I’ve ranted. I’ve raved. I’ve spewed.
I’ve joked.
I’ve pleaded. I’ve begged.
My bag of tricks is almost empty and instead of things getting better, they have actually gotten worse.
Celiac disease is a f*cking joke.
Not to me and you of course.
But we’re sane. We’re rational. We live with this crappy disease and we will continue to live with it every single day until our time is up. And I can deal with it. I hate it, but it is what it is and things could always be worse.
But yesterday a number of things happened that has just thrown me over the edge. We are not making progress folks. How is this happening?
Story #1: An investor approached Jennifer Esposito recently to help get her bakery products to the masses. Great, right? But he tells her that if she attaches celiac disease to her product, it will tarnish the brand. The focus needs to be on beauty and health conscious people and if she wants to tie herself with celiac disease, she won’t succeed and will be poor.
Unreal. Jennifer is saddened to the core and told me she would shut the brand down and burn all her recipes before selling herself out. She is working so hard for people who NEED this food.
Does anybody still want to question her devotion to the cause and whether she is a good advocate for her fellow celiacs (as some people have)?
Story #2: My good friend InspiredRD continues to struggle with her celiac disease. She posted the following on Twitter yesterday:
Me: “I need to look up the prescription to make sure it’s #glutenfree.”
Doc: “I’m sure it’s probably fine.”
Me: “No I need to look it up.”
Doc: “Oh celiac disease. You can’t eat what again?”
This is a doctor. A doctor in the year 2013 who treats celiac disease as callously as Gwyneth Paltrow and Miley Cyrus.
Story #3: I get samples sent to me frequently by companies looking to promote their gluten free products. A few weeks ago, I was sent some tea and coffee. Since I ran out of my regular coffee, I decided to make a cup of their coffee. I assumed it was just coffee with no added ingredients. But when I checked the ingredients, there is was: Organic Barley.
Now the company’s website claims that it has been tested and falls below the 20ppm when used with boiling water. But it also states that some people with celiac disease have had a reaction to it.
Here is my question: Why the hell are you promoting it as gluten free when it’s got barley and it’s potentially not safe for celiacs?
Oh wait…don’t tell me. $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Story #4: Yesterday’s blog post was about a 19 year old woman (Mary) whose parents refuse to take her celiac disease seriously. The story itself was disturbing enough. But then Mary emailed me yesterday and said this:
“My older sister was diagnosed with lupus a few years ago so autoimmune diseases are clearly in my family. For some reason my parents understand my sisters illness but not mine.”
And that my friends is celiac disease in a nutshell; the Cinderella of autoimmune diseases.
Why? Because we’re letting it happen.
We’re flocking to the stores and buying the crappy, processed gluten-free food. Because we NEED to have bread still. We NEED to have muffins still. We NEED to have pizza still.
And because we keep buying it and there is money to be made, the vultures will come out and promote the “gluten free lifestyle” until a new fad comes along that they can profit from. And as long as the gluten-free fad is alive and kicking, celiac disease will never get the respect it needs.
So I don’t want you to open your window and scream that you’re mad as hell.
I don’t want you to stop buying the packaged gluten free food for good. We all need our treats and we all deserve to feel normal once in awhile.
But I’m begging you…please be the best advocates you can be. Get angry. Rise up. Make your voices heard.
It’s Celiac Awareness Month and 9 out of 10 tweets on my Twitter feed are people trying to sell me their food. But they hashtag it with #celiacawareness.
That’s not awareness folks.
Awareness is opening people’s eyes. Not emptying their pockets.
Thanks for listening.
Amen! Amen! Amen!!
And, THANK YOU!!
I will continue to advocate for all of us.
I go against the grain!
Against the grain is the only place to be 😉
Dude-
I hear you (*collective sigh*). It is so f-ing tiring. Why is this so hard?? I just think it is going to take alot of time and energy from all of us to do what we can to educate everyone we can to tell our stories. It is just going to take time. It sucks because I am not the most patient person in the world.
XO-
Jersey Girl
_____________________________________________________
[Drago has just entered the ring]
Paulie: Uh, Rock, you remember what I said about wantin’ to be you?
Rocky: Yeah.
Paulie: Forget it.
[exits the ring]
Rocky: Thanks, Paul.
Rocky IV
Thanks, as always, for the smile JG 🙂
Okay I’m so angry that I’ve written this twice and keep erasing by accident. So here goes again. Yes it’s all true. While I’m breaking my butt baking away I was approached by a huge investor to get these products everywhere. Hurray I thought. Great, we can get these products around the country and people with this disease will finally have something that is truly 100% gluten free AND nutritious. To only be told that if I wanted to TARNISH my brand with celiac disease then I would be poor. Then to go on and say to me “maybe you should be the spokesperson for the brand and leave the business to the business men. Go start a foundation or something”.
Really? I already have one and some proceeds from the bakery go to my Foundation For Celiac Education already! To make my week even more fun, I went to a restaurant that usually is safe for me until this new uninterested waiter started. I said very clearly what I needed and he rolled his eyes and went on with his evening. I then went to the manager and told him what had happened. He assured me he would handle it. Well no one did. I was in bed unable to move for 3 days! Sick as a dog! When I got the strength I went back to the restaurant and gave them a piece of my mind. They apologized. As I left I said you should hope I don’t write about this. Funny enough they have now called me a total of three times. That made me think, oh I get it, to say we are celiac isn’t really enough or even taken seriously but when I threaten your business then you care?
Sad folks, but until people are hit in their wallets they just don’t care. I’m proposing a new site that we start to begin to call out people and companies for their actions. BY NAME. Sad tactic but that’s what we are left with at this point. First person on list should be that doc that asked “what are you allergic too again”? Just NOT ok anymore.
And for me selling out, as I said I will close the shop and burn the recipes before ANYONE makes this about nonsense.
I thank Gluten Dude for keeping it moving while I’m busy running the bakery and don’t have a moment to blog.
Be well all.
Jennifer Esposito
Thank you for standing your ground. Sorry that people were such d**kheads that you had to do it but thanks just the same. Too many times people just cave or walk away rather than make a noise about what is wrong. I’m sure that eventually an investor worthy of your products will come forward. The tide is slowly changing and the reality of celiac disease is becoming more and more accepted. In the meantime, stay strong and carry on!
I want to thank both you Jennifer and you Gluten Dude for always being honest and open. Getting 100% gluten free baked goods with decent ingredients is hard and this Canadian girl wants to back you both in this fight!
Thanks tons Alicia.
@ Jennifer – while I think that he used a poor choice of words, I understand why he said what he said. Unfortunately, using any word that sounds remotely medical limits your market to those concerned with the medical condition. It limits the amount of $$$ you can make as opposed to making something gluten free and nutritious to sell to the masses – in my MBA classes we were quite frankly told that we should market our gluten free bakery as a BAKERY and just make everything gluten and nut free and not call as much attention to it, because the bulk of our profit was going to come from regular people wanting doughnuts, not from the celiacs who need the bread and other products we made.
Now, that doesn’t mean that I think what he said was excusable. I don’t. I think way more people now understand what celiac means and they’re seeking out the products any way. But right now, there’s not a lot of data to support our position and more to support his. Its all a matter of what you, as a business person wants to support. I applaud you for keeping to the long view of things and keeping the celiac safe label right up front, as opposed to going for the short buck to take advantage of a fad.
