Ok…I wasn’t going to touch this one. No seriously I wasn’t.
It seems I’ve gotten a bit of a reputation as a “ranter” and people contacted me yesterday asking me for another Kardashian-type rant. But I was going to take a pass on this one.
Why? A few reasons.
Mainly, because she did not say she is going gluten-free to lose weight. She claimed she has a gluten allergy (even though technically there is no such thing.). Does she really have a gluten issue? Time will tell…but she better! And if she does turn out to have celiac disease, she could be a great advocate for us.
Also because she only vocalized about it because the media kept saying she must be anorexic with all the weight she’s been losing. (Isn’t our media just wonderful??)
There’s also the fact that she’s only 19 years old.
And lastly, come on…it’s Miley Cyrus!!
I do wonder if Hannah Montana is also gluten-free. And for those of you saying it’s the same person, “I can’t hear you, I can’t hear you.” (as I cover my ears)
But as the day wore on and the night passed, a few things happened that made me realize I must speak up (including having dreams about it all…night…long). But my rant is not against Miley (well…not totally anyway); it’s against everyone elses reaction to her going gluten-free.
Take a look at the picture above. It’s from the Zite app on my iPad. Zite is a news aggregator that grabs stories from around the web for topics you choose. I follow “gluten”. And this is just page one. It went on and on and on.
Look…I’ll never understand our country’s obsession with celebrities. I think it’s misplaced energy that should be focused on other people who are more of a positive influence. But it is what it is.
What gets me is the tabloid type headlines that just trivializes what gluten-free truly means to us celiacs. And many of the articles have so many false statements that I lost count. One headline actually said “Miley Cyrus has trendy gluten allergy.”
That’s right…effing TRENDY. Aren’t us celiacs really, really hip?
And of course there was tweet after tweet yesterday that Miley Cyrus is gluten free and and it’s her secret to looking “hot”.
And all of you cynics out there who are saying “Lighten up Gluten Dude. What’s the big deal?” Well, here is part of a comment I got last night from a fellow celiac on my Kardashian blog post.
I was at my college campus “subway” today I saw two girls laughing in front of me and then they asked what they had that was gluten free, and this obviously caught my attention. They settled on a gluten free bun and when the worker went to change his gloves and get a new plate (as he should) they told him not to bother. This made me absolutely infuriated. This is not a fad diet and the fact you are telling a worker who is taking his job seriously not to change his gloves you are ruining it for the people who that would actually make sick! I seriously thought how many times will he be told not to change hs gloves and then when I come up he wont and I will get sick! Those girls made me so mad and so does this “trend diet”. I have a pretty gluten free friendly campus and you dumb girls are ruining it because you think you’re going to lose weight. Oh and to top it all off at the end they ordered french fires….which are fried in wheat flour (and aren’t going to help on your dumb diet.) Sorry about my rant, but I thought it fit with this story. I just wanted to share that this is becoming a reality, so I appreciate the protest on here.
And that’s why it matters folks. That’s why I preach. And that’s why all celiacs should preach.
Gluten-free is not a fad. It’s not a trend. It’s not a diet. It’s not a joke.
It is the way we survive.
Your thoughts?
Thanks for this. As a dietitian with a supermarket I’ve worked w/ a number of Gluten Free Support groups over the past 7 years. I’ve seen the world of gluten free products change remarkably and awareness and diagnosis of celiac disease improve. I’m of the opinion that the more people who “go gluten free” the better it is for those for whom it is a medical necessity since it means that manufacturers are more willing to inviest in new and better GF products . The downside is, as you pointed out, the perception by many that all who are on gluten-free diets are doing so because it is a fad. All they’d have to do is speak to someone who has celiac disease or gluten intolerance to understand that this is not the case. As far as restaurants…you’ve highlighted another big problem. There’s a difference between “gluten free” and “safe for celiacs”.
The question is do you trust the manufacturers to really produce gluten free foods? They see dollar signs. I would think most of them are not doing it to help people. Yes, I’m a cynic.
From where I stand a lot of it is a money grab…What I like the most are the success stories arising because a person with Celiac or other gluten issues has decided to create something they miss. They make money but it is not their primary motivation for being in the space.
Totally agree Rebecca!
