make sure next kid i see having an asthma attack i’ll go and take his inhaler cause he’s going a little over board, i mean he should lighten up about it right?…. this kind of thinking is so annoying, and it seems to only happen with gluten free. watching things like that almost make me wish i had a different auto immune disease so people would just take me seriously.
Well, put Lindsey and as Claudia says when you’re not part of the status quo, the rest of the herd doesn’t trust you. A lot of people are fear-biters. Their own insecurities result in them lashing out. If there’s something we all can learn on this journey is compassion – for ourselves and others. What Gluten Dude, Irish Heart and others are doing to draw attention to the real issue means standing up and speaking out. They are the lightning rods and people will lash out. I have no doubt that positive change will be affected and not just for Celiacs but for everyone with “strange dietary needs” as Jayci so aptly put it.
well, this lightning rod thanks YOU for being so generous, insightful, compassionate and speaking the truth.
🙂
Gluten Dude the reason I read your blogs is because you lay it out there for us. I would love to eat “real” bread in a sandwich, eat pizza with all the trimmings, and have a real beer. Okay, I have Celiac disease and I stick to the diet because I enjoy feeling good. You listen to us rant about all the bullshit we get handed. I read other Celiac blogs, but you don’t present it as pretty fairies in the woods playing violins. When one is not part of the status quo, that makes us stick out, which is a signal for the others in the herd to look at us like we are not to be trusted. I don’t eat out very often because I always have a fear of getting sick. I stick to salads and bland food. NO one should ever get bullied. I love all the first person experiences you put out there for us. This young woman’s paper is well written and so true. She is not nerdy or geeky, but a very attractive young woman. AWESOME young person. Please send her our love.
Thanks Claudia very much…
Shared this post on my page ~ What an amazing young woman! I’m so glad her mother shared her essay with you.
Reading it, all I could think about it my own daughter. She was never diagnosed with Celiac because we transitioned her off it before she was tested. However, her intolerance is pretty severe. I could never bear to have my baby purposely eat it again just for the sake of a diagnosis. She get so ill from the tiniest bit now and it’s a good two weeks before she is herself again. I work hard to be so diligent! Not only that, she is Anaphylactic to peanuts.
It’s hard – Much like your referencing comments about the fad “part time” gluten free dieters, I hear that with people with allergies too. They think it’s a joke. That benadryl can fix everything. It’s LIFE OR DEATH for some people! It’s not a game.
The same goes for gluten. This is REAL. It’s NOT a JOKE!
THANK YOU for being a strong voice in the community!!
I’m preparing for a career as a tenure-track professor and I had a celiac attack that dropped me to my knees in excruciating pain in front of my colleagues during a national membership breakfast while on the job market (I have severe attacks [i.e. drop me to my knees in excruciating pain within 30 -45 minutes] sometimes when I consume gluten). I had talked to various members of the national board about food issues numerous times, but it took a spectacular and embarrassing display (and subsequent ambulance ride and ER visit that cost me an extra day’s hotel reservation and consequent plane rescheduling) to get people to see how important this is. And you are right: people believe this is a food choice until they see up close and personal what it can – and does – do.
One of the things that I have started doing, however, when I go to restaurants is automatically talking to the manager when I go in and make them aware of my needs. Wait staff where I frequent have learned that I am a generous tipper when I successfully finish a meal without getting sick or without questioning whether the food is safe – and I am pretty ****ing paranoid about it. But here’s what I find: when I have more personal connections to people and places, mistakes are really rare. I can’t tell you how many times I’ve heard waitstaff use the phrase “glutenbitch” (I wonder about the sexism here) – and I know because people wonder why I’m so different and ask. So I get the chance to educate more effectively – which in turn helps the restaurants provide better service.
My biggest pet peeve are those who know I am gluten-free and seek my advice on how to “cut back on gluten” to see if it is the cause of problems. Many times going gluten-free is on a doctor’s request, but he/she doesn’t go far enough in their explanation to stress that gluten-free means NO gluten including from cross-contamination. It’s all or nothing, people!
If you “cut back on it” and still have problems, you haven’t proven that gluten is not the cause of your issues.
If you “cut back on it” and suddenly feel great, then something other than gluten is your issue.
The more it is talked about in mainstream media, the less seems to be known about it.