If it were me in your situation, if you do decide to go to the masses, hold them to the fire on celiac-safe food standards and nutrition and don’t let them try to sell you on selling to the fad. You’re a great example of a spokesperson and advocate that we need more of in the industry (as opposed to Gwenyth Paltrow and her “dairy free” recipes).
Connie bless your MBA & your professor’s lil heart (in that southern what a fuckin idiot magic eraser kind of way). This guy meant what he said & said what he meant…let us use your image & reputation then don’t worry your pretty little head about what we’ve put in it because we will send you a big fat check to buy pretty girl things with.
The label it bakery & just use best practices also shows someone slept through economics. Best celiac practices, special flours, dedicated equipment & packaging equipment increases cost many times 3 to 4 times “regular” bread. A celiac can’t have the “gluten free” made at the rainbow bread plant at 4 am MAYBE (but don’t bet your life on it) after someone hoses down the equipment to remove residue from the previous run you hope wasn’t wheat bread. Will these bandwagon jumpers cut corners…ABSOLUTELY!!! Because of the very point you brought up, label it gluten free bakery…it won’t matter if you write “made in plant that also processes wheat”, no one will notice…HA!!
I will pay $20 for a single meal I have confidence was made in safe conditions, with proper cross contamination protocols. I resent & get very angry when read “new gluten free recipe” & it contains barley AND malt. Ummmm what exactly do these people think GF is? When cost corners can be cut companies will, it happens time & time again even with trusted GF brands. The problem is this legally is assault, its intentionally adulterating food in such a way as to cause harm. Catch is no one has successfully sued a restaurant or maker for assault. Yeah there was the bread guy, but mislabeling isn’t as serious an outcome as food adulteration & assault adding criminal outcomes to this cost cutting bullshit. Until the gluten free label is USDA defined as celiac safe we are all in jeopardy.
Jennifer way to stick to your guns, there are investors out there that aren’t short sighted & that stupid
Perhaps we could create a site where we would be able to collaborate and not only “call out” the restaurants who are doing the GF poorly but also applaud those who are doing it well? There must be enough of us from across the country and who travel often enough that we could come up with a great database of safe places to eat. If such a site already exists, I am totally in the dark about it…
I use Find Me Gluten Free, Jess and I write reviews on there too.
Check it out! 🙂
If we all use it and post reviews that say “safe for celiacs and NCGIs”
would could build up a great resource..
sorry, the cat jumped in my lap and I meant to type this:
“we could”
LOL
Hi Irish Heart,
Thank you for the suggestion. I will definitely check out the site. You will see me on there are either Jess or Jebby or Patient Celiac (all names that I go by on various forums..)
Jess
Although it is improving in some ways. David Lebovitz posted something on his blog:
http://www.davidlebovitz.com/2013/05/gluten-free-baking-and-substitutions/
And there is more support among the gluten-free community, Udi has some chats with some smart ladies about celiac, about how to build awareness….
I do hate having to check labels for everything. And wish there was more gluten-free chocolate…
I feel this so hard… I’m frankly getting a headache.
Last time I went to a doctor, she cheerfully informed me that she too has celiac. She finally had the biopsy done and yep, it matched her bloodwork so I was in good hands and with a fellow sufferer.
She then proceeded to tell me the following:
1) EVERYONE in the office had decided that they must have either celiac or a wheat ‘issue’ and had gone, as a whole, gluten free.
2) Well. Mostly.
3) The doctor still buys Pizza Hut (which is so far from GF you can’t see it on a clear day standing where I’m marooned) for everyone because ‘really, she can’t live without her pizza and who can actually eat GF everyday, all day, without giving themselves little ‘breaks’ EVERY WEEK.
4) and the rest of the crew? All decided while of course wheat is evil and terrible and should be removed from everything because they read this life changing thing on Gweneth Paltrow/Oprah W/Dr Phil/Dr Oz’s website (kill me now) about how gluten messes up people minds and likely is the reason for war and killing people, it’s the wheat don’t cha know but…
5) they all picked ‘just one thing’ to keep eating (bagels, toast, pizza, cookies, pastry, etc) that they can ‘treat’ themselves to.. daily.
6) But they all have celiac.
7) And the doctor agrees with all this.
8) Because, after all, who can REALLY eat ‘just’ GF, every day, all the time?
9) Right?
I had gone with my mom, who was a bit… concerned when I finally got out of there into the car and started crying. Then laughing. But still sobbing. While laughing. I was diagnosed with celiac 4 years come June 17th. And while I’ve gotten glutened quite a few times by accident, I’ve ‘cheated’ twice. Once in a desperate attempt to deal with another issue (not to be gross, so I’ll simply say it was the frantic flushing effect of Long John Silvers or a garden hose. Or possibly a medically manned pneumatic drill. I was seriously bunged up.) and the other was also while already sick. I figured “Well, I’m already miserable… might as well have something that tastes good before I lose it again”. But beyond those moments – nada. Not even on the cruise I went on that literally had nothing I could eat for 5 days. I lived on soda and pineapple but didn’t dare touch a bite of anything else (I was not… amused with the cruise, it was a whole thing, but on the upside, no red bags.). And I’m not special. I can’t be the only one. It’s too much of my life to toss away to cheat. I don’t ~have~ 2 weeks to set aside to just be sick and foggy. I have things to DO. So I can’t cheat.
But damn it. The more I hear this, the more it is dissolving into just a trendy hipster thing, the more I begin to despair.
And really really really wish I could cheat. Because some days, I feel like the only one who isn’t and I just want a cookie.
I cannot believe that story Jenna. And I totally love your style.
Oh my God. That’s even worse than my internist’s reaction when I told him (12 years ago) that I’d been diagnosed with celiac disease by another doctor. “That’s great news!” he exclaimed. “It’s not like a real allergy! You can still eat wheat once in a while.” But for the doctor to claim she’s a celiac herself… pizza… ok… I’d better take a few deep breaths and calm myself…
Yeah… it was an, we’ll go with ‘interesting’ doctor’s appointment. And the ~last~ appointment I had there as well. I think the capping moment was when a nurse got really mad when she thrust a recipe card in my hand for a nutflour based cookie that she was insisting I make… and when I tried to say, quietly (because she was a friend of my mom and there was going to be serious follow up at home until I made the dratted thing) thanks but I’m also allergic to nuts – I got a stonefaced stare by both the nurse and the dr who passed by. The doctor looked at my chart, saw it was true (3 trips by ambulance due to ‘oops’es from family meals kinda shows a pattern) and frostily informed me that then I ~couldn’t~ have celiac. You can’t have BOTH ‘allergies’. When the dr referred to celiac as an allergy, I gave up. But to them, I had just proved I was being difficult. Ah well. At least I can be comforted by the fact that I got a clear “Nope, they are idiots and me saying I won’t be returning isn’t me not liking going to the doctor. Or, well. At least mostly that.” sign. But I start to get twitchy when I think how many folks will suffer for that stupidity? It took almost 20 years, from preteen on, of me being ill. Years of tests. Years of ‘maybe it’s this, maybe it’s that’ that boiled down to a lot of my years just… wasted. Thrown away, or rather ~flushed~ down the drain. I try really hard to not be bitter – but I’ve spoken to 3 different doctors who all confidently diagnosed me with a total of something like a 8 different ‘sure thing’ ailments – and they all admitted that they were guessing in the dark and actually it didn’t fit but they had to tell us ~something~ after all. And the moment that is permanently branded into my brain, if my not my soul, is the casual pause, shrug, and “Well, yeah. Obviously celiac was mentioned during things, but really, who can live like that so why would we bother with it?” Only the fact I was so stunned and rooted in one place in a moment of near incandescent anger kept me from doing something that would have caused me to go to jail. This person had known, or at least highly suspected celiac when I was 15. And had shrugged it off and basically stole a DECADE of my life because they figured it was too much of a hassle. I tried every ‘cure’, I swallowed gallons of barium and was scoped and prodded and poked for years and because it was viewed as a diet that couldn’t be maintained… eh. Why bother? I… I… as wordy (sorry ’bout this, I seem to more upset lately about this then I realized) as I can be, I keep having a line from Shakespeare run on a constant loop in my head: “I am amazed, and know not what to say.”