The sad part about gluten free vs. celiacs is that doctors(that are not dieticians or gastroenterologists) start out by saying try the gluten free diet. If you feel better then, you have an intolerance. Where true celiacs have to have the biopsy. My diagnosis did not show up on a blood test. I have a lot of people come to tell me they cannot afford to get the biopsy so they self-diagnose. And after numerous emergency room visits, and a diagnosis of celiacs, a corn allergy, PCOS, Psoriasis, Rosacea, lack of energy, and hypoglycemia it is hurtful when people “self-diagnose their selves with celiac disease.” Also, because of the gluten free fad others think they know our diet better than us, but as with anything you will always have your know it alls. Here is how to perceive Miley Cyrus- if she does not have celiac, she will sure lose a lot of respect. If she does have it she will be a great support. If she isn’t feeling well, I hope she gets better, because I wouldn’t wish my celiac on anyone. Although, it is not cancer. I also am getting upset about the myth that celiacs is cured by a gluten free diet. It is not cured, it helps you feel better most of the time. But any auto-immune disease is never cured. Celiacs is a fight for balancing a life of malnourishment. A life of vitamin tests, endoscopies, colonoscopies, discomfort, vision issues and new diagnoses every other year is not a fad. But, what comforts me is that I am a stronger person for their fad and insensitivity. And at least we have the technology to get diagnosed and the amazing amounts of foods to eat. AND STRESSED SPELLED BACKWARDS IS DESSERT,GLUTEN FREE DESSERT OF COURSE.
Right. On.
Last year after going to two different doctors both telling me to go gluten free I finally accepted my fate and did it. I’m stubborn when it comes to my health. I don’t know why but it’s something I’m working on. For me, going gluten free was easy for two days and the reality set in and it was so difficult for me to accept this and truly embrace it. So after I did accept it and researched and started following the diet I get family and friends doing the following:
1) judging me on my new diet
2) thinking that I’m on this new gluten free thing to lose weight
3) asking me if gluten free food has less calories then gluten food
I couldn’t handle it and to a certain extent I still can’t. I realize that they are just not educated about it and it is up to me and everyone who is affected by gluten to educate others.
This whole Miley Cyrus thing is good and bad. The media doesn’t do it’s research and/or doesn’t even address what is a gluten free diet and why it’s needed. It’s all rather frustrating but it’s up to us to educate and continue to spread the word!
Thanks gluten dude!!!
Those people’s responses are the direct result of the “trendy” diet. Sigh.
Yup. One thing that is really getting to me is some folks close to me—its like no matter how much I explain or show them the effects of gluten on me, they don’t get it, think I’m making it up. So irritating….
I feel like kicking them in the nads. Lol
MY Gi’s NP refused to test me. I have another auto disorder, plus blood relatives with celiac, so my risk was up to about 25% of having celiac. three years later she wanted to test me. The year she refused to test me is the year I went GF. the NP still though she could test me for celiac even though I was no longer eating gluten. SHe refused my offer for her to pay for me to be off work for three weeks so I could eat gluten and then have it get out of my body before going back to work. For some reason, she thought I was being sassy ;-P
MY Gi’s NP refused to test me. I have another auto disorder, plus blood relatives with celiac, so my risk was up to about 25% of having celiac. three years later she wanted to test me. The year she refused to test me is the year I went GF. the NP still though she could test me for celiac even though I was no longer eating gluten. SHe refused my offer for her to pay for me to be off work for three weeks so I could eat gluten and then have it get out of my body before going back to work. For some reason, she thought I was being sassy ;-P
This angers me SO much. My diet is NOT trendy or fun or because I think it helps me lose weight. Eating out sucks now. Cooking is involved & requires much planning, as does baking. People making this non choice for me appear to be pisses me off.
Spot on Kim!
i agree with your commenter, leah. as much publicity to bring better products and add to awareness of gluten issues, i hope the better. however, the public needs to be made aware that switching to gluten-free pretzels or hamburger buns sure isn’t going to make you healthier or end in weight loss.
as a dietitian, i do believe gluten is an inflammatory protein and most people would benefit from avoiding or eliminating it from their diets. of course, those with celiac disease and gluten sensitivities (like me) must avoid it to become healthy again. the difference is necessity, but i still believe everyone would benefit. especially if that gluten-free diet is full of whole, natural foods.
so though miley is annoying, seemingly ignorant of the facts, and likely using this as a pr move, at least it brings the conversation up. seems like that’s always a good thing.
i also agree with you, gluten dude, about the unnecessary obsession with celebrities… sheesh, we need better heroes. thanks for being a voice of education and doing your part.