…and I’m tired of hearing “gluten allergy”.
Sorry..just felt the need to vent after someone told me today that he had given up bread to see if gluten was behind his IBS symptoms.
I hate the “gluten allergy” thing too. I know a woman who believes that gluten intolerance and celiac are both allergies, like, because she can’t be bothered learning about what an allergy really is.
She eats gluten once or twice a week. She doesn’t eat it more often, because then she’d be sick and bloated all the time. But she’s not gluten intolerant. NOooo…
She thinks people who won’t eat it owe it to their companions to shut up and eat the gluten so as not to be socially disruptive.
Bleh.
Miss Dee…there is no venting allowed on my site. Oh wait a minute…sure there is 🙂
Some people who are sensitive don’t have to worry about cross contamination. And who is to say that large numbers of people would not feel better if they did not each so much wheat? Reading these comments I am beginning to feel LESS sympathy with the mockery celiacs put up with if they are wishing the same thing on others.
Isabel, it is crucial when someone is trying to determine if gluten is a medical issue and is undergoing an elimination diet that they are 100% gluten-free during the trial period or it hasn’t truly been eliminated. I realize that sensitivity varies, but if one is extremely sensitive and gets even a bit of cross-contamination, then the symptoms will not get better during the elimination phase and quite possibly lead them to assume gluten isn’t an issue for them.
I am an example of that. Long before I even knew what gluten was I was put on a elimination diet to see if hives were related to a food intolerance. (Hives are one of my “glutened” symptoms.) I continued to hive, but later found that even having a serving spoon switched on a buffet triggers my hives. It is not unreasonable to educate those who have tested negative for Celiac, but are still having medical issues, to know that one must be 100% gluten-free (including avoiding cross-contamination) during the trial phase.
Well, I got dramatically better without worrying to that level. How do you know the person you just shook hands with didn’t just eat a sandwich, etc. You could never eliminate gluten totally. Many people see a dramatic difference and can still eat oatmeal without symptoms for example. Honestly the only reason everyone cares so much about this is that wheat is so ubiquitous in our diets. And that is the problem! According to the WSJ incidence of celiac itself has grown four-fold as wheat has been bred to have more protein, so why the surprise that others may be affected at lower levels? One single plant, so what if some people decide to eat less of it and want to talk about it and compare their results with others? No one should be mocked for what they eat. No one. Why is that so hard?
I hope you didn’t assume that when advocating being 100% gluten-free during an elimination diet that I am saying that one must be environmentally 100% gluten-free. That will never happen. I can’t avoid people who have touched gluten, but I also will not be “glutened” by merely shaking their hands. It is entirely possible to be 100% gluten-free when it comes to ingesting it. It isn’t always easy, but it is possible.
Also, oats are a gluten-free grain. The issue with oats is cross-contamination during harvesting and/or storage because they are usually grown and stored with wheat. Unless they have been certified gluten-free it is like playing Russian Roulette…maybe they are contaminated and maybe they aren’t. I am one that doesn’t tolerate oats very well regardless, but I know many Celiacs that have no problem consuming it.
I still stick with my original consensus. To correctly use an elimination diet to test whether or not a food intolerance exists, one must totally remove the food (including cross-contamination) for a consecutive period of time and then reintroduce it. If this protocol is followed, there will be little doubt as to whether or not it is a culprit when the food is reintroduced. Isn’t that the objective of an elimination diet? I would hate to deprive myself for weeks of certain foods and then later find that the entire test was null and void because I was still ingesting some of it.
Lastly, I have never mocked anyone for their dietary choice and I’m not sure why you assume that I have. I am also one of the biggest advocates for those who are gluten-intolerant/sensitive, but who do not have Celiac. The symptoms that they present with are in most cases just as devastating and life-altering. We merely want a distinction made between those who choose not to consume gluten because they feel it is a healthier lifestyle and those of us who have no choice. You are lucky to not have to worry about cross-contamination. However, for me one crouton picked off a salad will cost me days off from work, debilitating pain and exhaustion, and take a minimum of three weeks to get over. When someone is choosing to use an elimination diet to see whether or not being gluten-free is a choice or necessity, I want them to test correctly.