That… and a lot of rage if I let myself think about how casually my life was thrown away. I spent most of my life either IN the bathroom, RECOVERING from the bathroom, or desperately trying to FIND a bathroom. Years of being too ill to keep a job. Years of being so sick so out of nowhere with what felt like no rhyme or reason that ~3~ times I started college and had to drop out due to lost time being ill. My teens and my twenties – waved away and trashed because ‘why bother’. I’m working hard to get rid of the resentment, the anger, the fury. It’s tough. 5 months after my wedding, as I was wheeled into the operating room for the biopsy and a few other procedures while I was out -I had fought for 3 months to be checked and it was an absolute battle – my brand spanking new husband (he even still had the new husband smell/shine!) was told, after I was out cold that “This is just a formality because she simply won’t accept the truth until we do this – but you need to be prepared because this is going to be either advanced stomach cancer or advanced colorectal cancer and honestly… at the state it’s likely in, there isn’t going to be a lot of time”.
And when they were done and I was in recovery? The same dr stuck his head in the door, glanced at my husband who was in a serious state as he tried to absorb I was going to die and he was likely going to be the one to have to tell me… and the dr just shrugged and said “What do you know? She was right. It’s celiac. Huh. Weird. Really didn’t see that coming honestly.” AND SAUNTERED AWAY.
There are reasons this whole thing is making me twitchy. The above is a big one.
Sorry to babble, I think I’m still processing things. Thanks for the compliment on my style (although I’m sure you are dying for me to just shut up) I’m slowly starting to see if I’m a writer or just someone who likes words and… so nice to hear. I’m just glad I didn’t pull my usual trick – when upset, I rhyme. We’re talking the full Dr Seuss and none of it intentional. In moments of extreme stress, it’s been known to go on for more than an hour without a me catching I do it. Frustrating for ME but at least it keeps my husband amused while I rant!
Oh no, please don’t apologize for your detailed reply! That’s what’s so great about Gluten Dude–we can share things like imbecile doctor stories with understanding friends! And I think your doctor stories belong to a whole new class… They don’t know anything about celiac or food allergies, but they know how to send a big bill.
I really feel for you. I have little respect for or trust in doctors anymore. It took me about 20 years to get my celiac diagnosis, and, currently, I have some kind of neuro disorder that I was told two years ago was M.S. Now after my last MRI they’ve decided it’s progressing, all right… but it has a pattern that’s too weird for M.S. And they don’t have any idea what it is. During my travels to specialists in search of a diagnosis for the neuro stuff, I saw a neurologist at a major teaching hospital. She called me after having ordered a bunch of lab work. “You don’t have celiac disease!” “Huh??!!” (I’d been diagnosed 10 years before.) “I ran an antibody panel,” (which she hadn’t mentioned to me), “and you don’t have antibodies to gliadin. You don’t have celiac disease. You should eat wheat.” I then explained to her that all the gliadin panel would show was that I’d been on a gluten free diet for 10 years. It wouldn’t come back positive for celiac if I wasn’t consuming gluten. She then started arguing with me, insisting that that’s not how it works–and that she would know, since she is a doctor. I told her to consult Dr. Google, who’d lead her to others she might be more willing to listen to. In a huff as we ended the call, she urged me to “think about that negative test!” Of course, she didn’t have a clue about my neurological problem either. And, of course, I didn’t go back to her.
I also have several food allergies too, although not as serious and frightening as yours (I swell and get rashes, but don’t wind up needing the ER). I saw the Head of Allergy and Immunology at another major teaching hospital, a year before I was diagnosed with celiac, who told me that I couldn’t “possibly” be allergic to all those things and that I should–at once–go back to eating dairy and those other things and work on my psychological issues. To my eternal shame, I doubted my own sanity and, in spite of having been told by another doctor that I’m allergic to milk, took her advice and ate ice cream. And my throat swelled and I had a terrible rest of my day. She also, when I reported that it was obvious that I was having some kind of reaction to wheat, rolled her eyes at me and told me I “couldn’t possibly be allergic to gluten too.” She kept saying that people can’t have multiple food allergies. (Yeah… sure.) Another doctor finally diagnosed me with celiac a year later, after my health had deteriorated a lot more. It is really hard not to become angry and bitter. In your case, it boggles the mind that he actually thought you did have it, but didn’t bother to tell you ’cause, hell, who’d want to live like that! UGH!
Jenna,
Thanks for sharing your story with all of us…it has helped to motivate me to continue to try to increase awareness and improve knowledge about gluten related disorders among the medical community. One of my own friends, who is a physician (OB), very recently made a soup for me to be able to eat for a social gathering. She figured I would be fine eating it because she only added in a “pinch” of flour to thicken it up…..sigh.
Jess
Dear Gluten Dude:
I just read each of your stories. It sickened me to my core. After a few tears of anger I want more than ever to make our point across. That all of this situations are taken place; the questioning, the criticism, the ignorance blows my mind. How can we make people understand? What do we need to do to get the respect we deserve? I’ve written to Dr. Oz, to Dr. Sanjay Gupta, to The Doctors and waiting for reply’s. I written again to them and will not stop until they answer.
Now more than ever we need to promote awareness to this disease and Thank God for people like you and Jennifer. God Bless You, please count on me for any help.
Keep up the good fight…thank you.
Jennifer,
I am sorry this potential investor was so ignorant and kudos for standing firm!!. As I have said in the past, you’re an amazing celiac advocate and my admiration for you continues.
.
Someone else will come along. I do not buy that crap he said about “having celiac attached to it” will make it “tarnished”. I can think of several others who have products being marketed and they make no secret of the fact that they have celiac. This guy is just bullying you and he is wrong on many levels.
I wish I had the money to back you. I’d do it in a millisecond.
Hang tough, fellow warrior princess!
Dude,
I know it is easy for us all to get fuming mad about people who say and do ignorant things, but honestly, all we can do is continue to educate and enlighten.
I will be a celiac advocate for as long as I have breath.
My hubs put this up on my fridge exactly 5 years ago when we did not know what was killing me and no doctor was helping and I was having a hard time thinking life was worth living, but I would not give up.
“Sometimes You Have to Fight that Battle More than Once to Win It.”
It still rings true. We push on!
Never say die, kiddo. I don’t. 😉
My husband has celiac disease, and I’ve had to give up gluten because when I eat it, I get very painful hands and feet. I realize eating gluten won’t kill me, but it WILL make me miserable for several days.