(also, gluten allergy is a real thing. it’s a pretty uncommon response to gluten that results in hives, swelling and sometimes anaphylactic shock, much like you’d expect from a peanut allergy. i strongly doubt, however, that this is miley [or hannah’s] problem.)
I would say it’s a good thing Gretchen if the media portrayed it as such. But as you can see by the headlines, the message gets totally lost, so it has an adverse affect.
As I’ve said over and over again, “celiac” is what I hope to promote, not “gluten free”.
Appreciate your feedback!
I saw a few weeks ago she was asking for gluten free snacks on twitter . Sounds she is fad GF dieter , especially as she said her physical health and mental health was better after a week ….
Seems ridiculous how the GF diet is promoted as a weight lose yet most celiac’s put weight on going GF .
I have to admit I find it funny and frustrating . Like the celebs who say go GF for weight loss . Than you get the experts saying about deficiencies and getting facts wrong . Than you get people saying about how gluten is bad for everyone .
But us celiac’s very rarely get told and tested about vitamin deficiencies that can lead to many years of chronic health issues .
In my experience celiac and the GF diet has wrecked my health , I felt 100 x better while I was eating gluten at the time I was diagnosed than I do 9 years on . The other day I was reading an article saying most celiac’s after 10 years on the diet have worse health compared to non celiac’s . Just fed up of all the bs about how GF diet gives you amazing health .
As am I…as am I. Thank you for your passion!
Not that I am happy that Miley is sick–but Dude is right; she could be a great advocate for celiacs if she manages her disease correctly. She could increase awareness among the general population. She could bring back some credibility to the gluten free diet.
Hannah Montana to the rescue!!
Gluten Free Dude – I’m sure that most food manufacturers aren’t making/selling gluten free food to help celiacs but to make money but that’s ok – right as long as they are truly gluten free, though it wuold be more helpful if:
1. USDA would FINALLY establish clear guidelines as to what “gluten free” means
2. If manufacturers would use better whole grains & ingredients and enrich products so GF bread, cereal, pasta had fiber and nutrients and wasn’t just made of rice flour and tapioca starch.
3. If doctors actually TESTED people and tested accurately for celiac and gluten intolerance
4. Once people are diagnosed with celiac disease or gluten intolerance or non-celiac gluten sensitivity if they were referred to a dietitian who understood the gluten free diet and not just told “buy gluten free products.
5. If dietitians were trained on the gluten free diet.
6. If more emphasis was put on making sure those on a gluten free diet were eating a nutritionally adequate and balanced diet and supplemented if they are deficient in nutrients.
Great ideas. These things would only happen in an efficient health care system…the opposite of what we have here.
Favorite quote from this article: “Gluten-free is not a fad. It’s not a trend. It’s not a diet. It’s not a joke. It is the way we survive.” Love it!
I can’t say I’m too sure about Jennifer Esposito’s diagnosis either. this is the guy that diagnosed her. She never bothered with a biopsy. http://www.fratellonemedical.com/
To me, this gluten trend is an insult. It’s like pretending to have cancer or some other equally devestating disease. It’s downright cruel to ‘play’ celiac! Mostly these celebrities are eating this way to lose weight. It’s fine to diet….it’s not fine to say you have something wrong with you if you don’t!
Most of these celebrities don’t seem very bright. I don’t think they have any idea what happens to a celiac when we consume gluten. They just know it sounds good. After all, they do love the drama…its how they earn their living.
Face it fellow celiacs…..our disease hase become a laughingstock. Maybe we’ve had just a little too much awareness…..
That’s because the focus has shifted to gluten and away from celiac.
Let’s just hope for her to be an advocate and like you said she came out so to speak due to media coverage. I hate the spin taken on and people reporting that haven’t a clue what we go through.