I don’t even know what to say or where to begin, as I write with severely rashed out calloused hands from a unknown reaction to SOMETHING! Was told by my doc that my liver enzymes r through the roof again which means I’m STILL not absorbing enough nutrients, which equals rash. Chelsea Handler and any other person who comments on this DISEASE without having any personal experience with the DISEASE, NOT a GLUTEN ALLERGY or DIET FAD, should really be completely ashamed of themselves. Because most of the people commenting on a fact that they have no knowledge about and are way too arrogant to listen. We must keep getting berated, made fun of and even hated. I’m so very very tired of it. All I can say it makes me want to go at the uneducated even harder. I’m hoping for my reality based show to get the green light so I can get more of a platform to scream this from the mountain tops.
Thanks Gluten Dude for taking the hit this time. Ive taken some and am ready and willing to take more. I truly don’t know of another disease that has to keep proving their existence and severity. Sad.
Jennifer Esposito
Jennifer, maybe it’s time for you to have another endoscopy with biopsies to see how your villi are progressing. So sorry to hear your aren’t feeling well. I hope things get better for you very soon.
Jennifer, I hope you feel better soon.
I have to agree, completely, that Chelsea Handler should be ashamed of herself for commenting. The line about, “I’m allergic to gluten, but I still eat it sometimes,” is the kind of standard line that makes people think that celiac is not as serious as it is.
Also, there are instances in which Chelsea Handler is really funny, but telling people with celiac to, “Shut the eff up,” is just not funny, ironic, entertaining, or even moderately amusing. It’s just offensive.
Hi Jennifer,
Uuuggh. Ok, I’m not sure what to say about this crap right now. It wears me out too. I am concerned about the rash though. Thanks for mentioning this. My hands are a mess too. Now, I was able to get rid of the rash on my face & neck last year (the neck was pretty horrifying). However, my hands are still calloused & rashed-out! And NOTHING has worked. I’m thinking a bad batch of nut butter triggered it last June – but I’m not sure…
I’m seriously wondering if I can get rid of this… it’s truly baffling. I had full-body DH when I was first diagnosed years ago – and that eventually healed. But this, I just can’t figure out. Did your doctor recommend any immunotherapy, vitamins – or anything topical to take the edge off? Geezus, I’ve tried Vanicream, Aquaphor, Cerave, you name it (also, Biotin, extra Fish Oil, Chaga extract – etc, etc…) The meds the dermatologist & internist gave me just made it worse. Gaaah. If anyone can offer some tips here – please feel free to jump in.
Hang in there Jennifer – big heart hug to you & thanks for fighting the good fight with us.
I don’t know if you’re allergic to lanolin or goats milk products, but when I had all sorts of ugly skin breakouts from DH and from chemotherapy, goats milk-based lotions helped a lot. It’s even taken care of scaly brown age spots on my husband’s face. It’s worth a try, at the very least.
I second the goat’s milk soaps and lotions. For my face, skin, etc.–it really helped with red splotches and itching and peeling skin & scalp I had before DX and after.
Yo, my peeps!…..Do not despair.
Spreading celiac awareness–and not just this month, but with every breath you take–is not a struggle or a losing battle. Like anything
“unknown” or “foreign”, it is viewed with skepticism and mocked because perhaps, those most vocal recognize it in themselves and are too afraid, stubborn or weak to do a damn thing about it.
please consider this (yes, I feel a quote coming on 🙂 :
“If you’re afraid to defend your convictions because you might get your ass kicked for it, you’re not really fit to advocate for them.”
― James Carlos Blake
We’re celiac advocates.
We’re not afraid.
We’re gonna get our asses kicked from time to time
by nay-sayers, haters, bullies and skeptics and those who misconstrue what being totally gluten free for medical necessity really means. (and I abhor the term gluten allergy because it simply is incorrect)
But we’re warriors.
And we tell the truth.
Just keep telling the truth. 😉
Amen Irish…amen!
Thanks for that. After the roller coaster that has been this petition, I needed to hear that. Today’s editorial in the newspaper put me over the edge, and I finally had a good cry after feeling like a wrung-out rag. Being an advocate isn’t easy, and it doesn’t get you friends across the board. What it does get you is some awesome support from a great community, and at least the chance to change the minds and hearts of those who are open.