I recently went to a restaurant with a group of friends, and was pleasantly surprised that menu items were actually labeled GF or Vegan! They even offered to substitute in gluten free bread for a dollar!
After asking the waiter about the ingredients in the GF bread (I’m also allergic to tapioca), I was visibly excited that I could eat something in a restaurant ON A BUN!
Imagine my surprise when the sandwich was brought out with the fries that came with it heaped all over the place, and as he sets it in front of me he says, “The fries aren’t gluten free, though.”
Really? you couldn’t have come out and TOLD me that first so I could get a salad instead?
For a restaurant that seems to embrace having gluten-free items, it was a bit disappointing that they would not take it very seriously. 🙁
Exactly, Gluten Dude. Good post 🙂
Every day I make sure that I refrain from spreading random misinformation about this stupid disease. This month I have taking a firm stand. I couldn’t hack 31 days and needed a weekend off, I get it, celiac doesn’t take weekends off… but I’m only human. Anyway, I am using my facebook to spend every weekday sharing information about celiac. Actual real information. Sometimes medical information about what people should do, symptoms, getting tested, etc. Sometimes information about how to be supportive and caring to the celiacs in your life. I know which half of my family I got my genes from, I see it clear as day. I just want them to be well. But I also want them to be aware because chances are they will run into other people with celiac in their lives and since they are all 2000 miles away I can’t spend every day beating celiac awareness into their heads.
I do though think it is positively abysmal that we can’t walk into a restaurant and say we have celiac and be take seriously. What do we have to do? Say we have a wheat allergy if we want any bit of care taken to ensure our safety. It is, in plain English, complete bullshit. This disease is every bit as serious and life threatening as an allergy. No, we won’t have our throats close up at the table and make them call 911 for us but that doesn’t mean it can’t kill us.
Know the last time I had a cupcake? My birthday. I’ve been cupcake free for 4 months. Yeah, I eat cupcakes but they’re for special occasions. I eat them for birthdays and celebrations. I also don’t cook my own damn cupcakes for my birthday because there is some sort of cosmic law against that. Sure, it took two extra dietary restricted medical conditions but I am pretty much off processed everything. (I have a thick head, what can I say?) For months though my packaged gluten free food purchases were always very minimal. At this point I only make 2 purchases of prepackaged foods and they are very minimal. I buy a bread that had 5g of fiber a slice, is shelf stable and preservative free. No, I’m not shitting you. And I buy pizza crusts and eat one every month or two, again preservative and crap free and these have to be ordered online from a company that started making them to help autistic kids. I strongly believe that it is the crap we buy that is the problem. The practically fiberless high GI bread full of holes. The gritty frozen pizzas that always leave us disappointed anyway. The 6000th frozen burrito that still tastes like crap.
[Nodding my head violently as I’m reading your comment]
That’s outrageous for someone like Jennifer Esposito to have someone say something like that to her. We NEED a voice—our voices to be heard. I can’t tell you how many times when I go to the pharmacy at Kaiser Permanente—-where I also have my gastroenterologist and my gyno doc, and my regular doctor. It states clearly that I have an allergy to gluten. I still have to ask them if its gluten free even though it states from these 3 doctors that gluten free medication MUST be dispensed. For such a “common” autoimmune disease to get treated like that, its positively criminal. We are outcasts. In cave man times we would not have to worry cause there was no grain consumed and we lived in hunter-gatherer society and not an agrarian society. We are treated like freaks of nature yet we still bleed red. I guess awareness means go down someone’s throat about it. Not really but its a thought. I want to say to people “F–k you, I’m Celiac!” Happy Celiac Awareness Month everyone.
That’s got t-shirt written all over it: “F**k You, I’m Celiac” Thanks for that, Claudia.
I’ll take a few! size Medium in red, green, yellow and pink, please.
Also, can we make one with “Celiac blows” with the cute puffy blowfish on it?.
(The Dude will have to put the little graphic here I sent him as I am unable to post that ) 🙂
I don’t cheat either! There isn’t time to deal with the effects of eating gluten for me to just have a piece of pizza here or a roll there. I’m finishing up culinary school and it is amazing to me how many people really don’t understand how detrimental gluten can be to some people. I’ve heard them explain that “all food allergies are very serious, except gluten, even if that’s a real issue for someone they will only end up with a slight bellyache.” I wish I was joking. I’ve heard more chefs says that gluten intollerance and Celiac Disease are made up than I care to admit.
But that’s one reason I think it’s great that I’m there. Not only will I one day be out in the foodie world making beautiful and gluten free dishes, but I’m also there to educate the educators. Now at least three chefs have seen exactly what happens when I or a fellow Celiac student get glutened. It’s pretty bad. I’ve actually had to leave at the half day mark before from being glutened in the morning session. As terrible as it is when I get glutened, at least there are chefs and students alike that can see how terrible it can be when even the slightest bit of gluten gets in my system. I frequently leave school with hives down my sides due to just breathing in flour, and yet some chefs don’t understand why I won’t eat french fries from the main fryer.
It’s a slow process, but hopefully one of these days there will be enough of us represented to let the world know just how serious gluten really is.
Amen!
I’m so sick of all the misinformation and lack of understanding. I’m sick of people (usually just casual acquaintances, but still) asking “So are you still off the gluten?!” I’m sick of people thinking I can’t eat dairy or that it’s not a big deal to have a little bit because it’s “just a stomach ache.”
So over it. I have life-threatening food allergies too, so it seems to confuse people even more that I avoid gluten even though it won’t make me go into anaphylactic shock like peanuts.
Thanks for continuing to educate, fight, and advocate for us all .
Ya know….. next time I get a life-altering disease, I’m going for a “cool” one. {{{facepalm}}}
Give me strength.
You want to know what the problem is? People like you are the problem. Less than 1% of the American public have celiac disease. Yet people like you expect the rest of the world to bend over backwards to accommodate your special needs. The world does not revolve around you. Why are you so concerned with what other people eat and how they live their lives. If you can’t eat gluten, don’t eat gluten. But don’t run around bitching and complaining about how hard it is for you. It only makes it that much more difficult for those of us who have to live with this disease who ate not selfish assholes. Yes. I have celiac.
Some of us “selfish assholes” expect things like restaurant staff who respect us and our dietary needs without mocking us or putting us in danger. Some of us “selfish assholes” expect our family to treat us like human fucking beings and not outcasts and hypo-fucking-condriacs after being sick for 30+ years. Some of us “selfish assholes” want more concern from a company than their bottom fucking line. Our lives are literally on the line. We all live with this and deal with it in our own way and if you don’t like the way GD and those of us who are a part of his community deal with it then no one is making you be here.
People like you are the reason why the rest of the world sees the majority of us suffering with celiac disease as a bunch of entitled selfish assholes. Because a small minority of us who happen to be the most vocal are entitled selfish assholes. Those of you who are almost gleeful in stating that our numbers are too small and will likely grow in the future, think about what you are saying. It’s like a blind person hoping the rest of the world would go blind too so that his own life will become easier.