The Subway story above is definitely an issue for us really trying to be gluten free. And so a part of me loves when I go into Five Guys and they holler out food allergy … Even though I am inwardly humiliated., I do stand up proud to be gluten free no matter what any one thinks about my diet and I am glad that some restaurants get that some are trending and some really do have an illness to.
I wouldn’t trust a Subway if it was in my own house, but that’s just me.
Me neither Gluten Dude! I am very picky as to where I eat …. And have cut out the majority of fast food places. I am not a super chef, I stress about pre-planning and I often don’t do now, but I would rather run in a grocery store and grab an Lara bar and a banana then take my chances with fast food eateries… And many restaurants for that matter.
I have my few regular places I eat out where I trust them and they know me as the allergic girl too. But I can tell you from working in resturaunts, you want them to know you as the allergy person rather than making fun of you and not making your food properly. I agree you cannot trust people making your food for you. Most people do not know all the things that have gluten but when you get into resturaunts you have people that do not speak English, which in turn makes them not understand to change gloves. People that are not allergic and work in resturaunts think of it as an inconvience because they are just following a fad. As if our gluten free lifestyle is a fad or a choice like vegetarians or vegians. I work in the school system as well and thank the lord that kids cannot bring food to school. If one more kid offers me a gluten filled cupcake I would have banned it from my classroom. We are heros for what we experience! LOL!
I agree. I think that:
a) we as a society spend too much time thinking about Hollywood stars, we pay their salaries at movies, then we pay their salaries with tabloid stories, then we pay their salaries with buying products they sell. Ugh.
b) celiac is so misunderstood because of people like the chicks in that comment you posted. However, I also realize I “take my chances” when I dine out and that I am putting my faith in the restaurant for being able to cook GF. It’s one of the reasons I tend to not want ‘gluten substitutes” when I dine out. Give me a steak, give a sweet potato, nothing on it and I’ll be QUITE happy. I’ll eat my bread and pasta at home where I can make sure they’re completely GF.
c) As far as getting upset with “no such thing as gluten allergy” the masses don’t understand “intolerance” as meaning “I can NEVER eat this” if it’s “just an intolerance”. I can understand why some people say it’s an allergy and others say it’s not.
I mean, technically people should never say, “there’s” when they mean “there are” and people still say, “Me and dad” instead of “dad and me” but people nonetheless still butcher the English and American English language every day, even if it’s not technically correct. 🙂
a) Totally agree.
b) Same here. I order my food naked (woo-hoo!)
c) I actually use the words “severe allergy” when I’m out. It’s just more understood.
I have some people ask what happens if I eat gluten. I tell them I’m lethargic and then will spend the next week in the bathroom. For some reason, they think that’s too much information 😉
“You want the truth? You can’t handle the truth.”
LOVE it! and so true.
[I loved that movie]
I tell them the same thing, and yes, then they say too much information. But it gets their attention.
It’s good to know I’ve been ‘ trendy’ since 1996.
(I thought I had Celiac Disease)
When I was diagnosed there wasn’t a lot of GF food to be found.
In my case we drove 120 miles to Atlanta for a few GF foods.
I have a different take on Movie Stars going on GF diets.
It suits me just fine.
Quite a few food manufacturers have added a GF line to their products, to benefit the ‘Stars’…
It’s a cinch they didn’t seem to care about folks with a disease…
It still gripes my butt that I pay twice the price for the privileged of eating GF foods.
Hey Ole Man. It’s a valid point and one I mention from time to time as well. But I would trade the “food choice” for the “seriousness of the disease” any day.
AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHH!!!!! Sorry, that’s the best way I could describe my reaction to topic. Thanks for the post.
🙂
I wouldn’t trust Subway further than I could spit. Thanks for the post. I’m disgusted about this being a “trendy” diet and all the misinformation and ignorance out there.
What does only have to be 19 have to do with this? I am 18 and i have celiacs i was diagnosed at 20 months old.
My point is that I said some real stupid stuff at 19 years old too.
Favorite quote: But my rant is not against Miley (well…not totally anyway); it’s against everyone elses reaction to her going gluten-free.
God YES.
I don’t care whether she really has issues with gluten or not, although I’d prefer to think she’s telling the truth on the matter as she sees it. The public at large may be looking at the gluten free diet as a huge weight loss thing, too – I couldn’t care less.
But the medical community’s response made me want to spit nails.