This is just a long road. It’s odd what a blessing and a curse it is to be gluten-free — you get the opportunity to heal yourself without pharmaceuticals or horribly invasive medical procedures. But you also get the ‘dabblers’ for whom avoiding gluten is a life choice to try on and wear whenever it works. It’s not a matter of snobbery, but it’s tough to convince people who don’t understand that avoiding gluten is like carrying an epy pen or an insulin pump; it’s not cutting back on salt and trying to avoid carbs to see how much weight you can lose. Want to drop gluten from your diet to feel better? Great. Just understand that there is a whole lot of people who don’t get to add it back in when the craving for a cupcake sets in.
Amen to all that, sister.
I have a comment for Jayci.
I know you said repeatedly in your essay that the bullying has made you stronger. No doubt you feel that way.
But keep in mind that is what bullies and their supporters say to themselves. They think they are providing some sort of public service by bullying “weaklings” who will then decide to stop being pathetic and in such need of bullying.
Everyone does not get stronger when bullied. Some are crushed by the experience.
One other point to add to Katherine’s. Jayci — you are a remarkable young woman to have come through this so strong and positive, and I applaud you. Just make sure to take a second to thank your mom, dad and the people around you who propped you up, prodded you on, and fought the good fight until you picked up the gauntlet so confidently and constructively. Sometimes they need a hug too.
I admit that there are very sad examples in the tv, and many people don’t know anything about gluten-free diet. However we have to admit that eating gluten-free is getting more and more fashionable thanks to hollywood and tv. Eg.: dod you see iron man 3? Tony Stark is eating “gluten-free waffels” for breakfast. Thanks to this many people will know about celiac.
” we have to admit that eating gluten-free is getting more and more fashionable thanks to hollywood and tv”
Oh no, Matthew. I am afraid I disagree with you completely on this statement.
No one learns about Celiac from fashionable Hollywood types who eat gluten free for a lark or who dabble in it and grow bored eventually.
This works against us.
Here’s the crazy thing… do we see anyone with a nut allergy going ahead and eating peanut butter? NO!!!! Why? Because it would kill them. So not only do people not understand what celiac is, but they don’t understand allergies either. Food allergies are nothing to mess with – precisely because they are so dangerous! And celiac is also dangerous – but because of its chronic progressive decay, not because people have to carry Epipens for intervention for immediate dramatic life-threatening responses. And thus the ongoing need to raise awareness…
Chelsea has an intolerance to gluten but does not have Celiac’s, meaning it is best for her to avoid gluten but if she has some once in a while, say while giving into a bread craving while dining out, it’s not going to seriously harm her in any way. Also, I don’t doubt this girl’s struggle with bullying and being different, and growing up in a small town in the midwest certainly didn’t help her situation, but I don’t think that a food allergy qualifies as a disability. You are not blind, you have working legs, you don’t have a mental disorder… you get the point.
I beg to differ. Anything that involves dramatically having to alter what one does to live or requires special compensation in order to live as everyone else lives is a disability. If an airline has to take special precautions for everyone on board a plane based on one person’s peanut allergy, that’s a disability.
In the case of celiac sprue like mine, if I travel for business my food has to be accommodated or else I will end up in the hospital – because people have to eat. That is a disability. And if I am being hosted by another institution (which as an academic happens frequently) it is their responsibility to assure I am accommodated. That is a disability. *No one* would question the need for accommodation for any other reason. And living gluten free is essential for being able to do my job duties as I have neurological side effects. That meets the threshold for disability.
Well said Claudette!! Right there with you.
Thankfully, the US government disagrees with you. Celiac Disease is covered under the American’s with Disabilities Act (ADA) which guarantees that those with CD be accomodated. It is a disability but can be managed with special care.
Emily
The lovely girl who wrote the essay named Jayci —does not have a “food allergy.”
She has Celiac Disease which caused migraines so bad she went blind in her eyes (I am guessing it was temporary, but nonetheless, it is very serious)
Did you read her essay all the way through?. And if you had seen me before my diagnosis, you can bet I was “disabled”.
This is the problem with people who think they know what celiac disease is all about. Trust me, it can be very disabling if you cannot walk, think, speak coherently or lift your arms. Neurological damage, vitamin deficiencies and malnutrition…all very disabling.