Sarah, you seem to be ignorant of the fact that people with celiac disease and non celiac gluten sensitivity have higher mortality rates for ALL CAUSES than their non-gluten intolerant friends and neighbors. So, while gluten may not kill you immediately like an IgE allergy response (i.e. the kind that throws you into anaphylactic shock), it’s still killing you due to the added burden to your immune system. Inflammation, it is now believed, is at the heart of most diseases and celiac disease and NSGS are major contributors to systemic inflammation.
So anyone who gets upset that a waiter or a doctor dismisses their condition as serious or believes it’s not that important to stay 100% gluten free is perfectly within their rights to raise a stink. If you *aren’t* then you are hurting EVERYONE who has celiac disease or NCGS because you perpetuate the myth that it’s not a serious condition.
It’s just that those of us who speak out about this don’t appreciate companies that irresponsibly label food as “gluten free” when, in fact, it isn’t. That’s called false advertising. It would be illegal if the FDA ever got around to mandating what constitutes a “gluten free”product. We also don’t appreciate it when so-called medical professionals, ignorantly give bad advice about the safety of eating gluten in those who are diagnosed gluten intolerant or who are simply clueless about it all together. No one here has advocated that the rest of the world bend over backwards to accommodate us, just don’t dismiss our condition as irrelevant.
You say, “just don’t eat gluten”. Well, that’s the heart of the problem, isn’t it. How are people suppose to avoid gluten when manufacturers fail to properly inform consumers that their products contain it? We’re not asking every company to ensure that all their products are gluten free. However, if they’re gonna label it that way then it damn sure better *be* gluten free.
For the record, I chose to stay away from as much processed food as possible. I make most things from scratch using whole foods. It is time consuming and can be expensive and it’s taken me a couple of years to gradually work into this way of eating. So I understand perfectly how difficult it can be for folks, particularly those new to eating GF.
Mine is not a choice everyone can make. Because I live alone and do all my own cooking, I do pretty well most of the time. The times when it gets hard is when I’m dealing with social gatherings. At work, they get together several times a year and have food catered in, buffet style. I always abstain from whatever they have and simply eat my home made meal. For parties, I typically bring a dish I know I can eat but sometimes that may be the only thing on the menu that I feel is safe to eat. I’m fortunate that my friends and family take my diagnosis seriously and make efforts to ensure that there is something available to me that I can eat or will specifically choose a restaurant I know I can eat at.
That being said, there are things I miss (like a decent pizza). I also miss the spontaneity of being able to go to any restaurant on a whim. So far I haven’t had issues with the restaurants I regularly go to but then I’ve not been very adventurous since my diagnosis. There are a couple of restaurants I trust because I know that they have dedicated kitchen space for gluten free food prep or have been properly GiG trained. Some of the restaurants that I go to are ones that have had family members that were diagnosed with CD so they learned how to do it right. So far, I’ve only had a problem with one restaurant that I went to with my co-workers (not one that I typically go to). An appetizer came out that was being served to the entire group and when I asked the waiter about it, he assured me the dish didn’t have gluten in it (and it did). I didn’t discover it until after the meal was over and ended up with a killer migraine the next day (I’m NCGS, not celiac so migraines are my tell-tell symptom of accidental gluten ingestion).
No one here is “gleeful” that there is likely going to be a larger percentage of people being diagnosed, they are just stating the facts. You were the one who brought up the fact that *currently* only 1% of the population is thought to have celiac disease. However, we know that non-celiac gluten sensitivity is far more common than celiac disease which greatly increases the percentage of people adversely affected by gluten. Also, dismissively saying it’s only 1% of the population so they just need to shut up means that you’re telling over 3 million people that their condition doesn’t matter and doesn’t warrant being treated seriously. Celiac disease is more common that multiple sclerosis (which occurs in about 1 in 1,000 people), yet MS is taken more seriously by a lot of people. Therefore, I would say that your argument that the percentage of people with CD is too low to warrant a vocal advocacy is irrelevant.
So, before you go around name calling, better look in the mirror ’cause that’s who you should be directing your insults to.
The fact of the matter is, ten years ago, I could go into a restaurant, state that I was allergic to anything with wheat in it, including soy sauce, and be treated with respect. More and more, these very same requests are met with eyerolls, disrespect, and outright derision (it doesn’t happen often, but it does happen). I can attribute this change to the increased number of gluten free folks (celiac and not) who speak to waitstaff with entitled, demanding, and unreasonable requests. I am a restaurant owner, and can attest that roughly 10-20% of gluten-free requests come with entitled attitudes. It does not help our cause when people such as Shauna Ahern tell people to say “If I ingest one speck of gluten, I will become violently ill in your restaurant.” Promoting awareness is one thing, I am all for it. Promoting entitlement is quite another.
Then Sarah, we’re all on the same page. But the cause of the eye rolls your getting is not because of the “entitled” celiacs, whatever that means. It’s because of the bandwagon that gluten free has become and how so many treat it half-ass when it’s the way we survive.
I still don’t get how my post caused such rage from you. And I also don’t care.
If you discount the existence of “entitled celiacs”, you’re part of the problem.
Sarah, I find this comment difficult to believe.
“the rest of the world sees the majority of us suffering with celiac disease as a bunch of entitled selfish assholes”
really,” the whole rest of world??” I doubt that very much.
I am not sure why being extremely polite when I make a request at a restaurant is being “entitled” It’s no different than selecting a specific cut or beef or a bottle of wine. Do you find those people have an attitude, too?
I have never had a problem with any waiter, manager or chef accommodating my polite requests at all. I have had chefs email me and happily suggest things for me to enjoy.
I have only had one young waiter give me an eye roll when I asked to see his gluten free menu. I took that opportunity to tell him why I would appreciate him not doing that. ( and that’s was not me being entitled, that was me reminding him that it is his job to make his customer feel welcome.)
That’s called courtesy. He was apologetic and he learned the big difference between that “fad dieter” he finds annoying who asks for a gluten free menu and a celiac who would just like to enjoy a safe meal.
And what difference does it make if someone states his/her case to a waiter? what happened to taking care of the customer??
I’m going to leave a ridiculously generous tip for his service, not his opinion about my choices.
I was not demanding, I did not yell and my meal was handled without further fuss.. He even asked me a question about celiac later. Courtesy and humor always rules the day.
You’re a restaurant owner with celiac and you have this attitude toward someone else afflicted with it?. I would think if anything, you would be MORE empathetic and understanding.
I think Sarah just needs a big hug:
((((((((((((((( SARAH )))))))))))))))
You call in “entitlement” when someone is trying to express the severity of their reaction to getting glutened? I’m sorry but you have a messed up sense of what entitlement is. People only become adamant about letting wait staff know that they have to be extra careful about not serving gluten to them BECAUSE SOMEONE FAILED TO DO IT IN THE PAST! It’s not the celiacs and gluten intolerant who are making the wait staff indifferent to the severity of gluten contamination, it’s the yahoos out there saying “Oh, a little bit won’t hurt.” It’s the fad dieters who say they go off gluten to lose weight. When the public is getting those mixed messages, then they think that those of us who DO get violently ill if we get EVEN A SPECK OF GLUTEN are over reacting. We’re not. The fact is (and this has been proven via blood tests) a piece of gluten containing cracker 1/8 the size of your thumbnail can trigger an increase in gluten antibodies for up to 6 months after the incident. That’s six months of increased inflammation and, in celiac disease, 6 months of damage to the intestines.
Ah…a good old gluten-free smack down by Sarah Miller.