All I’ve heard is how no one should ever try a gluten free diet without their doctor’s supervision, how the GF diet is low in nutrients, how the GF diet can be dangerous – basically, a long, long list of how people shouldn’t take their health into their own hands. Even though, you know, we’re ADULTS with BRAINS who can notice when avoiding something makes a difference in our health. Or when avoiding something doesn’t do diddly so we start eating gluten again and keep searching.
And they neglect to address the most important issue out there, IMO: the only reason this is even coming up is because we have a HUGE number of people who are unhealthy, overweight, and feeling terrible. If there are actually so many people who feel so bad that they would start going gluten free on the say-so of one celebrity, isn’t that a clue that something is seriously wrong with our national health? And the diagnosis abilities of our medical system?
The medical folks who were interviewed could have given advice for other, safer ways to lose weight, or discussed how to explore whether one has a gluten issues, or better yet, educated their fellow doctors on how to actually test for gluten intolerance and celiac disease.
But instead, it seems to have boiled down to taking whatever small power people are trying to assume over their own health and putting it back into the hands of the doctors who have, and still are, failing them. If that actually worked, these folks wouldn’t still be looking for answers, and all this ‘advice’ against gluten wouldn’t strike me as more offended by their patients’ presumption than concerned about their patients.
And I’ll get down off the soapbox as the air is getting a little thin up here. 😉
Valid point about taking our health into our own hands…I’m a big proponent of that. But I’m a big opponent of pseudo-celebrities blabbing about the gluten free diet as a weight loss tool.
You may rant any time of my blog. My soapbox is your soapbox.
I agree with you; however, too many doctors have no knowledge of celiac.
My doctor (My GI’s NP) refused to test me for it, then three years later she wanted to test me for celiac. She thought she could do the test even though I’d been GF for three years at that time.
My risk fo having Celiac was already up to 25%, as I have another auto disorder, plus one sibling and at least one of my parents’ sibling with celiac.
I went GF, I can tell when I eat gluten, or MSG or soy. Why would I go back to eating just to let my doctor (Nurse practitioner) do a test I requested before and which she refused to do.
WAY too many doctors are out in left field when it comes to celiac (and a lot of other stuff).
Whether somebody gets tested or not is a very personal choice. Me? I’d want to know but I can see both points.
For all those celebrities who go gluten free to lose weight, they should take a look at me. I am a fat old grandma, and have been eating gluten free since 2006. I do feel better as the most troublesome symptoms are gone, but if anything, I have gained weight.
My opinion is that whenever people like my family hear of a celebrity going gluten free, for whatever reason, and then that celebrity doesn’t stick to the diet, it makes it really hard for me to convince my family and some friends that, NO, I can’t eat that just because Miley or Kim or whoever was able to eat it. My mother is 85 and she still, after 6 years, says things like “It won’t kill you to eat _____.” And I have learned to say to her, “No, it won’t kill me but I would wish I was dead for a week or so if I did,”
Every time I see my mom, she still asks me if I can have bread.
In response to the girls you describe who wanted gluten free buns but told the subway employee he didn’t need to change his gloves. You REALLY can’t assume that they were just trying a fad diet–people’s levels of gluten sensitivity vary, and some people have sensitivities without actually being celiacs. Although I am lucky to not have to worry about small levels of cross-contamination from unchanged gloves, eating an entire wheat bun would make me quite sick. Just because not everyone has to worry about cross-contamination does not mean I am making the world less safe for you. Employees should be trained in proper food handling procedures, what a couple of customers tell them should not make them disregard their actual training.
Furthermore, I think that pretty much EVERYONE would be healthier without eating gluten, so I’m happy when Miley Cyrus and anyone else makes healthful decisions because I wouldn’t want anyone to eat unhealthy food. If the media starts treating gluten-free like a silly fad diet, it’s the media’s fault, not Miley’s or anyone else’s.
Stumbled over this article and definetely want to second what Sarah said – I’m currently on a gluten free diet due to gluten sensitivity which means the same thing for me as for her.
Also, I have to say I also lost wheight by going on a gluten/casein/egg free diet, just because I have to be much more aware of what I am eating and cannot indulge in treats unless I make them myself or buy them at a specialty store I don’t get to that often. So I guess it really depends on what kinds of products are available to people on a special diet and how many ingredients they have to avoid, in addition to everyone’s body being different.