And it actually does qualify under the American Civil Disabilities act. That’s how students qualify for proper meals in school cafeterias..
http://www.bostonglobe.com/metro/2013/01/09/justice-department-agreement-ensures-lesley-university-meal-plan-accommodates-those-with-celiac-disease-food-allergies/JgVUf1Dx6FpTYYCMr8nKPL/story.html
I hope this helps you understand celiac a little better.
Dude… I love you! And I thank you for your hard work and tireless efforts to make the world understand celiac & those with a medical need to be gluten free. (which is obviously what you advocate for – a medical need).
But, I want to cry right now, after being glutened at dinner and having two bullying experiences with my best friend last week, questioning why I am so dramatic because I can’t eat “a few things.”
Sometimes it gets too hard to continue to stand up to such constant ignorance. When will it end and we will get the respect we deserve?! I hope people who read these comments are learning from it and go out there and teach people the truth about our medical needs to be gluten free, so that next time I go to a restaurant, they will take my celiac seriously and the bullying will stop! – This coming from a college student who activates on a regular basis. Sometimes it just gets to be too much.
I really liked Chelsea Handler. She’s a really good comedian. But when she said she’s allergic to gluten and still eats it, I stopped watching. Also why call it a celiac episosde when it was never mentioned?!
Sometimes its okay to make light of a tough situation but this was just ridiculous. And blatantly rude.
I guess because such a small percentage of people have celiac disease, it doesn’t get the correct attention that it should. We just get thrown into the group of gluten-free fad dieters. If they did an insert on Jessie about what celiac disease is and how serious it is – a lot of people would have been taken aback and changed their minds.
All you can do is keeo fighting the good fight and don’t let it get you down. Well done GD for all the hard work. I’m sure it must be hard dealing with all the hate BUT your work is MUCH appreciated :).
I confess that I found this video so crushingly depressing to watch, I nearly cried. And I’m a 40-something year old woman. I have a severe gluten sensitivity and several food allergies that, while they won’t kill me (yet), make my throat swell and leave me covered in rashes. When I ingest even a crumb of gluten or any of the several things I’m allergic to, I’m very sick for days… or weeks. I can no longer eat out. I’m frequently socially excluded. The logistics of everyday life are often so tiring and difficult I feel like I’m going to lose my mind.
I also have a demyelinating neurological condition that is debilitating and painful, but largely invisible to others, so I often get hostility from strangers when, for example, I use my disabled parking permit. People are vicious towards those who have invisible illnesses and debilities of any kind.
That people howl with laughter at skits portraying pancakes being thrown at someone whining “Gluten! Gluten!” is so deeply disturbing, I find it hard to articulate the depth of it. There’s no humor in this. It’s hatred disguised as a “joke.” Whether it’s being glared at in a parking lot as I struggle to get my groceries in the car, or seeing people shriek with delight at the sight of someone perceived to be like me having pancakes thrown at them… Being hated for having a disease can be as difficult to deal with as the disease itself, as Jayci so eloquently conveyed in her essay.
Thank you for giving us a voice against this kind of noxious intolerance.
There’s an old saying, ‘any press is good press’… From one perspective, it is ‘good’ that the harm caused by diet is getting attention. We are only just beginning to explore how our diet can change us, and it needs ‘attention’. IMO, it’s also ‘good’ that there are the wannabe’s jumping on the band wagon. By having some ‘cool’ people taking up arms, so to speak, in this battle to improve the care we take of ourselves, the better off we all are. Sure, it’s not the same and the claiming gluten free and then eating it creates some confusion, but it also brings awareness to 1. that it is a valid goal and 2. it’s hard. The risk of contamination is extremely high. It’s like seeing a marathon runner and then going out the next day for a jog… maybe, this turns into walking three times a week and isn’t that good? If a gluten free, or any health activity, is mimicked, everyone benefits. Stand strong Gluten Freeers! You’re blazing the trails of wellness for yourselves and your fellow citizens. The future will be better for your efforts. Even if you struggle today, it is worth the fight. Do not go quietly into the night, do not go down without a fight. From all who will benefit from your challenge, Salute!
I long for the day I can go out to eat without fear of accidentally consuming gluten and dairy. I don’t have Celiac, but 2 other autoimmune diseases that require me to be GF/CF. When I’m not there’s hell to pay.