So people like us, the true advocates of our disease, who are trying to spread the truth about our disease…we are the a**holes?
I’ve just got one thing to say to that:
http://www.youtube.com/watch?v=3SGlVxU7NZQ
Celiac disease has quadrupled in the United States in just 50 years.
That 1% people spout all the time? Is an estimate, based on the number of people who actually can get a proper diagnosis.
That percentage is not accurate; it’s the just tip of the iceberg (according to celiac experts like Dr. Fasano)
and..
“The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009)”
This “celiac awareness moment” was brought to you by me, just
another one of those selfish a**holes with celiac who feels the need to educate and enlighten, although some days, she wonders why.
Can I get a Bombay Sapphire on the rocks please? man, the service here is terrible…. 🙂
Hey…I own the place and I can’t even get a drink. I’ll have to have a long talk with me to see how I can improve things.
GD I’ve got this franchise opportunity that will fix that…(shows product)coors light with handwritten & stuck on “now gluten free” labels. We can sell them for $16 each because they are now gluten safe (fresh out of regular packaging) :@
please do…and make it a damn stern “talking to” to that Gluten Dude guy 🙂
Oh, my friend, if we do not laugh, we surely would weep.
Cheers! slainte.
XXX
You know, I’ve had a fair amount of time this afternoon now that I’m not in knee-jerk dental pain reaction mode to think about this. None of us expect the entire rest of the world to bend to our needs. What we DO expect is that the people and companies who say they are providing things for us do so in a safe and conscientious manner. It isn’t too much to ask that coffee with barley in it not be marketed specifically to celiacs, as that is all kinds of irresponsible, dangerous and just plain moronic. It is nice to have a voice for us who can speak up and get some of these companies to take action. Some hurt us through ignorance, some through sheer stupidity and some through a sheer knowledge that they are putting our health in jeopardy but just don’t care. We, as a community, need to hold these companies accountable. We aren’t out to get the companies that aren’t saying they are catering to us, its the ones who say they are that are the problem. THEY SAY THIS! We don’t ask them to, or expect them to. They offer to the stab us in the back. We simple hold them accountable.
Hi, Sarah.
I think that Celiac Awareness is needed more today than it was when I first went gluten-free almost a decade ago. While hardly anyone understood Celiac Disease 10 years ago, now everyone thinks they understand it, but they don’t. IMHO it is much more dangerous to eat things now. It is as though every restaurant and major food corporation has jumped on the gluten-free bandwagon without truly understanding or caring how to provide it safely. I would rather be told we can’t accomodate your dietary needs any day than be told “Yes we can! We have a GF menu.” and then be sick and unable to function for two weeks because they don’t truly understand that it’s more than merely avoiding wheat as a ingredient.
I don’t expect anyone to accomodate my needs. I would be just as happy to tend to my own needs as I always have except these days thanks to a plethora of misinformation out there everyone assumes they can feed me because it says “gluten-free” on the box or came off Burger King’s gluten-free menu, etc. I am bone-weary from constantly explaining cross-contamination and why “made in a facility that processes wheat” means it may not actually be GF.
Waitstaff used to listen to me when I would express my need to avoid gluten, but now they just nod their heads and their eyes glaze over because they have a menu for that. I used to have two restaurants that had gluten-free menus and that I trusted. Now every restaurant has one and I still only have two restaurants that I trust.
In short, if we don’t make our voices heard on the difference being wheat-free as a choice vs eating GF to survive, then how will anyone ever know? How can we let people know that we can’t be placed in the same box as vegans, vegetarians, low/no carbers, etc? How can we impress upon those who are sick to get tested for Celiac BEFORE they jump on the GF bandwagon? How many will never get a correct diagnosis because everywhere they look there are books and television doctors urging them to go gluten-free because it will solve all their problems from hangnails to toe fungus? (Okay, I made that one up.) So, yes, we do get frustrated. And angry. And sometimes a little loud about it. That certainly doesn’t mean that we expect anyone to accomodate us. We just want them to quit advertising that they can accomodate us in order to increase their bank accounts when in reality they can’t.
Blessing to you, Sarah. I am sorry that this turned into a novel. I guess I needed to vent a little, too.
Really? Sarah, hon… I can tell you are either ill-informed
or
a spammer
or
not a celiac.
Sorry, but no fellow celiac would respond this way.
Your responses are “automatic”. You said the same thing already.
Keep posting if you want, but I am ready to respond–and enlighten.
I bust spammers and trolls all day long on celiac.com and I know one when I see one.
Miss Dee and Adalaide told you enough, but I can add to the discussion if you want.
I have all night.
.
Dude, you need a spellcheck option for those of us who type on tablets with two fingers and don’t go back and proofread. I do know how to spell “accommodate”..really. 🙂
yeah,MissDee, I keep begging for edit buttons, but he is slow to accommodate. 🙂
I heard that…
well…. good, finally! geesh, hahaha 🙂
My homework tonight is to write “accommodate” 100 times and write an essay on the importance of using the articles “a” and “an” correctly….next week I’ll address the agony of comma splices and how to keep the peace by having your subjects and verbs in agreement..LOL.
@GD – I agree with you! Can I add one more rant to the list?
Those of us who have corporate cafeterias (and schools, and parks, etc.) that are served by Sodexo are SOL when it comes to safe food. Even things that seem safe like basic rice and vegetables can be made with two bases – one that’s gluten free, one that’s not, and depending on which Sodexo program your place uses, they may be labeled gluten free … or not. The other programs use “wheat” as the allergen, so there’s plenty of stuff that contains gluten that is not labeled, causing dozens of people to get sick because of “hidden gluten”. It’s not right! If I hadn’t asked the chef on behalf of the dozen or so people at my work, a lot of people could be very sick. Now they know they have to ask about everything because we’re on the “wheat” allergen program as opposed to the “gluten” one.
And…the invasion of the marketers is driving me nuts. The thing with the vodka is a good example in the past week. Marketers are making people confused about things because they’re adding GF labels where things are completely unnecessary.
But…what I also want to say is we need to focus on what’s positive:
1. Red Apple Lipstick is making it in with the masses not only because its safe, gluten free makeup but also because it doesn’t use other unsafe materials in its construction. I have many non-GF friends who are using this great product!
2. While there is a lot of cheap, nutritionally junk GF food on the market, I can walk into any town with a Walmart and still find something small that I can eat. Even my ethnic grocery store is selling Bob’s Red Mills basic mixes. I’ve had to go into a town and had nothing to eat but deli lunch meat because they didn’t have a single other thing I could eat (including vegetables with bread loaves above, raining down on them…).
3. While there is a lot of junk GF food out there, there ARE places who are making the good stuff that is more nutritious and trying to do the right thing, like Jennifer’s bakery, many local bakeries, Surprisingly Vegan, Canyon Bakehouse, etc. because they know that food is a cultural thing and that there are always going to be situations in which we do need to have bread, buns, pizza, and cupcakes at and we have the right to have food that isn’t crap.
4. I love that for every five people do this for a fad, I find one person doing the gf diet for real, and I talk to them about becoming an advocate, just like you, GD. Ask questions of your local restaurants. Work with the pharmacy to get the training they need. Demand better food. Write and share with the world when things go right and things go wrong. Consumers are so much more powerful than they realize – their dollars count for a lot, and if they choose not to spend their dollars on something and take their five friends with them, it counts for a lot as the effect spreads.