I’m really pissed at the media for slamming a young woman for taking care of her health. Instead of providing valuable information, which is their job, they ridicule her medical condition and critize her body. Yes, Miley could be more exact in what she means, but that doesn’t mean news outlets have to follow suit. So backing up SC here.
I do not have celiac disease and regularly consume gluten, however, I have a 7 year old son who was diagnosed with celiac at 18 months old by doing first a blood test followed by an EGD (esophagealgastroduodenoscopy) with a biopsy of the lining of his small intestine. I have raised my son gluten free so have a very good understanding of the diet and I am also a nurse. Sadly, I have taught myself EVERYTHING I know about a GF diet. There was absolutley NO teaching on celiac or gluten in nursing school. My son saw a gastroenterologist at a childrens hospital who then referred me to a dietician in their office who also had NO knowledge of this diet or what work goes into raising a gluten free child. It’s sad to me that people view this as a fad or a joke when clearly my sons health and well being depend on this “fad diet”. My inner mama bear comes out when I order at a restauraunt and the waiter says, “I know you said no bun, but can’t you just take it off?” Ummmm…no dillhole, I can’t just take it off! I try so hard to make my son feel like this isn’t an inconvenience to people, but there always seems to be a dillhole in the crowd that makes him feel like his health is an inconvenience. I commend you for speaking out against people who make this serious diet and lifestyle a fad or a joke. Shame on them for not researching and educating themselves on their choice of weight loss. This is not a choice that celiac disease sufferers have the abiltiy to make, they HAVE to follow this or risk serious complications. I have the blessing of a beautiful 7 year old boy who has taught me more than anyone else ever could, but sounds like I’m going to have to pull out the “angry mama bear” for all celiac sufferers now. Thanks for all you do to raise awareness, my son, Brody, thanks you too 🙂
Love your passion Sara and love your attitude. Brody is a lucky boy to have you in his corner.
And dillhole is now my favorite word 🙂
I wasn’t going to respond to this, however, the “technically there is no such thing” as a gluten allergy got me. I was diagnosed in June of 2012 with the DQ2 gene by my Gastroenterologist. Which is labeled as the “Gluten Allergy.” I feel like I’ve chewed up and swallowed glass if I eat anything with Gluten. I bloat up like a blow fish. I have to fight every day with people that just because I don’t have Celiac, doesn’t make it any less painful, or real to me.
Hi Faren…thanks for the comment. If you read my blog, you will see that I am fully behind anybody who has health issues with gluten, celiac or not. My point was that there is celiac and gluten intolerance, but not a gluten allergy. I was being a bit sarcastic in my tone, which can be misread by somebody new hear.
Wishing you health…
GD
Faren, what do you mean by there is technically no such thing as a gluten allergy?
Nevermind my last blog! See its that Celiac brain again. LOL!
I loved this post. Thank you. I do not have any issues with gluten but I do have life threatening allergies to nuts. My daughter has life threatening allergies to dairy not lactose intolerance an allergy. So many times I have asked does this food contains nuts or dairy etc only to get the response ” its gluten free”. My daughter was once given a gluten free bun in a restaurant that had dairy in it because gluten is sooooooo much worse than dairy apparently. I usually respond that gluten is very important to avoid if you have celiac but most people don’t. I really hate trend diets and the ignorance people have about food. If you can choose to avoid something you don’t have a health problem. Those of us with allergies or celiac have no choice and need people to take us seriously to stay safe. Trend diets interfere with that.
OH MY! I completely agree with this. You made some excellent points that I try to make all the time. People never take me seriously when I tell them I eat gluten free. Even though I have Celiac, and I have had it since I was born (yeah it was a painful childhood when they didn’t know I had it), a lot of the time when I tell people about my gluten free diet they think I am faking having Celiac just to loose weight, probably just because I am a young female. This is all because people keep perpetrating the gluten free fad, and it actually harms more people that you’d think. I wrote an in depth article about the larger issue of this whole food fashion thing and my personal experience with the gluten free diet.
http://thebhallatimes.tumblr.com/post/84722749588/why-the-gluten-free-fad-is-bad-the-big-picture