Here’s the thing, though, about the “wannabes”. I was one once. My stupid doctors at the time told me that it didn’t matter what I ate so to not worry about changing my diet. But I had heard about gluten (since it’s a “fad”, thank goodness) and tried not eating it. I’d feel better, then eat it, get symptoms, go off it, feel better, eat it, feel bad, and on and on. For the longest time I was in “autoimmune denial” about my diet and the dramatic effect it has on my health. I finally surrendered to the fact that I simply cannot eat gluten and dairy if I want any quality of life. So I don’t. And it is very, very hard and a total drag.
Based on my experience, then, I would recommend not mocking the wannabes but instead encouraging them to keep at going gluten free to see what effect it has on how they feel. They may learn like I did that it’s a key part of their health picture – even if they don’t have Celiac. And if they say they are “cutting back” or going “low gluten”, again, instead of mocking them – educate and encourage them.
I would also encourage foregoing mocking anyone. You never know what someone is going through and how they are attempting to handle it. Even Chelsea Handler.
Thank you.
I don’t have any food allergies. I think a big part of the problem is that suddenly food allergies like this suddenly are the new “diet fad” and, as such, it makes real diseases like celiac’s not seem not a big deal. Thank you for sharing!!
Nobody should be bullied like this for a disease.
I’ll admit that I am one who rolled my eyes when hearing “gluten free.” It has definitely become a fad. I knew that celiac disease was a legitimate illness, and I knew that people with the disease truly had to avoid gluten, but my first instinct upon hearing the words “gluten free” was to assume that whoever was mentioning it was just jumping on the bandwagon. I assumed that the majority of people eating a “gluten free” diet were simply eating a low-gluten diet and were doing so unnecessarily.
Now, I’m awaiting the results of my celiac screening. I still think that there are a lot of people who are avoiding gluten as a weight-loss fad, but I am learning never to judge people–how do I know whether they have a real condition or if they are just trying to be “trendy?”
If my test comes back positive, it’s gluten karma.
The problem with all you Gluten heads is that for most people Gluten is not bad for you and studies of people who have “Gluten Sensitivity” show that it is a different protein that is actually causing your problem. Celiac is a real disease and I have no problem with that. The issue is that it is RARE! Most people do not have Celiac and most that think they do or that are “Gluten Sensitive” do not have any issue with Gluten and thus there is NO benefit to a Gluten free diet and in fact, cutting it out when you do not have to may actually not be good for you.
For the few people that truly have Celiac, I feel for you, it has to suck, but those of you who are just doing Gluten Free because you think it is good for you, well, you are dumb#$R#$, Study after study show that going Gluten Free when you do not have to does not make you more healthy.
Human beings are TERRIBLE at interpreting risk. We are afraid of things we should not be and not afraid of things that we should be afraid of. Americans are terrible at math and statistics and thus over react to studies.
If you do not have Celiac, go ahead and eat Gluten, it is not bad for you and quit causing stupid fads not rooted in science.
I totally agree that cutting out gluten just because it is perceived as somehow “healthier” is misguided. We had all read the study that perhaps FODMAPS in wheat are to blame rather than gluten. (The results of this study are debatable given the small amount of subjects used for the study and other factors, but it certainly shows the need for further exploration). If the study proves to be true, then those who have given up gluten to regain their health may be delighted to learn what is behind it, but their diet essentially remains the same. In the end it doesn’t matter if you are “gluten sensitive” or “FODMAP sensitive”…you still can’t eat wheat, barley, or rye without a decline in health and physical suffering. I’m not sure why this angers you. If it is because of the ones who just decide to be gluten-free as a fad diet and no health reason, then please know it angers us, too. Don’t dismiss those who follow this diet (without Celiac) because they suffer when they eat these foods. You can’t ditch “the other protein” without also ditching gluten at the same time.
PS: Celiac isn’t that rare anymore. Something has been turning the gene on in the past couple of decades and that, my friend, has been proven in a vast study.
Thanks Miss D. Couldn’t have said it better myself.
What I think is funny is how this ‘celiac disease’ sprung up all of a sudden around this ‘gluten free’ fad when people on earth have survived 5000 years or more without gluten free. What a bunch of BS.