5. I love that by the fact that at least because of its “fad” right now, a lot of people are “looking” at the gluten free thing and will talk to me about it like I’m not some sort of weird medical experiment and that I’m doing something real for my health. I can talk to them about genetically modified foods, why food is different than in 1950, and some advice before they take up the “fad”. I know a lot of people now who are gluten-limiting only because we’ve opened their eyes to how much gluten DOESN’T belong in their food. Note: I didn’t say they were doing the GF diet, but that they were starting to limit how much pasta, pizza, breakfast “products” and bread there is in their diet, and rotating through some gluten free products. My own parents went “gluten limiting” after I was diagnosed, and my mom and dad have both noticed increased energy, better health, weight loss, and lessened joint pain because they are eating better overall and eating a better variety of foods rather than wheat everything (they happen to really love quinoa pasta and millet-based bagels/energy bars from the local GF bakery).
6. People are starting to really talk about the virtues of food about fixing their health issues. I love that people mention proudly that they took up the “paleo” diet and that they feel better, that they “cured” their diabetes, and that their joints feel better. I love that they know what the whole30 is and are willing to try it. I love that there are restaurant where healthy is the norm and not faked a la salads at a Panera. I love that people are adding spices to their diet because they heard that they were anti-inflammatory and could help their health issues. Ten years ago if we were talking about this everyone would tell us to shut up and eat the McDonalds in front of us. People are telling me about how they try the pomegranate in the grocery store because they heard its healthy and easy. Or that the avocado commercials trumpet having a healthy tuna salad with chicken rather than guacamole and fried chips.
6. I may be friends with a strange group of people – I have friends who are on vegetarian, vegan, “fruitarian” like, pescatarians, paleo, Atkins, South Beach, gluten free, egg free, dairy free, sugar free, and fructose free diets (some with multiple conditions), but we have an abundance of markets to choose from: farmer’s markets, ethnic markets, regular grocery stores, big box stores, internet sales, subscription groceries, and even the occasional convenience store. We can choose to be healthy or have “junk” food. We can choose from a dizzying array of items, which can be good or bad.
There’s a lot to be thankful for, GD. For every person we turn into an advocate, the better things are going to be. I’m happy to advocate for my local people, but you’ve got an international blog. I’m really glad that you started to cover some positives as well as the negatives.
Thanks for the awesome comment Connie. Believe me I’m very aware of how things can come across negative. I’m really doing my best to not get dragged down.
I just found your site and I had to laugh and cry at the same thing. It’s like you’ve been reading my mind if my mind had a blog. Actually I might start a blog just to join you in your rants! That’s how inspiring you are with your rants.
We’ve been a gluten free household since the late 90s. The DH is a celiac and in the beginning it was me and a doggeared copy of Bette Hagman’s cookbook (RIP). While I’m grateful at all the options we have now that make my personal cooking life in the GF lifestyle easier, eating out has actually become harder.
I am blessed to be able to cook and don’t find cooking all that taxing. I understand that a lot of people are not this way and for this I’m sad and know that all of the convenience food is helpful. I get it.
We’ve never eaten out much since going GF. We just don’t trust the people back there…their jobs are busy and rough and their “give a shit” meter is pretty low. We have a few select restauarants in our area that we go to but even then, we do it sparingly. Celiac can be a very lonely and antisocial lifestyle.
I will leave the rants to you for now because you are saying it the best. I’m tired of all of the GF pretenders and Celiac dabblers who are ruining it for everyone else. I wish the fad would go away, even if it meant less shortcut items in grocery stores. We use so few of them now anyway so I would take it.
And I wish that those who are celiacs who choose to not follow the diet for whatever personal reason they deem credible in their heads would just STFU and not label themselves as Celiacs. If you aren’t going to follow the diet, then please don’t represent. You do us NO favors by confessing your diagnosis but then subjecting the entire world to how you aren’t going to follow this impossible diet and all of the reasons why.
GRRRRR.
My name is gluten dude and I approve this message.
And I will totally be stealing your give a shit meter line. I love that.
You may. 🙂 And it is the true barometer. People probably think we eat at foofoo resties because we are foofoo people. No, it’s because we’re hoping that the guy running the show back there is Old School French Trained regimented bastoid from hell who requires meez sliced and cubed to perfection and everything wiped down like surgery was being done on the quail to save it, not roast it. Is the guy probably crazy? Sure. If the crazy guy runs a tight ship of cleanliness and hires chefs of all levels that Give a Shit? Better for me/us.
I applaud you calling people out and leading the fight. A lot of us are tired. I spent many years training hotels that we stayed in what gluten free meant. A LOT. I had a chef tell me orzo was rice, not pasta. I had a chef at a 5 star hotel tell me white flour hot dog buns had no wheat. Frankly when gluten free became mainstream I thought my problems would be solved. I had no clue that it could actually be worse. Before some celebutard decided he/she needed to lose 3 more vanity pounds after their chili powder cleanse by deeming themselves gluten free, chefs thought that Celiac Sprue was a serious and unknown ailment. They listened. They wanted to learn.
The fad part of awareness has confused a lot of people. Now people are almost dismissive “yeah yeah we know…gluten free.” Those words scare me. Now when you post on a forum, even the anonymous roll their virtual eyes at you and link you to some post telling you your problems would be solved if you just ate at Outback, PF Changs and Dominos pizza. It’s like “DUH. Use the search function and look at all the places you can eat!!!!”
Drives me crazy. Now I have to hunt down some reputable person on twitter and hope they will clue me in to where THEY eat. The DH also does not eat dairy so seriously Kill Me. It’s like….gluten free vegan plus meat. LOL! ::headdesk::
I rant. I shall shut up now.
No, do not stop! I find you refreshing!
You’re doing fine! 🙂 I have always had a problem with what I call ‘the dabblers”…( and you can see that anywhere I post online)
May I suggest “Find Me Gluten Free”?
Real live celiacs giving restaurant reviews on that site.
I know I have done my share and I hope others will follow suit so we can build a solid list of safe places to dine out.
Being a celiac does not mean a life of being secluded.
Not at all.
I love Find Me Gluten Free!! It has allowed me to go out and eat like a normal person again!! The reviews are honest, and they are always happy to list new places that I have found! Sorry to jump on that band waggon, but just wanted to put in my two cents about that fabulous app/website!!
Thank you for the “find me gluten free” information. I know that the DH has some kind of app on his phone but I don’t know if it’s that one. I will have to go check it out. Finding celiac reviews are very important to me so sounds good.
Hmmm just did a quick 1 minute check of the site and I’ll have to browse it some more. Just for kicks I entered in my zip code and the first 40 restaurants in my area I wouldn’t recommend at all for safe eating. A few places have gluten free menus but the kitchens are disasters. I’ve called on some of them and they point blank say the kitchen is so busy they really can’t guarantee things won’t be cross contaminated. Cue. Eye. Roll! OK I will poke around the site some more…maybe I’m missing a heavily reviewed area.
You have to understand: those places listed in your area may well have :GF menus”,yes. but the REVIEWS are what count. Some will say “dedicated kitchen” or dedicated fryer” or “owner has celiac” etc. Those are what I look at and I read the reviews.If someone assures me the food was good and they did not get sick, well, I go for it!
I always say” I have celiac and I did not get sick” when I review, too.
Let’s face it —-we all want to hear that, right? 🙂
And I go by others who say something similar.
Look for 4 or 5 -star reviews and people mentioning their experiences.
It was very helpful to me when I traveled. Not a single glutening and believe me, I would have noticed.
Honestly, I avoid chain places, but those will be listed there.
Use your discretion.
Hope you find something! 🙂
Just as an FYI, there are a couple of smaller chains in my area that I do trust. One is Cooper’s Hawk which has a dedicated kitchen area for gluten free. A friend of mine who’s also gluten intolerant knows the architect who designed the restaurant where I live (not sure if the architect did just the one or if they did all the Cooper’s Hawk restaurants). Also the Biaggi’s restaurant near me has been GiG trained. Both have dedicated GF menus and I’ve eaten at both multiple times and never had a problem (and their food is pretty awesome to boot).
I can understand the anger but I don’t understand sometimes why you, Gluten Dude, don’t understand why all this happens? I have been gf for 8 years and all I can say is that the vast majority of people in the US (at least) are so incredibly stupid about food and have no freakin’ clue what they eat that it’s pathetic. You are dealing with a society so entrenched in denial about food making people sick and they are bolstered by doctors who don’t even know anything about Celiac because, again, it’s all about the food and no one wants to hear they have to give up anything.
And, yes, the money thing. Doctors make far more money symptom treating than telling people to go home and eat healthy and gluten free. This is the wall you are up against. It’s like trying to bring down the Great Wall of China. You are getting angry over trying to get people who only pay attention when Kim Kardashian is talking, to understand our disease. I think it’s a lost cause BUT I keep on plugging away when needed to make others understand and when they don’t, I chalk it up to extreme stupidity and walk away. I can’t win every battle. But I have dropped the anger because it just isn’t good.
What will make change is something that happened today. I am coming to a wedding in NJ over Memorial Day week-end and I did my song and dance with the restaurant where the reception will be. Told her that I just cannot eat from a buffet, due to cc concerns, even though half of the food will be gluten free….at least when it leaves the kitchen. I asked if my meal could be done separately….blah, blah, blah and you know what response I got? The caterer has a severe nut allergy, she totally understands cc and will personally oversee my meal and my concerns are important to her. Now, if we can just have a world where most of the people in the food industry have an allergy or intolerance, we are golden!
Hope I didn’t offend anyone but after 8 years of living gf and not minding it AT ALL, I honestly wonder if the general public will ever understand. The cost of medical care is going through the roof and I really think it’s food that’s making everyone crazy sick. Although, now that I think of it, when they develop a little pill that “cures” Celiac (ha, ha), everyone will then understand and want to be tested. That is all you will hear.
amen!
You are wise beyond your years Gemini. I do understand and perhaps I should accept it. But after building up for awhile, it tends to come out. For better or for worse.
She is wise and she has been my mentor and friend for 2.5 years.
listen to her 🙂
Awesome post! Its refreshing when people tell it like it really is.
But I also got a good laugh from this line –
“Now the company’s website claims that it has been tested and falls below the 20ppm when used with boiling water.”
It makes it sound like the boiling water somehow neutralizes the gluten!!!!
I ws diagnosed with celiac disease 3 years ago. I was less than 48kgs by then and could hardly move. So believe me I understand what you are saying and how hard it is to fight the awareness battle all the time. I do so by trying to explain what the disease is and how it isn’t to be taken lightly, but not everyone wants to hear it. I also used to get very angry at all the people on self imposed gluten free diets because it’s perceived to be healthy. But I have now decided they are doing me a favour. Why? I live in New Zealand. Population, just over 4million. Number of celiacs (assuming all are diagnosed) probably less than 50,000. However there are currently about 250,000 people following a gluten free diet. That means I can enjoy the odd pre-prepared gf treat and the local Thai takeaways know what I am talking about when I ask about gluten free. If it was left to the just us celiacs we would be comletely on our own.
As an aside – thans GF Dude, it is so re-assuring to have this site to come to. Everything I go through is covered here and it has made me realise that my odd and ongoing (I was told many times that I would be completely cured if I was diligent in my diet – yeah right! )symptoms are ‘normal’. 🙂
It’s the sad truth but money makes the world go round. The investor probably spoke from an economical point of view. Although what he should have said was, celiac disease is an autoimmune disorder that is incorrectly illustrated in the media and it will be our goal to change this!! But lets be serious, this would never happen… He doesn’t haven’t celiac and this would be of no benefit to him. Human beings can be selfish especially when driven by their own greed.
I think Jennifer Esposito should continue with her bakery and even though she may only cater to a small market, at least those customers will be loyal and return for food that is safe for them to eat :). I know I would.
With regards to the other stories, it sounds like pure ignorance. This is why we always have to read every label and check all the ingredients in products. At the end of the day, you have to protect yourself because you can’t be sure of other peoples intentions.
You rant, it’s totally justified. I do think the “trend” of GF doesn’t help those with celiac. I mentioned this on Alysa’s post, why is a nut allergy taken more seriously? Because you can die instantly? And barley in a GF product is wrong for so many reasons. New to your blog, love the passion.
FWIW…I’m not Sarah and I don’t know her!
Just in case any of you think I invented a new persona..nope!
Sometimes I get crabby…that’s it! I don’t dislike the Dude and I won’t be calling him any names!
“It’s Celiac Awareness Month and 9 out of 10 tweets on my Twitter feed are people trying to sell me their food. But they hashtag it with #celiacawareness.”
These lines especially resonated. Many companies treat it as a month of marketing, rather than awareness.
It’s all about the money. Always has been…always will be. I’m all for business…I run one myself. But there is a time and a place for everything.
I was at the pharmacy picking up some Ativan for the first time. I asked the pharmacist if it was gluten free. She said she didn’t know, but that there was no alternative. I said, “Well, it has to be gluten free or I can’t take it. I have celiac disease.” She said something to the affect of, “The amount would be so minimal if there was any that it likely wouldn’t bother you.”
I pulled out my cell phone and started looking. I found it to be gluten free. Thankfully. But, I felt like she didn’t think it was a big deal. Like it wasn’t important. She seemed annoyed to have to pull out her book of ingredients.
I’m tired of not being taken seriously either.
I’m tired of US companies labeling products gluten free without testing the products for gluten. I’m tired of non-US companies labeling their products gluten free once they’re in the states, especially when they’re not allowed to be labeled gluten free in their country of origin.
I had a similar thing happen with an antibiotic when I first went gluten-free. I asked if it contained gluten and the pharmacist handed me this sheet of paper that would take an advanced chemist to decipher and said, “Here. You can check it out.” I declined the medication and walked out to my car and called my daughter who is also a pharmacist. She called the drug company and had the info in less than 5 minutes. She also said that all pharmacists have numbers they can call to verify whether or not a drug contains gluten ingredients and regularly finds this info for her patients. I walked back into the pharmacy and told the pharmacist it was gluten-free and shame on her for not taking five minutes to find out. Even worse, the pharmacist was my daughter’s roommate for the entire time they were in pharmacy school.
On a side-note I went to a different pharmacy and asked the same question just to see what the response would be. The pharmacist checked on it and then told me there was no gluten in it. I switched pharmacies that day.
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